Specialty Pharmacy Accreditation: A Commitment to Quality

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Only 19% of Americans are “Very Satisfied” with the quality of medical care in the United States.¹

According to Gallup, this sentiment has held steady for around two decades. Recent research from the public opinion agency also shows that an alarming 61% of Americans feel the healthcare system is in crisis or has major problems.² Given this public sentiment, how do specialty pharmacies and other healthcare providers demonstrate their ability to deliver quality healthcare service and support? One increasingly important tool for demonstrating quality is accreditation.

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Any state-licensed pharmacy can designate itself as a specialty pharmacy.³ Accreditation demonstrates a pharmacy has the clinical, operational, and patient-care capabilities worthy of the specialty pharmacy designation. According to leading health accreditation agency URAC, “Accreditation is the process of rigorous review that allows health care organizations to demonstrate their ability to meet regulatory requirements and national standards established via a URAC stakeholder consensus process and recognized as key benchmarks for measuring the quality of an organization.”⁴ Another leading accreditation organization, ACHC affirms, “Accreditation reflects an agency’s dedication and commitment to meeting standards that demonstrate a higher level of performance and patient care.”⁵

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Karen Spano is the Corporate Director of Accreditation and Quality Management at BioMatrix. She shares, “Accreditation is a key benchmark measuring quality and performance. The process and ongoing commitment of accreditation demonstrates an organizational ability to provide exemplary patient care, meet regulatory requirements and national best practices, and differentiate services.”

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Accreditation helps to assure patients, healthcare providers, and payers of an organization’s capabilities. The process of achieving and maintaining accreditation also unites employees around quality, safety, and standardization. Achieving and maintaining accreditation requires a level of commitment and focus aligning teams toward a shared goal of quality; ultimately helping to improve patient health and creating value for all healthcare stakeholders. Qualitative research from several studies indicates that following the rigorous accreditation process, employees perceive an improvement in organizational culture, patient care, process standardization, and ongoing efforts around process improvement.^6,7 Spano affirms, “The accreditation process allows us to showcase our strengths while identifying areas in need of improvement. It creates a culture focused on continual improvement where employees hone and enhance their skills while improving quality management systems and processes.”

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BioMatrix is committed to quality.

BioMatrix maintains industry leading specialty pharmacy accreditations. All BioMatrix pharmacy locations carry multiple accreditations. Several locations carry specialized designations aligned with the unique needs of patients with rare or difficult to treat health conditions.

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References

1. Ratanjee, V. (2020). Five forces that will reshape the future of healthcare. Gallup. https://www.gallup.com/workplace/323039/five-forces-reshape-future-healthcare.aspx

2. Jones, JM. (2020). Reduced majority in US critical of healthcare system. Gallup. https://news.gallup.com/poll/327968/reduced-majority-critical-healthcare-system.aspx

3. Fein, AJ. (2021). The specialty pharmacy accreditation boom slows: DCI’s exclusive update on the US market. Drug Channels. https://www.drugchannels.net/2021/05/the-specialty-pharmacy-accreditation.html

4. URAC. (2021). Accreditation FAQ. https://www.urac.org/accreditations-certifications/accreditation-faqs/

5. ACHC. (N.D.). What is accreditation? https://www.achc.org/about-accreditation/#what-is-accreditation

6. Melo, S. (2016). The impact of accreditation on healthcare quality improvement: a qualitative case study. Journal of Health Organization and Management. https://www.emerald.com/insight/content/doi/10.1108/JHOM-01-2016-0021/full/html

7. J.A. Carrasco-Peraltaa., M.Herrera-UsagrebV., Reyes-Alcázara., A.Torres-Oliveraa (2019). Healthcare accreditation as trigger of organisational change: The view of professionals. Journal of Healthcare Quality Research. 34(2) 59-65. https://www.sciencedirect.com/science/article/abs/pii/S2603647918301118

Video: Disability Preparedness: Understanding Short-Term, Long-Term, and Social Security Disability

This program offers information for preparing for living with a temporary or long-term disability. It prepares persons for the unexpected event of a chronic illness or injury, and it offers guidance for those trying to navigate financial support through a disability.

In addition to explaining the similarities and differences between short-term, long-term, and social security disability—Disability Preparedness answers key questions about apply for and receiving disability plans, and it explains how each together provides a safety-net for financial coverage during times of critical illness.

