5 Ways Specialty Pharmacies Support Patients

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Sixty percent of adults in the U.S. are living with at least one chronic illness. Forty percent of adults have two or more chronic health conditions.¹

Specialty drugs are often prescribed for people with complex and/or chronic medical condition(s). Because many of these conditions can be life-altering and/or threatening, proper support throughout the patient journey is critical for optimal health outcomes. This article provides five benefits for using a specialty pharmacy to help manage chronic or complex medical conditions.

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1. Access to Specialty Medication

Due to the complexity of specialty medications and the unique situations faced by the patients who require them for treatment, many specialty drugs are not found at local walk-in retail pharmacies. These medications often require unique patient education tools, patient financial assistance programs, specialized monitoring, advanced packaging, and the ability to get the drug to the patient when and where they need it despite unforeseen events. BioMatrix has met these obligations to our patients for decades.

Specialty pharmacies ensure patients understand their specialty medication insurance coverage, how to get medication in a timely manner, and what financial support options are available. From therapy initiation, payer outreach, benefit investigation, prior authorization, appeals management, and connectivity to manufacturer patient access services, specialty pharmacies coordinate care between all healthcare providers to help patients promptly begin and maintain access to their medication. Our job is to help patients obtain and maintain access to prescribed therapy. We also make sure patients understand how to properly store medications, how to take it, and who to contact when you have questions.

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2. Better Adherence and Treatment Outcomes

We know chronic health conditions can complicate daily life. Treatment is often complex, time consuming, expensive, and comes with side effects further complicating things. For all these reasons, up to 50% of chronically ill patients do not take their medication as prescribed.² By working together, we help make taking your medication easier. Studies show patients who use specialty pharmacies have higher treatment adherence compared to those using a retail option.³ Our data proves this claim. Over the course of one year, BioMatrix conducted a study of patient reported outcomes. Our research found participating patients had an adherence rate of 96.2%. The study showed our services helped to improve both adherence and quality of life. Download the case study here.

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3. In-home Treatment

Due to cost, convenience, and COVID-19, more patients and their providers are opting for home-based treatment. Up to 80% of patients with cancer now receive care in the outpatient setting⁴ while a new healthcare model set to go into effect April 2021 will provide payment incentives to encourage at-home dialysis. Specialty pharmacists play an important role in helping to manage and monitor treatment in the home environment. We educate patients on what to expect from their prescribed medication and how to properly store, handle, and administer their specialty drugs. Our therapeutically-focused clinical assessments collect and analyze key data while allowing our team to monitor side-effects, medication adherence, barriers to care, and overall response to therapy. Learn how patients at BioMatrix use digital tools to submit refill requests and participate in secure, one-on-one conversations with pharmacy staff from the comfort of their home: click here.

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4. Reduced Cost

Living with a chronic condition is costly. When patients have to pay high out-of-pocket costs for their treatment, they’re more likely to skip optional care and delay critical care. This leads to both poorer treatment outcomes and overall health. Poor health can lead to lost workdays and potential loss of employment.⁵ Research shows⁶ specialty pharmacies drive down the cost of care in a variety of ways by promoting adherence to therapy, identifying utilization or dosing mistakes, helping to avoid unnecessary hospitalizations, and connecting patients with financial support programs.

BioMatrix is committed to helping patients identify and obtain financial support so treatment can begin without delay. We help identify co-pay assistance programs and connect patients with the right resources for enrollment. From manufacturer co-pay programs to charity-based financial assistance, we provide resources and support helping patients access specialized healthcare without breaking the bank.

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5. Patient-centric Care

A strong relationship between a patient and their health care provider can positively affect the patient’s ability to cope, especially in an outpatient setting.⁷ In a large study, patients who perceived their health care providers as “knowing them as a person” had higher rates of treatment adherence, more positive beliefs about the effectiveness of their therapy, fewer missed doctor appointments, and a higher quality of life.⁸ Pharmacists who take the time with each patient to understand needs, challenges, and preferences are better positioned to support, educate, and serve.

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BioMatrix Specialty Pharmacy is proud to make a difference in the communities we serve, one patient at a time.

Our clinicians and support staff offer a tailored approach to every therapeutic category, improving quality of life for patients and producing positive outcomes along the healthcare continuum. Learn more.

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References

1. Centers for Disease Control and Prevention (CDC). 2019. Chronic Diseases in America. https://www.cdc.gov/chronicdisease/resources/infographic/chronic-diseases.htm

2. Kleinsinger F. (2018). The unmet challenge of medication nonadherence. The Permanente journal, 22, 18–033. https://doi.org/10.7812/TPP/18-033

3. Kale HP, Patel AM, Carroll NV. (2018). A comparison of pharmacy dispensing channel use and adherence to specialty drugs among Medicare Part D beneficiaries. Journal of Managed Care Specialty Pharmacy. Apr;24(4):317-326. doi: 10.18553/jmcp.2018.24.4.317.

4. Cancer care migrates to outpatient setting. Journal of Healthcare Contracting. May 2011. Accessed July 17, 2020. http://www.jhconline.com/cancer-care-migrates-to-outpatient-setting-2.html

5. Partnership to Fight Chronic Disease. (2019). Framework to Address High Cost Burden for People with Serious Chronic Conditions. https://www.fightchronicdisease.org/resources/framework-address-high-cost- burden-people-serious-chronic-conditions

6. Joo EH, Rha SY, Ahn JB, Kang HY. Economic and patient-reported outcomes of outpatient home- based versus inpatient hospital-based chemotherapy for patients with colorectal cancer. Support Care Cancer. 2010;19(7):971-978. doi:10.1007/s00520-010-0917-7

7. Prip A, Møller KA, Nielsen DL, Jarden M, Olsen MH, Danielsen AK. The patient-healthcare professional relationship and communication in the oncology outpatient setting: a systematic review. Cancer Nurs. 2018;41(5):E11-E22. doi:10.1097/NCC.0000000000000533

8. Beach MC, Keruly J, Moore RD. Is the quality of the patient-provider relationship associated with better adherence and health outcomes for patients with HIV? J Gen Intern Med. 2006;21(6):661-665. doi:10.1111/j.1525-1497.2006.00399.x

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Our entire team is committed to maintaining the health and wellbeing of those we are privileged to serve.

For updated information regarding our response to developments related to COVID-19, a letter from our CEO, and early refill requests, please click here.

Stay healthy, and be well.

We are with you and will get through this together.

---

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

We value your privacy. Review our Privacy Policy here.

Sleep—What Is It Good For? Absolutely Everything!

By Sarah Henderson and Justin Lindhorst

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Most of us love crawling into bed to drift off into dreamland…only for the alarm to go off before getting a full night’s sleep.

The National Sleep Awareness Roundtable reports that 50–70 million Americans aren’t getting the rest they need. Sleep deficiency can wreak havoc on our bodies and minds. The Huffington Post reports, “After just seven nights of too little sleep, researchers observed more than 700 genetic changes that could play a role in consequences including heart problems and obesity.” Anybody can suffer from lack of sleep, but those living with a bleeding disorder need to be aware of how this can aggravate the condition.

Over the last few months a common complaint heard from friends and family members is that they have been having trouble falling asleep, staying asleep, or both. There is little doubt the events of 2020 have been weighing heavily on everyone’s minds. Fear of contracting a virus or spreading it to loved ones, possible loss of income, isolation and staying home, compulsively washing hands, wearing masks, wiping down groceries… these changes have been taking a toll on most of us. Just as things began to lighten slightly, our country faced another outpour of emotion as we watched civil unrest explode against deep and recurring societal injustices. It is not surprising we’re having a difficult time shutting down our brains at night. But how is this lack of sleep affecting us?

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Chronic Pain and Lack of Sleep

Chronic pain is common in the bleeding disorder community. Unfortunately, pain can be especially disruptive to a person’s sleep cycle. Lack of sleep can escalate feelings of pain, which again results in more interrupted sleep. Painkillers are meant to relieve pain but can also have the negative effect of fragmenting sleep.¹ This adds to the sleep deficiency cycle. An occasional sleepless night is quite normal; however, losing sleep on a more consistent basis can negatively impact health and pain levels.

During sleep, growth hormones and cytokines are released by the pituitary gland. Cytokines, small secreted proteins, when released, send signals to the immune system. Hormones help the body heal damaged muscles and joints while cytokines activate the immune system to help battle inflammation, infection and trauma. Lack of sleep and the depression that it may cause can amplify the pain, especially at night, creating a vicious cycle.

Additional negative effects of too little sleep or lack of quality sleep can range from a decrease in immune function, an increased risk of heart disease, and raised blood pressure. Too many sleepless nights can also exacerbate conditions such as Parkinson’s, Alzheimer’s, gastrointestinal tract disorders, kidney disease, multiple sclerosis, and behavioral problems in children.²

For the body to function at its best, it’s imperative to find ways to get sufficient sleep.

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Solutions for a Better Night Sleep

Everyone requires a different amount of sleep; however, age can be a guideline. Most infants require 16 hours, while teenagers need an average of 9 hours, and adults need 7 to 8 hours of sleep. This amount varies based on each individual.³

Set a routine. Go to bed and wake up on a set schedule. Try to keep the schedule consistent even on weekends. During the day, expose yourself to natural light or bright lights. This helps the body regulate one’s circadian rhythm, an internal 24 clock that serves as a sleep/wake cycle.

Another issue which greatly impacts a person’s circadian rhythm is spending too much time in front of a computer monitor or TV screen. Not only does the content of television and social media not allow our brains to relax, light emitting from these devices interrupt the sleep/wake cycle. For an hour or two before bed, avoid watching a screen, and read a book instead. The bedroom should be kept dark, quiet and cool. Draw the shades, and run a fan if needed.

Eating heavily just before or going to bed hungry can disrupt sleep. Avoid eating within a couple hours before bedtime and pay attention to which foods cause problems at night. Caffeine, nicotine and sugar, especially later in the day, can throw sleep into turmoil. Sleep comes easier if a person is sleepy so avoid taking afternoon naps. Include exercise in daily routines, though it is not advisable exercise too late in the day.

Do something to relax – a warm bath, listening to soft music, practicing deep breathing as a relaxation technique.

Paying attention to your bedtime routines and making necessary adjustments may be the key to sleeping better. Good night!

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References

1. Lavigne, Gilles. “Pain and Sleep.” https://www.sleepfoundation.org/articles/pain-and-sleep

2. Mercola, Joseph. “New Insights into Links Between Immune Function and Sleep.” http://articles.mercola.com/sites/articles/archive/2012/08/04/immune-system-and-sleep-deprivation.aspx (08/04/2012)

3. Nazario, Brunilda. “Are You Getting Enough Sleep?” http://www.webmd.com/sleep-disorders/guide/sleep-requirements (11/29/2011)

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The National Sleep Foundation offers ten tips to get the most out of your sleep each night:

1. Establish a regular, relaxing bedtime routine such as soaking in a hot bath, reading a book or listening to soothing music

2. Create a sleep-conducive environment that is dark, quiet, cool and comfortable

3. Sleep on a comfortable mattress and pillows

4. Use your bedroom only for sleep

5. Finish eating at least 2–3 hours before your regular bedtime. Avoid sugar, spicy foods or other foods you find to which you are sensitive

6. Exercise regularly, but not too late in the day

7. Avoid caffeine (e.g. coffee, tea, sodas, chocolate) close to bedtime

8. Avoid consuming 

9. alcohol near bedtime

10. Avoid nicotine – cigarettes and other tobacco products. Used close to bedtime can lead to poor sleep

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Our entire team is committed to maintaining the health and wellbeing of those we are privileged to serve.

