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BioMatrix Presents: The Community Playlist

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By Shelby Smoak, Ph.D.

A lyric from a favorite band of mine, Wilco, has always stuck out to me. When Jeff Tweedy sings, “I was saved by rock n’ roll,” I can’t help but think of all the ways rock ‘n roll has saved me.

It began with Billy Joel during my knee synovectomy at age 10. Music became the root for my recovery, and my growth throughout high school and college.

Music distracted me from self-infusion needle sticks and the half hours pushing in 60cc of clotting factor. It saved me from the pain of physical therapy when recovering from a total hip replacement, later a knee replacement, and from a traumatic month-long knee bleed. Music still saves me at 2 am when the pain of a bleed won’t let me sleep, or when I’ve been stuck in an ER for hours. And so, I let music save me, because it can, because no matter what pain I am in, nor what joy I may feel, it is there for me—always. I have come to realize my experience is not isolated. A plethora of our community members lean into music as their own, unique salvation: a balm to the hurt, a salve for the pain.

Through the BioMatrix Education program “Singing to Heal” which I often lead, I hear the same message about the power of music in other community members’ lives. Moreover, I am awed and impressed by the ways this suffering gets channeled into their musical creations, much like I do in my self-styled project, Bleeder, where memoir and music-creation blend. While we may not “write the songs that the whole world sings,” we may write the words our community can feel. 

Without further ado, I invite you to check out this community playlist of original music from people with a bleeding disorder. It’s been a pleasure to hear their songs, to feel their power, and now, to share them with you.

“busting out the darkstar >country trux”

Billy Conde Goldman (creature-blossom)

Genre: Experimental; Harmolodic Rock ‘n’ Roll

For fans of: Mr. Bungle, Frank Zappa, Mike Patton

Shelby’s take: Atonal saxophone, a vocal cacophony of hypnotic and recurring lines, marching snare rolls, haphazard melodies, and fuzz guitar chords make this song a late-night, coffee-fueled journey into post-modernism.

On having hemophilia A: “Of all the songs I have written since I was a kid, only one mentions hemophilia in word. That said, many songs express pain, loneliness, sadness, fear and anger in the music and the lyrics—all a result of having a bleeding disorder. My sense is such expression would manifest in my songs no matter what, as life can be a struggle independent of wellness. Life can also be joyous and I have experienced much joy from being a part of the bleeding disorders community. This is also reflected in my songs.”

To Find: Search Google “creature-blossom busting out the darkstar”

“That’s When I Love Her So”

Dave Colvin

Genre: Country/Folk

For fans of: Beatles, John Prine, George Harrison

Shelby’s take: A bouncy acoustic guitar, catchy vocals, and playful lyrics make this upbeat love song a pared down, perfect for your coffee shop, mid-afternoon feel-good moment. 

On having hemophilia A: 

“Basically since prophylaxis treatment, having hemophilia doesn’t impact my music. Back in the day though when giving “as needed” treatment, performances were always problematic. Now I can plan ahead and give factor the day of a performance if needed!”

To Find: Search on Spotify and Apple Music: Dave Colvin That’s When

“Keeping Up”

Shawn Decker Co-written with Kyle Wiggins (Synthetic Division)

Genre: Electronic Dance Music

For fans of: Pet Shop Boys, Depeche Mode, New Order

Shelby’s take: Arpeggiated synthesizers, distorted synth-bass rhythms, driving EDM beats, a tasteful application of keyboard melodies, and understated vocals make this track the perfect late-night club companion.

On having hemophilia A: “Embracing every aspect of my life is important as a songwriter, and my bleeding disorder is certainly part of the equation. Finding peace through adversity has helped me deal with some tough situations medically, and I certainly draw upon that theme quite often in my music.”

To Find: Search on Spotify and Apple Music: Synthetic Division Keeping Up

“Lend Me a Hand”

Spencer Duggan (Skydiver)

Genre: Alternative Rock

For fans of: Radiohead, Elbow, Doves

Shelby’s take: A soft-strummed acoustic guitar, ultra-clean guitar licks, rolling bass lines, jazz-esque drum play; the drift of falsetto vocals carry the song along like the ebb and flow of a quiet city night, lending this song the ideal track for drinks and a rooftop bar.

On having hemophilia B: “Hemophilia played a large part in discovering my love for music. It is a great way to reset my mind even when things are hard. I consider myself lucky to have it under control so I can keep making music for myself and my local chapter for years to come.”

To Find: Search on Spotify and Apple Music: Skydiver Lend Me a Hand

“Spratz”

Max Feinstein

Genre: Alternative Rock/Grunge

For fans of: Ween, Fountains of Wayne, Radiohead (Bends-era)

Shelby’s take: Infectious distorted guitar riffs, fluid bass lines, a driving chorus, energized vocals, and amazing studio production make this song a pool party instant hit.

On having hemophilia A: 

“Joint damage makes it physically difficult to play and has influenced the stylistic aspects of my songwriting. In addition to producing spontaneous bleeds, hemophilia can produce a lot of rage. We don’t want that rage to bleed out into the wrong places, much like bleeding into the wrong places. Music was the safest place to channel my aggression and in doing so, it became catharsis.”

To Find: Search on Spotify and Apple Music: Max Feinstein Spratz

“Remnants”

Trevor Graham (Organ Dealer)

Genre: Punk/Grindcore

For fans of: Napalm Death, PLF, Death Toll 80K

Shelby’s take: Adrenaline fueled angst, thick chugging guitars, propulsive bass lines, snare hits faster than you can clap, and screaming, deep throated vocals thrust this song at you; for half a minute, the song clobbers you with its punk-on-steroids energy.

On having hemophilia A: 

“It makes touring a little difficult sometimes, lots of standing which impacts the joints, then [there is] the trouble of finding a place to infuse.”

To Find: Search on Spotify and Apple Music: Organ Dealer Remnants

“You are Not Alone”

John Harrison (Jphono1)

Genre: Alternative/Indie Rock, Jamz

For fans of: Flaming Lips, Pink Floyd, Kurt Vile

Shelby’s take: Chill groove, in the pocket bass, 70s-feel guitar lines, fuzzed-out playful organ lines, and Pink Floyd-esque vocal delivery makes this a perfect sunshine, porch-time play.

On having hemophilia B: 

“It’s not a daily concern but have had internal bleeds that have forced me to cancel live events. Hospital visits and making sure there is factor in my fridge for emergencies. Creatively, it’s such a small part of my life it doesn’t come into play... but I imagine it’s in there in some ways I couldn’t identify.”

To Find: Search YouTube: jphono1 You are Not Alone

“Go-To”

Trevor Martin

Genre: Pop Country

For fans of: Kane Brown, Dan + Shay, Brett Young

Shelby’s take: Rolling piano lines, country-telecaster licks; immediate and intimate vocals, the incredibly hooky “Go-To” refrain lands this song somewhere between country ballad and R&B. A supreme listen for driving with your windows down and your hair blowing in the country breeze.

On having hemophilia A: 

“Having hemophilia really impacted me earlier on in life. It helped me discover that I really enjoy and have a passion for music. I am not sure I would have discovered that as quickly had I been playing football or another sport.”

To Find: Search on Spotify and Apple Music: Trevor Martin Go-To

“No Way Josè”

Robb McDowell (Louisville Lip)

Genre: Punk/Alternative Rock

For fans of: Social Distortion, Bad Religion, The Stooges

Shelby’s take: Distorted guitars, thudding basslines, locked-in pounding drums; throaty vocals with vitriolic angst drive this song into a high-energy, cathartic vent – ideal for blasting on a warm summer night classic car ride – top down, open and free.

On having hemophilia B: Having a bleeding disorder is probably one of the main reasons I got into writing music among other things. It’s a way for me to express my mood and how I’m feeling. I’ve never been one to talk about “feelings” so this was the best way for me to get things out.

To Find: Search on Spotify and Apple Music: Louisville Lip No Way Jose

“Be Mine”

Tamar Mitchel

Genre: R & B / Pop

For fans of: Justin Bieber, Chris Brown, Justin Timberlake

Shelby’s take: Hip-hop beats dipping into classic 808 tones, a catchy repetitive guitar line, a head-nod bpm, and tripped out vocals make this song a smooth ride for a late evening city stroll. Mixing soulful R & B with modern electronica carries this tune into sultry perfection.

On having hemophilia A: 

“Having hemophilia impacts my music by helping me have the drive to want better for myself and my family. It pushes me to be my best possible self and in doing so, helping others.”

To Find: Search on Spotify and Apple Music: Tamar Mitchell Be Mine

“A Collection of British Invasion Hits”

Bobby Murdoch (The British Invasion Years)

Genre: 1960s Rock

For fans of: The Beatles, The Who, The Zombies

Shelby’s take: The nostalgia of jangling guitars, bouncing bass lines, psychedelic keyboards, and familiar lyric sing-alongs make this cover band the ideal live show flashback. Infused with psychedelic hearts, these cover songs nail the 1960s vibe and ooze groovy, mind-bending bliss.

On having hemophilia A:

“Music has always been a way to forget about my bleeding disorder. It also motivates me to continue performing.”

To Find: Visit britishinvasionyears.com and click Videos

“Glide”

Cleaven Pagani

Genre: Alternative

For fans of: Radiohead, Elliott Smith

Shelby’s take: Delicate guitar picking, tasteful keyboard subtexts, and whisper-intimate vocals that ponder the burdens of life make this trimmed down song the end-of-night, goodnight, best-friend companion.

On having hemophilia A: 

“I write songs about my life, which includes living with a bleeding disorder. With this song, I attempt to describe how we glide through life encountering many crazy things. It could be a bleeding disorder, psychological illness, divorce, or other situation. We all have burdens to bear that can be unexpected and terrible, but everything is okay when we have someone we love with us.”

To Find: Search Bandcamp: Cleaven Pagani, Click Stargazer, 1st track

“Pain”

Shelby Smoak (Bleeder)

Genre: Alternative Rock/Shoegaze

For fans of: Radiohead, The Cure

Guest reviewer’s take: A medley of sound with a mixture of new wave alternative, grunge, rock, and indie. Sweet guitar intro with melodic back vocals and smooth bass guitar transitions into a blend of guitar and toe-tapping percussion and fills. The lyrics and message are unmistakable as it not only relates to those with a bleeding disorder but can resonate with anyone living with pain.

On having hemophilia B: 

“Music has always been a solace for me. It comforts when nothing else can. Writing music does the same thing. A song like ‘Pain’ gives voice to something hard to articulate: living with the chronic pain of hemophilia.”

To Find: Search on Spotify and Apple Music: Bleeder Pain

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Music, Health and Feeling Groovy!

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By Elizabeth Van Sant

The simple act of listening to music can have powerful impacts, but by actively making music, both your physical and mental health can improve tremendously.

When you listen to a song, various parts of your brain start lighting up. Your temporal lobe helps process tone and pitch while your cerebellum aids in processing rhythm and timing. Your amygdala and hippocampus also activate by tugging on your emotions and memories. These different parts of the brain work together to help you make sense of the auditory stimulus that is your favorite summer jam. 

If that’s already at work when listening to music, think about all the other parts of the brain that light up when you pick up an instrument or start singing. For example, your motor cortex goes crazy to help sweep a bow across a violin or move your fingers on a keyboard. I could get lost down a rabbit hole when thinking about how amazing the brain is when stimulated by music, so let’s instead dive into why music makes you feel the way it does.

Music and emotions are intrinsically entwined. Think back to this morning’s workout routine: Were you listening to music? Was that music upbeat or slow and contemplative? Chances are, it was “pump up” music that made you want to keep going. Had you put on a sad song you likely may have either a) quickly changed tunes or b) decided working out wasn’t in the cards for you today. If just listening to a song can evoke such reactions, pretend you’re now actively creating music. Suddenly, you have a new, creative way to express how you are feeling.

You may want to relax and unwind so you play some slow, meditative music. Or perhaps you want to process what you experienced during the day so you create something to evoke those feelings: it might be fast to evoke a hurriedness or anxiety you felt, or it may be incredibly slow to portray a sloth-like mood you experienced.

There is another huge impact for health—having a community! Being part of a band or choir is an easy way to create a network of like-minded individuals. This has been extremely difficult to achieve during the pandemic, but once people are able to safely gather and create music, I encourage everyone to join a group, or even just go see a show. The mutual love for music will likely lift your spirits in just a few minutes.

We’ve discussed the benefits that music provides for improving mental health, but did you know that listening to or playing music can also aid you physically? Let’s do an experiment: I want you to go on a walk and listen to music. Put your favorite playlist or album on and just walk. Now, notice your pace in relation to the music you’re hearing.

Chances are, you are matching your gait pattern to the tempo, or speed of the song. If your body can adjust and move itself to the beat, think about what it does on a deeper level. Your breathing and heart rates can also adjust based on the outside, rhythmic stimulus. This can be a game changer when it comes to chronic pain because it allows you to just be present with the music instead of putting focus on slowing your heart and breathing rate.

Now that you’ve read some of the mental and physical benefits that both listening to and playing music can have, I encourage you to turn up the tunes or pick up an instrument. Enjoy the creative process, and move your body to something groovy!

About Elizabeth VanSant, MT-BC
Elizabeth is a board-certified music therapist who primarily works with neurodivergent and disabled people in Seattle, Washington. When not making music, Elizabeth can be found on hiking trails, baking something delicious, or snuggled up on the couch with her cats.

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Video: Navigating Open Enrollment

Are you ready for open enrollment? Open enrollment occurs once annually and is the period of time when consumers can make changes to their health insurance benefits.

This webinar will provide information as it relates to open enrollment dates, insurance terms, key questions to ask, ACA plans, Medicare, TRICARE, COVID-19 impacts to insurance, plans and policies to be wary of, financial assistance programs, and more.

Please direct any questions related to this webinar by email to: education@biomatrixsprx.com

Thank you!

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Meet the Team: Terry Rice

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Terry Rice has been a lifelong advocate within the bleeding disorder community. He has served on the Board of Directors for local and national bleeding disorder advocacy organizations and was one of the original founders of the Hemophilia Federation of America (HFA) in 1994.

Throughout the 1990s, Terry spent significant time educating members of Congress in Washington DC regarding legislative initiatives furthering the interests of persons with bleeding disorders. Terry also served a two-year appointment as the community voting member on FDA’s Blood Products Advisory Committee. He has held various management and executive positions within the healthcare industry for over 20 years.