If you have a disability, this program is for you.

If you do not currently have a disability, this program is absolutely for you.

KEY OBJECTIVES:

1. To educate persons about short-term and long-term disability plans and how a person can acquire that coverage

2. To answer key questions about applying for and receiving social security disability

3. To differentiate between short-term, long-term, and social security disability

4. To indicate how short-term, long-term, and social security disability work together

5. To assure that persons understand how disability plans can offer them coverage and support during severe and/or chronic illness

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

Thank you!

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About Shelby Smoak
Advocate & Education Specialist

Shelby Smoak is a tireless advocate for patients with chronic health conditions. In the 90s, his experience living with a bleeding disorder and HIV led him to become actively involved in advocacy. He’s been saturated in the ever-changing dynamics of healthcare ever since. Shelby helps others understand complicated health policy and serves as a voice for patients with rare conditions across the nation.

He’s been featured on TV and radio, including NPR. Shelby served on the board for the Hemophilia Association of the Capitol Area and currently serves on the Pfizer B2B board. A former literature professor, Shelby is also a writer and a musician. Awarded a Pen/American grant for writers living with HIV, Smoak holds a Ph.D. in Literature and an M.A. in English. His book, “Bleeder: A Memoir” received praise from sources as diverse as The Minneapolis Star Tribune, Library Journal, and Glamour, and has won several awards, including “Best of the Best” by the American Library Association.

How Specialty Pharmacies Help Patients Access Specialty Medication

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In a recent survey, 82% of patients prescribed a specialty medication reported spending an hour or more on the phone trying to coordinate access to their therapy.¹

Individuals living with a chronic health condition often experience challenges that can delay access to prescribed therapy. Here we discuss how specialty pharmacies like BioMatrix help patients obtain timely access to treatment.

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Patients benefit from accessing prescribed therapy quickly. According to a survey of health industry professionals, 70% felt there is room for improvement in speed-to-therapy initiation.² Specialty pharmacies help patients receive their medication in a timely manner by promptly securing necessary insurance authorizations, identifying resources, reducing out-of-pocket costs, and providing access to specialty medications.

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Prompt Therapy Authorization

Specialty pharmacies can help cut through the red tape of coverage issues. We employ staff who are very well versed in specific health conditions. They use their knowledge to promptly obtain authorization for therapy and resolve coverage issues. We ensure patients understand their specialty medication insurance coverage, conduct comprehensive benefit investigations, help with prior authorizations and appeals, and coordinate care to help patients quickly begin therapy and maintain access to their specialty medication.

Regina Valenzuela is an Intake Manager with BioMatrix. She shares, “Navigating healthcare coverage can be difficult. I help patients understand their coverage while working with insurance plans to obtain timely authorization for prescribed therapy. My contribution is to listen, provide clarity, and facilitate prompt access to therapy.”

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Reducing Out-of-Pocket Cost 

Living with a chronic condition is costly. When patients have to pay high out-of-pocket (OOP) 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. 

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 to reduce financial barriers and help patients access specialized healthcare.

Out-of-pocket costs are covered for 93% of BioMatrix patients by either manufacturer copay or 501c3 foundation support, and 44% of BioMatrix patients have achieved $0 OOP associated with their prescribed therapy.

Diviesh Patel is the Pharmacist-in-Charge at our Totowa, New Jersey location. He notes, “Patients with chronic or complex conditions often need additional assistance managing the equally complex social and financial issues that can stand in the way of better health. My number one goal as a pharmacist is to advocate and help remove those barriers wherever I can."

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Specialty Medication Access

Many specialty drugs are not found at local walk-in retail pharmacies. Due to the complexity of these medications and the unique situations faced by the patients prescribed them for treatment, specialty drugs require more resources and support at the point of dispensation than the medication found at your neighborhood pharmacy. This includes specialized shipping and handling, advanced packaging, unique patient education, home-nursing support, and specialized monitoring. Research shows specialty pharmacies are successful in helping patients adhere to therapy, identify utilization or dosing mistakes, and avoid unnecessary hospitalizations.³

Joseph Hensley is the Pharmacist-in-Charge for our Charleston, West Virginia location. He asserts, “Communication is the key to helping people effectively manage their health. People with chronic health conditions are going through a lot. My role as a pharmacist is to communicate empathetically and help patients understand how to manage their therapy so they can live a healthier life.”