For updated information regarding our response to developments related to COVID-19, a letter from our CEO, and early refill requests, please click here.

Stay healthy, and be well.

We are with you and will get through this together.

---

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

We value your privacy. Review our Privacy Policy here.

Frustrated? You’re Not Alone. Feel Free to Vent!

By Gary Mcclain, MS, PHD, LMHC

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The COVID-19 threat continues. Recovery has been painfully slow. We’re all feeling frustrated.

Self-isolation has been key to staying healthy, but human beings are social by nature. We’re all feeling the loneliness, along with the uncertainty about when we can safely return to some kind of normalcy.

Did I say uncertainty? That’s something else humans don’t do well with. We want to know!

How are you feeling? If you’re anything like the people I talk with every day – as a mental health professional, as a friend, as a family member – you’re most likely feeling all sorts of emotions as you cope with life as we currently experience it. Frustration, fear, anger, sadness, disappointment... and more frustration.

For families living with a chronic condition like a bleeding disorder, the isolation has resulted in additional concerns. Access to physicians and treatment centers has been much more complicated, with the need to take additional precautions to prevent bleeding episodes. Any changes to healthcare routines can be scary, as well as disruptive to established regimens. Of course, the need for home-schooling and other changes to family routines is also challenging. And frustrating…

All these emotions need somewhere to go. Sometimes you just want to vent.

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A Good Vent Can Promote Emotional Wellness

Here are the potential benefits of a good vent: Venting helps you work through your feelings which, in turn, is a step toward accepting the challenges you and your family members are facing. It’s a way to let out all those feelings that have been building up in your mind, taking up valuable space that could be better used for thinking and decision-making. Fighting your feelings is fighting yourself. When you stop the fight, you’re in a better position to find solutions.

A caution: venting can turn into ranting, which is a lot of angry words that go on and on and don’t accomplish anything except to drive everyone else away in the process. Venting helps you to release feelings, while ranting is a way of hanging on to them.

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Not Sure How To Vent In A Way That Promotes Your Emotional Wellness? Here’s How:

Give yourself permission to express strong emotions

Human beings experience a whole wide range of emotions from the emotions we label as “good,” like happiness, to the ones we label as “bad,” like anger. Instead of labeling emotions as good or bad, let’s label them as human. And then tell the positive thinking brain cells to take a break while we feel how we feel. Look at it this way: Not getting bogged down with trying to “swallow” your emotions can help you to maintain your optimism.

Find a willing listener

Not everybody in your life is able to listen while you vent about a challenge you’re facing. Some may be uncomfortable with strong feelings or think they should do something to help you and, as a result, feel helpless, or they have too many of their own problems to deal with. Avoid choosing someone who wants to run for the hills as soon as you open your mouth, those who will judge you for not “staying positive,” or who will try to fix you in some way instead of just listening.

Be mindful of your intentions

Ever had a political discussion you realized later was really all about how angry you are at the other person and not about politics? A vent can be just that – a way of indirectly expressing anger at someone, or again, turn into a rant. Take a step back and ask yourself, what is it you need to vent about, and why?

Keep in mind that venting has consequences. A positive consequence is giving voice to your feelings. Doing this can take away their power to do harm or to keep you stuck. However, venting that is directed toward someone else can have the consequence of alienating other people.

Start by asking if the other person is willing to listen

Say something like, ”I just need to talk to someone about how I’m feeling. Would you mind listening?” It might help to add: “I don’t expect you to have any answers for me. I just need a listener.”

State what you want to vent about

“I am dealing with ________.” This accomplishes two purposes. First, it provides the opportunity for the other person to decide whether this is something they can hear. It will also help you stay focused and help avoid drifting into a rant about everything that has frustrated you for the past 20 years.

Be mindful of how the other person is reacting

Body language says it all. Nodding, leaning forward, eye contact – these are signs of involvement. Looking away, moving away, interrupting you with comments like “You’ll be fine” are signs the other person has heard enough. It can help to ask, “Is this hard for you to listen to? If so, I understand.” Don’t take it personally. Not everyone can sit with uncomfortable emotions – their own, or someone else’s.

Say what you need to get out

Set limits on your vent by being mindful of what you need to say. Signal you’re done by expressing appreciation, “Thanks a lot for listening. It helps to have a listening ear.”

Be realistic about your expectations

Your listener may have a few words of support, a few suggestions, or nothing to say at all. Remember, people do the best they can and all you asked was for them to listen. If your listener does respond with a whole list of solutions or orders, you have a choice as to whether you want to receive this information. Who knows? They may have a perspective you haven’t thought about, but you can also say, “You’ve been very helpful by just listening. I don’t expect you to make it better.”

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Healthy Venting Can Be A Way Of Connecting

Starting with your partner – you may both be walking around your home stepping around the elephant that keeps getting in the way of your communication. What’s the name of that elephant? Something like frustration, disappointment or fear? Address the elephant by name.

Talk to each other about feelings, beginning with encouraging each other to vent as needed.

Offer to be a listener, too

Remember that your listener, whether your partner or another listening ear, may have some of their own challenges and frustrations and need a listening ear, as well. Be willing to return the favor.

Parents, give your kids a chance to vent

Make your home a safe space for talking about emotions. Talk about your feelings and encourage your kids to talk about theirs. Let your children know you are open to hearing about how they’re dealing with life as we currently know it. They also are feeling a lot of emotions.

By the way, there is no greater way to connect with another person, your partner, your children, a family member, a friend, a co-worker than by listening. Really listening... with an open mind.

If you need a good vent, have at it. Then give somebody else a turn. We’re all in this together!

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About Gary McClain

Gary McClain, MS, PhD, LMHC, is a therapist, patient advocate, blogger and author, specializing in helping clients deal with the emotional impact of chronic and life-threatening illness, as well as their families and professional caregivers. He works with clients to understand and cope with their emotions, learn about their lifestyle and treatment options, maintain compliance with medical regimens, communicate effectively with the medical establishment, and listen to their own inner voice as they make decisions about the future. Gary welcomes your questions and comments.

E-mail: gary@JustGotDiagnosed.com

Website: www.JustGotDiagnosed.com

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Our entire team is committed to maintaining the health and wellbeing of those we are privileged to serve.

For updated information regarding our response to developments related to COVID-19, a letter from our CEO, and early refill requests, please click here.

Stay healthy, and be well.

We are with you and will get through this together.

---

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

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We value your privacy. Review our Privacy Policy here.

Being Certain in a Time of Uncertainty

By Shelby Smoak, Ph.D.

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How are we to reopen our country, our states, our cities, our bleeding disorders community, in this time of great uncertainty? How can we be certain we are doing the right things and doing them the right way?

Ultimately that kind of certainty eludes us. Only time can reveal those answers. But there are other things of which we may be certain, and it is these things upon which we can build confidence in moving forward and reopening.

Let’s look at what we can be certain of in these uncertain times.

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We now know far more about COVID-19.

In early March when most of the U.S. went on lockdown and a State of Emergency was declared, fear drove so many things: What is COVID-19? How do you get it? What happens if you catch it? How can you stay safe? While our fear of things – snakes, ledges, fire, deadly viruses – is an inherent survival response and in many cases keeps us alive, we cannot live in a continuous, unending state of heightened fear. Our bodies and our minds cannot endure such constant stress. With many questions answered, our fear has diminished, and our response to navigating life with COVID-19 can be more rational.

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COVID-19 is not going to magically disappear in the next few months.

While it was wishful thinking to hope that summer would take care of COVID-19, we know that didn’t happen. Accepting that COVID-19 is still here will help you make choices that are smarter and safer as we move forward with reopening stores and businesses. Assume that COVID-19 is with you in those places, and protect yourself against it.

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Social distancing can reduce COVID-19’s spread.

Your proximity to someone who is possibly contagious has an enormous impact on the virus’s ability to infect you.

More space equals less risk. It’s as simple as that. The CDC has continually emphasized that “maintaining 6 feet social distancing remains important to slowing the spread of the virus.”¹

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Handwashing for 20 seconds can reduce COVID-19 infections.

Handwashing is something everybody can do and it goes a long way toward keeping you safe. For one, soap molecules have been clinically demonstrated to kill the virus by attracting the virus to the soap molecules, dissolving the virus’s protective barrier, and dislodging it from your hands.² The CDC recommends washing your hands especially when you’ve been in public places, and always before touching your eyes, nose, or mouth – a thing the average person does 23 times an hour – since knowing this is how the virus enters the body.³

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Wearing a face mask will reduce the spread of COVID-19.

Although this has been debated and the resistance to mask-wearing has become a hot topic, the certainty is that masks will reduce the risk of exposure. They do this in two ways: first by reducing viral transmission and second by quelling a person’s habit of touching their face. Combined with social distancing, masks provide another layer of defense against COVID-19.

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Mitigation strategies like social distancing and mask-wearing will be an individual choice in many situations.

States, businesses, communities, and bleeding disorders organizations are all responding differently to reopening. Although the CDC has issued guidelines to advise these entities on reopening, a uniform message is lacking as is any enforcement. For example, the Virginia Department of Health, where I live, “requires people to wear cloth face coverings when spending time in indoor public settings.”⁴ However, the Virginia Department of Health does not have a police force, nor is it the responsibility of local police departments to necessarily enforce this. Some Virginia businesses have placed a greeter in the doorway to turn away those not wearing masks, but most do not police their stores either.

In many states there are no face mask requirements, reinforcing even more the individual choice involved in that protective strategy. Ultimately, individuals, business owners, and communities will shoulder the burden of what reopening looks like, and it will differ from person to person, store to store, community to community. Make choices that keep you safe, even if those decisions are not universally adopted in the place where you live.

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We will get through this.

This is absolutely certain. Nobody can say what the other side of this looks like, but all can agree we will get there. History and our survival of so many terrible things are our examples here. I will turn to the plague of the 1660s and an author I admire, Samuel Pepys, who kept a diary of his experience of that time. He lived in London when the plague struck in 1665. It is estimated that as many as 1000 people were dying daily in The Great Plague of London – a death toll that is sadly, but eerily equal to the current number of daily deaths in the U.S. due to COVID-19.⁵

Out of fear, Pepys left London for a cottage in the countryside. While that is a luxury most of us do not have, it certainly highlights the sage advice of social distancing because Pepys survived and returned to London the following year. He found the businesses reopened, church members gathering, and the community filled again with life. London had survived. Life was returned and the city reopened.⁶

The United States will as well.

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1. CDC. “Recommendations Regarding the Use of Cloth Face Coverings, Especially in Areas of Significant Community-Based Transmission.” 3 Apr 2020. Cdc.gov.

2. Rigby, Sara. “Coronavirus: Is Hand-Washing Really the Best Thing We Can Do to Stop the Spread of Coronavirus?” Science Focus. 13 Apr. 2020. www.sciencefocus.com.