Terry is a person with a bleeding disorder and his passion is to empower people with a chronic illness. Terry earned his bachelor’s in chemistry and has studied master’s level economics concentrating in health economics.

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Disability Happens— Short- and Long-Term Disability

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By Shelby Smoak, Ph.D.

In the last BioMatrix News issue, we focused on Social Security Disability, a government-supported program available to you if you have worked and paid into the disability program and are dealing with a disability/injury that will prevent you from working for a year or more.

This article focuses on short- and long-term disability plans that are protective financial coverage for persons who become unable to work for, typically, a shorter length of time. While there are many differences between Social Security Disability and short- and long-term disability coverage, a glaring contrast is that SSDI in addition to financial support will also offer you healthcare coverage via Medicare should you qualify; short- and long-term disability policies, however, are intended for financial security only.

Can a Disability Happen to You?

Certainly, members of the bleeding disorders community may likely answer a resounding “YES!” but too often those same persons may lack the financial protection of a short- and long-term disability policy.

In America, 51.2 million people, over 15% of our population, have at least one disability.1 Automobile accidents account for 2.8 million disabilities per year while home accidents contribute to a disabling injury every 3 seconds. Every year 5.6% of Americans experience a short-term disability.2

A bleeding disorder does not exclude a person from being subject to the possibility of another kind of disability. In fact, having a bleeding disorder may likely compound a disabling injury or illness, lending the need for short- and long-term disability insurance more imperative. Remember, a bleeding disorder does not make you immune to other health complications.

In addition, many caregivers of persons with bleeding disorders may have become so focused on their loved one(s) that they overlook protecting themselves from the same disability potential. A survey done by the Council for Disability Awareness revealed that over half of American families did not have enough money in savings to cover three months of living expenses (the average length for a short-term disability).3

So, if you are injured and unable to work, whether this is bleeding disorder-related or not, what is your plan for earning income and paying bills? If you need surgery for a joint replacement or any other bleeding disorder-induced complication, how will you pay bills during your recovery period? Having a short- and long-term disability policy will provide income for any unforeseen injury or illness, inside or outside of your bleeding disorder.

What Is Short-Term Disability Insurance?

  • Short-Term Disability is a type of insurance benefit that provides some compensation or income replacement for non-work-related injury or illness that renders you unable to work for a limited time.

  • “Non-work related” is important because injuries that happen on the clock will normally fall under workers’ compensation policies.

  • Common reasons for short-term disability are pregnancy complications, herniated discs, cancer, accidental injury, surgery, and mental health challenges.

What Are Typical Short-Term Disability Policy Coverage and Rules?

  • While benefit payment is plan-specific, on average a short-term policy pays 50-60% of your earned income when you are unable to do your job for a short amount of time.

  • Premiums are based on age and annual gross income but are typically 1-3% of your earned income. A person earning $50,000 a year can expect to pay $500-$1500 annually for a plan.

  • Many employers offer plans, or you can self-purchase a plan at, usually, a higher cost.

  • These 5 states require employers to offer short-term disability policies: California, Hawaii, New Jersey, New York, and Rhode Island.

  • The definition of “disability” is plan-specific and can sometimes be ambiguous, so please read the fine print when signing up for a policy.

  • Policies can be valid for 30 days to a year but are typically intended for 6 months or less of use.

  • Benefits will end when your policy coverage period concludes, when your predetermined time period is over, or when you return to work.

  • If you are unable to return to work when a short-term policy terminates, a transition to a long-term disability policy or Social Security disability may be necessary.

What Is Long-Term Disability Insurance?

  • Long-Term Disability provides insurance if you are out of work for a long period of time: usually years.

  • While benefit payment is plan-specific, on average a long-term policy also pays 50-60% of your earned income when you are unable to do your job.

  • Premiums are based on age, occupation, and annual gross income, but are again typically 1-3% of your earned income.

  • Many employers do not offer plans, so you may need to self-purchase a plan. If an employer does offer a plan, it may not give the coverage you need, so acquiring a supplemental policy like AFLAC may provide more adequate financial coverage.

  • Policies are usually valid for 2-5 years, or until age 65.

  • Benefits will end when your policy coverage period concludes, when your predetermined time period is over, or when you return to work.

  • If you are unable to return to work when a long-term policy terminates, a transition to Social Security Disability may be necessary.

What Are the Basic Types of Long-Term Policies?

There are 2 basic types of long-term disability policies: Own-Occupation insurance and Any-Occupation insurance.

  1. Own-Occupation disability insurance defines a disability as an inability to work at your present occupation, even if you can work at another. For example, consider you are a truck driver but experience an illness that results in vertigo and partial blindness. You are no longer able to drive due to these issues. An own occupation disability would provide coverage for your inability to work in your present job—truck driver.

  2. Any-Occupation disability insurance covers you if you are unable to work at any occupation. In the example of the truck driver, an any-occupation policy would unlikely offer payment for job loss. While you may no longer be able to perform your normal daily work of driving, an any-occupation policy would consider you still employable as perhaps a dispatcher or some other non-driving position.

Ultimately, the own-occupation policy is more desirable since if you were to become disabled in any way, you would only need to show an inability to work in your present job, which can be easier to prove. These policies, however, are more expensive, or they just may not be offered through your plan.

An any-occupation policy is more common, is more affordable, but is sometimes harder to prove. If you were to become disabled, you would need to show that with your skillset and (lack of) ability you are unable to do any other kind of job, regardless of what your employment was at the time of your injury or illness. For the above example, it may be difficult to prove the truck driver is unable to do any other kind of work.

Should I Pay Premiums Using Pre-Tax or Post-Tax Dollars?

Deciding whether you should pay short- and long-term disability policies with pre- or post-tax dollars is a complicated equation. Basically, if you pay for a disability with pre-tax dollars, the taxes would be saved by you immediately, but would be taken out when you receive payouts from the policy; likewise, if you pay for a disability policy with post-tax dollars, you will see less realized income now, but your income would be greater upon the policy payout. Ultimately, you have to assess whether it is more important that you have additional money now by paying for the policy with pre-tax dollars, or later, by paying for the policy with post-tax dollars.

How Does Short- and Long-Term Disability Integrate?

A short-term disability policy typically offers coverage for 90-180 days, 3-6 months; the policy may have an elimination period of 0-14 days, in which case you would need to rely upon your employee benefits for financial stability. If you are unable to return to work when the short-term policy terminates, the long-term policy takes over at that 3- or 6-month mark, depending on the long-term policy rules. Long-term policies usually have an exclusion period of 90-180 days, about the length of the typical short-term policy. Once the long-term policy is active, the benefit duration is 2-5 years, or until age 65.

Will a Short- and/or Long-Term Disability Policy Provide Enough Income to Maintain My Current Standard of Living?

The hard answer to this question is no. Short- and long-term policies only provide up to 50-60% of your current income, so unless you are not using almost half of your income each year, the financial change will be felt.

Consider if a person (let’s call him Joe) is currently employed, earning $60,000/yr. but then becomes injured and must apply for his short-term disability policy benefits because he is unable to return to work. Before, Joe received $1150 weekly; with a short-term policy paying 60% of his salary, Joe will be reduced to $690 a week.

Luckily, Joe paid his premiums with post-tax dollars and will receive the full $690. Unfortunately, Joe does not recover, is unable to return to work, and his short-term policy is terminating. He must apply for his long-term disability benefits, which also pay 60%. However, Joe used pre-tax dollars to pay for his long-term policy, and thus taxes will be taken out of his payment. Joe is paid $690 weekly by his policy but 15% taxes are taken out, so Joe instead receives $586 a week.

Effectively, Joe’s disability and his inability to return to work have, in a matter of months, reduced his realized income from $1150 to $586 a week. Unless Joe has considerable savings or another form of unearned income (stock, for example), Joe would unlikely be able to maintain the lifestyle he enjoyed before the disability. This is the hard, grim truth. However, consider if Joe failed to secure short- or long-term disability policies, and instead of $586 would receive $0. Joe would likely be seeking government assistance via Medicaid or considering Social Security Disability, which would pay even less than a short- or long-term policy, but, moreover, may take a year or more for approval (see “Disability Happens” BioMatrix News Summer 2021). Without the support of a short- or long-term policy, Joe would be without any income or financial support.

Ultimately, BioMatrix nor myself purport to be financial advisors regarding the economics of a disability. BioMatrix, however, is deeply vested in the sustained care of persons with chronic illness, and I, as a person with a chronic illness, am deeply vested in the sustained support for myself and others as we navigate the twists and turns of chronic illness and as we plan for the unexpected. So while on one hand it is heartbreaking to hear about persons confronting a disability, on the other hand, it is even more devastating when we hear about the dire financial straits the disability precipitated. Short- and long-term disability policies are support mechanisms to soften those financial losses.

Hopefully, this piece has you looking into those policies, reaching out to your employer about policy options, or picking up the phone to speak to a disability policy expert. While these policies may leave your financial glass only half full in the case of a temporary or long-term disability, that, I think, is a much better prospect than an empty glass.

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References

  1. Council for Disability Awareness. “Chances of Disability.” Disabilitycanhappen.org. 

  2. 15% figure gained by 51.2 disabilities out of 328.9 million Americans, 2019 Census stat.

  3. Council for Disability Awareness. “Statistics.” Disabilitycanhappen.org.

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Northern Ohio Hemophilia Foundation “Rockin’ Cleveland!”

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By Shelia Biljes

Every city has a story, its very own history that locals take pride in and visitors come to marvel. So, what is Cleveland’s story? Well, it’s home of the Rock & Roll Hall of Fame and of the Cleveland Clinic Medical Center. That’s pretty cool!

It also boasts beautiful beaches on Lake Erie, the Terminal Tower, the Christmas Story House, and its cherished major league sports teams—the beloved Browns, champion Cavaliers and the former Indians, now Guardians.

All of that is a tourism bureau’s dream, but what about an organization less known to the masses, but oh, so very important to families with bleeding disorders? You would have to look over the Hall of Fame, past the Tower and beyond the stadiums to glimpse inside an ordinary building and find the Northern Ohio Hemophilia Foundation (NOHF), whose history is philanthropic, its place in the community it serves is treasured, and there is no admission charge!

NOHF has served the needs of the bleeding disorders community for over 66 years. Founded in 1954, it was just a social group of parents gathering in local venues, such as a library or someone’s kitchen table, to offer support as they struggled to raise children with hemophilia. From its humble beginnings to a quaint office, the chapter now serves 24 counties with over 300 members.

As a newly established organization, NOHF was funded by The Health Fund of Greater Cleveland, a non-profit that ran from 1959-1977 and covered 75% of the chapter’s operating costs. United Torch Services, later renamed United Way, took over the Health Fund in support of the chapter. The remaining costs needed to be covered by member fundraising, and the chapter rose to the occasion. The Rehab-Attic Shop was created as a way to meet the need. The shop sold second-hand items donated by chapter members and friends to raise funds.

The annual Hearts for Hemophilia event morphed into The Black and Blue Ball and is currently the largest fundraising event for the chapter. Organized yearly by Special Events Manager Dawn Evans, the event did not lose momentum even when due to COVID-19, it was held as a Zoom dinner and auction in 2020.

The Annual Meeting and Clambake occurred every fall throughout the 50’s and 60’s, evolving from park gatherings to meeting in hotel banquet rooms, eventually growing into an overnight stay to encompass enough time for education and socialization.

The Annual Meeting continues to this day with nearly 200 members gathering to learn more about ever-changing topics such as insurance, treatment options, joint health, and chapter and industry business.

NOHF is noted for its famous members: Jesse Schrader, professional baseball player famous for his 92 mph pitch, is a current member and uses his talents to work with children in the community. Randi Paltrow, Executive Director in the 90s, is the aunt of Gwyneth Paltrow. In 1997, Gwyneth honored Cleveland with a visit that generated chapter funds.

Several of the most honored members and friends may not be known to the general public but are greatly regarded in the hemophilia community nationwide. In the 1950s, Dr. Oscar Ratnoff, a hematologist at Case Western Reserve University School of Medicine, identified Factor XII. He also isolated blood proteins and found the blueprint for the clotting cascade. This research led to treatments we still use today. In the early 1970s, he also developed a way to identify carrier status. At the top of his list of accomplishments, he saved many hemophilia patients from contracting AIDS by following the connection between HIV and blood clotting factors, and warning of the risks early in the epidemic.

Another chapter member, Glenn Pierce, is known for his work with NHF and MASAC. Our very first Executive Director Ruth Saylor, 1957 until 1988, forged her way in the arena of advocacy and networking. She made each and every member feel special and valued, and even visited members’ homes frequently. She spoke at events across the country raising awareness on the issues most impacting the bleeding disorders community.

Today NOHF’s staff includes Executive Director Tanya Ricchi, Special Events Manager Dawn Evans, Program Manager Randi Clites and Administrative Manager La’Chandra Oliver. The team works diligently on behalf of all chapter members ensuring all available resources are accessible to those who need them. Among these resources are scholarships, emergency aid, medic alert bracelets, summer and family camp, educational dinners and events.

Tanya Ricchi shares her thoughts on upcoming objectives, “My goal for the chapter is to support our families through the times of change that are on the horizon and strive to find creative ways to continue providing meaningful and relevant education and support. We want to encourage and assist the members of our bleeding disorders community to reach their full potential.”

As a 24-year member, I am proud of my chapter and what it accomplishes on a daily basis. Tanya and her team move the community forward meeting the ever-changing needs of its members through specialized programs, scholarships, emergency assistance and more. The towers, halls and stadiums on Cleveland’s shoreline cannot outshine the meaning of strength and hard work of the Northern Ohio Hemophilia Foundation.

NOHF: 216-834-0051, info@nohf.org
https://nohf.org/

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Pharmacy Times Featured Article: Peer-Based Support as an Effective Paradigm of Care for Persons with Chronic Illness

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Data from 2018 suggest most US physicians spend between 12 and 28 minutes with their patients, with 1 in 4 spending less than 12 minutes.1 In many cases, these few minutes will be the only direct physician contact patients have for the year. Both patients and physicians agree that more time would be ideal; in fact, one survey noted that only 14% of physicians felt their visits with patients “offered all the time needed to provide the highest standards or care.”2

In this article featured in Pharmacy Times, our own Shelby Smoak, PhD, discusses how peer support can help fill this gap, reinforcing physician recommendations while providing ongoing support around education, access to care, adherence, psychosocial challenges, and assistance with general daily maintenance. Read the full article here.