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Specialty pharmacies help minimize medication access barriers. From gaining timely insurance authorizations, to reducing out-of-pocket costs, our job is to help patients safely obtain and maintain access to prescribed specialty therapy.

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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.

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

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

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.

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References

1. Cover My Meds. (2021). 2021 medication access report. https://insights.covermymeds.com/medication-access-report

2. Duey M. (2013). Speed-to-Therapy Insights in Specialty Pharmacy. Pharmacy Times. https://www.pharmacytimes.com/news/speed-to-therapy-insights-in-specialty-pharmacy

3. 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

BioMatrix Specialty Pharmacy Acquires InfuCare Home Infusion Pharmacy

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BioMatrix Specialty Pharmacy Acquires InfuCare Home Infusion Pharmacy

Texas Location Expands National Footprint, Payer Contracts, Clinical Expertise

Media Contact: Tara Marchese
Corporate Director of Marketing
Tel: 954-908-7636
Email: tara.marchese@biomatrixsprx.com

July 6, 2021 – Plantation, FL – BioMatrix Specialty Pharmacy announced today the acquisition of InfuCare LTD, in Tyler, Texas. This infusion focused specialty pharmacy adds a brick-and-mortar location in a key geographic area, expands the organization’s national footprint, and provides access to additional covered lives in one of the nation’s largest states. The acquisition is the latest of several transactions that have positioned BioMatrix as one of the largest privately held specialty pharmacies in the United States.

The staff at InfuCare have extensive experience in key therapeutic categories for BioMatrix. The organization is well versed in chronic, complex conditions requiring home infusion including IVIG, anti-infectives, parenteral nutrition and more. The organization has been recognized for providing exemplary home infusion and specialty pharmacy services in Texas. InfuCare is accredited by the National Association of Boards of Pharmacy.

BioMatrix CEO Nick Karalis commented, “We are pleased to welcome the InfuCare team as part of the BioMatrix family. A Texas pharmacy location is part of our strategic plan to expand our infusion services and increase access to covered lives. With complimentary core competencies and shared values of exceptional patient care, together we will improve health and shape a more promising future for the patients we serve,” Karalis said.

“The leadership and staff at InfuCare are delighted to begin our partnership with BioMatrix,” stated Gary Wyatt, Partner of InfuCare, LTD. “Our goal over the last 21 years has been to provide an exceptional and personal level of infusion care to our patients in the east Texas region. Having interacted with BioMatrix leadership over the last several months, we are confident that our focus and theirs will be complementary and will lead to an even greater level of care for both infusion and specialty patients in our region and beyond. We are excited to join such a highly respected company and look forward to a long and impactful relationship with BioMatrix.”

Additional information on BioMatrix and InfuCare can be found at biomatrixsprx.com and infucare.net.

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About BioMatrix Specialty Pharmacy
BioMatrix Specialty Pharmacy, an Inc. 5000 company, offers comprehensive, nationwide specialty pharmacy services and digital health technology solutions for patients with chronic, difficult to treat conditions. Our commitment to every patient is to provide individualized pharmacy services, timely access to care, and focused education and support. We offer a tailored approach for a wide range of therapeutic categories, improving health and empowering patients to experience a higher quality of life.

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

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

How Specialty Pharmacy Can Help Support Continuity of Care for Military Families

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Military members and their families sacrifice a lot for our country. Frequent relocation means often having to re-establish new schools and new friends. In addition, deployment brings prolonged separation from a parent(s), leaving childcare to the remaining care-taker while being far from extended family.

Chronic illness for military families makes frequent moving and prolonged separation even more challenging. Every time a family relocates or their current primary doctor gets deployed, they need to re-establish a new primary care provider and sometimes specialist. This new provider may or not be familiar with the chronic condition. After establishing a new provider, a referral may need to be made to a new specialist for that chronic condition. That’s a lot for a parent to take on, especially if their spouse is deployed, and they have multiple children with no extended family nearby for support.

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Denise is a mother of four. Two of her children have hemophilia, and her husband is in the Army. She said in an interview with BioMatrix,

“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.”