3. CDC. “Keeping Hands Clean.” www.cdc.gov.

4. Virginia Department of Health. “Cloth Face Covers.” 8 June 2020. www.vdh.virginia.gov.

5. Diamond, Dan. “White House Goes Quiet on Coronavirus as Outbreak Spikes Again Across US.” Politico. 10 June 2020. Politico.com.

6. Aslet, Clive. “Samuel Pepys’s Merry Plague-Time.” The New Criterion. May 2020. 78-80.

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Our entire team is committed to maintaining the health and wellbeing of those we are privileged to serve.

For updated information regarding our response to developments related to COVID-19, a letter from our CEO, and early refill requests, please click here.

Stay healthy, and be well.

We are with you and will get through this together.

---

Stay informed on the latest trends in healthcare and specialty pharmacy.

Sign up for our monthly e-newsletter, BioMatrix Abstract.

We value your privacy. Review our Privacy Policy here.

Bleeding Disorders, Military Life and TRICARE®

By Justin Lindhorst and Maria Santucci Vetter

Members of the US military dedicate their lives to service. And for that, we give our sincere thanks to every member of the military, as well as their families!

Part of that commitment means being ready at a moment’s notice to pick up and move to a new city, a new state, or in some cases, a new country!

For active duty service members raising a family, deployment and frequent moves can be challenging – especially for those raising a child with a bleeding disorder.

Studies have shown that military family life includes prolonged separation, frequent moves and facing multiple stressors in a short time.(1) Further, families with military health insurance have been shown to experience access to care issues when compared to other medical benefits.(2)

This interview explores the challenges of military life from the perspectives of two families in the bleeding disorders community. We spoke with moms, Kalee and Denise, and their spouses and active duty service members, Ryan and Jon. Their candid responses show what raising a child with a bleeding disorder in a military family is like.

Kalee, Ryan, Penny, Henry

Denise, Jon, Jacob, Ava, Emma, Cora, Brody

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First, let’s get to know you a little better. Where are you and your spouse from, where did you meet and how long have you been together? What is your spouse’s service division, rank, and current location?

Kalee: I am from Wisconsin, a little town called Mauston. My husband is from Palatine, IL a Chicago suburb. My husband, Ryan, and I met in college in Milwaukee, WI. We’ve been together since 2007 and married for 10 years. Ryan is in the United States Air Force based at Scott AFB, Major (O-4), currently deployed to Kuwait.

Denise: Jon and I are both from Fresno, California. We met while working at a hotel restaurant in Fresno. We dated for a year and have been married almost 15. My husband is in the Army, E7, currently stationed at Scofield Barracks in Hawaii at Division Artillery doing many jobs. His main position is as a nurse, but he has done other tasks including running the ER in Kuwait and drill sergeant at Fort Benning Georgia, to name a couple. 

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What were your first thoughts or concerns about becoming a military spouse/family? 

Kalee: I was too young and naive to know what the military was all about. To my 22-year-old self, I was in love and it was an adventure. It still is!

Denise: My hubby joined the army young. Looking back, we may have chosen differently but we are very thankful for the army healthcare.

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Tell us about your family. Was there family history of a bleeding disorder?

Kalee: We have 2 children, Penny almost 4—carrier status unknown, 2-year-old Henry who has severe hemophilia B, and we have a baby boy on the way due in January. We had no bleeding disorder history whatsoever.

Denise: Jacob is 13 years old and has severe hemophilia B, 9-year-old Cora has mild hemophilia B and is a carrier, 7-year-old Ava and 3-year-old Emma are not affected, and our youngest, 3 month-old Brody, has severe hemophilia B. I am a carrier and my levels put me in the mild range as well. Since I was adopted my parents had no idea my factor level was so low and looking back so many instances make much more sense.

Henry

Brody

Jacob

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How was your child diagnosed; how did it affect your family?

Kalee: Henry was diagnosed 2 days after his birth when his circumcision would not stop bleeding. At first, it really shook our family. As time has gone on it has made my husband and I even closer. My son’s hemophilia has made me step back and really appreciate the important things in life. It is still so new to us and we are constantly learning, but I feel like it has made us slow down, smell the roses and be more patient parents.

Denise: Jacob wasn’t diagnosed until 6 months old during a routine heel stick that bled excessively. We ended up in the ER where he was tested. We were able to get the girls tested about 2 years ago as part of a case study. Jacob’s diagnosis was such a shock. Even worse, right after we found out, my husband had to deploy for the first time. I ended up going home to my parents to have additional help while he was gone. It was very hard for my hubby and me. We knew he was going to be gone for a significant amount of time – it ended up being 15 months in Iraq. When Brody was born, we knew what to prepare for and had him tested right away. At 8 days old we confirmed that he has severe hemophilia.

Jon: The initial unknown regarding what to expect from day-to-day was hard. It was very difficult to send my wife and newborn child to her mother’s as I deployed to Iraq. I worried tremendously but did feel good that they were in the hands of other family members while I was away.

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Have your feelings about your child’s diagnosis changed over time?

Kalee: In the beginning, the devastation of not having a, “healthy newborn,” was overwhelming. It took about a year for us to really catch our breath. There was so much to learn and at first, the scary stuff was front and center in our brains. As soon as Henry went on prophy, our lives changed. Things shifted back to normalcy. Other than some extra work with infusions and give or take some hard days, bad infusions, or emergencies, we feel we are in a really good place with the diagnosis.

Denise: The shock gives way to acceptance and things do get easier. Self-infusion has been a game-changer for us. Jacob infuses himself (with us there) and that has been a big confidence booster. He also no longer has a port, so fevers don’t scare me as much as they used to. At times, Jacob doesn’t realize how various situations can affect him compared to kids who don’t have hemophilia. Things have gotten easier since the initial diagnosis, yet there are always times of worry and concern, though those times have become fewer and further. With Brody, the whole process is starting again.

Jon: For me, it hasn’t changed too much really. Especially after we received additional diagnoses for my oldest daughter, my wife, and now my 3-month-old, the challenges take on different forms as time goes on. I’ve extended my military career in part to make sure my family retains access to care.

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Military Life 

How often has your family experienced a PCS (Permanent Change of Station) and what has that experience been like when caring for a child with a chronic health condition?

Kalee: We have moved 6 times, but only once since Henry was born. Moving has been tough, time-consuming and emotional. Organizing everything, speaking with new people and explaining the diagnosis is the most exhausting part so far. For example, our last pediatrician was in the know about sub-q options for vaccinations. Getting the new pediatrician on board took about two weeks because he did not take my word for it. I had to drag both kids to the appointment, have the sub-q vaccination request turned down, contact the HTC, get the okay from the HTC, get in contact with the pediatrician to discuss, then have the pediatrician go to the immunization clinic in the military treatment facility (MTF) to explain the reasoning for the sub-q vaccinations.

Ryan: I was actually supposed to deploy approximately 30 days after Henry was born. Due to the challenges and stress associated with his diagnosis, combined with the support my family needed during this time, the military deferred my deployment. This was immensely helpful to get a handle on the situation and come to terms with what Henry’s care and medical needs would be. I eventually deployed when Henry was closer to 2 years old. While it was indeed stressful for my wife to handle Henry’s needs on her own, his diagnosis has become a normal part of our lives and we are comfortable with the situation at this point. It’s a process for many things. Getting new care providers is also stressful. We were very comfortable with our caregiver in New Jersey but having to search and find a new one is time consuming, stressful and repetitive.

Denise: We’ve moved a lot. Officially, we have PCS’d I believe 7 times, but we have moved for one reason or another about 14 times. Moving and re-establishing care is always an issue. First, we have to get the move approved by the Exceptional Family Member Program (EFMP). Once we move, we have to see a primary care physician before we receive a referral for the hematologist. We have faced challenges where the people we’re working with have a hard time understanding the nature of hemophilia because my son does not appear to be “disabled.” Once we had to stay in a hotel for over two months while we waited for a more permanent residence. At the time, with 4 kids and 2 big dogs, being stuck in a tiny room was pretty tough, to say the least. We basically have to make sure we always have the medications and supplies on hand to prepare for the move until we can get to the next semi or permanent address.

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What has been your greatest challenge as a military family raising a child with a bleeding disorder?

Kalee: Our greatest challenge has been the medical side of it all. In the military, your doctors can be deployed, or PCS’d and you find yourself starting from scratch with someone new. In the 3 years we were on the East Coast, I alone had 3 different primary care physicians. Henry has already had 2 different primary physicians. Also difficult is receiving medical care when traveling away from the home station. When my husband is gone for long periods, it makes more sense for me to stay with my family. This can create challenges for receiving medical care. Making sure we have a treatment center and infusion options while not at our home station has been challenging.

Ryan: Being geographically separated from extended family is the greatest challenge. It would be far easier to have grandparents, aunts and uncles nearby to help with support when we need to do infusions or ER visits, etc.

Denise: I would have to say the greatest challenge is the constant moving and trying to re-establish medical care. When my husband is awaiting orders, we have additional screening to go through to make sure our placement includes access to the medical professionals required for our family. Every move requires finding a new primary care provider, then we are referred to a hematologist. We do our best to make it through these “in-between” times, but sometimes the wait conflicts with our needs – especially if a factor script expires or we get low on product before we can secure an appointment.

Kaylee, Jon, Penny, Henry

Jacob, Ava, Emma, Cora

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Have you experienced any issues accessing care or services?

Kalee: Our spouses can be gone for long stretches for training and deployments. During those times, being alone and away from family is difficult with small children. Especially if you just moved to a new place and haven’t made good friends yet. This is my current situation. I haven’t had the chance to really make solid friendships where you can ask them for family-style favors (i.e. drop kids off in an emergency). I am currently alone as my spouse is deployed and my family is 5 hours away. It’s easier for me to drive and stay with my family and have help for an extended time; however, there are hardly any nearby TRICARE military treatment facilities where my family lives. This means we have to rely on out-of-network care and getting that approved is hard, especially because I’m told it is my choice to go stay with family, which is true, but it’s not my choice to have my spouse gone and not have any local help.

Ryan: Another issue is explaining Henry’s diagnosis to new doctors, nurses and medical insurance coordinators every time we move or switch primary care providers. Most general care practitioners seem to have limited knowledge of the specific needs and we have to do a lot of educating to be given referrals and proper attention.

Denise: For the most part we’ve been very fortunate and have not experienced too many problems accessing care or services other than those I described earlier. I remember one time the pediatric hematologist we were seeing closed his practice. It was quite a scramble to find another physician versed in hemophilia and then obtaining a new referral. There was a lot of back and forth on the phone, and when we finally got things settled, the hospital was over two hours away. That was definitely challenging!

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How have you worked to overcome or mitigate any challenges?

Kalee: I have focused on getting involved in the hemophilia community and meeting other families. It has helped me to talk out any challenges with other experienced parents. I reach out to get their perspective and advice. I have attended a couple of educational dinners and the Coalition for Hemophilia B Symposium this last March as well as their Meeting on the Road in St. Louis. I also joined the St. Louis Gateway Hemophilia Foundation. I find that the more I attend and the more hemophilia families I meet, the more I learn!