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References

  1. Franklin, Remy. “Are Doctors Spending Less Time with Patients?” MobiusMD. 23 Sept. 2019. https://mobius.md/2019/09/23/how-much-time-do-physicians-spend-with-patients/

  2. Fischer, Edwin B, et. al. “Contributions of Peer Support to Health, Health Care, and Prevention: Papers from Peers for Progress.” Annals of Family Medicine. Aug. 2015. https://www.annfammed.org/content/13/Suppl_1/S2.

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Meet the Team: John Martinez

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BioMatrix is dedicated to making a difference in the bleeding disorders community. Our team of Regional Care Coordinators and Patient Care Specialists provide support that draws on personal experience and a genuine commitment to the bleeding disorders community. Our “Meet the Team” segment invites you to get to know our incredible staff a little bit better.

In this edition we feature John Martinez.

John Martinez is an educator, caregiver, advocate, volunteer and consummate professional dedicated to serving the bleeding disorders community. His involvement goes back to the mid-nineties when he and his wife set out to ensure families were connected with the right resources and support to navigate life with a bleeding disorder. That commitment continues to this day. John has a strong interest in helping families navigate care, especially those who do not speak English as their primary language. He and his family live in northern California where he remains very involved with the bleeding disorders community.

Tell us a little about your background.

Born in Tulare, California, I am the 4th of 8 children. My parents were migrant farm laborers from northern Mexico. When I was 8 years old, my family moved to Clovis, California, where my father attended an adult school to learn English, earned a high school diploma and entered an auto mechanic program. With his Journeyman certification, he spent well over 20 years working for the University of California. My parents greatly valued education as an opportunity to improve and create a new life. With that, I attended Fresno City College and the University of Phoenix, earning a Bachelor of Science degree in Business Administration.

Before working in the bleeding disorders world, I spent 19 years as a teacher at Clovis Adult Education (CAE), part of the Clovis Unified School District in Fresno County. After winning a federal grant that allowed CAE to open a community technology center in Fresno, I spent the next 12 years running the facility. Services provided included computer classes, English as a second language, job search assistance and a pre-school program.

What brought you to BioMatrix?

After 14 years of volunteering in my local bleeding disorders community, I was offered a position with a specialty pharmacy. A few years later at a national event, I met a BioMatrix care coordinator from Florida, and we struck up a conversation. I was very impressed with what he had to say about BioMatrix—the ethics, the value placed on teamwork and the dedication to the community. It piqued my interest and soon an official interview was arranged. I have happily been with BioMatrix for 2 years.

Describe your personal connection to the bleeding disorders community.

My involvement in the bleeding disorders community began in 1995 with the birth of our son, David. At 4 months old, I noticed the baby had a small bruise on his knee—it seemed to cause him some pain. At the next pediatric appointment, we discussed the bruise with his doctor, who, in an over-abundance of caution, recommended blood work and a knee scan. We watched as our son was poked and prodded and seen by several doctors. We were informed that David had an accumulation of blood in his knee that needed to be drained. We were confused but also trusted the physician. And so, a needle was pushed into his knee to relieve the pressure and we returned home. Within a couple of hours, we received a call informing us there was an irregularity with David’s PT blood work and we needed to come back to the hospital immediately.

After our son was admitted, a hematologist told us David had hemophilia. He gave a vague explanation that it involved coagulation needing intravenous medication and that a social worker would be arriving to talk with us. Since my wife’s primary language was Spanish, I asked for someone who could explain what was happening in her language. We waited for 3 days—apparently, no Spanish speaker was available. When we were finally home with our son, we began our own search for information and made appointments with a genetic counselor and a hematologist. Although our family members were supportive and tried to offer comfort, it was difficult to explain the seriousness of the diagnosis. As parents, we struggled to absorb the new reality for our son.

Two years after receiving the diagnosis for our first son, we welcomed our second, Daniel, who was also diagnosed with severe hemophilia A. This time, we knew more, but not as much as we should have.

After several years of limited access to information, we were finally made aware of the Hemophilia Foundation of Northern California. The first family event we attended resulted in a meeting with a well-known hematologist who helped us understand how to better advocate for our sons. That meeting led to a life-changing medication adjustment for our eldest son. He went from spending an average of 5 days a month in a wheelchair to never being dependent on one again. With new understanding and access to more regiment options, my wife and I began advocating for major changes in both of our sons’ treatments. With these changes, the boys began a life of sports—soccer, baseball, basketball and karate.

We began meeting with other families in the Central Valley area and sharing the information we had learned, especially with families who spoke Spanish. Soon after, we began coordinating educational events and support groups with the blessing of the Hemophilia Foundation of Northern California. We spent the next 14 years volunteering in the Latino community of the Central Valley area advocating for families such as ours.

My wife had dealt with bleeding issues related to her menstrual cycle since she was 12 years old; doctors always told her it was normal. After the hemophilia diagnosis for our son, we began questioning if she might have a bleeding disorder. At the time, we were told only boys could have hemophilia and that, at worst, she was a symptomatic carrier. Being unable to convince the HTC to test for a bleeding disorder, she discussed the issue with her gynecologist who then ordered the blood tests.

She was officially diagnosed with mild hemophilia A. In 2002, we welcomed a baby girl, Victoria. It took quite a bit of continual advocacy, but we were finally able to have her tested and obtained a diagnosis of mild hemophilia as well. With the experience of my wife’s undiagnosed bleeding problem and the struggle to obtain a proper diagnosis for her and for our daughter, the subject of women’s bleeding disorders and proper diagnosis has become an important issue to me. I am happy to work in a field that allows me to educate others about these issues.

Who is the most positive influence in your life, and in what way?

My wife, Leticia, has been a consistent and positive influence in my life since we met 30 years ago. She has always encouraged me to work hard and explore new avenues and challenges, including the ones eventually leading me to working with BioMatrix.

How do you feel you are Making a Difference?

Providing culturally sensitive and language-specific educational opportunities is of utmost importance to empower the Latino bleeding disorders community. I am Making a Difference by sharing my experiences and knowledge to help families better participate in the crucial decisions necessary for positive health outcomes.

What is the most cherished part of your job?

With the myriad of problems that can present themselves when living with a bleeding disorder, I greatly enjoy learning about new resources available to assist families. It is especially satisfying to work with the Latino community and be in a position to offer Spanish-language education and information to families who may struggle with the language barrier in medical settings. I am passionate about empowering families to improve the quality of life for themselves and their loved ones.

What advice would you give a newly diagnosed family?

When working with newly diagnosed families, I am a strong proponent of asking questions and exercising a parent’s right to understand their child’s diagnosis. The role parents play in making medical decisions regarding their child is absolutely vital. My advice to a new family is to keep asking questions. Get educated, and trust your instincts. Advocacy and education are key to providing the best possible life for children in the bleeding disorders community.

For myself, three of my proudest moments were watching my sons and daughter walk across the stage to receive their high school diplomas, bleed free.

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“New Knee or No New Knee?” That Was Once The Question!

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By Felix L. Garcia

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As someone born in the 1970s with severe hemophilia, I have experienced significant joint damage. With that, the question of joint replacement has come up. My parents faced this question for the first time when I was in elementary school.

At the time, the chosen course on my behalf was an arthroscopic synovectomy over the summer before entering middle school. That was fun… well, not fun, but necessary. It bought me a little time before actually having to get a full knee replacement. About 3½ years is what it yielded.

This was around the end of the 1980s and I was still not offered the choice of prophylaxis treatment to help extend the life of my knee. I know, I know… it sounds like the dark ages to young people with hemophilia and their parents. What can I say? There was life before prophy. Halfway through my sophomore year, my knee crumbled beneath me and there was no question – I needed a new knee. The question became, “How soon?”

Deciding on whether to have a knee replacement isn’t the only consideration. When becomes a big issue. In high school, I waited until summertime to have surgery so I wouldn’t lose a whole year of classes. That meant going to school and dealing with a lot of pain for an extra 3 months while getting around with a severely damaged knee, which meant more damage overall. We also have to look at our financial circumstances and whether the out-of-pocket costs could be afforded at that specific time. Financial issues can have lingering consequences.

Too often I hear from other bleeding disorders patients who put off joint replacement surgeries because they’re afraid the results will be worse than what they currently deal with. When it comes to knees, it’s easy for me to say, “Do it, do it, do it!” but not every joint is created (or re-created) equally. This has to be a well-thought-out medical and personal decision made carefully given all of a person’s mitigating circumstances.

An elbow may have other risks and options, and ankles are even more of a consideration because they bear the full brunt of a person’s weight, and the medical technology is not nearly as advanced as it is with knees or hips. The decision to have joint replacement surgery is a family concern. It will affect everyone around you. Of course, your doctor will play a huge role in your conclusion, but do not be too quick to put limits on who to include on your pre- and post-surgery teams.

Since my first knee replacement in 1991, I had my other knee done in 2014. However, that was not the end of my knee saga. The first knee I had replaced lasted me 25 good, long years—well outliving its 8-10-year expectancy offered back then. So, I once again found myself asking, “New knee or no new knee?” I’m a husband, father, grandfather, and still a son to my parents who were to be a big part of my care team. After living years with limits and pain, I still had some hesitation.

In my 20s, I worked in construction (not recommended for most with a bleeding disorder), and I took pride in building and creating. I found satisfaction in the sweating and working “like a man” (to fulfill the machismo in me). In time, things have changed and even though much of my work is on a computer these days, I still very much enjoy doing my own home improvements and repairs.

As time went on, my growing limitations had me calling on others to do the work for me, and it was a definite bruise to my ego. I know it’s old-fashioned, but as a husband, I still enjoy being the provider, protector, and Mr. Repairman to my wife. As a father, I miss not being able to keep up with my kids. As an employee with a job to maintain, I didn’t want to be less of an asset as I recovered. “New knee or no new knee?” The question reverberated in my head.

My biggest new knee advocate was my wife. She didn’t like seeing me in pain and frustrated all the time. She was with me through my last knee replacement when we were still in our newlywed stage. She knew what to expect. My children were also encouraging, promising to help. With teenage boys who normally don’t say two words in a row, that’s a big deal. Then there were my parents. The last time, they drove 300 miles to be by my side. They maintained the household and the kids and made the trip back and forth from their home to ours several times during my recovery. With all this heavy on my mind, the decision was made—it was time for a new knee!

There are a lot of ducks to get in a row before having any major procedure. Some of the tasks have to do with insurance coverage, providing proof of necessity, doctor’s schedules and availability, and the availability and preparedness of caretakers. Something many forget to consider in advance is their physical therapist. Meet with a therapist before the procedure. It’s important to establish a good connection and understanding with the person that is going to get you moving again and will be helping you achieve the desired outcome. It’s important to be on the same page when it comes to setting expectations. It’s very uplifting when your therapist views your progress as his or her own goal and is great at cheering you on.

Keep in mind even after the physical therapy sessions end, your personal commitment to improvement continues. My knee didn’t go bad all at once, and it will take some time to get it to where I’ll be satisfied.

Probably the most important thing and one that should never be left out of the preparations is to get in the right frame of mind. You will be the patient (repeat this to yourself). You will still be the partner, the dad, grandfather and son, but for this short time in your life, you will need to be the patient and allow others to help you. Let them.

Get it in your head your caretakers will want to take care of you. Get it in your head you will probably need some sort of pain management but understand it’s meant to be short-term. Don’t take what you don’t need. Get it in your head, this will be uncomfortable—even painful for a while, but it will be worth it to be out of constant pain.

Once you and your doctor have decided a joint replacement is the way to go, my recommendation is to set a goal and keep your focus on it. For one surgery, my goal was to be strong enough to ride my motorcycle again. For this latest surgery, I focused on being able to hike and play ball with my kids again. Whatever your objective, make it as big as you are willing to work. The bigger the goal, the longer it may take. One goal I had was to build a shed. Not one of those snap-together plastic things, but one for which I would have to pour cement. A trip to the store for lumber and materials, shaking the dust off my rusty old toolbox, my new knee and I were ready.

There’s nothing like sitting on the rafters of a roof you just nailed in yourself. I made and lifted the 4 walls myself, perfectly square I might add, then my son helped me attach the rafters and metal roofing. I finished the trim, installed a sliding door, and the job was done (I’m making it sound easier than it was).

As I sat on the roof waiting for my son to reload my nail gun, I realized, “This is why I had surgery.” I know everyone who has a joint replacement is not going to turn into Bob Vila (I had that skill set before surgery), but so many of us have things in life we have given up in exchange for fewer bleeds, less pain, and because we simply couldn’t do certain activities safely anymore.

Think about what that is for you and then ask the question, “New knee or no new knee (elbow, hip, ankle).” Lately, I’ve been hitting the basketball court with my boys for some much-needed cardio and just plain fun shooting hoops. It feels good. Thank you, new knee!

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Disability Happens: Social Security Disability (SSDI)

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By Shelby Smoak, Ph.D.

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Unfortunately, a life with hemophilia may become a life with a resulting disability. This was almost a certainty before modern-day therapies due to the crippling joint damage of long-term hemophilia.

Today, however, it may be something that one faces as a temporary necessity, perhaps after joint replacement surgery, as was the case with me when I had to have a total hip replacement and was unable to work for a year. Or perhaps, hemophilia having done its damage, the need for filing for disability may be more permanent. In either scenario, it’s best to know a few primers about disability and be prepared for the possibility. None of us, I believe, really want to declare ourselves disabled, but when we cannot work because of our hemophilia, we may have to lean into Social Security disability benefits for our health and our life.

What is SSDI?

SSDI provides assistance to persons with disabilities. SSDI will pay benefits to you and certain family members if you are “insured,” meaning you worked long enough and paid Social Security taxes. SSDI recipients also become Medicare eligible after a 24-month waiting period.

Can I apply for SSDI? 

SSDI: Apply if your condition has worsened, and you expect your medical condition to last a full year or longer.

I say: Bleeding disorders don’t necessarily “worsen,” but the resulting arthropathy and joint damage does, so if you are facing disability as a result of a bleeding disorder, you are likely experiencing the effects of the bleeding disorder “worsening” (arthropathy), but not necessarily the bleeding disorder itself. Therefore, your application for disability will need to involve the hematologist and an orthopedist who in tandem can verify your situation.