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Kalee is a mother of three. Her son also has hemophilia. Her husband is in the Air Force. She said in an interview,

“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.”

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The Importance of Continuity of Care

Continuity of Care (COC) is the focus and process of quality care over time, driven by the healthcare provider who works cooperatively with the patient’s entire care team. Ideally, no one is working in a vacuum, and there is no overlap of services—i.e. multiple pharmacies being used simultaneously, multiple specialists who are from different healthcare systems, etc. When COC is present, studies show that there are fewer emergency room visits, increased adherence to therapy, improved patient satisfaction, and lower overall healthcare costs.¹ Health outcomes improve when COC is high.²

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With frequent moves, deployments, and having to often re-establish new healthcare providers, specialty pharmacies can promote COC by helping coordinate care across multiple healthcare access points for those with chronic conditions by:

1. Leveraging detailed clinical knowledge with individualized patient information to help providers fine tune treatment plans

2. Helping patients understand their coverage, coordinating health benefits, securing prompt authorization for prescribed therapy, and providing access to resources reducing barriers to care

3. Coordinating services between patient, provider, payer, and other community-based resources to overcome challenges, maintain continuity, and promote safe, effective care

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BioMatrix is a nationwide, TRICARE-approved specialty pharmacy providing oral, injectable, and biologic medications used to treat complex health conditions. We help implement complex treatment plans and empower patients to better manage their condition through individualized specialty pharmacy and unique support services.

BioMatrix coordinates services between patient, provider, payer, and other community-based resources to bridge gaps, preserve continuity, and improve outcomes. We are proud to work with our military families. Whether you’re a patient or provider, we want to be an advocate and supportive resource for you.

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References

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

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.

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

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

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.

Patient Perspective: Carolyn

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I was newly retired from the United States Army and planning for some family time after a simple outpatient surgical procedure in October 2015. The procedure went well. But, within 24-hours small itchy blisters slowly began to appear on my chest, back, as well as in my mouth.

My doctor prescribed a topical steroid for what she thought was a fungal infection. I also saw my dentist who encouraged me to brush my teeth more, use mouthwash, and to see the dental hygienist.

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However, by late November, the small blisters blossomed into silver dollar size hives covering my scalp, neck, chest, back, upper and lower arms, thighs, legs, and my mouth was a mess. By this time I had seen 15 doctors, and I was misdiagnosed with everything from shingles, celiac disease, Lyme disease, chickenpox, acne, to various skin related allergies. I was given routine referrals.

By late December 2015, I had been hospitalized twice due to infection, dehydration, and an alarming collection of symptoms that included severely blistered skin over 60% of my body, and I couldn’t eat due to a severely blistered mouth. I itched horribly, my skin oozed blood constantly, my hair was falling out, and I was exhausted. My husband was now carrying me up and down the stairs of our home and buying Boost for me to keep weight on.

After weeks of extensive exams, blood work, and skin biopsies I was finally diagnosed with Bullous Pemphigoid (BP) in February of 2016. Bullous Pemphigoid is a rare autoimmune skin blistering condition that has no cure. Some of the current therapies used to treat BP include the following: corticosteroids, immunosuppressants, Intravenous Immunoglobulin (IVIG), anti-inflammatory agents, and Rituximab.

My arms and legs were wrapped in sterile dressings after topical steroids (Clobetasol) and Vaseline was applied. Additionally, oral steroids (Prednisolone), Doxycycline, Niacidimine, Vitamin D, Benadryl, Phosomax, probiotics, Triamcinolog (steroid dental paste), and magic mouthwash were all prescribed. It was painful going through months of wound care, bandage changes, and specialty appointments. I would spend the next six months regaining my strength so that I could walk, climb the stairs, eat normally, and do basic household chores. The International Pemphigus/Pemphigoid Foundation (IPPF) was an outstanding resource of information and support. We learned that we were not alone, and this knowledge was an incredible source of strength to us.

Today, I am doing better. I’m active in family activities at home, church, and I’ve returned to work. I also volunteer with the International Pemphigus/Pemphigoid Foundation (IPPF) as a volunteer Peer Health Coach and Mid-Atlantic Support Group leader supporting Pemphigus/Pemphigoid patients and their families.

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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.