Ryan: To help educate providers and advocate for Henry’s needs, my wife keeps meticulous records of all doctor visits, medical records and infusions. The military ensures family members who need special medical services are prioritized and considered to determine an optimal balance between the military member’s career path and the family member’s medical needs. Working together helps minimize challenges. Henry’s diagnosis was at the forefront of the military’s consideration when I was last re-assigned to a new installation. We were very fortunate that the assignment I was given provided excellent care for Henry and was also my top choice for career goals.

Denise: We are very grateful for the care we receive through TRICARE. I always try to do my homework to minimize the impact of all the moving around. I am very persistent when it comes to my kids and their care. As soon as we move, I quickly set up all the required primary care appointments so we can get the appropriate referrals in. That’s one thing I do wish was different – for those with lifelong chronic illnesses, requiring a primary care appointment for a referral to a specialist can create setbacks and delay our access to care. Hopefully, one day, that will change.

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What has been your greatest success?

Kalee: So far, our greatest success is doing home infusions with a nurse once a week. We were not sure how Henry would react and were told if it didn’t go well, we would need to have a port placed. I worked with him on play therapy and tried to stay organized with infusions and make it a family event. We usually do popsicles or suckers and get pizza and wings. It’s now a family affair - we all help. Our daughter Penny is our bandage girl, my husband and I prep the medication with Henry and let him pick which spot he wants his infusion. He’s come a long way from being burrito wrapped and needing 3 people to hold him steady - now it takes just 2 and Henry mostly sits still.

Ryan: Generally speaking, our biggest success with Henry’s diagnosis has been learning to understand hemophilia and coming to terms with how manageable it is. Once we realized children who grow-up with hemophilia today live very normal lives with proper care, it made the scope of what we were dealing with seem much easier to handle. The care and consideration we have received from the military with Henry’s diagnosis has been excellent.

Denise: Everything we’ve gone through has made us stronger and the ability to adapt has become one of our strengths as a family. That adaptability has helped us immensely as a family. Another great accomplishment occurred when Jacob learned to self-infuse. He has also loved the opportunity to go to bleeding disorders camp.

Jon: Serving our country and being able to provide my children access to the care and services they need has been my greatest success. It definitely hasn’t been easy, but we do it daily and will continue to get through it together.

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Resources

What kind of resources are available to military families? What other issues have you encountered?

Kalee: Our main resource has been the Exceptional Family Member Program (EFMP). This program provides advocates to help you navigate parts of the medical system, provides childcare, and has events to connect with other families. I think the military tries hard to take care of their families. The hardest part is taking advantage of all the resources they offer especially when the military member is deployed. We have been able to obtain childcare through the EFMP program. It was a challenge finding the right people, but the option is there.

Many resources exist, but some take a lot of paperwork and a lot of effort to be able to participate. There are always requirements required to be a part of the program. In my case, there always seems to be a missing document. It’s never simple and straight forward, there are always a bazillion steps, or that’s what it feels like to me. There’s a lot of red tape. In terms of support, it all depends on the service member’s squadron and whether they have good leadership and value connection. Some really reach out and help each other while others are more private.

Ryan: There are many resources available. For us, the best resource has been Respite Care, which offers up to 40 hours per month of childcare to help alleviate the challenges associated with military children with difficult medical diagnoses.

Denise: Juggling the medical stuff is a challenge, but school changes for the kids have been incredibly difficult. Two of the 3 who are now in school are having a hard time adjusting and adapting. That isn’t because of hemophilia, but because of the military lifestyle. Concerning childcare, since our family is large and we now have 2 with severe hemophilia, I’ve never had them in childcare. One of our children has severe anxiety so it makes the moves and transitions even harder than normal.

Kayle, Penny, Henry

Jacob, Brody

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In Closing

How has having a child with a bleeding disorder changed your life and what does the future hold for your family regarding continuing military service?

Kalee: Before Henry’s diagnosis we felt like we knew our path in life. We could see it all spelled out. Now it’s just given us pause. We are having to slow down and really think through our major life decisions. We don’t know what our future holds for sure. We are grateful we have the option to continue with the military and have very good healthcare.

Ryan: Henry’s diagnosis has limited some options. For example, pursuing overseas assignments and certain assignments in remote locations that do not have the appropriate medical support for hemophilia. However, my wife and I decided even before Henry was born that overseas and remote assignments were not something that we were interested in pursuing while raising our children. In the grand scheme, however, the diagnosis has had minimal impact on my personal career goals.

Denise: Even though we think it didn’t, our lives have changed so much. My husband always wanted Jacob to play contact sports just like he did, so coming to terms with that reality was somewhat difficult. My husband has 4 more years of service and would love to be able to get out at the 20-year mark, but now with the baby’s diagnosis, we are worried about our financial future. With 3 of our children requiring specialty medications, making any change is a little scary.

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What advice would you give to another military family with a bleeding disorder?

Kalee: The hemophilia community reminds me, in a sense, of military families - it is an instant bond that happens because of a shared lifestyle. The advice I would give a new family would be to get out there and join the hemophilia community. I am so glad I did! It has helped me overcome fears. I’ve learned a ton and have made new friends!

Denise: Staying strong is the hardest, yet the best thing to do. There is always hope and there will always be others who are going through, or have gone through, similar times. Although it’s often harder to say than do, reach out for help if you need it!

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Resources:

1. Huebner, Chadley. (2018). American Academy of Pediatrics. Health and mental health needs of children in US military families. (143,1) doi: 10.1542/peds.2018-3258

2. Rapaport, Lisa. (2019). Physicians Weekly. US military families face challenges getting healthcare for kids. https://www.physiciansweekly.com/us-military-families-face/

Preserving Continuity of Care for Military Families

By Marc Stranz
Chief Clinical Officer
BioMatrix Specialty Pharmacy

Continuity of Care (COC) is a concept centered on the quality of care patients receive over time. Unfortunately, some populations are predisposed to issues with continuity – including those serving in our armed forces.

Frequent moving, prolonged separation and challenges related to military health benefits can impede the continuity of care for members of the military and their families. One analysis found that 44% of military families caring for children with special healthcare needs did not receive assistance coordinating care across providers.(1)

Military families have also reported approval delays and issues related to receiving prescription medicine or special medical equipment for their child.

Though military families face COC challenges, specialty pharmacies are uniquely poised to help navigate these issues – preserving continuity and improving health outcomes.

Studies show when continuity is high, outcomes improve.(2) Fewer emergency room visits, increased adherence to therapy, improved patient satisfaction, and lower overall healthcare costs are just a few of the documented results when continuity is present.(3) Continuity of care was rated as a top priority by patients and caregivers dealing with chronic health conditions.(4) Though the importance of COC is widely acknowledged, maintaining it in a fragmented health system can often be difficult.

Specialty pharmacies play an important role in continuity of care. Medication therapy management (MTM) is one of the primary tools a specialty pharmacy wields to positively influence COC. The American College of Clinical Pharmacy defines MTM as, “A distinct service or group of services that optimize therapeutic outcomes for individual patients.” Broadly speaking, this involves tailored clinical assessments, focused patient education, and interventions designed to promote adherence, reduce side-effects, and avoid negative drug interactions. A well-designed MTM program provides patients the tools and knowledge to effectively manage their condition based on individual circumstance. Over time, clinical assessments, dispensation, and utilization data provide a comprehensive view of patient response to prescribed therapy.

Experienced specialty pharmacies understand high levels of patient engagement are required for MTM programs to be effective. Through ongoing communication, clinical and support staff at the specialty pharmacy develop a detailed understanding of the day-to-day challenges faced by patient and caregiver. For military families, this could mean proactive planning with the pharmacy before a move or deployment to avoid interruptions in care. Working together, pharmacy and patient anticipate and mitigate potential disruptions to therapy. Beyond filling a monthly prescription, the specialty pharmacy becomes an advocate and partner in the ongoing management of chronic health conditions.

Patients access healthcare and medication across a range of disciplines and locations. This is especially true in populations that move frequently and with individuals who have chronic health conditions. Coordinating care across healthcare access points is another way specialty pharmacies impact COC. Leveraging detailed clinical knowledge with individualized patient information, pharmacists help providers fine tune treatment plans and promote communication across healthcare channels. Highly trained care coordination teams including billing and intake support clinicians in promoting continuity. These professionals promote COC by helping patients understand their coverage, coordinating complex health benefits, securing prompt authorization for prescribed therapy, and providing access to resources reducing barriers to care. Using a collaborative approach, the specialty pharmacy team proactively coordinates services between patient, provider, payer, and other community-based resources to overcome challenges, maintain continuity, and promote safe, effective care.

Continuity of care is a critical component of quality healthcare for all consumers. Specialty pharmacies with a well-defined MTM program and high levels of patient engagement are well equipped to maintain COC in the complex and ever-changing healthcare environment. By tailoring programs to meet the unique needs of specific populations predisposed to continuity challenges – such as military families – specialty pharmacies are bridging gaps, promoting communication, and ultimately helping to produce the positive outcomes continuity of care is best known for.

REFERENCES

1. “Experience of Children with Special Health Care Needs in Tricare.” Https://Www.tricare.mil/Survey/Hcsurvey/childIssueBriefJan27_rev.Pdf, Health Care Survey of DoD Beneficiaries. Nd.

2. Walraven, Carl Van, et al. “The Association Between Continuity of Care and Outcomes: a Systematic and Critical Review.” Journal of Evaluation in Clinical Practice, vol. 16, no. 5, 2010, pp. 947–956., doi:10.1111/j.1365-2753.2009.01235.x.

3. Wick, J. “Broadening Pharmacy’s Role: Continuity of Care.” Pharmacy Times, 2006, www.pharmacytimes.com/publications/issue/2006/2006-05/2006-05-5537.

4. Sav, Adem, et al. “The Ideal Healthcare: Priorities of People with Chronic Conditions and Their Carers.” BMC Health Services Research, vol. 15, no. 1, 2015, doi:10.1186/s12913-015-1215-3. 

Three Simple Ways Medical Providers Can Improve Therapy Adherence

Filled prescriptions that lay wasting in pill boxes and bottles do nothing for patients while costing payers $ billions each year. No one can ‘make’ people stick to their treatment plans. The answer to “are you taking your medications?” is usually “yes.” But the statistics tell us that “yes” often means “sometimes” or “no”. And while it’s common to embellish lifestyle choices to our healthcare provider (i.e. when 1-3 drinks per week really means 5-7), not adhering to a prescribed treatment plan is a big deal. And can be very dangerous.

Data shows that in 2018, over 3.7 billion retail and mail order prescription drugs were filled at pharmacies by payers costing them over $510 billion.(1) And only 30% to 50% of drugs were being taken as prescribed. In other words, roughly $250 billion worth of drugs had 0 impact and were thrown away. The scariest part is that roughly two-thirds of those (many times life-saving) prescription drugs were intended to treat chronic, many times deadly, disease. (2) 

Used to treat chronic, more complex conditions, specialty drugs are especially susceptible to non-adherence and its consequences. While treatment for chronic disease can be cumbersome, time-intensive, and bring about more side-effects, there’s a lot more at stake when, for example, a cancer patient misses their critical dose. While adherence technology (e.g. reminders built into pill boxes and medication sensors) will likely be an important component in the future, nothing replaces personal interactions with patients. Here are three tips for patient interaction to help improve medication adherence. 