When I applied for disability, my hematologist provided the bleeding disorder verification and necessary lab work, and the orthopedist sent the reports and assessments about my joint damage that became more valuable within the process than the hematologist’s.

SSDI: Apply if your condition is severe enough that it keeps you from doing a substantial amount of work.

I say: In some cases, developing an inhibitor might trigger the need for disability in which case the bleeding disorder itself would be the cause of an inability to work. In other cases, the condition keeping you from working may instead be joint damage. These become important distinctions you will need to understand in your application process.

Keep in mind, employees at the Social Security Administration may not have an intimate knowledge of a bleeding disorder and/or understand its long-term effects. If joint degradation is the cause of your inability to work, keeping a steady emphasis on joint damage will help your interviewer better understand your situation. An inability to walk without assistance would keep you from working but having a lifetime of knee bleeds would not necessarily lead someone to draw the same conclusion. Moreover, in my application process, when I continually referenced my hematologist and my bleeding disorder it confused the interviewer since I was facing orthopedic hip surgery and NOT a pending bleeding disorder issue. Nearly all of the interviewer’s questions were about the orthopedist’s notes.

SSDI: Apply if you have worked 5 of the last 10 years and paid into Social Security.

I say: Past work is a requirement of receiving SSDI. It varies on how Social Security may assess your past work experience, but it is necessary. Your jobs pay into Social Security, making you eligible for those benefits. If you haven’t worked and therefore not paid into Social Security, you would be ineligible for benefits. If you are facing a disability and you have not worked and paid into Social Security, Supplemental Security Income (SSI) may be an option.

SSDI: Do not apply if your doctor doesn’t believe your condition will prevent you from working.

I say: Full support of all your physician(s), especially your hematologist and/or orthopedist is essential to the process.

SSDI: Do not apply if your condition is expected to be temporary (a year or less).

I say: This was a bit complicated for me as I was facing surgery which would see me recover in about a year and would, therefore, be temporary; yet I had no way to support myself financially during that time. Short and long-term insurance policies were not offered through my employer and were cost-prohibitive due to my HIV and hepatitis C. I was caught in a tough spot, but working with my physicians and the HTC social worker, I applied.

In my application, the orthopedist included evidence of ALL my joint damage, which became important in explaining the disability as lasting longer than a year. If the orthopedist had only sent evidence of my hip’s joint damage, the case may have never been approved since it was understood that the joint was being replaced and would, ostensibly, end any disability I had due to the hip.

It then became important to show the compounded impact of damage to multiple weight-bearing joints. This is how the approval was finally given. I only received SSDI for the year which it was needed. Once my joint was replaced and I was able to return to work, my disability claim ended.

SSDI: Do not apply if you are able to earn more than $1310/mo.

SSDI: Do not apply if you haven’t worked enough to be eligible for benefits.

I say: Both statements are as declared. In my case, I had been a full-time teacher for many years before my application and was eligible.

What additional criteria must be met to be eligible for SSDI?

SSDI: You must have a definitive lab test establishing your bleeding disorder and/or a physician signed report testifying to your condition.

I say: Simply having a bleeding disorder does not qualify someone for SSDI, but having proof of a bleeding disorder diagnosis is essential in the application process.

SSDI: For determining a disability, you must have had bleeding/clotting complications requiring at least 3 hospitalizations in the last 12 months. Further, the hospitalizations must have been at least 48 hours (which may include time spent in the ER) and be at least 30 days apart.1

I say: Remember, these criteria speak to the bleeding disorder only and would be relevant to cases like inhibitors and/or specific bleeding complications. My application - and most of those with hemophilia - would be a result of arthropathy and joint damage as the disability cause. These criteria will likely take precedent over your bleeding disorder. In fact, according to the CDC, arthritis is the most common cause of disability among adults; arthritis is a form of arthropathy or joint disease, and many physicians use the two terms interchangeably.2

SSDI: If your bleeding is relatively controlled and you do not meet the above criteria, you may be eligible based upon other factors, noted as “repeated complications of hematological disorders.”3 A person would need to show severe limitations in one of the following: performing daily living activities, maintaining social functioning, or completing tasks in a timely manner because of problems of pace, persistence, or focus.

I say: Today, many people with bleeding disorders are on prophy regimens to control their bleeding, so it seems SSDI is opening the door to the arthropathy (“repeated complications”) that would make someone eligible for disability. There may be other situations as a result of having a bleeding disorder such as repeated brain bleeds, which may impair cognition and/or motor function.

SSDI: Social Security will determine if you are unable to return to any of your past jobs or any other jobs based on your age, education, work experience, and functional limitations caused by your bleeding disorder.

I say: Social Security may investigate your work opportunities and determine if you are indeed unable to continue in your present job or find another type of work. At the time of my application, I was a teacher and my daily presence in the classroom was required, something I could not physically do. This was before online classes and Zoom, so the physical demands of my job and the limitations of my arthropathy prevented work. However, in today’s world of online classes, there may have been other work opportunities I could have pursued, and which may have prevented a disability approval. But that is only speculation. Others have shared that having to rely on crutches or having to use a splint several times a month turned out to be the reason a disability judge finally approved the application.

What are the SSDI benefits?

SSDI: Typically, SSDI provides a monthly check based on age, income, number of years worked, and projected retirement date, paying about 40% of pre-retirement income. The average monthly benefit for disabled workers is $1258 in 2020.4 After 24 months, you will be eligible for Medicare.

I say: My prior year pay stubs were provided, which were then averaged and equaled about 40% of that total income. It’s important to know the amount is not simply based on your last paycheck but the year. If you changed jobs within the year with significant salary differences, consider the average as you work out your budget.

You will need to secure insurance while waiting for Medicare. Ending work is considered a qualifying life event for eligibility for an ACA plan. You would also likely be eligible for subsidies to help pay for the insurance, especially if you were now out of work, too.

How long does it take to receive SSDI benefits?

SSDI: It will take 3-5 months to get an initial decision.

I say: It takes a long time. Plan for about a year before approval and then benefits to be received. My approval took 10 months; however, I was exceedingly organized. My paperwork was sent within a day. I communicated immediately with all my physicians and pressed them to submit required reports and signatures, and I was prompt in scheduling my interview and follow-up meetings with Social Security. Even with that, my initial application was denied. I appealed, which added time.

In the appeal, Social Security requested an additional set of x-rays from their approved radiology center. I called immediately and still had to wait several weeks before the appointment. Once these x-rays were completed, it still took another 3 months before the approval arrived. Social Security may also ask you to schedule appointments with their doctors who may have limited knowledge of bleeding disorders. Any delays with paperwork, callbacks, and appointments will only lengthen the time to process your application.

What are the top reasons SSDI claims are denied?

  • Lack of hard medical evidence. Doctor’s notes, medical records, exam notes, and test results are vital.

  • Prior denial. Restarting a new claim for the same condition does not work. Appeal the original denial.

  • Your income. If you are working and earning more than $1310 a month, you may get denied.

  • Failure to follow treatment.

  • Failure to cooperate. The requested paperwork must be provided, and you must show up for medical exams.

What should I do if my SSDI claim is denied?

  • Appeal the denied claim. Do not restart a claim. This will only add time and confusion to the process. My initial application was denied. I appealed that claim and was eventually approved.

  • Do not become discouraged. I have heard from others that the process can take even up to 2 years and that an initial denial seems to be part of the process.

  • If a second denial is received, consider contacting an advocacy organization familiar with Social Security disability or an attorney to help further your case. Patient Services Inc. (PSI) deals with many bleeding disorders-related SSDI cases and is available to the bleeding disorders community.

How will I earn income while waiting on SSDI?

This is tough to answer because these are unusually difficult times; in addition to the health complications, financial obligations can intensify the stress of this change. Having short-term and long-term disability insurance policies are meant to serve as buffers during these periods. Outside of that, your income options are limited, especially if you do not have substantial savings to fall back on.

Can I earn money while on SSDI?

Yes. The Ticket to Work program helps the disabled get back to work. Beneficiaries can work a 9-month trial period and receive full benefits. You may receive benefits in any month you earn less than $1260 (2020 figure). If you earn more than that, benefits will end.

How long may I receive SSDI benefits?

SSDI benefits will be received as long as you are disabled and unable to work. At retirement age, benefits won’t stop. The name changes from “disability benefits” to “retirement benefits” but the amount remains the same.

Hopefully, many questions regarding Social Security Disability (SSDI) have been answered. Traveling the path to applying for SSDI is often difficult—physically and emotionally. Please free to reach out to education@biomatrixsprx.com with your questions.

In our fall issue of BioMatrix News, we will examine the topic of short and long-term disability. Stay tuned!

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References

  1. Social Security. “Disability Evaluation Under Social Security: 7.00 Hematological Disorders—Adults.” ssa.gov/disability/professionals/bluebook.

  2. CDC. “Disability and Health Related Questions.” CDC.gov. 16 Sept. 2020.

  3. Hotfelder, Aaron. “Is Social Security Disability Available for Hemophilia or Other Bleeding Disorders?” Disability Secrets. Disabilitysecrets.com.

  4. SOURCE: Hartman, Rachel. “6 Frequently Asked Social Security Disability Benefit Questions.” U.S. News & World Report. 19 Oct. 2019. www.money.usnews.com

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Quality of Life (QOL) – How It’s Defined in Healthcare, How It’s Measured, and Why It’s Important to Monitor

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At BioMatrix, we are committed to improving quality of life for patients and producing positive outcomes along the healthcare continuum. This article discusses how quality of life (QOL) is defined in healthcare, how it’s measured, and why it’s important to monitor.

How is quality of life (QOL) defined and influenced?

In 1948, the Constitution of the World Health Organization defined health as “a state of complete physical, mental and social well-being.” This was a departure from the tendency to see health only in terms of the presence or absence of disease.1 Today, QOL in healthcare is still defined and broken down by three domains, or ‘perceptions of health’.2

Physical functioning: symptoms resulting either from the disease itself or from treatment and the ability to perform a range of daily activities

Psychological functioning: ranges from severe psychological distress to a positive sense of well-being and may also encompass cognitive functioning

Social functioning: quantitative and qualitative aspects of social relationships and interactions and societal integration

Within these three domains/perceptions of health, QOL is influenced and determined by many factors. Over the past few decades, medical outcomes researchers and medical sociologists have categorized QOL determinants as:3

1. Health-related
2. Sociological and economical

Each of these domains can be measured both objectively and subjectively.

Health-related Parameters

When defining and measuring QOL, health-related parameters need to be both provider and patient reported. While the objective health status of symptoms is recorded by a physician, this fails to describe the patient’s tolerance and discomfort for these symptoms. Two people with the same health status may have very different expectations regarding health and the ability to cope. These differing expectations can greatly affect a person's perception of health and satisfaction with life.2

Patient reported parameters are important because patients have the best perspective on the impact of their treatment. They experience first-hand the physical and financial burdens of treatment that may also affect their adherence to treatment and other provider recommendations.3

Sociological and Economical Parameters

Overall QOL may be strongly influenced by factors that are unseemingly related to health, such as economic status, employment status, and family situation.3 Again, there is both an objective and subjective component. For example, financial burden may decrease a patient’s adherence rate, objectively making treatment less successful while a stressful family situation may subjectively and negatively alter a patient’s perception of their treatment outcome.

How is quality of life (QOL) measured?

Though QOL should include both measurements of objective and subjective (perceived) components (symptom, condition, or social role), the subjective (perception) of improvement by the patient and a greater sense of well-being due to an improved self-image may actually be the most relevant therapeutic benefit.2

The EQ-5D-5L Questionnaire is an instrument that measures these components and weighs them accordingly. It’s a preference-based descriptive system with one question presented for five dimensions: mobility, self-care, usual activities, pain/discomfort, and anxiety/depression. It also includes a Visual Analog Scale (VAS), where perceived health status can be reported with a grade ranging from 0 (the worst possible health status) to 100 (the best possible health status).4 EQ-5D can be used anywhere a general measure of health status is useful such as clinical trials, population health surveys, or routine outcome measurements.5 Guides on how to fill out and report results for EQ-5D can be found here.

Why is QOL important to measure and monitor?

Understanding patient QOL supports a more well-rounded, higher quality of clinical care to patients. QOL data has helped further clinical care studies, clinical trials, and cost-effectiveness studies in these four areas:3

  • Assessments of treatment outcomes and to qualify survival—both between provider and patient, and for FDA drug approvals

  • Assessments of late problems—i.e. mere survival gain to survival gain accompanied by a health-related QOL comparable to that of the survivor’s peers

  • Mortality Predictions—i.e. ample evidence now indicates that health-related QOL measurements independently predict survival

  • Transfer of Patient Information—i.e. through QOL surveys given to patients while waiting for their doctor visit, doctors can gain a greater amount of data on their patient

QOL assessments can also help inform treatment plans by answering questions such as:2

  • What will the effect of a treatment plan be regarding day-to-day quality of life and long-term complications?

  • ​​Are relatively small gains in survival for a patient with a limited life expectancy worth the reductions in their QOL due to aggressive long-term therapy?

  • Do cost-containment programs for employers, such as high-deductible insurance plans and shifting more costs to employees, actually increase employer costs due to decreased functioning and productivity of employees?

Why is QOL important to measure and monitor specifically in Specialty Pharmacy?

Specialty pharmacies, like BioMatrix, have the opportunity to improve future QOL outcome metrics, thus enhancing and improving the patient experience. By quantifying QOL, specialty pharmacies can:

  • Allow individual patients to collaborate in their own assessment and, ultimately, decision-making in the healthcare they receive

  • Help minimize costs associated with the treatment of costly severe chronic disease

  • Determine the impact of health care when a cure may not be possible


Specialty pharmacies can use QOL data to collaborate with providers which helps:

  • Minimize the risk of patients incurring harm

  • Increase the probability of providing treatments that may improve symptoms associated with chronic incurable diseases

  • Minimize the cost impact of treatments to patients, providers and institutions (i.e., insurers, state, and federal government)

At BioMatrix, we use the EQ-5D-5L questionnaire to measure and help improve QOL and help empower patients to live each day to its fullest potential. We set the standard for exceptional care maximizing the health and satisfaction for each patient served. Learn more.