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

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

By giving us your contact information and signing up to receive this content, you'll also be receiving marketing materials by email. You can unsubscribe at any time. We value your privacy. Our mailing list is private and will never be sold or shared with a third party. Review our Privacy Policy here.

Hi Dad! A Son with Hemophilia Pays Tribute to His Dad

By Felix Garcia

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Although I’m not an athlete, I always get a kick out of professional and college athletes who turn to the camera and say, “Hi Mom!” Often though, it’s most likely their dad who taught them the sport, pushed them to exceed, and helped them make decisions leading to that position. Yet, they all say, “Hi Mom!”

It’s funny to me! Let’s be honest, it’s such tradition now that if you didn’t, even your dad would probably scold you, “What’s the matter with you, son? Why didn’t you give a shout-out to your mom?” 

In the world of bleeding disorders, it’s not much different except for my generation and many before me, it was all because of mom.

Mom taught us how to play the bleeding disorder game - she pushed us to infuse and coached us to not challenge our body beyond what it could do. And yes, she is probably the reason most of us are still here today. I speak from experience – well, at least from my own experience I should say!

I was one of the lucky few that grew up in the ’70s and ’80s with a dad who made sure I infused. He was great at it. He guided me and got me to infuse when I had to. Back then it was when I had an active bleed, prophylactic treatment was a dream and joint damage the reality. 

Growing up, we didn’t have local bleeding disorders meetings - in person or on Zoom. Hold on to your hats, kids… We didn’t even have the Internet (please insert “shocked” emoji here)! This means I didn’t have much to compare to until I was an adult and attended my first MANN meeting. For those of you too young to remember, MANN stood for Men’s Advocacy Network of NHF, a group founded in 1991 to bring together men with hemophilia and HIV/AIDS to advocate and provide support on a national level.

During these meetings, we shared childhood stories and myths and reminisced and joked about them. Though many of us had never talked before, we found we had many of the same superstitions. One that stood out was about not touching another needle beside the one you’re going to use. If you did, you were destined to blow a vein and would then need the extra needle you touched. A room full of grown men and most of us were still afraid to touch another needle package. Sheesh! 

Speaking with these other men, I also heard about the loving, devoted mothers in our community. I’d say more than 90% of the men raved about their moms. In the middle of the conversation, I decided to speak up and say how great my dad was. Wrong crowd. Few blood brothers held their dad in such high esteem as I did my father. Very few fathers had done the things my father did. Don’t get me wrong, my mother did all those wonderful, self-sacrificing, noble acts that the others did too. She unselfishly dedicated her life to raising a child with a chronic illness. 

My mom endured when told her 3-month-old son had severe hemophilia and would not live past the age of 18. She survived his two major head bleeds that almost took his life, first when he was 18 months old and then again in his early 20s. She suffered greatly when told her 11-year-old son was going to die of an AIDS-related illness because of the clotting factor they trustingly used. Yeah, my mom was just as big a rock star as any of those other mothers - she had her heart broken over and over because of me. 

Well, so did my dad. He held my mom when no one else was around. He cried with her when the pain was too much to bear, and he was her pillar of strength when that was what she needed. He chose never to give up no matter how many times his heart was shattered again and again with news that his son was going to die. 

More importantly to me despite the pain, my dad still taught me how to be a man. He taught me that no matter how much he hated the sight of blood and needles, I could always count on him to infuse me or hold me in the ER. He taught me whenever I had to be in the hospital after surgery, I still had to do my school assignments and read. He would show up with my homework and books. 

He was always the one I wanted to impress with my recovery. My dad was always there for me. When I had to have surgery as an adult, my dad taught me that he would still always be there for me, taking my kids to school and helping my family around the house. And he is still the one I want to impress with my recovery. 

I was lucky. Both my parents helped me become an adult who could manage his bleeding disorder. They both helped me become a better person. In my life, I was blessed with others who also mentored and helped me along the way. However, if having a bleeding disorder was a professional sport and the camera was on me for a brief moment, to my dad and to all the dads that help make men of their boys with hemophilia, I would say, “Hi Dad. Thank you. I love you.” 

This is dedicated to all the parents who raised a child with a chronic illness and who underwent heartache and tears to get their children to where they are today. We don’t always know when or how to say thank you and you may never know how deeply the appreciation extends, but words will never cover the moments you gave us, the life you preserved in us, and all the things we now as adults have come to realize.