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Listen and Respond with Empathy

In the face of non-adherence, an obvious question to ask patients is ‘why’. And while that may seem like the first logical question to ask, it can also feel accusatory. 

A recent Pharmacy Times article gives some good advice on how to better spark the adherence topic. This is inline with the “motivational interviewing” method that focuses on decisional balance and internal motivation. For example, instead of starting the conversation with “Why aren’t you taking your medications?” you can rephrase the question as, “Many people have trouble taking their medications on a regular basis. Do you find that this is the case for any of your medications?”3 The phrasing of the second question removes the blame and shame by lending the perspective that many people struggle with taking their medications, it’s not just ‘you’.

When continuing the conversation, it’s easy to instantly get into advice-giving mode before gaining a little more understanding of the patient, especially when they are clearly not following their treatment plan. However, if the patient feels that you’re listening in a non-judgmental way and have some empathy first, they’re more likely to be honest, come to their own conclusions, and be more open to what you have to say. Examples of some questions to guide the conversation include: 

• Sometimes we get busy and we do not take all the doses of our medicines.

  • How often do you have difficulty remembering to take all your medicines?

• Taking medication every day is a real inconvenience for some people.

  • Do you ever feel hassled about sticking to your regimen?

  • What gets in the way of taking your medication as prescribed?(3)

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Provide Multiple Means of Education for the Patient

To the prescriber and pharmacist, the correlation between following one’s treatment plan and positive outcomes is a given. To the patient who may not be seeing positive results right away (and on the flip side is seeing only the negative—i.e. side effects, high drug costs, and time intensive routines), it may not be so obvious. Especially with specialty drugs, educating the patient beyond just asking “are there any questions with your medication?” encourages adherence. Some ways to do this include:

• Offer both in-person and online training for self-infusible and injectable medications

• Provide programs that discuss the importance of therapy adherence and positive self-management

• Encourage community outreach and support through events and online platforms

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Check In Frequently

Similar to New Years Resolutions, we all have intentions of sticking to our plans. But without consistent and frequent accountability, intentions and will-power run dry. An online article published in U.S. Pharmacist, presents multiple studies where increased in-person pharmacist interaction led to increased adherence rates.4 While in-person interactions are typically the most effective, it’s unrealistic that all patients requiring specialty pharmacy drugs are within reasonable range of their physical specialty pharmacy location and/or are even able to get there on a regular basis. The good news is that text messaging has also shown to be effective. The same article cites a study where text messaging doubled the odds of medication adherence and improved overall adherence rates by 17.8%. There are several platform options available for sending automated texts at desired frequencies, encouraging a response and further dialogue. 

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Medication adherence takes a joint effort in open communication between the patient, prescriber, and pharmacist. Allowing patients to feel heard in a non-judgmental environment, providing patient education, and frequently checking in with the patient all contribute to the patient taking more responsibility for their health. This leads to higher adherence rates, ultimately improving therapeutic outcomes.

BioMatrix Specialty Pharmacy is committed to provide an individualized clinical approach to specialty pharmacy and infusion services that improve health outcomes and empower patients to live each day to its fullest potential. Learn more. https://www.biomatrixsprx.com/about-us

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1. KFF website. https://www.kff.org/health-costs/state-indicator/total-retail-rx-drugs/

2. World Health Organization. Adherence to long term therapies: evidence for action. Geneva: WHO; 2003.

3. Marden B, Martineau C. Emphasize Medication Adherence to Patients. Pharmacy Times website. https://www.pharmacytimes.com/publications/health-system-edition/2019/September2019/emphasize-medication-adherence-to-patients

4. Medication Adherence: The Elephant in the Room. U.S. Pharmacist website. https://www.uspharmacist.com/article/medication-adherence-the-elephant-in-the-room

Infused With Music: Dave Colvin

By Shelby Smoak

After over 30 years earning a living as a numbers guy and working in accounting positions while trying to perform and write songs in the off hours, Dave Colvin, a man with hemophilia A, finally shed that day-to-day job and traded it to focus on his real passion—music.

It was a career move he had put on hold since his college days when he started Illinois State as a music major, but changed because of state funding and the increased availability of jobs in accounting and cash management. But in 2006, Dave started his own publishing company, Arnybarn Music (BMI), and began professionally recording his songs and pitching them to other artists and labels, and he hasn’t looked back since.

Dave’s big break came in 2011 when one of his songs, “Gently Falls,” was selected for use in an episode of CBS’s Star Trek: Enterprise. The song aired in Season 2’s second episode, “Carbon Copy,” and can now be streamed on Netflix, CBS All Access, Hulu, and Amazon. Catch Dave’s song in the background at around the 10 minute mark. For Dave, it is an exciting time and a validation of his music. “It is so amazing to think that each month thousands of people around the world hear my voice and my song!” he enthuses. “My quarterly royalty report shows some 15,000 to 25,000 views per website!”

The success continued when another song “You are Living On” was released by Ronan Parke who was runner up on the 2011 season of Britain’s Got Talent. While Ronan Parke’s version differs from the country-infused, laid-back delivery of Dave’s own performances, the emotional tug of the song gets lifted into a pop gem.

The song was born from Dave’s grief at losing his parents within a few months of each other:

Just the other evening

We were talking on the phone.

Your advice was sure and steady

But your voice was not as strong.

Now that body’s finally failed you,

Heaven’s called you to come home.

It is at once specific, opening with a clear scene anybody can relate to, yet Dave consciously avoids a strict script after that, assuring that the lines will resonate with just about any listener. “To be successful, one needs to be able to write something that will be universally felt or understood,” he says, the philosophy that likely garnered this song as a hit. “It has been humbling to see the comments [Ronan Parke] fans have posted about how my song has touched their hearts,” Dave says. “It makes the years of trying and getting rejected time and again, all the more worth it!”

Those years, of course, came with the normal obstacles artists face and then the not-so-normal trials of having a bleeding disorder.

“Prior to prophylaxis,” Dave says, “I would often get a bleed from performing, usually an elbow from playing the guitar.” In those early years, he remembers going to the hospital for cryoprecipitate before his band performed. Dave continued infusing and performing, especially at a yearly festival in his hometown of Decatur, Georgia. About a decade ago, he had to let the touring go. Things came to a head at one show where Dave tripped on the stage’s drum riser and broke his elbow. “As I age, I do not perform out much anymore simply because it has gotten difficult to even go up a few stairs to get on stage,” he says. “The past few years I mostly record from my home studio in Nashville.”

Full of wisdom and advice, Dave advocates that to be successful in music, three ingredients are required: a love of music, patience and a thick skin, all things he owns in spades. Dave spends his other time as a father and grandfather and is thankful for singing through over forty years of marriage. He’s also working on an autobiography but says he’s only up to 1994 in the yearly chronicle.

While waiting for that, you can enjoy Dave Colvin’s music now at: https://www.arnybarnmusicgroup.com/music

Infused With Music: Emily Champagne

By Shelby Smoak

After attending an orchestra concert in elementary school, Emily Champagne, who has von Willebrand Disease, knew she wanted to play the violin. For the twelve years since that first concert, she has done so and has made it her dream pursuit.

At 23, Emily’s life is taking off. She is recently married, spends quality time with family and friends, enjoys reading and playing video games and holds down a steady job as a grocery cashier. But she pines for her musical break. “I hope to one day get a job as a professional violinist in an orchestra,” she says.

Emily has performed in a plethora of string quartets and chamber orchestras, including the Suncoast Super Strings, conducted by violin virtuoso Itzhak Perlman, who has been the equivalent of a rock star to Emily. “Growing up, I always would listen to the music of Itzhak Perlman,” she states with excitement. “He is an extremely talented violinist, and someone I really look up to!”

When Emily got to perform in a concerto under Perlman’s direction, she was “beyond excited.”

She says, “To be able to perform in front of my violin idol was a huge deal,” and adds, “When I got the phone call stating I was accepted into the program, I remember crying out of happiness. It was such a once-in-a-lifetime experience to be able to work with a world-renowned violinist.”

She has also traveled to Europe with the local youth orchestra and performed in Salzburg, Vienna, Prague and Munich. During high school and community college, Emily served as concertmaster and was appointed co-concertmaster of the University of Central Florida (UCF) symphony orchestra for the 2018-2019 school year.

If you ask Emily about her bleeding disorder, she indicates that it isn’t slowing her down. “VWD hasn’t really affected my music,” she says. “It’s an activity I know I can enjoy without having to worry about my bleeding disorder.” Music helps her escape the challenges of her bleeding disorder.“ To her, it offers a form of expression she can’t find in other places. “You can compose songs that show how you feel, or simply play music to get your mind off of things,” she says.”

Having just graduated with her Bachelor of Music in Violin Performance from UCF in May of this year, Emily’s dream is to now perform in chamber groups and a professional symphony orchestra.

Violin has been a constant in her life and is even something she can lean into if she is having medical issues. So, while Emily may not have everything figured out yet, she is certain about violin: “One thing for sure is I know I’m going to keep playing violin!”

Infused With Music: Maxwell Feinstein

By Shelby Smoak

When I get Maxwell Feinstein on the phone for our interview he is walking the streets of New Jersey on his way to Silver Horse Sound, the recording studio where Maxwell can be found tracking his own music, streaming live music posts on Facebook, or working with other artists who have booked time with him.

Today he has two rehearsals, a bass tracking session, and a mix session. “Tomorrow sees us doing two more recording sessions unrelated to the session previously mentioned and I’ll be meeting with a potential songwriting partner for some children’s music,” he adds. In a world where earning your keep with music has become an almost impossible task, Maxwell, a person with hemophilia, is able to keep things moving.

Maxwell got his first guitar at age eleven inspired by Nirvana’s “Smells Like Teen Spirit,” and the “teen spirit” to play music struck hard. “I had been participating mostly in choirs or theater before this,” he says, “with brief flirtations (weeks of interest at most) on violin, flute, clarinet and saxophone.” But once Maxwell found the guitar, he took school hours to steal away into an unused handicapped bathroom which he transformed into his band room. “People used to use that space as a make-out room,” he says, “and I would just sit there practicing.” Maxwell adds, “If you wanted to get some necking in, you’d have to put up with me practicing” because nothing was getting between him and his guitar.

Now, in addition to running a studio, Maxwell dons a guitar or bass—depending on the need—in a bevy of touring bands: Jaime Della Fave (Jaimerosey), BWQ (or Project BWQ), Terra Electric, The Love Network and Debra Devi.

“My policy is basically that I’ll perform with anyone who asks!” he enthuses. He also writes, performs and records his own music, some of which can be heard on his solo release Round of Sound. In talking about Round of Sound, Maxwell calls it a labor of love with himself and other friends who helped him complete it. “I played most of the instruments save for the drums, and we did it in our rehearsal room just stringing microphones up and grabbing the sounds 60’s style with little regard for sounds bleeding onto the tracks.”

Stand-out track “Mad Dog’s Promenade”, released in 2012, highlights Maxwell’s whimsical style with its off-the-cuff lyrical refrain, “Smile to myself as I walk.” “It’s a song about walking around town, going about my business while musing on how good I have it if I get to go make music when I’m done walking around,” he says of the track. But not all his songs are easy-going tunes. “I’ve written about coping with those I’ve lost,” he reflects, “and I’ve written about loves current and past. I’ll often write about whatever’s interesting to me at any given time.”