In summary, quality of life (QOL) in healthcare is weighed heavily by patient perception of both their objective and subjective well-being. While it’s measured and monitored through complex questionnaires and reporting, understanding QOL is incredibly beneficial in supporting a more well-rounded, higher quality of clinical care to patients.

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References

  1. Croat Med J. (2006). The Meanings of Health and its Promotion. NCBI, U.S. National Library of Medicine. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2080455/

  2. Testa MA M.P.H. Ph.D., Simonson DC M.D. (1996). Assessment of Quality-of-Life Outcomes. The New England Journal of Medicine. https://www.nejm.org/doi/full/10.1056/NEJM199603283341306

  3. Schwartz CE, Sprangers MAG. (2003). An introduction to quality of life assessment in oncology: The value of measuring patient-reported outcomes. The American Journal of Managed Care. https://www.researchgate.net/profile/Carolyn-Schwartz/publication/10963675_An_introduction_to_quality_of_life_assessment_in_oncology_The_value_of_measuring_patient-reported_outcomes/links/02bfe50ef12daed3d2000000/An-introduction-to-quality-of-life-assessment-in-oncology-The-value-of-measuring-patient-reported-outcomes.pdf

  4. Balestroni G, Bertolotti G. (2012). [EuroQol-5D (EQ-5D): an instrument for measuring quality of life]. National Library of Medicine. https://pubmed.ncbi.nlm.nih.gov/23614330/

  5. EQ-5D. How Can EQ-5D be Used. https://euroqol.org/eq-5d-instruments/how-can-eq-5d-be-used/

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Meet the Team: LeAnn Wilson

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BioMatrix is dedicated to making a difference in the bleeding disorders community. Our team of Regional Care Coordinators and Patient Care Specialists provide support that draws on personal experience and a genuine commitment to the bleeding disorders community. Our “Meet the Team” segment invites you to get to know our incredible staff a little bit better.

In this edition, we feature LeAnn Wilson!

“When patients are empowered, their lives change. My number one goal is to empower patients while providing family-focused support that improves quality of life and makes a difference for the bleeding disorders community.”

LeAnn Wilson has been an active member of the bleeding disorders community since 2008 and has served in her role as a BioMatrix Regional Care Coordinator since 2016. She primarily serves patients in Tennessee, Mississippi, Arkansas, and Louisiana. LeAnn was born, raised and still happily resides in Bethel Springs, Tennessee, with her husband Adam of 19 years and their two children, Hunter and Haylee. In addition to spending time with her family, she enjoys the outdoors, crafting, singing and cheering on her kids as they do what they love! 

As a mother of a son with severe hemophilia, she attended many local chapter events and began organizing fundraising activities to give back to the community. With a degree in business management, LeAnn uses her personal and professional experience to provide exceptional service to the families and individuals she works with.

What is your connection to the bleeding disorders community?

In April of 2008, we were thrown into the world of bleeding disorders two days after my son was born when his circumcision began to bleed excessively. My pediatrician ran some tests and asked if there was any family history of bleeding disorders, which there was none. The doctor returned with the lab results and confirmed my son had hemophilia A. My parents and those of my husband immediately gathered at the hospital. The doctor told us she didn’t know much about hemophilia but proceeded to give us a very brief explanation. She explained the baby would be given clotting factor and then transferred to St. Jude’s Hospital. After 3 hours of trying and 28 sticks, the clotting factor was finally administered.

How did you react to your son’s diagnosis?

My son’s diagnosis of severe hemophilia A was very difficult for me. I found myself very depressed and fearful. These feelings lasted for about a month.

How did you overcome your initial fears?

I overcame my initial emotions by educating myself on how to best care for him and leaning on my support group, which consisted of our parents, my pharmacy rep and especially a nurse at St. Jude. The nurse gave me a lot of reading material and was very patient with my constant questions. She showed great compassion even when I called fearing I had clipped my son’s nails and nipped his skin. The nurse and my pharmacy rep were always available to answer my many questions. Their support and kindness were crucial to me.

Early on, I learned the importance of connecting with others in the community, gaining knowledge and insight from my peers and applying what I learned to support my family. I even completed a phlebotomy course to gain a deeper insight and understanding for peripheral infusions.

As a Regional Care Coordinator, how do you feel you are Making a Difference?

I aspire to make a difference by helping address the range of needs bleeding disorder community members require. I connect and encourage patients to engage the clinical resources at their disposal while providing emotional and peer-support for families as they navigate life with a bleeding disorder. I stay actively involved with the community in my role as a Care Coordinator and on a personal level as well.

What is one of your proudest achievements?

In 2020, I was recognized by the Tennessee Hemophilia and Bleeding Disorders Foundation with the “Volunteer of the Year” award. I want to give back and support my community in any meaningful way possible and would do so regardless, but to receive the award was such an honor!

Do you have a favorite quote?

My favorite quote is “Knowledge is Power” and that is my goal, to empower members of our community with the knowledge and support to properly care for themselves, their family and their loved ones.

What would you say to a newly diagnosed family?

Just breathe. Take a minute and relax. I don’t sugar coat things and say it’s all going to be easy, but I tell new parents that they will be okay—they are stronger than they know, and they will get through this.

Especially to new mothers, I advise them to step away a bit and to be sure to take care of themselves. It’s easy to get lost in caring for others with no regard for yourself. Taking a bit of time for oneself helps balance life and makes for a better caretaker. I also advise parents to educate themselves as well as their loved ones and to set those nearest to them as a source of support and to share in emotions.

Contact LeAnn
Mobile: (731) 610-5034
Email: leann.wilson@biomatrixsprx.com

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CHRONIC PAIN: New Ways to Cope Using Mind-Body Skills

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By Diane Dimon, Dr. RS

Coping with physical pain is no small challenge. It can be alarming, irritating, humbling, agonizing… And, if you or a loved one live with hemophilia, chances are you have regular doses of pain in your life.

Bleeding into the joints certainly can cause severe pain. Maybe there is ongoing pain from arthritis. Perhaps pain is brought on intermittently by minor traumas, over-use of a joint during exercise or sitting too long at one time. Maybe it’s caused by stress, the weather, or even excitement about a holiday, first day of school or prom.

Managing chronic pain is difficult. The traditional way to cope is with medications, many of which have undesirable side effects. The good news is that non-traditional therapies for persistent pain are now well-researched and proven effective. This article will explore meditation and other mind-body techniques for managing pain and offers instruction in four techniques that you can use right away.

MIND-BODY CONNECTION

It matters what we think. Forty years of research tell us that our thoughts, feelings, attitudes and beliefs impact our body, our abilities and our pain. Mind-body practices are based on this interconnectedness of mind and body and the power of one to affect the other. They treat the whole person – not just the physical body.

The new sciences agree that mind matters most. This includes quantum physics, mind-body medicine, biopsychosocial medicine, psychoneuroimmunology and neurophysiology, to name a few.

Here is an example from neurophysiology: The moment I have a happy thought, my body’s messenger molecules called neuropeptides instantly send out that exact thought to the 50 trillion cells in my body. In that instant, a chemical message translates my happiness and literally every cell in my body joins in on a cellular level. Happy cells produce “happy chemicals,” such as endorphins and serotonin. Similarly, when I have an angry or worried thought, I instantly have a body full of 50 trillion angry or worried cells, which produce chemical toxins or “stress hormones” such as cortisol and adrenalin. Can you guess which chemicals enhance pain and which reduce pain?

Some of the most commonly used mind-body therapies are meditation, deep breathing, mindfulness, cognitive reframing, positive mental imagery and self-love. These mental skills reduce pain as well as stress, anxiety, insomnia and a host of stress-related conditions. They also have the added benefits of increasing self-knowledge and self-care, and they promote an overall sense of empowerment and well-being.

A brief look at the anatomy of pain will help us understand how the brain processes pain signals and how mind-body skills work to counter pain.

HOW WE FEEL PAIN

Pain is complex. In fact, after years of research, we still do not fully understand exactly how pain is processed and experienced by the body. However, we do know that our experience of pain is profoundly influenced by our mind – our perceptions and our moods.

Currently, many researchers subscribe to the Gate Control Theory of Pain first proposed in 1965 by psychologist Ronald Melzack and anatomist Patrick Wall. In simple terms, this theory states that pain results from a series of electrical and chemical exchanges involving three major components: the peripheral nerves, the spinal cord and the brain. There is a “gating system” in our central nervous system that opens and closes to either allow or block pain messages to the brain. The core of this theory is that psychological as well as physical factors guide the brains interpretation of painful sensations and subsequent responses.

The illustration below will give you a visual of how sensory messages travel. Sensory messages travel from stimulated nerves in the body to the spinal cord. These nerve signals are then sent through open “gates” in the spine up to the thalamus in the brain. The thalamus acts like a switching station that interprets the sensory information according to three psychological factors:

  1. One’s emotional state

  2. How much attention is given to the pain

  3. The perception of the sensation based on prior conditioning; e.g. if the sensation is thought to be dangerous or not

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All this information is integrated and guides the individual’s response. If the brain sends a message back down to close the pain gates, the pain signals are blocked. If the brain orders the pain gates to open wider, the pain signals intensify.

Following are some examples of how thoughts and emotions impact our experience of pain and our ability to cope.

  • People often find their pain worsens when they feel depressed, and it improves when they feel uplifted or become involved in fun activities.

  • Athletes often do not notice the pain of a fairly serious injury until the “big game” is over when they can pay attention.

  • A child who has heard horror stories about visiting a dentist will likely feel alarmed and experience significant pain from even the gentlest of dental probes.

  • Chronic stress causes muscle tension which exacerbates pain.

  • Anticipating pain before it occurs causes anxiety as well as muscle tension, which makes the pain feel stronger and last longer.

  • A feeling of helplessness often leads to negative thinking, which tenses muscles and opens pain gates; e.g. “This pain is unbearable, it’s never going to get better.”

Many of these examples can be applied to situations for those living with a bleeding disorder. One may not notice the pain of a bleed when preoccupied by school, work or other activities, and it is only when the hustle and bustle slows down that we take full notice of the bleed and the pain that has developed. For children not yet adjusted to regular infusions, the anticipation of pain can cause anxiety and create an experience that exacerbates pain and stress. Further, our pain may be increased when we succumb to helpless negative thinking brought on by the chronic nature of the condition.

Here are some mind-body factors that open and close pain gates:

Some factors that open pain gates (leading to more pain)

  • Stress

  • Anxiety regarding pain/negative thoughts

  • Focusing on pain

  • Mood: depression

  • Physical inactivity

  • Lack of sleep

Some factors that close pain gates (leading to less pain)

  • Relaxation/Meditation

  • Cognitive reframing/positive self-talk

  • Distraction from pain

  • Mood: wellbeing

  • Physical exercise

  • Adequate sleep

DOES THIS MEAN PAIN IS “ALL IN MY HEAD”?

Although mental and emotional factors can greatly affect the experience of pain, this is NOT saying pain is made up, imagined or psychological in origin. Pain is a physical sensation in the body. It is real and distressing; however, it can be altered by skillful use of the mind!

THE PERCEPTION OF PAIN

Our goal is to shift our perception of pain. Gandhi once said, “You can’t change the wind, but you can adjust the sails.” We are learning to adjust the sails of perception of pain so that we no longer set off the stress alarm around it. As long as there is no “acute” pain that requires an emergency response, we can learn to view it as a challenge rather than a danger, and thereby avoid intensifying the sensations by tensing muscles and opening pain gates.

When pain strikes, ask yourself, “Is there any danger here?” If not, stay calm. Instead of reacting with fear, resistance and tension, we can learn to relax into it, accept it and maybe even make peace with it as a “difficult old friend.”

This is not resignation, indifference or denial. Instead, it is called equanimity, an inner balance of mind that responds to life with greater calm, clarity and compassion. We bring curiosity and kindness to ourselves, to our body and to the pain, allowing us to live more fully and cope more skillfully.

LEARNING THE SKILLS

Meditation and other mind-body skills are self-management strategies. They are practices and not pills. Accordingly, one must participate in them. Like an athlete or musician, you get coached, you pick your favorites, you learn, you practice and you enjoy the results.

There are a variety of techniques to choose from. Some involve relaxation strategies that reduce stress and the physical tension around pain. Others use cognitive strategies to outgrow stressful thinking patterns about the pain and cultivate a stress-free perception of pain. All of these relaxation and cognitive techniques help to counter pain, thereby increasing a sense of control over pain and the factors that influence it. Here are four Mind-Body Skills that will help you manage your pain more skillfully.

SKILL #1

Meditation and Mini-Meditation *

Meditation is a classic mind-body technique that instantly relieves stress. It creates a unique state of heightened awareness and physical relaxation called relaxation response that reverses the stress response and reduces pain, anxiety, depression and other stress-related conditions. The effects of meditation usually last far beyond the meditation itself, and you become more skillful at managing life’s challenges. Here is a “formal meditation.”

  1. Preliminary Steps: In a quiet location, sit comfortably with your eyes closed. Invite your body to relax. Set aside all concerns and give yourself permission to “just meditate.”

  2. 5-5-5 Breathing Exercise: Inhale through your nose, slowly and fully, counting to 5. Hold for a count of 5. Then exhale through your nose, slowly and fully, counting to 5. Repeat 3 times.

  3. Use a Focus: As you breathe naturally, place your attention on a chosen focus, such as your breath. Follow the rhythm of each breath as it naturally moves in and out of your nose. Do not control your breathing; just observe it as it is. If you prefer, you can use a relaxing word or phrase for your focus, such as “one-two,” “peace-ful” or “all-is-well.”

  4. Practice Non-Judgment: When your mind wanders, just notice and gently bring it back to your focus. Try not to indulge your thoughts, fight them or judge them. Don’t worry about how you are doing. As best you can, maintain relaxed alertness and non-judgment. “Oh well, where’s my breath? There it is!” Be gentle with yourself and take the experience as it comes.

  5. Continue this for 15-20 minutes: You may set a quiet alarm, peek at your watch or simply ask your mind to alert you when time is up. Then stop your focus and remain in silence with eyes closed for a minute or so. Open your eyes and continue your day.