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

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

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A Review: Crip Camp

By Rich Vogel

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What do you get when a bunch of kids with disabilities go away to camp, are free to be themselves, and form bonds and everlasting friendships? You just might get a group of kids who go on to change the world!

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That’s my takeaway from the inspirational Netflix documentary, Crip Camp. This film is rated “R” by the Motion Picture Association of America for “some language including sexual references.”

In 1971 a group of young people went to a camp for children with disabilities in upstate New York. Camp Jened was established in 1951 as a campground for people with disabilities - cerebral palsy, blind, deaf, epilepsy, and those stricken with polio, just to name a few. It was a place where kids could be kids, treated with kindness and humanity, unlike the real world where many were put in institutions and not allowed to go to school. As one person said, the problem is not with people living with disabilities, but people living without them – people who refuse to listen to those with disabilities or build a world that accommodates them, who turn a blind eye to their abuse, or limit their opportunities. 

The story is told through actual footage of that magical summer interspersed with current interviews with those kids from 50 years ago. We see bonds being made with lifelong friendships, meetings where every voice is heard, compassion, and even first crushes, all the things that go on at a typical camp. But this was the 1970’s. The war was going on in Vietnam, there were protests and there was a wind of change in the country. 

In 1973, President Nixon signed into law Section 504 of the Rehabilitation Act. Unfortunately, there were no regulations passed. No definition of what discrimination is for people with disabilities. 

When the Carter administration came into power still nothing was done. Joseph Califano, U.S. Secretary of Health, Education and Welfare, refused to sign meaningful regulations for Section 504 of the Rehabilitation Act of 1973. After an ultimatum and deadline, a group of activists with disabilities, led by camper Judy Heumann, staged a sit-in at the San Francisco Office of the U.S. Department of Health, Education and Welfare in order to get their voices heard.

The sit-in lasted 28 days, quite a feat for people in wheelchairs, many of whom needed assistance to eat and perform daily functions. In one scene, the Black Panthers are seen delivering food to the protesters. When asked why they were delivering food for free, they said because you are helping the community, trying to change the world. 

After mounting pressure around the country, Joseph Califano signed both Education of All Handicapped Children and Section 504 into law on April 28, 1977. It took another 11 years to get legislation introduced in Congress for the Americans with Disabilities Act and another 2 years before President Bush signed it into law in 1990 – nearly 20 years after that spark was lit for those young kids at Camp Jenard.

 This is an inspiring true story about friendship, perseverance, righting a wrong. Although the film is not about kids with bleeding disorders, it does highlight similar struggles. This is our story. The first residential summer camp, Bold Eagle Highlands, for persons with hemophilia was started in 1969 by Hemophilia Foundation of Michigan. 

Since then, many more camps have been created for kids with bleeding disorders and often their siblings. These camps promote independence by teaching self-infusion and leadership skills, guiding many to become camp counselors and advocates for the community, all while fostering camaraderie and lasting friendships with others in a secure and safe environment. 

These are just a few reasons why camp is so important for the bleeding disorder community. If you are contemplating sending your child to camp, watch this documentary. Your kid might just change the world.

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Meet the Team: Terry Stone

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

In this edition, we feature Terry Stone!

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Terry comes to our organization with years of experience in sales and public relations that started in the Washington DC tourism industry. However, after her son was born with hemophilia, she discovered a greater calling and acted on her new passion to serve patients dealing with chronic conditions and help to ensure they have education, support, and an enhanced quality of life.

Living in Manassas, Virginia, Terry and her husband of 36 years have a grown daughter, Michelle, who has two children of her own, and a 19-year-old son, Matthew. Terry has served on the Board of Directors for her local chapter and continues to be an involved member of the bleeding disorders community. As a Regional Care Coordinator at BioMatrix, Terry brings a feeling of family support and compassion to patients in Virginia, Maryland, and the Washington DC area.

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What is your connection to the bleeding disorders community?

My introduction to the bleeding disorders community was as abrupt as it was shocking. After more than seven years of wanting to grow our family, my husband and I were excited to welcome a new long-awaited son Matthew to our family in October 2001. Our then 14-year-old daughter Michelle would have the little brother she always dreamed of - a real live baby doll to love and rock to sleep. 