And then there is Maxwell’s hemophilia, which, as he says, “visits me when it wants.”

He has lost cartilage in his elbows; played shows with ankle bleeds, knee bleeds and elbow bleeds; dealt with nose bleeds while on tour. “I had a nosebleed from two days before we left on a tour until the last tour day two weeks later,” he says. But it hasn’t stopped him. He takes care of his hemophilia so music can take care of him.

Before ending our interview, Maxwell offers this advice, culled from his own experiences: “Try your best to figure out what makes you happy and what builds community around you and how you can make it grow into something you can be proud of toiling for.” Maxwell has done just that.

Maxwell Feinstein’s music can be found at: http://www.maxfeinstein.com

Infused With Music: Wayne Cook

By Shelby Smoak

With over 40 years of playing music, nobody is more comfortable behind the kit than Wayne Cook. His is a steady rhythm. And his instrument of choice is uncannily fitting as Wayne is the backbone for so much more than songs.

For starters, Wayne, a person with severe hemophilia B, is the current president of The Coalition for Hemophilia B. For another, Wayne is the father of four grown kids and the proud grandfather of three more. Those are a lot of big roles to fill.

Wayne began playing music in 4th grade and through school beat his drums in marching band, jazz band, summer camps and band competitions, winning the New York State Class divisions for marching and jazz bands in the late 1970s. A fond memory from this time was when his school won their state championship and the jazz band burst into the Rocky theme song with Wayne pounding out a double drum solo. “In all the places I have ever played, it will never be as rewarding as playing that event because that truly sealed it for me as a drummer,” he says. At home, he listened to the greats: John Bonham in Led Zeppelin, Ringo Starr in the Beatles, and one of his favorites, Neil Peart in Rush.

“I loved listening to these guys,” Wayne says, “because they could put down great thunderous beats or smooth grooves to some of the greatest songs.”

But life got in the way after school and the drums went silent. That is until nine years ago when Wayne dusted off the skins and began sitting in for cover, tribute, studio and original bands.

More recently, Wayne jumpstarted The Bleeders cover band, a group that includes myself and other persons with bleeding disorders as its core: Phil Hardt, Rick Starks, Kevin Harris. “For years,” Wayne says, “I had this dream about putting together a band with people from the hemophilia community.” The Bleeders just wrapped up a 2-night show at The Coalition’s Annual Symposium, but Wayne’s long-term goal for the project is to perform at other hemophilia events and even work toward a recording.

In talking with Wayne, he admits that hemophilia has had its impact on his playing. Two replaced knees and arthritis settling in his hands and legs have kept him from playing as fast as he once could. “Now, I am more about keeping a good steady beat and good grooves,” he says, adding that “playing drums three to four times a week for a few hours at a time has helped me with my joints.” Ultimately, Wayne says he will continue playing and “keep that cool groove” and will always be a “Rocker.” You can catch Wayne playing near his hometown in upstate New York and at The Coalition for Hemophilia B Music Camp in Nashville this summer.

Wayne can be heard drumming in The Bleeders live recordings, available on Bandcamp: https://thebleedersusa.bandcamp.com/

Infused With Music: Katyrien Hall

By Shelby Smoak

As budding musical songbird Katyrien Hall and almost anyone will tell you, “Bleeding disorders aren’t contagious,” but Kaytrien’s enthusiasm and passion for musical theater is.

Only in her freshman year of high school in the remote calm of Maine, she already has a pedigree of performances and a talent to match. “I’ve always enjoyed playing instruments and singing when I was younger,” she says, and after doing her first musical Dear Edwina Jr. in 7th grade, followed by another role in The Wizard of Oz, Kaytrien was hooked. She describes her next achievement playing the lead role Belle in Beauty and the Beast as “one of the greatest experiences of my whole musical journey so far.” She adds, “It made me fall in love with the whole idea of musical theater.”

One thing that made musical theater especially attractive to Kaytrien is that it was a “much safer place” for her than any other hobby. Kaytrien suffers from von Willebrand disease and platelet impairment and has two siblings with a bleeding disorder. While she participated in volleyball thinking it a safe “non-contact sport,” she still developed bruises and damaged her arms, leading her hematologist to recommend she quit. Luckily, musical theater was there to catch her, but it’s not all safe. “If I am in a scene where someone needs to grab me or do anything aggressive towards me,” she says, “I have to let the bruises come because it’s part of the show. It is hard having to do a scene like that over and over, but I make sure to take care of myself and keep an ice pack on my bruises.”

Let’s hope then her latest role in Hemophilia: The Musical didn’t give her any bruises. When she heard about the opportunity in 2018, Kaytrien filmed almost 100 takes of her audition video before feeling satisfied enough to send it along to Breaking Through, the group coordinating the awareness-raising event. Backed by funding from BioMarin, Hemophilia: The Musical was a work in art therapy meant to bring teenagers together to share their stories with each other as well as with a larger audience.

For her part in the musical, Kaytrien played a young girl afraid of bullying because of her bleeding disorder.

“She is shy and doesn’t want anybody to know about her disorder, Kaytrien says of the part, “but she eventually overcomes the fear and shares her story with others.” Certainly, the musical’s message is one many in our community can relate to.

Now back at home, Kaytrien is practicing alto sax, performing in chorus and jazz band and taking a class in musical theory and composition. She labels the ability to perform “so satisfying” and “one of the greatest accomplishments anybody can have.” If you have a bleeding disorder, Kaytrien advocates, “Don’t let it hold you back. Even if you have to do things a bit different from others, try your hardest to do what you enjoy and be proud of it.” True to form, nothing seems to be holding Kaytrien back. “Music has helped me through every rough situation I have been in,” she says. “When I am 20, 30, or even 85,” she adds, “I intend to keep music in my life forever.”

To watch the performance of Hemophilia: The Musical, visit: https://www.youtube.com/watch?v=dGWqxEalxKQ

Infused With Music: Shawn Decker

By Shelby Smoak

When Shawn Decker finally finds some time in his busy life to chat, it is the Monday after the wildly fun 80’s Prom Dance Party event he organizes and performs at in his hometown of Charlottesville, Virginia.

Not unsurprisingly, this 40-something hemophiliac is suffering from an ankle bleed, the battle wounds of being married to music. “I can deal with this,” he says, because ultimately for Shawn music is beneficial. It heals and “brings you peace of mind and calms you down.”

Shawn is perhaps more widely known through his bizarrely funny memoir My Pet Virus wherein cutting humor he adopts his HIV—a result of tainted plasma products—as a pseudo-pet and narrates how to move forward in life and not dwell on the past. It also is a sort-of love story where his future wife Gwenn plays a central role. Additionally, Shawn is a contributor to POZ magazine where he continues to be a vessel of humorous support to the HIV community.

But Shawn is also a musician. When he was a kid, he fell in love with 80’s synth-pop bands like Pet Shop Boys, Eurythmics, A-ha, and especially Depeche Mode who Shawn got to meet as part of the Make-a-Wish Foundation. Since then, Shawn has channeled that passion into cover songs and original music which he files under his band name Synthetic Division.

The humor that infused My Pet Virus is making its way into his music. Take for example the morbidly funny “I Wanna Be Cremated,” Synthetic Division’s spin on a classic Ramones song: “Twenty, twenty-four hours to go / I wanna be cremated / Just put me in the fire / turn me into smoke / you don’t have to worry / for once I will not choke.” Who wouldn’t die laughing at that? (Two can play at this morbid humor game, Shawn)

This kind of humor wasn’t always the case with Synthetic Division, a band that is now approaching its 20-year anniversary. An early track “Borrowed Time” from the album Bleeding Heart Cadaver darkly asks, “Am I on borrowed time, do I have much time left? / Is it not sinking in that I am checking out.” On their debut album, Tainted Goods, Shawn croons in “The Rain,” “Fade away / Fade away / Who’s going to fade just like the rain?” Even Shawn admits his music is taking a turn and is now more optimistic. “I feel I got the dark stuff out early,” he says, “and have started letting the lighter side come in,” adding, “I’m not afraid to sound cheesy.”

In talking with Shawn, he continuously reaffirms the importance of music in his life and its ability to create a continuous “safe space” which contributes to better moods and a general feeling of fulfillment.

He equates writing songs to going back to being a 13-year-old kid in his bedroom, “listening to music, getting my mind back on track, and getting away from HIV.” In contrast to his more lighthearted and less serious approach to music, Shawn is taking his health more seriously. For most of his adulthood, he didn’t have many bleeds, but in the last decade this has changed, and more bleeds equal more treatment center visits for his necessary infusions.

So finally, Shawn “took matters into his own hands” (literally) and began self-infusing. He is also embracing care for his mental health, a thing that he treats, again, with his music—loading old patches on his drum machine, tweaking sounds on his computer synths, and doing 80’s prom gigs. Ultimately Shawn is making the songs he wants to hear and to him, that is the sound of happiness.

Synthetic Division’s entire catalog can be found on Bandcamp: https://synthetic-division.bandcamp.com

Infused With Music: Elizabeth Vansant

By Shelby Smoak

While she may be a bit too shy to take the stage with her musical talent, Elizabeth VanSant is not shy to bring music therapy to people’s doorstep.

Along with the rigorous demands of a college degree, Elizabeth recently finished her B.M. in Music Therapy at University of Kansas with over 1,200 clinical hours completed. She pulled up her mid-western roots and struck out for the rainy marine climate of Seattle where she has already started working.

“I’ve actually gotten three music-related jobs since moving to Seattle six weeks ago,” Elizabeth explained. One of the jobs includes working with special needs children and young adults, holding weekly social groups and using music to improve their social skills. Another job includes working with infants and toddlers as a music specialist. And a final job offer is so new she is still awaiting details. Certainly, it’s an exciting time for this twenty-something college grad.

Elizabeth’s passion for music started with dance, but the perils of having hemophilia B soon took away that opportunity. “From all the ballet, tap and jazz I was doing,” she says, “I got a stress fracture in my left ankle and was unable to continue dancing.” Enter then the piano, which she has now been playing since third grade. Along the way she has learned flute, guitar and a variety of percussion instruments. She also loves to sing. All these things are made obvious when watching Elizabeth play: she can fluidly sight read music without missing a note and can match the vocal with near pitch-perfection on any song.

After high school Elizabeth sought an avenue to have a career in music and began studying music therapy. She shares, “I immediately connected with it because I realized that I had used playing piano to express my emotions when learning how to self-infuse. I thought to myself, if I can help people with music in the same way that it helped me, I would be incredibly happy.”

Music therapy however, isn’t just listening or playing music. “While listening to music when you’re having a bleed or are not feeling well is therapeutic, it is not music therapy,” Elizabeth says.

Music therapy is working with a trained professional and using music as an intervention tool to accomplish a specific goal for healing or personal development. All persons receiving degrees in Music Therapy must attend an approved university and, before they can practice, must be board certified by The American Music Therapy Association.

The American Music Therapy Association’s website details several of the therapeutic advantages that music therapy can provide: alleviating pain, enhancing memory, managing stress, promoting physical rehabilitation and others. Therapy is also proven in treating conditions such as Alzheimer’s, autism, pain management, mental health issues and PTSD. Moreover, music therapy can be covered by certain insurances: Medicare under their Partial Hospitalization Program (PHP); Medicaid in certain states; and private insurers like Blue Cross Blue Shield, Aetna and Cigna.