  6. Practice this technique in the morning and evening, preferably at the same time and location.

Note: The above technique can also be practiced in 3–5-minute Mini-Meditations. These are short pauses that fit into a busy schedule and instantly relax tension in the body and reframe upsets in the mind. Mini-Meditations act like a reset button on a computer, whereas formal meditations act like a reboot. Pause whatever activity you are doing, breathe deeply three times and then meditate for several minutes (instructions above). Your eyes can be opened or closed. Do Mini-Meditations during moments of pain as well as stress, anxiety, depression, or when you are feeling rushed or frazzled. Try it before a test, a confrontation, a medical procedure or when you are having trouble sleeping. With practice, these pauses can be as refreshing as a few hours’ sleep.

* For more meditation training and a 20-minute meditation experience that you can use again and again, please see the training CD “Finding Stillness Through Meditation” by Dr. Diane Dimon.

SKILL #2

Mindfulness of Pain

Mindfulness is more than a relaxation technique; it is also a cognitive technique that retrains negative thinking patterns that cause stress and exacerbate pain, anxiety and depression. It replaces catastrophizing thoughts with positive self-talk to cultivate a stress-free perception of pain.

Mindfulness is non-judgmental moment-to-moment awareness. It involves keeping your attention in the present moment without judging things as good or bad. Your goal is simply to observe and accept whatever is happening now, with no intention of changing or fixing anything. It is living each moment - even painful ones - as fully and consciously as possible with a sense of curiosity, kindness and trust. Mindfulness can be practiced while sitting “formally” or in the middle of activity, and also during experiences of pain. Here is a ‘formal’ practice of Mindfulness during pain:

  1. Sit comfortably with your eyes closed. Take several deep breaths. Relax your body. Begin by placing your attention on the rhythm of your breath. For 1-2 minutes, follow the breath as it flows in and out of your nostrils.

  2. When you feel pain in your body, pause your attention there, and gently and lovingly allow yourself to be with the pain. Put direct attention on the uncomfortable sensations and experience what they actually feel like. Let yourself experience it with a beginner’s mind, without conditioned reactions. For instance, have you ever let yourself really feel pain without judging it as bad? Are the sensations hot, cold, diffused, sharp, achy, throbbing, tingling, pinpricks…? Explore.

  3. Try not to fear the pain, resist it or tense up. Let go of judgments about how things should be. See if you can relax into the pain and make peace with it instead of trying to eliminate it. Give it a name. If the pain has been with you for a while, see if you can touch it with kindness and compassion, and treat it like a difficult old friend.

  4. Of course, if at any time the pain becomes too much, you can reassure yourself that there is no danger and that you are safe, and you can end the meditation.

  5. Practice this for 5-10 minutes at a time. When you are finished, take another deep breath, and slowly and gently open your eyes.

SKILL #3

Loving-Kindness Toward Self and Body

Every living creature needs love to thrive, including our body. Research confirms that loving is literally good for our health by promoting health-supporting body chemistry. However, loving the body can be difficult, especially when there is pain and illness. This Loving-Kindness Technique uses repeated phrases to evoke goodwill, appreciation and friendship toward self and body. It uplifts as well as relaxes. The following is a “formal” practice; it can also be done as a quick blessing in the middle of activity.

  1. Close your eyes, sit comfortably and set aside all concerns. Breathe deeply several times and invite your body to relax.

  2. Begin to recite inwardly the listed below (or similar that work for you). Direct the phrases to yourself, to your body as a whole or to specific difficult body parts that are associated with pain, tension, sadness, anger, shame… Adjust the words and images to fit, and mentally for five minutes or so. At first this may feel mechanical or awkward, or it may feel wonderful. Either way, the heart opens and loving-kindness grows. Experiment, be patient, and with practice you’ll begin to feel a wonderful sense of wellbeing, acceptance and connection with yourself, your body and life in general.

May I be filled with loving-kindness;

May I be well and safe;

May I be peaceful and at ease;

May I be genuinely happy.

May my Body be filled with loving-kindness;

May my Body be well and safe;

May my Body be peaceful and at ease;

May my Body be genuinely happy.

The formal practice of Loving-Kindness can be practiced anywhere and it can be expanded from Self and Body to also include Loved Ones, Neighbors, Strangers, Difficult People and All Beings.

SKILL #4

Mental Imagery for Pain

Mental imagery combines relaxation and the power of your imagination to access the unconscious mind and produce calming, energizing and healing responses in the body. If you have ever closed your eyes and pictured yourself lying on the beach as a way to relax, you have used imagery. The unconscious does not know the difference between what is “real” and what is “imagined,” so images are like powerful suggestions that encourage your body to do what you are imaging. You deliberately focus on a particular image that “sees” the changes you desire; the more senses you use, sight, sound, smell, taste, touch, the more vivid and powerful your image becomes.

Mental Imagery can be used for relaxation, healing, pain reduction, insight into illness, changing behaviors, accomplishing goals, etc. The following is a guided imagery for pain reduction:

  1. Calm yourself, sit comfortably, relax your body and take three deep breaths.

  2. Explore different mental images for decreasing pain (see below). Then pick the one(s) that work best for you:

    • Imagine holding a remote-control device (similar to a TV remote control), except that it is connected to your level of pain. Imagine slowly turning down the “pain volume” until you can barely hear/feel/experience the pain.

    • Imagine placing your pain in a strong metal box, and then closing, sealing and burying the box.

    • Imagine your pain is being washed away by a cool, calm river flowing through your body.

  3. Whichever mental image you choose, make it as vivid as you can. Allow your mind to experience your image with as many senses as possible; see it, touch it, hear it, think about it, feel it…

  4. Cultivate non-judgment, non-attachment and receptivity. If doubt or disbelief arises, just notice and return to your image. Keep a relaxed mind.

  5. Practice this for 5-10 minutes at a time. When you’re finished, take another breath and gently open your eyes. The more you practice the image, the deeper the mind accepts it.

IN CONCLUSION . . .

Chronic pain is challenging. Whether it’s jabbing, burning, aching or throbbing – any way we describe pain, we want it to stop. The good news is we have tremendous power over pain because our experience of pain is profoundly influenced by our mind’s perceptions. I invite you to explore these mind-body techniques and see how they will serve you to feel less pain and experience greater health and happiness!

* For further information on How We Feel Pain:

  1. Mind Body Medicine: How To Use Your Mind For Better Health, Dennis C. Turk PhD. Pgs 111-125.

  2. Mayo Clinic Guide to Pain Relief: How to Manage, Reduce and Control Chronic Pain, 2008

Diane Dimon, Dr.RS is Director of Matters of the Mind, a California-based company that teaches a full range of meditation and other mind-body techniques for improved health, happiness and high-performance. She conducts nation-wide seminars, retreats, private instruction, and keynote presentations. Her clients include healthcare providers, hospitals, businesses, universities, youth and individuals from all walks of life. She offers Continuing Education for nurses and therapists. Dr. Dimon has been practicing mind-body skills for 40 years and holds a doctorate in Religious Studies, specializing in the study of consciousness and the mind-body connection. She is author of the Meditation Training CD Finding Stillness with Meditation and her upcoming book Mindful Eating. 

Her seminars include:

Meditation for Anxiety and Stress Reduction

Mind-Body Skills for Pain Management: A Research-Based Approach

Mindful Eating: Lose Weight with Peace, Pleasure & Purpose

Meditation for Youth: Relieve Stress, Improve Learning, Increase Happiness

Loving Kindness: Loving Self, Loving Others

Imagine That! Therapeutic Mental Imagery to Create and Heal

Compassionate Communication: A Language of Peace and Empowerment

The Science of Happiness: A Breakthrough Approach

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A Letter to My 13-year-old Self

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By Richard Vogel

Rich-V.jpg

Life is an unknown. And that’s what makes living it so special. Having a bleeding disorder makes it twice as difficult. What if we had some insight into our future? Not that we could change our life but to encourage us when moments look dark. As a 65-year-old man with severe hemophilia, I look back and remember the uncertainty, the worries and fears, and the deep desire to actually live my life no matter what obstacles it had in store for me. If I could write a letter to my 13-year-old self it would go something like this...

Dear 13-year-old Me,

Things look sort of dismal right now lying on the couch with yet another bleed – a knee the size of a basketball, even after having it aspirated. As always, you’ll get through. It was pretty disappointing you couldn’t go to Woodstock with your older brother that weekend, but you couldn’t put pressure on your knee, so walking was out. But you don’t tend to blame disappointments in life on your hemophilia. Your motto will be,” Tomorrow is another day.” Always know you are a fighter.

There will be some milestones in your life that will make you become the man you are today. For one, you will have outlived your life expectancy by 45 years so far! When you were born in 1956, you were not expected to make it to your 20th birthday. And you almost didn’t. Remember when you had that brain bleed at 3? For someone with hemophilia to survive a brain bleed being treated with whole blood was nothing short of a miracle. Or luck. Look at the bright side – just by surviving you earned a place in medical history.

You don’t realize this yet, but Mom and Dad don’t treat you any differently than your siblings. They want you to live a normal life even though, aside from whole blood and plasma, there is no other therapy for hemophilia. When you were 9, Dr. Judith Graham Pool discovered cryoprecipitate “cryo,” which helped with your bleeding episodes. Three years later, you learned how to self-infuse this new lyophilized product called clotting factor.

In time, you will see major advances in hemophilia therapies… and these advances will also cause you to suffer some heartache. Because of the vast amounts of donated blood needed to make this new clotting factor, you will contract blood-borne hepatitis B and non-A non-B, which years later will be called hepatitis C. Christmas 1973, at 17, you will have jaundice, but it won’t get you down.

In the early 1970s, you’ll be busy living your life. It’s a time of change, politically, musically and creatively, and you are determined to be a part of it, despite hemophilia. You’ll participate in sit-ins protesting the Vietnam War, have fun at Grateful Dead concerts, and discover photography, first as an art form and later, a career. Mom and Dad know it will be difficult for you to hold a steady job because of the spontaneous bleeds, so they will support you in whatever you want to do. They’ll even be okay with you growing your hair long when you tell them it will help you fit in and maybe no one will notice how you limp.

Over the next few years, you will have some great experiences and will learn to live life on your own. Traveling cross country in your van and spending months in New Mexico doing photo-documentary work for the New Mexico Solar Energy Commission and photographing the construction of solar greenhouses on various American Indian reservations are in your future.

That will be the start of wanting to help others, but you won’t realize it for a while. Your photography career will continue in New York City, first apprenticing for a well-known fashion photographer and then opening your own studio. You will take your first trip by plane and sit staring out the window like you’re 13 again—the start of your desire to travel and see the world. Living in Greenwich Village, you will develop a wide range of musical tastes by hanging out at clubs like Max’s Kansas City, the Bitter End, and the Village Vanguard. Enjoy those times. You won’t have regrets.

I am sorry to tell you though, in 1982, in addition to hepatitis, you will contract HIV from the clotting factor you’re using to control your bleeding. You will be at the Perry Street Theater seeing A Christmas Carol with Orson Wells as Scrooge. Halfway through you will have a spontaneous elbow bleed and rather than ruin the evening by leaving, you will sit in pain until you can get home to infuse. You’re used to the cloudy factor you’ll infuse that night, but the next day you will be sick with flu-like symptoms. That’s the HIV. Once the news channels report that HIV is found in the blood supply, you will figure it was inevitable. After all, by then you will have received many doses of clotting factor and blood transfusions.

When you do find out about HIV, the doctor will tell your wife (yes…you get married – twice!), “Why would you want to have kids with him, he will be dead in five years.” You won’t complain though. You won’t ask, “Why me?” You’ll just go on living your life.

At 27, you’re still a little naive. You’ve grown up with these doctors, they’ve kept you alive. Why would doctors and national organizations tell us to keep infusing when HIV was in the blood products? You trust them, but no one trusts them more than Dad. When the first legal trials against the pharmaceutical companies start, many doctors begin testifying against their own patients.

Dad will walk up to my doctor after she testifies for the manufacturers, a woman he considers part of our family, and will tell her she has broken his heart. For a man who doesn’t show his emotions, it is devastating. He won’t ever speak to her again. This memory will stay with you forever. You will realize that day what a true advocate he has been.

But you’re a fighter. A survivor. You won’t let HIV bother you. Your attitude is, “I was exposed to this virus, but maybe I’ve built antibodies.” Maybe you will or maybe you’re just lucky, but you’ll stay fine until 2010 when you develop thrombocytopenia. Possibly from the HIV, it seems your body will begin to turn on itself and start destroying platelets. This will lead to another brain bleed. Again, you will survive, even if the hospital misreads the CT scan and doesn’t infuse you for three days. After that, you do start taking HIV anti-viral drugs. Maybe this will also help you survive the pandemic of 2020—yes, we have one of those coming! Just maybe you’ll be lucky again.

Even at a young age, you will never want to be a burden on society, so you will always work. Your first job will be in the shipping department of a men’s store, and you will drive an ice cream truck after high school graduation. You will have a career as a professional freelance photographer, will start your own trial consulting business, and will advocate for people with bleeding disorders. You inherited the best of both worlds; Mom is a creative optimist while Dad is always pragmatic. It will take you years to see this, but the catalyst for your advocacy is another milestone in your life. Dad passes away when you’re 39.

He will have taken better care of your hemophilia than you do. He made sure you had insurance. He will have held blood drives in your name so you could use blood credits to get clotting factor, which insurance wouldn’t cover at the time. He will have helped the Hemophilia Association of New Jersey (HANJ) pass legislation so insurance companies would be required to cover clotting factor.

With Dad gone, you will have to take control of your hemophilia. Following in his footsteps, you will jump in with both feet, serving as an HANJ board member and the New Jersey representative on the board of the recently formed Hemophilia Federation of America. In later years, you will serve as president of each of those organizations. It will be an honor when you received HANJ’s Past Presidents Award, which includes Dad’s name alongside other former presidents.

Side by side with advocates, you will be involved in getting the Ricky Ray Hemophilia Relief Fund Act of 1998 passed and funded. This will help patients and families get the compensation they rightly deserve. At 13, you haven’t yet heard of Ricky Ray—he won’t be born until 1977. Another young person with hemophilia, Ryan White will be born in 1971. Their lives will come to have much meaning for you.

Later in 2009, you will become a voting member of the Federal Advisory Committee on Blood Safety and Availability, which “…provides advice to the Secretary of Health and Human Services through the Assistant Secretary for Health on a range of policy issues related to blood, blood products, and tissues.” You will continue to use your voice on behalf of and for the welfare of the bleeding disorders community. Dad would have been so proud of you.