Elizabeth’s own struggles with hemophilia, she says, likely pushed her into music therapy. Because of her bleeding disorder, she gravitated toward playing more guitar and piano as she was growing up. “It was a release for my anxiety,” she says, adding “and playing piano and guitar certainly helps veins grow right before infusing.”

Now, hemophilia is only sometimes limiting: “One of my target areas is my right shoulder muscle, so sometimes it can be difficult to play guitar, which is the easiest way for me to accompany myself during music therapy sessions.” But that isn’t stopping her. “Thankfully, this hasn’t happened in a while, but it’s something to always be mindful of.”

In closing, Elizabeth advocates for persons to incorporate music in their lives. “Music can help you be more self-aware,” she says, “and it can be an excellent way to express, and even redirect, your emotions.”

In addition to her work in Seattle, Elizabeth takes her passion on the road, running Music Therapy workshops at various hemophilia events and sometimes overcoming her shyness for a few cameo appearances in The Bleeders, a hemophilia-inspired cover band.

More information on Music Therapy can be found at The American Music Therapy Association’s website: https://www.musictherapy.org/

Infused With Music: Trevor Graham

By Shelby Smoak

Bands like Insect Warfare, Napalm Death, 80K, Captain Cleanoff, Deathtoll and Extreme Noise Terror may not be on repeat on the typical stereo, but these heavy-metal/punk bands inspire New Jersey rocker and hemophiliac Trevor Graham to perform with his own grindcore outfit, Organ Dealer.

Grindcore fuses the fast and aggressive music of metal with the brief song length and political discontent stylings of punk. Organ Dealer began with two of Trevor’s friends in 2014, when Trevor donned the bass guitar to add the undercurrent and punch such music depends upon.

Trevor started playing piano at five before joining his school band and making noise on trumpet, flute, clarinet and trombone. But at thirteen he found the guitar and hasn’t looked back. It was probably a good decision since that passion has carried Trevor all over the US and the world. In addition to US tour dates, Trevor has been lucky enough to play shows in France, Germany, England, Wales, Switzerland, and even the Czech Republic, and is currently booking more dates in Europe as well as Australia.

In talking with Trevor, he recalls a high point in his life when playing the Obscene Extreme Festival 2018 in the Czech Republic. “Never in a million years did I expect to be at that fest,” he says, “let alone sharing the same stage with some of the bands I grew up idolizing. The crowd and energy were insane and the biggest event we’ve ever played being it’s the largest grindcore fest in the world.”

Trevor is also lucky that his hemophilia hasn’t held him back. In fact, he remarks that the only annoying thing about his hemophilia is having to cart around his portable sharps container.

“So the loss of some luggage space has been the biggest inconvenience thankfully so far. But he adds that “the occasional conversation reassuring people you’re not shooting up dope in the van” is also a concern for this “legal” intravenous drug user.

Ultimately, music means everything to Trevor. “Everything else I do throughout the week is just so I have the means to do this,” he enthuses. “There’s not much I love more than playing live music and recording.” And for the budding musician out there, Trevor has this advice: “Do it. I am of the firm belief everyone should be playing music at some level. It’s very important to life. Plus, if you’re someone who gets bleeds often it’s not like you’re not going to be sitting around a lot - pick up an instrument and make that time productive!”

For passionate music lovers, Trevor has this advice: “I encourage all [persons with a bleeding disorder] to at least listen to as much music as you can. No matter how you’re feeling, music can always help make things better.” So, drop the needle. Listen to music. Go over to Spotify or iTunes and listen to Organ Dealer and feel better!

To hear Trevor’s song, visit: https://organdealer.bandcamp.com

Infused With Music: A Passion That Guides

By Shelby Smoak

Music is everywhere and has always been everywhere. Archeologists claim music exists in all cultures and is found in every historical period. That’s a lot of music!

One of the oldest artifacts is a primitive bone flute dating from over 42,000 years ago, somewhere between Neanderthals and Homo sapiens. These same researchers even claim that music developed before speech, perhaps in the coos or pre-historic warbles of mother to infant. So then, maybe in the beginning there was—music? More interesting than any of this, however, is that music—while ubiquitous to all cultures, all persons, in all times—is not essential to survival. It is not the sustenance our bodies need, nor the shelter we require to live. But don’t tell that to someone like me who cannot imagine a day without music.

Music has always been there for me. The first time it came to mean something more than just background noise was the winter I was 11 and in the hospital for my second knee synovectomy. To keep me company at my bedside for what would be an 8-week hospital recovery, my father bought a tiny cassette player/radio. Each time he visited at the end of his workweek and relieved Mom, he’d have a new cassette in hand. There was Kenny Rogers—okay. Eddie Rabbitt—a miss. Duran Duran—getting hot.

But then came Billy Joel’s “An Innocent Man.” How ironic that title seems now as I think about it echoing against the sterile walls of that tiny hospital room, my surgery leg hooking in the newly-invented constant motion machine. This was 1983, before hepatitis C, before HIV. An innocent man. Even today, it always comes back to “An Innocent Man” and that feeling: at once happy, then melancholy, sad, then break-neck joy.

That spring, still in a brace and on crutches, I started piano lessons. In high school, the guitar found me. In college and after, I joined bands (too many to name), started projects, toured, recorded albums, and played stages up and down the East Coast. At this point, I probably have performed on over 20 albums and 500+ stages, from coffeeshop spreads to college town clubs to New York dives to outdoor festivals. Music has always been there. It is a rich orchestra of emotion that plucks pain from my hemophilia-worn body.

Unlike other art forms—writing and painting—music differentiates itself by actualizing more parts of the brain.

That is, music is not a Left Brain/Right Brain artform. It is All Brain. It involves sound in the auditory cortex; language (lyrics) in the frontal lobe, rhythm and movement in the motor cortex, memory (who doesn’t flashback when hearing an old favorite?) in the temporal lobe, sight (don’t you see pictures when you hear songs or closely listen to the lyrics?) in the occipital lobe, and, lastly, emotion (oh those feelings!) in the sensory cortex.

The health benefits of music are endless. Journals like The Lancet, Music & Medicine, Journal of Music Therapy and more report on the benefits music provides: improves sleep, improves cognitive function, reduces pain, reduces stress and anxiety, affects heart rate, and improves quality of life. It even improves venous access! (See JAMA Pediatrics and their infusion study for that one!).

In any regard, my passion for music has always guided me. I now lead Bleeder, a project of original music, and am a guitarist/singer in The Bleeders, a cover group who has more or less become the house band at The Coalition for Hemophilia B symposiums. I also present our BioMatrix sponsored program “Singing to Heal,” which is a part-research, part-open mic, part lyric writing workshop. These things brought me into contact with other community member musicians who channel music’s therapeutic value in various ways. I was honored and humbled to meet so many talented individuals, and to immediately bond over not just our communal enthusiasm for music, but our struggles with a bleeding disorder. There was something to this, I said. There was something here worth sharing.

You can stream my music at shelbysmoak.com. And if you are a person with a bleeding disorder who is actively performing and/or recording music, please let me know for a future article: shelby.smoak@biomatrixsprx.com.

With that, I am more than pleased to introduce these athletes of music, those who have the dedication, sweat and tears equal to any NBA All-Star or fledgling soccer goalie.

Please read their stories and check out their music at the provided links:

Camp: To Go or Not To Go... A Mother's Dilemma

By Terry Stone

My name is Terry.
My kid would love camp.
I don’t want to send him.
Kid is sad.
Don’t be like Terry.

Yes, I am (or was) one of THOSE parents. I feel like the decision to send my sweet little precious angel baby son with severe hemophilia to camp was like a meme.

Why should I send him? He’s perfectly happy here with me. There’s lots of stuff to do here. No one will take care of him like I do. What if he has a bleed or is lonely or scared. I braved and survived family camp with him when he was 7 thinking that’s all the camp he’ll ever need. He’ll be so happy we went as a family. He’ll agree with me and not want to go back over the summer by himself. I braved the camp mattresses, camp songs and camp food for him. Now I was sure he would be done with the idea of summer camp. After all, how could I live without him for a week?!

Well, I was wrong, so wrong! For one, those camp mattresses weren’t that bad. Singing around the flag pole brought back fond memories of my own girl scout camp experiences. And the camp food - it was great!

So why was I dragging my feet? Who needs to grow up here? Why didn’t I send my son to camp the first year he was old enough to go? I had no excuse other than it was time for me to grow up. Yes, my worries and insecurities got the better of me. My son was ready. He wanted to go.

Fast forward to 2019, Matt’s last year of camp. He has loved every minute of camp from day one when he was 9 years old. He has made lifelong friends and credits his yearly camp pilgrimage as relief from the mundane - enough to give him a true mental break from everyday life that he really needed. Camp helped him be who he is today; a confident, smart and empathetic young man who just finished high school a year early and is ready to create his future.

Camp is somewhat of a rite of passage. It’s where kids learn to socialize on their own, much different from the family reunion where you push your child forward as you say, “Honey, go hug your Aunt Joyce.” Sure, he loves his Aunt Joyce, but forced socializing is something kids NEVER forget. Don’t let that be their “remember when” story at the Thanksgiving dinner table. Trust me, you’ll regret it. Remember the meme, don’t be like Terry, send your kid to camp!

Every year my son came home from camp his voice sounded a little deeper, as he narrated tales of great adventures, recanted best songs sung around the flagpole that never made Billboard’s top 100, and told us about new friends, that through the magic of camp have become their own tribe. All are welcome, all are accepted. I watched my son blossom, each year a little wiser, a little more confident, and most importantly, very happy.

Child development professionals recognize camp as profoundly valuable to help children mature emotionally, socially, intellectually, morally and physically. In the bleeding disorder community, there are camps offered by regional chapters across the country and attendance is usually free.

As a parent, we are continually making decisions to care for our children. Camp checks many of the experiences children need in their overall development.

So, as the meme says… don’t be like Terry and delay an experience that will feed your child’s needs and soul, send them as soon as THEY are ready – they’ll let you know! Camp is magical and an experience that will profoundly nurture your child and the lessons and love will last a lifetime.

Chronic Communication At Home: Encouraging Kids To Be More Independent

By Gary McClain, MS, PhD, LMHC

Why can’t I?
Don’t you trust me?
I know how to take care of myself!

If you are the parent of a child with a chronic condition, you have probably heard this from your child a few times, if not many. Based on what my clients tell me, knowing how to respond is not easy.

All children, especially teens, want to have a measure of independence. While resolving the conflicts that arise around independence is never easy, this process can be especially challenging for parents of children with bleeding disorders. Children with a chronic condition like a bleeding disorder may be feeling frustrated about their own limitations and responsibilities, as well as guilty about how these limitations affect other family members, which may result in being that much more intent on being independent. They also struggle with being perceived as different.

Parents carry the burden of maintaining responsibility for keeping the home together with all fears and uncertainties that go along with the job. In the midst of these challenges, an elephant is wandering around. An elephant that everybody is stepping around but not talking about. Its name is “fear.”

It is only human to have lots of fears around your child’s bleeding disorder. After all, part of your job as a parent is to be aware of and actively preventing the “what ifs.” Chances are, you’ve already experienced some of them, or have come close.

Fear can keep you motivated to do everything you need to do to stay on top of your child’s care. However, fear can also cause you to hold the reins so tightly that you may risk stifling your child’s self-confidence and keep him or her from getting actively involved in their own care.

When kids with bleeding disorders aren’t encouraged to develop independence, the result is stress. First, not making your child a partner in their care leaves it all on you, and you need the help. Second, when kids feel unfairly restricted by their parents, they don’t feel normal and can rebel, placing their health at risk and causing tension at home. And third, a young adult trying to make it on their own, and who has not learned to manage their own bleeding disorder with confidence, is at great risk.

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You, Your Child, and Independence: Finding the Middle Road

It’s not easy for a loving and concerned parent not to want to watch their children like a hawk. And I’m not asking you to take unnecessary risks. However, I do think there is a middle road that can keep you feeling confident your child is adequately protected, while your child can also feel more confident and in control.

Here are some suggestions to help you help your child with a bleeding disorder become more independent:

Face your own fear

It’s only human to have fears regarding your child’s health. Acknowledge your fear. Don’t judge yourself for how you feel or try to make it go away by ignoring it. This is the first step toward coping with your fear.

Encourage your child to express his/her feelings

Start the conversation by simply asking how your child is feeling and offer reassurance that you want to hear whatever it is they want to tell you - even the scary stuff. Give a few extra hugs and supportive words.

While you’re at it, let your child know how you’re feeling

Make your home a safe place to talk about emotions.

Set boundaries but offer choices

Children with bleeding disorders often feel as if they are bound by limitations, which can contribute to a sense of feeling “less” than other children. Provide your child with a sense of control by allowing for some choices in daily routines, in diet and in self-care. Explain the options and reasonable boundaries, share information, and listen to your child’s concerns and preferences. Where possible, come to decisions together. Where appropriate, bring brothers and sisters into these discussions to make them more aware of his or her perspective and to give them an opportunity to make suggestions - don’t forget that siblings have needs of their own.

Teach all children to be advocates

Children with bleeding disorders need to learn to speak up for themselves so that teachers, employers and other adults outside the home are aware of any needs and limitations. They also need to learn to deal with the questions and comments that will inevitably come their way, as do their brothers and sisters. Teach your chronically-ill child how to be a self-advocate through role-playing at home.

Consider attending camp together

Some great camping experiences are available for children living with bleeding disorders and their families. At camp, you and your children can learn from the experts on the latest knowledge and treatment of bleeding disorders. Kids can have fun with other kids who are also living with bleeding disorders, while you share experiences with other parents. Camp is also a great opportunity for kids to learn how to be more independent, even to get started on infusing themselves. Camps are held around the country. Attendance is almost always free, and even transportation may be subsidized.

Remember that not everything is a medical issue

Children are human beings, not medical conditions, and communications don’t all have to revolve around your child’s chronic condition. Many of the issues that come up with kids and teens are developmental.

Remember: The worst thing that can happen is not always the worst thing that can happen

It’s easy to get caught in the trap of “catastrophizing,” making every situation that comes up feel like an emergency. Take a step back and ask yourself: Am I looking at this through the lens of fear? Is this causing me to create the worst possible scenario that may not even be realistic? When your child pushes back on a limitation, keeping this in mind may help you realize that, well, it might just be time to relax.

Take care of yourself

Families facing a chronic condition like a bleeding disorder are constantly at risk for stress. Make sure your own needs are being met. Take care of your own physical well-being and find a safe place to talk about how you are feeling, even the bad stuff.

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Parenting a child with a bleeding disorder can be challenging, but don’t let the fear factor keep you from helping your child build confidence and independence.

Be patient.

Take it one day at a time.

Create an atmosphere where all family members communicate with honesty and compassion.

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About Gary McClain

Gary McClain, MS, Ph.D., LMHC, is a therapist, patient advocate, and author in New York City, who specializes in working with individuals diagnosed with chronic and catastrophic medical conditions, their caregivers, and professionals. He maintains a website, JustGotDiagnosed.com

In The Middle of Nowhere, But Not Alone

By Shelby Smoak

Syrus O. lives in the middle of nowhere: Castine, Maine. With a population of under fifteen hundred, excitement here involves watching snow banks accumulate in the winter and, so the town website claims, walking Main Street in the summer.

But outside of his hemophilia, Syrus is not much different from other boys in other more populated places. He loves playing sports and video games, and spending time with his friends. He cherishes learning, observing, analyzing and just plain “existing” so he says. He also loves bleeding disorders camp.

Syrus has been attending Family Camp at Lake Winnipesaukee in New Hampshire since he was a toddler. Though his memory is vague, thoughts of that time and camp conjure up “very positive” feelings, especially of a particular playground he always adored. In fact, Syrus’ act of fervent rebellion was sneaking away from his mother just to go swing on that swing. Camp has always been a welcoming and inclusive space for him. Even when he was little, there was always something for him to do and a place for him to be.

While his struggles with a bleeding disorder have presented some unique challenges in other aspects of his life, camp, Syrus says, hasn’t done anything to exacerbate that. If anything, it’s done the opposite and given him a place to vent about life issues related to having a bleeding disorder, a thing that his non-bleeding disorder friends “just wouldn’t get.”

He is also thankful he can seek advice from those who’ve experienced similar problems. For Syrus “camp is an amazing support network.”

Syrus describes the camp community as “welcoming and warm” and “full of entertaining, intelligent, charismatic, empathetic, respectful, authentic, resilient individuals.” Camp is home. The community has helped him develop as an individual to the point that, without camp, he feels he wouldn’t be so considerate, so empathetic, so caring and, so understanding. “I look forward to camp every year. Some of my best friends come from that community,” he enthuses.

From camp, he’s learned “what it feels like to be unconditionally accepted and loved.” Camp is, Syrus says, “my family.” He encourages all his blood brothers and sisters to join him at camp. “You’ll definitely get something out of it, and so will everybody else in the process of meeting you,” he says. He adds, “Please - be part of the family. We’d love to have you!” So if Family Camp at Lake Winnipesaukee is your area camp, sign up! Go! And say “hey” to Syrus when you get there!

Say "I Do" To Camp! + The Land of Love

By Shelby Smoak

Perhaps nobody is more grateful for bleeding disorders camps than Christy Tignor. After a history of bruising and nose bleeds, she was initially diagnosed with Type 1 vWD at age 9 and thereafter began her lifelong love affair with camp, and one camper in particular.

Following her diagnosis, Christy’s hematologist connected her with the Kentucky Hemophilia Foundation, and to Land Between the Lakes Camp where at 10 years old, she attended for the first time. Land Between the Lakes was 4 hours from her home and had campers from Kentucky and Tennessee. Even though Christy admits she grew quite homesick that first year of camp, as the week wore on, fun took over so that by the end Christy was eager to go back the next year, and the next, and the next. And then there was David.

Since very few girls attended Christy’s camp in the 1980s, boys could be found a-plenty. And one particular boy from Tennessee, David, took a special interest in Christy by giving her piggyback rides when someone ran off with her shoes or trying to snap her picture. So smitten was David with Christy that, as he himself admits, he even dragged a hair dryer and hair spray to camp to style his hair to look good for her. That’s right: David’s essential survival camp list included a sleeping bag, pillow, toothpaste, snacks, hairdryer and hairspray. The girls were able to ditch the hair dryer and hairspray for the week, but not David!

The budding romance soon flourished at Land Between the Lakes. Each year Christy yearned for camp where her excitement to see David and hang out with him as much as she could, grew into a full-blown crush. Then, at 22, Christy confessed her crush to a mutual friend and her concern that David did not feel the same way. She felt he had grown distant and aloof, and perhaps failed to reciprocate her feelings. Luckily their friend was a born matchmaker and quickly told David of Christy’s crush, which spurred David into action. He called her. And their first conversation outside of camp topped at over 4 hours and concluded with plans for their first date. And it seems David really did have Christy at “Hello,” because she claims that after that first call she knew she was going to marry him.

The next year they got engaged and the year after they tied the knot! And where better to sow the seeds of matrimony than, well, at camp! The day after camp was over, they married at Brandon Spring Group Camp, the spot where, 14 years earlier they had met. Two years after marriage, Christy and David welcomed their daughter, Lily, into the world. After Lily’s birth, Christy found out that she actually has a platelet disorder rather than vWD.Their son Zachary soon followed.

“Even though I do not attend camp any longer, it still has a very special place in my heart,” Christy says. “Not only did I meet the love of my life there, but I also made lifelong friends.” Their daughter now carries on the tradition.

Each year, Lily looks forward to camp where she is a counselor alongside her father. And each year, the happy couple can only wonder what camp may give their daughter. Could a camp romance repeat itself? Is there something special in the water at Land Between the Lakes? Of course, Christy and David think so!

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David Tignor, or “Tigger“ as he is more fondly known, has been going to camp since 1981 when he was 6 years old. Today he is, well, an adult. Do the math. And his camp experience is extensive. He attended as a camper until age 17, when he transitioned to a junior counselor.

For the past 26 years, David has served at numerous camps in Tennessee and many other states as a counselor, Leader-in-Training Director and Activities Director, among other roles. David has brought his counselor experiences to hemophilia family camps in Maine, Montana, and Alaska as well as widely known camps like Tapawingo in Oregon and Hot-to-Clot in Pennsylvania. However, Tennessee’s Land Between the Lakes will always hold a special place in David’s heart because that is where he met Christy.

They met in 1985 when both were 10. Since there were very few girls at camp, David admits “they got a lot of attention from the fellas,” but luckily, he — armed with a hair dryer and hair spray, camp essentials in his mind —was able to woo young Christy. That the two could also swim helped as they were allowed into the pool’s deep end where David had exclusive conversation rights to Christy without interruption from other campers. Each year, they returned to their home states— David in Tennessee, Christy in Kentucky—their secret crush burned until summer returned.

In later years both serving as teen counselors and when in their early 20s, Christy was just about ready to give up since she felt Tigger was no longer interested in her. However, a mutual friend had the good sense to intervene. David made the call to set the situation straight and the rest is history; they dated, David proposed, they married at their beloved camp Land Between the Lakes, and soon their family grew. First came Lily, now 17 and a camp counselor having mild hemophilia herself, and Zachary, now 11; a loving son with special needs and a joy to all who know him.

For David camp is more than the educational and learning experiences. It moves beyond swimming, fishing, canoeing, archery, arts & crafts, or carnivals, tournaments, pool parties, and talent shows, or even Gold Rush, an event where campers find “fake” gold that they can spend at the general store and pizza parlor. The real gold for David is the ability to be around children and adults who also live with a bleeding disorder. “It opens doors to lifetime friendships,” David says, and “demonstrates that living with a bleeding disorder is just a normal part of our lives.”

Camp was extremely important to David as a child, but even as an adult, camp thrills him and he grows equally excited to go. “Camp Freedom opened doors to some very amazing experiences and learning opportunities,” he says. “To this day, I still get butterflies when I drive onto the camp ground at Brandon Spring Group Center at Land Between the Lakes where I get to see my second family every year!”