You will reach another milestone in your life—65 years old! I’ll fill you in, not even talking hemophilia, as we get older, everything gets more difficult. Throw in some joint damage and diminished range of motion and you’re in for a bumpy ride. Things most people take for granted like buttoning the top button of a shirt are a challenge. By the way, what is the worst thing you can ask a man with hemophilia at the dinner table? Please pass the salt. Never lose the humor. It is what helps you get through the bad times.

I want you to know you WILL endure. Don’t give up! You will find yourself in a very small group of surviving veterans—men over 60 with hemophilia, HIV, and other co-morbidities. You will be absolutely delighted to be in a group of old men with diabetes, high blood pressure, high cholesterol, and osteoporosis. Your kidneys will leak protein, but you know what? It’s a small price to pay to still be here, working, helping people, traveling, whipping up a great meal, and enjoying life!

There will be many times in your life you will ask yourself if you made the right decision. Don’t doubt yourself. You won’t forget your failures, so confront them head-on. They will give you the drive and determination to succeed. Despite the challenges, you will survive.

The future will have its ups and downs but by persistence, hardheadedness, and a little luck, I’m here to say you will make it! As your favorite group, the Grateful Dead will say next year, “Sometimes the light will be shining on you and sometimes you will barely be able to see but what a long, strange trip…” it will be.

Be happy,
65-year-old You

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Meet the Team: Tina McMullen

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Tina.jpg

BioMatrix is dedicated to making a difference in the bleeding disorders community. Our team of Regional Care Coordinators and Patient Care Specialists provide support that draws on personal experience and a genuine commitment to the bleeding disorders community. Our “Meet the Team” segment invites you to get to know our incredible staff a little bit better.

In this edition, we feature Tina McMullen.

Tina has served as a Regional Care Coordinator in the Pennsylvania area for over 8 years. She is a fierce advocate, hemo-mom, and one of the kindest people you’ll ever meet.

What is your connection to the bleeding disorders community?

My son Dakota was diagnosed at 6 months of age with severe hemophilia B. A few weeks before his 6 months check-up, we noticed bruising all over his chest. I was terrified our pediatrician would think we were abusing him. The pediatrician immediately ordered a series of tests. Waiting for those results was the longest 2 weeks of my life.

When the results came back positive for hemophilia, our world was turned upside down. We do not have a family history of hemophilia and had never even considered it. We found out on a Friday, and on Monday we were at the Children’s Hospital of Philadelphia. After all the crying we knew we had to educate ourselves. We started attending educational programs at our HTC and got involved with our local chapter.

What brought you to BioMatrix?

After my son’s diagnosis, I became very active in the community. I was on the Parent Advisory Board at the Children’s Hospital of Philadelphia. My husband and I were “County Captains” for our local chapter. I wanted to help other families dealing with the same issues I dealt with so when the opportunity to work in the community as a specialty pharmacy rep came up, I knew it was meant to be.

How do you feel you are Making a Difference?

I feel I am Making a Difference by being a mom and community member first. Always remembering what I wanted for my son. I look at every community member as family. It is my responsibility to help every one of my “family members” address and overcome any obstacle they may be faced with.

What do you cherish about your role as a Regional Care Coordinator?

What I cherish most about my job is working alongside the pharmacy to provide the best possible care. Talking with a new parent who thinks they are all alone. Seeing that flash of relief, of hope, of realization that everything is going to be okay are the moments I truly cherish.

What was your most difficult challenge raising a child with hemophilia and how did you overcome it?

There have been so many challenges over the years. First bleed, first infusion, first day of school, first time away at camp, the list goes on and on. I’ll go with the most recent one. When Dakota moved out last year, I worried about everything. My mind was constantly racing. Did he get to work okay? Did he get home okay? Is he infusing like he is supposed to? As weeks turned into months without any issues, I finally realized things were going to be okay.

I did my job of teaching my son how to effectively manage his bleeding disorder. Worry has now turned into the satisfaction of watching my son spread his wings. He’s found the most wonderful young lady, Steph, and now it’s their time to start their lives together.

Who has been the most positive influence in your life, and in what way?

My mom, Connie, was my most positive influence. At the age of 27, my mom was widowed with 2 small children. Her strength and determination have always inspired me. I believe learning from my mom is what has gotten me through the tough times and greatly influenced the person I am today.

What is the best advice you have ever received?

Dakota’s hematologist told my husband and me from the very beginning, “You cannot put your son in a bubble. There will be some things he cannot do, and there are some precautions you will have to take, but by and large, he will be a normal kid.” Those words stuck with me for a very long time and had such a calming impact during a time of confusion and fear.

What motivates you – what is your passion?

My passion is making a difference in people’s lives. Showing compassion, empathy, and understanding while helping lead patients to the resources and support that makes life with a bleeding disorder a little easier.

What is your proudest achievement?

My proudest achievement is going from having an infant diagnosed with a bleeding disorder and knowing nothing about it to advocating, educating, and supporting others. Building community and working as part of a caring team that truly is making a difference in the lives of others makes me proud.

Contact Tina
Mobile: (484) 942-4457
Email: tina.mcmullen@biomatrixsprx.com

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Pharmacy Times Featured Article: 340B Programs Help Hemophilia Treatment Centers Promote Care

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Living with a bleeding disorder can be challenging. Hemophilia Treatment Centers (HTCs) play a critical role in caring for patients reducing hospitalizations, mortality, and other complications.1 As federal funding has decreased, HTCs use 340B programs to make up for limited funding.

Many HTCs use a combination of contracted and in-house pharmacy services to manage their 340B programs. Contract pharmacy arrangements can help HTCs with existing or new 340B programs maintain regulatory compliance, maximize cost savings, and promote patient engagement.

Jeff Johnson is a patient with hemophilia who is a BioMatrix Regional Care Coordinator serving an HTC 340B program in the Northwest. “My role is to enhance the efforts of the HTC and support the patients served through the 340B program. The relationships I form are based on trust and shared experience as a fellow community member,” Johnson said.

 “Coordinating every step with HTC and our pharmacy team, I help patients effectively navigate common coverage or insurance challenges, access programs reducing financial burden, reinforce the importance of care standards, and coordinate accurate and timely refill support,” he said. “I feel our efforts help improve adherence, continuity, and overall connectivity with the comprehensive care team.” 

Read more about 340B contract pharmacy partnerships in our article published in Pharmacy Times.

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References

  1. Hemophilia treatment centers (HTCs). CDC. Updated July 17, 2020. Accessed June 22, 202 https://www.cdc.gov/ncbddd/hemophilia/htc.html[RP1]

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Hemophilia Alliance of Maine

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Meeting the Needs of Rural Maine: Deeply Understanding the Importance of Tenacity, Commitment, and Connection

By Tracey Gideon

Hemophilia Alliance of Maine kids.jpg

The Hemophilia Alliance of Maine (HAM) is one of many bleeding disorders chapters in the United States. Small but mighty, it serves patients and families living in Maine - its rural cities, towns and villages - covering just over 35,000 square miles. Ours is the chapter no one thought would, or could succeed, but 10 years later, we are stronger than ever, and we continue to make sure no one feels left out or alone.

Hemophilia Alliance of Maine logo.jpg

Incorporated in 2011, HAM has worked diligently to serve the community through educating, advocating, supporting and assisting individuals and families of Maine living with hemophilia, von Willebrand disease and other bleeding disorders. We are firmly resolved to continue providing this support.

It was 2009 when Jill Packard and I met at the Maine Bleeding Disorders Center in Bangor, Maine (now located in Brewer). Although it wasn’t clear at the time, we were going to be the co-founders of the Hemophilia Alliance of Maine, we recognized within moments of meeting how important we would be to each other. We were two moms of children affected by a bleeding disorder, we both lived in a rural state, and we both felt we didn’t have the support we needed. Little did we know how impactful our meeting would become for others just like us in the Maine bleeding disorders community.

Our second meeting at Family Camp in New Hampshire was brief, direct and resolute. Demonstrating the importance of tenacity, commitment and connection, we spoke about five sentences to each other. Summed up, we said, “People in Maine need more... are we going to do this? Yes, we are... and no matter what, let’s always be honest with each other and have faith.” We recognized we were ‘Mainers,’ people who deeply value the same things—commitment, connection and hard work, and we were meant to make a difference.

You’ll hear from many organizations within the bleeding disorders community that the most important meetings often happen at a kitchen table. In many homes, the kitchen table is the place where we break bread, where we have difficult conversations and where we celebrate triumphs. It’s no different for HAM. It was at a small, quiet table that we dug deep and built an organization that recognized the people from our state who were feeling disconnected from each other and the larger bleeding disorders community.

With many obstacles in the beginning, it took a few years to establish the organization. First, the medical community and the greater bleeding disorders nonprofit community didn’t fully understand the needs of the rural state. At the time, the nearest community meetings were in Massachusetts. A minimum one-hour drive for some Mainers, with many having to travel up to 6 hours to attend!

Additional challenges presented themselves when living in a place where it gets dark at 3:30 in the afternoon, one can see up to four feet of snow for months on end, and the power goes out just about every time the wind blows. Distance made it difficult for the two of us to get together, plus we both had very young children—yes, it was difficult! With the demands of raising families and the physical distance between us, the formation of the chapter was and continues to be a labor of love.

In 2010, after a year of clearing the way, planning programs, and establishing a cooperative meeting model, we ambitiously assumed the roles of Jill as President and myself as Treasurer. A good friend, Ashley Bean, took on the role of Secretary. Others quickly stepped up to support our fledgling organization with their ongoing support, strong voices, passion and commitment. A year later, HAM took its next big leap when Justin Levesque, Lianne Lapierre and Brandi Cullen joined the board.

Fundraising and program development were the areas we tackled first. The primary programs addressed the most pressing issues. At the forefront were Hemophilia 101 and self-infusion instruction. Community driven, the programs were identified through surveys supported by the hemophilia treatment center based in Portland. The Bleeding Disorders Center of Maine is, on average, a 4-hour drive for many of its patients. Satellite clinics are now held at the Lafayette Family Cancer Institute in Brewer, reducing the extensive drive for many patients.

Early events were well attended - Family Dance, Stick and Swim, Hill Days, and Grandparents Gathering made fantastic debuts. Diving with determination into advocacy, HAM took on greater responsibility with the inauguration of Winterfest, a large annual event, introducing Hike4HAM (now the Unite Hike as part of NHF’s Unite Walk program), and creating a stronger national presence via our website and social media.

Hemophilia Alliance of Maine Winterfest

Hemophilia Alliance of Maine Winterfest

HAM advanced its progress in 2013 with the addition of Victoria Kuhn to the board. She fueled the organization’s commitment to longevity. Subsequently, HAM hired its first paid employee, Executive Director Vicki Jacobs Pratt. A committed nonprofit development professional, Vicki and the board ensured the future sustainability of the organization. Not much later, HAM was blessed with the addition of Janice Yorke and Terry Rice who drove HAM to embrace change and inspired the strength to amplify our voices.

Utilizing a network of dedicated volunteers, HAM launched PIGLET (People Interested Grassroots Local Engagement Together), a unique outreach program comprised of local sub-chapters based on geographic location. Through PIGLET, HAM facilitates meetings and educational programming for small groups of members within their own communities. These groups provide a significantly higher level of access to education throughout the state.

HAM’s greatest accomplishment is the work done through shared leadership and deep collaboration. By emphasizing our small but mighty approach and deeply valuing our partners, we have found our most success in saying YES to opportunity. Much of our work is done in collaboration with other New England chapters, as well as our care provider partners and national partners.

Today, we hold several events throughout the year to meet the needs of our regional and statewide populations. June 18th was our 10th anniversary and we celebrated with a virtual birthday party; however, we really look forward to meeting with families at our annual Unite Hike for Bleeding Disorders - our first in-person event in over a year and a half coming in September!

At an event several years ago, one grateful mom expressed, “We sometimes get so wrapped up with the woes of hemophilia. We need to keep in mind how far we have come, treatment, education and the resources we have available. We also need to remind ourselves that as caregivers we aren’t giving 100% to our affected loved ones if we aren’t also caring for ourselves. We are so grateful to have HAM for these connections and education to remind us we aren’t alone. It is comforting.”

For more info, contact:

info@mainehemophilia.org
(207) 631-7550
mainehemophilia.org

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Adjustments, Adaptations, Transformations, Changes

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By Judy Kauffman, RN, MS, CPNP

ADJUSTMENTS, ADAPTATIONS TRANSFORMATIONS CHANGES doctor-and-young-man.jpeg

It’s a fact. Life is full of changes, something many of us struggle with. Moving, adjusting to new jobs, schools and neighborhoods can cause stress. Finding new doctors, dentists, and even making our way around a new grocery store can add angst. Many will wonder, “Is this a good change? Will we be happy with the new home/job/school? Will this cause a setback? Did we make a mistake?”

We are allowed choice about many changes in our lives; however, many are forced upon us by circumstances beyond our control. Aging, illness, finances, and the needs of other people are just a few. Adjustments we do not freely choose are most often the hardest to which to adapt. Changes, especially unexpected ones, can affect our emotional, physical, intellectual, and psychological health.1

The bleeding disorders world has its own challenging sets of circumstances that eventually require adaptation. Just the initial diagnosis of a bleeding disorder in a child requires a new mindset as well as the learning of a new vocabulary and incorporating an unfamiliar medical regimen. This is often accompanied by sorrow and fear as our hopes and dreams get realigned.

What about when your child’s provider suggests a switch to prophylactic factor treatment? Your initial response might be colored by anxiety as you imagine so many scheduled infusions. Then, it may be suggested that you consider having a port placed to make infusions easier. Not only will your child need surgery to place the port, but you will need to learn the complicated sterile procedure for port access and infusion. Later, someone is going to suggest removing the port and for you and/or your child to start infusing peripherally. Though it’s a scary change, it can provide a great benefit to all involved.

As a Hemophilia Treatment Center nurse, I help patients and families manage many of these changes. I have found that while making adjustments may lead to fear and anxiety in the short term, with support and education, changes can take place and be very positive in the life of the patient and family. Very often navigating through transition leads to personal growth, leaving us stronger than before. Even unexpected and difficult changes can produce some beneficial outcomes.

Throughout the upcoming years, there will be many more reasons for life modifications that you and your family member with a bleeding disorder will face. With some thoughtfulness and anticipation, change can be managed to result in the least amount of sudden disruption possible.

Acknowledge change needs to happen.

Sometimes we get so caught up in fighting change that we actually put it off instead of dealing with it. Denial is a powerful force, and it protects us in many ways; however, stepping outside of it and saying to yourself, “Things are changing, and it’s okay” can be less stressful than putting it off. In this initial phase, researching all aspects of an impending change can make a big difference. Having knowledge gives us more control over the situation and more confidence when making decisions.2

Realize even “good change” can cause stress.

We often think only negative situations cause stress. Though getting married, moving to a bigger house, or having a baby are all happy, positive life events, stress and tension will still accompany them. Stress is our body’s way of reacting to change, good or bad. Expect it, and give yourself some grace in adapting to the circumstances.

Practice self-care.

Keep a schedule that is as routine as possible. Get regular sleep, eat healthy foods, and exercise 3-4 times each week. These measures will help you manage stress and anxiety.3

Seek support!

Allow trusted friends and family members to help you. It is okay to ask for help! Let a dependable person provide a couple of hours of childcare to give you time to go shopping, take a walk, or just relax in the bathtub. Even short breaks can rejuvenate you and help you manage stress.

Vent, but not on social media!

It might be a good idea to take a break from social media during times of change and stress. Instead, talk with trusted friends, family, or clergy. Reliable people can help you to look outward and come to terms with what needs to happen.

Finally, give yourself a break.

In a time of change, you may feel a little out of control. You may feel like you are not living up to your self-imposed expectations. Remember, you are allowed to do less than what is humanly possible. Nothing says you have to function at 100 percent all the time.

One of the great things about being human is that you are allowed to make mistakes. It’s learning from the mistake that counts. Make a point to incorporate more laughter and fun into your life. Laughing is nature’s mood regulator—it increases dopamine, serotonin, and endorphins that can help you feel better.4

Keep in mind that your children learn from you. Make every effort to demonstrate resiliency and adaptability with good grace since your kids are watching and absorbing what they witness. It’s not necessary to hide your struggles with change. Acknowledge you’re having a hard time but that you expect to make the necessary modifications to see a situation through. I love the phrase “hard is not the same as bad.” In my house, we repeated those words often, especially when having to adapt to something new.

Let’s discuss some specific changes you might encounter in your life with bleeding disorders.

Your provider suggests a new medication or treatment protocol such as starting prophylaxis, having a port placed or removed, or starting a new treatment product that is very different than what you have previously used.

This is an exciting time in the bleeding disorder world in that there are many new products and treatment plans in development. It’s great to have choices, but it can often feel as though they are coming too fast! However, just because medical advances and new protocols are coming along quickly, it doesn’t mean you are forced to accept them all immediately.

It’s okay to take a deep breath and spend time thinking before making decisions. Use this time to research the new product or treatment, and learn all you can. Ask many questions! Ask your providers to help you contact others who have made this change and get their input. And after you’ve spent this time researching and learning, it is perfectly okay to take whatever time is needed to go over the pros and cons of the suggested treatment.

You may need to change hemophilia treatment centers due to relocation, or you’ve come to realize the one you’re using isn’t meeting your needs. 

This change can be very nerve-wracking. Research the available hemophilia teams in your area. The CDC website has a great directory for HTCs. Find it online at https://www.cdc.gov/ncbddd/hemophilia/htc.html. Call the center(s), and ask questions. Ask others in your area about their experiences with particular HTCs.

Your first visit to a new HTC may seem strange. Keep in mind every center operates uniquely. The new team may do some things in a familiar way and others completely differently. Give the personnel at the new center time to prove themselves. Remind yourself that different isn’t necessarily bad, it’s just different.

Sometimes the new provider will suggest a completely new treatment plan for you or your child. It’s okay to ask questions and express concerns if the proposed plan feels uncomfortable to you. It’s also okay to not accept a proposed change and to ask for more time before making a decision. It’s okay to say, “I need some time to think this over. For now, I want to leave things as they are.”

One of the biggest changes is the transition for your child from pediatric to adult care. This happens at about 18-21 years old. This is not one change, but many, that should take place thoughtfully over time.

Some HTCs see children and adults in the same clinic setting with the same team members providing care to all patients. Some centers may have different doctors and nurses set up at different locations but share a physical therapist and social worker. Sometimes a young person transitioning into adulthood must go to a completely different center with all brand-new people to find the care appropriate for his or her age.

Whatever model is found in your center, please know that there are more differences to be found between pediatric care and adult care than just location or doctor. The philosophy of care changes with the move to an adult clinic. I once heard a speaker describe the difference as “Pediatric care is comfort care and adult care is cognitive care.” I believe we can bring comfort to the adult setting and cognitive care to the parents of pediatric patients.

The shift to adult care is one that parents can help prepare their child and direct them forward.

The term “cognitive care” is a phrase that denotes thinking and becoming knowledgeable about a subject and increased decision-making. In an adult HTC, your young adult will be expected to begin making decisions about his or her care. Prepare your child by helping him or her develop decision-making skills throughout their childhood.

Decision-making should be part of their lives from the earliest years. We can’t give a 3-year-old choice over bedtime or dinner time; however, we can offer 2 reasonable choices and invite the child to decide. As he or she ages, the choices should become more complex and more meaningful. The child learns to consider the options and make the choice that they desire. They also learn to live with their choices, as well as to adapt to the consequences of their choices if needed.

Help your child become an accountable young person by giving them increasing responsibility in the home and family life. Assigning increasingly complex chores as they age teaches them that they have an important role in the family and ultimately in the world. When we do everything for our kids, we are indirectly teaching them their contribution doesn’t count.5

As your child grows, speak with him or her about their bleeding disorder. Do it in a positive and age-appropriate way. Having been a preschool teacher many years ago, I learned the maxim that explanations to children should contain 1 word for each year of the child’s life. That means that we should use 3-word descriptions for a 3-year-old and 4 words for a 4-year-old. It can take some thought to come up with short explanations, but it avoids having the child lose attentiveness as you talk. Of course, the teaching you do will contain more words the older the child becomes.

During the early years, your child should learn to say the name of their bleeding disorder and if it is mild, moderate, or severe. They should learn to name their treatment product. Your very young child will not be able to recite dose and frequency, but this can be added as the child matures. Your child should learn to inventory their factor and infusion supplies with you. A parent can make up a checklist for their child to use to determine what items are needed. The natural next step would be allowing your child to make the call to their pharmacy to order what they need (a parent should remain nearby or on the line with their child while they are learning this task).

Learning self-infusion is a huge achievement in the life of a child with a bleeding disorder, and it leads to large gains in self-care ability. If your child receives regular infusions to prevent bleeding (prophylaxis) or is infused on-demand, they should be involved in the infusion process. The youngest child can take their factor and supplies out and set up the infusion area. Later, they can learn to mix the product, then draw it up. 

A big step in self-infusion is learning to identify a vein. Help your child become familiar with his/her veins. NEVER tell a child with a bleeding disorder that he or she has “no veins” or “terrible veins.” If veins are difficult to find or access, explain they will get bigger and easier to access as the child grows. It is okay to say, “Your veins are hiding today. We’ll keep looking to see where they’ve gone.”

Allowing your child to attend a bleeding disorders camp will have several benefits including learning he or she is not alone in having a bleeding disorder and in needing infusions. Your child will see other kids infusing and will learn from them. This is one time when peer pressure is a positive thing; many kids learn to infuse at camp because their friends are doing it! Self-confidence is gained when a child learns they can manage their infusions.

Talk to your child about what you have learned at a clinic visit or what you have researched about new treatment protocols and medications. Gradually, and as they are capable of handling it, the responsibility for their bleeding disorder care should be transferred to him or her. This will happen at different ages for different children. Use your judgment for these transitions, and keep an open mind. Consider reaching out to others who may have recently gone through this process.

Transitioning to adult medical care should not mean your young adult must handle everything entirely on his or her own. Make it clear you have many years of experience in managing a bleeding disorder (theirs), and you are still available to help and give advice. However, you have to trust in their ability to take over their medical care. Ask questions about how they are feeling and if they would like some input or suggestions from you, but do not criticize their handling of things. They will learn, sometimes through trial and error!

Helping your child as he or she matures through adolescence to adulthood can be stressful. This transition involves many adaptations, some unexpected, for both parents and child. You can use some of the tips in this article and apply them to other sudden adaptations. A really great resource for learning about and helping your child with healthcare transition is www.gottransition.org.

Don’t forget... ask for help! Trusted friends and family members as well as your hemophilia team can be a great resource to support you and your loved ones throughout all of life’s changes!

About Judy Kauffman RN, MS, CPNP

Judy Kauffman is an advanced nurse practitioner specializing in bleeding disorders. A former kindergarten teacher, she earned a Master’s in Nursing from Georgia State University and serves as Hemophilia Nurse Coordinator at UC Davis Hemostasis and Thrombosis Center in Sacramento, CA. Judy has also worked as a Pediatric Hematology/ Oncology Nurse at Emory University’s Children’s Healthcare of Atlanta, GA, as a Pediatric Nurse Practitioner at Children’s Mercy Hospital HTC in Kansas City, MO, and as a Clinical Support Specialist with a hemophilia pharmaceutical providing education to patients, families, medical providers, and 3rd party payors.

Judy has spoken nationally and internationally, served on committees with NHF and Maternal Child Health Bureau Nurse Working Group for Region 7 and the Great Plains Region, has been instrumental in developing research projects, and has written journal articles. Her passion is teaching others about bleeding disorders so they can live their best lives!

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References

  1. Clark, Val. “Different Types of Transitions in Child Development.” Twinkl.com, 2020, www.twinkl.com/blog/different-types-of-transitions-in-child-development.

  2. Sandford, K. “Adjusting to Change / Life Transitions.” Lifehack, Lifehack, 12 Jan. 2021, www.lifehack.org/372463/why-you-need-adapt-change.

  3. Leinwand, L. “Adjusting to Change / Life Transitions.” Therapy for Change, Therapist for Change and Life Transitions, GoodTherapy, 2020, www.goodtherapy.org/learn-about-therapy/issues/change.

  4. Tasler, N. “How to Get Better at Dealing with Change.” Harvard Business Review, 5 Apr. 2017, hbr.org/2016/09/how-to-get-better-at-dealing-with-change.

  5. Ginsburg, K. “The 7 C’s of Resilience.” Gold Coast Psychologists, 14 Dec. 2013, cbtprofessionals.com.au/the-7-cs-of-resilience/.

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Woodstock, Hemophilia, AND Freedom

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By Jonathan Alan Hill

This week is the 52nd anniversary of Woodstock. This piece was written 2 years ago to celebrate its 50th anniversary.

In celebration of the 50th anniversary of Woodstock, I watched the PBS documentary, “Woodstock: Three Days That Defined a Generation.”

In August 1969, over a half million people descended on a farm in rural upstate New York for an art and music festival. The promoters were not prepared for a crowd that size. 

They did not have enough food, supplies or medical personnel so they were forced to fly staff, volunteers, and even the performers in by helicopter since the roads were closed by all the attendees’ abandoned vehicles. Amazingly there were only two deaths: a sleeping teenager crushed by a tractor and a heroin overdose.

In the section about the medical crisis, the documentary briefly showed the Woodstock Medical Log from the first aid center. Listed among the many foot injuries, abrasions, and puncture wounds was the entry of a person treated for hemophilia. That caught my eye.

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These were the early days of hemophilia treatment. Factor concentrate did not exist yet, and cryoprecipitate had just been developed in 1965. Hemophilia treatment centers were not yet established, and self-infusion was still years away. Yet here was record of a person with hemophilia at Woodstock. I could not find any more information about the patient’s treatment but clearly, they did not die at Woodstock.

I often talk about my generation as trailblazers of hemophilia. We were the first to have HTCs, self-infusion and did things that no one had seen hemophilia patients do before, but here was proof that someone with hemophilia went to the world’s greatest music festival in 1969 (the year of my birth). 

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He would have had to walk miles to get to the farm from where traffic was stopped. He would have had to camp two or three nights with limited supplies. Many of the attendees were barefoot accounting for the many foot injuries. It is hard to imagine a person with hemophilia walking around barefoot without a bleed. This is just amazing to me. Here was proof of a real trailblazer in the counterculture of the late 1960s.

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In my mind’s eye, I can see my two older blood brothers Mike and Val hitchhiking to the festival from Buffalo. I see them standing for hours each day listening to the likes of Richie Havens, Santana, Grateful Dead, The Who, Jefferson Airplane, Janis Joplin, Crosby, Stills and Nash (their first performance!), and of course Jimi Hendrix. Sleeping in tents near the dairy farm and grooving out to the music and art.

The idea of a person with hemophilia going to Woodstock, for me, is the definition of freedom. All my respect to the hemophilia patient who undertook this adventure.

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Video: The 411 on 504's (2021)

For caregivers of children with a chronic health condition, it is important to understand legal rights for academic accommodations.

Join BioMatrix as we host a webinar focused on facilitating academic success for children with special healthcare needs.

Overview: This program is designed to empower parents to understand their child’s rights for accommodations in the academic setting. The presentation provides information and resources to design and implement effective 504 plans, transition between grades, schools, and alternate academic settings during the time of COVID-19. Presented by a mother and educator with children who have multiple chronic health conditions, this presentation draws on research, resources, and personal experience.

Key Learning Objectives:

  • Understand qualifying conditions and rights for academic accommodations

  • Understand the components of a 504 plan

  • Learn how to effectively set-up, implement, utilize, and preserve a 504 plan

  • Understand 504 coverage in Pre-kindergarten, Primary, Secondary and Post-Secondary environments

  • Understand the impact of COVID-19 on 504's and other accommodations

  • Identify resources and support to help during the upcoming school year

Please direct any questions related to this webinar by email to: education@biomatrixsprx.com

Thank you!

About Kelly Lynn Gonzalez
Regional Care Coordinator / Education Development Specialist @ BioMatrix Specialty Pharmacy

Kelly Lynn Gonzalez is a patient, parent of patients, and spouse in the rare disease community. Having personal experience with bleeding disorders, autoimmune disease, PIDD, epilepsy, and cancer – Kelly presents material colored by nearly three decades of experience managing chronic health conditions.

Her presentation style draws on both personal journey and professional expertise to educate, inspire and empower audiences. She channels a sincere passion for helping others facing chronic illness with previous experience as a teacher to lead heartfelt and dynamic programming. Kelly holds an MBA and MA in Education.

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