Something, however, was not quite right. During a feeding not long after birth, I noticed a large bloodstain on Matthew’s blanket and alerted the nurse. After a trip to the NICU and 48 very long hours, the diagnosis was a tough one, “your son has severe hemophilia B.” With those simple words, life changed for us. Although we felt sad and alone, we soon realized there was a community of families just like us, ready to embrace, teach, and support us as we struggled to navigate our way to what would be our family’s new normal.

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What brought you to BioMatrix?

My family was warmly embraced by the local hemophilia chapter and other families in the community, and I was so inspired that I transitioned my career path to serve a community that I unexpectedly found myself a part of. I experienced firsthand how education and support can make a difference in the lives of patients dealing with a chronic health concern, and I wanted to offer the same. After working for another specialty pharmacy, I found myself a home with BioMatrix in 2011.

I reflect on my former career as a sales director for a sightseeing and charter bus company, then go back even further to working after school at my parent’s bus station selling tickets and stocking soda machines. I grew up in transportation, and although a career in tourism in our Nation’s Capital was really fun, I much prefer helping patients to transport themselves to successful therapy at home and to their best life possible.

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How do you feel you are Making a Difference?

Patients are so unique in every way. It’s my mission to learn all about their needs and challenges so that we ensure they have what they need to be comfortable with their home therapy and educated as to all of the great resources that are available to them. You need to take great care of the patient, but don’t forget to embrace the entire family so that together they are supported, educated, and resilient.

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What is the most cherished part of your job?

There’s no better gift than making a difference in someone’s life, particularly during a time of great need or concern. I have found immense joy and a true calling assisting patients and their families who are navigating their own path with other chronic disorders. 

I find that although the diagnosis of their loved one may be different than my own family; our concerns as parents, family members, and caregivers are typically the same. We worry about health insurance, copayments, experienced care, and how to juggle doctor appointments, work, and after-school activities. Living with a chronic disorder and the challenges and blessings it brings are so uniquely personal. Yes, there can be blessings too!

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What personal accomplishment are you most proud of?

My daughter Michelle and I wrote a book for the hemophilia community called This is My Something. When Matthew was young, we always explained his hemophilia as a unique part of who he is. Matthew came to understand that everyone has a “something” and hemophilia was just his, and that was cool. From this lesson he never felt odd or different, he just felt like, well… MATT! So, our story is about a little boy who learns to embrace his “something.” With support from BioMatrix who printed the book, it’s now available for families to share and enjoy. It’s a wonderful story for parents to read to their children, or to share at school as part of their school and class education.

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What would you say to a newly diagnosed family?

You are not alone! There is a community of folks who share this path through life, so join up, walk with them, and share the journey. Certainly, I wish my family was not affected by hemophilia, but what a gift it has been to have met so many amazing people along the way, and the joy of so many experiences we have shared as a family. And let’s not forget hemophilia camp for Matthew, which was a monumental event every year for him. He counted the days until camp each summer and has made lifelong friends. Living with chronic illness comes with challenges. I get it. Everyone has a “something,” so embrace it!

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BioMatrix Specialty Pharmacy Expands Leadership Team with Chief Growth Officer

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BioMatrix Specialty Pharmacy Expands Leadership Team with Chief Growth Officer

Executive Role will Focus on Value Creation, Strategic Development

Media Contact: Tara Marchese
Corporate Director of Marketing
Tel: 954-908-7636
Email: tara.marchese@biomatrixsprx.com

June 2, 2021 – Plantation, FL - BioMatrix Specialty Pharmacy announced today William (Bill) Nolan has joined the executive leadership team as Chief Growth Officer. Working in collaboration with the CEO, COO, and CFO, Bill will oversee strategy and execution of the company’s value creation plan including business development and positioning the organization to best meet market needs.

Bill is a successful healthcare executive and business growth strategist with nearly 30 years of healthcare industry experience with some of the nation’s leading pharmaceutical and biotech companies. Bill’s career has focused on enhancing and expanding how organizations serve and care for patients on their healthcare journey. He brings deep knowledge around patient access, product strategy, policy and reimbursement, marketing, market access, provider support, specialty pharmacy, and distribution.

Most recently, Bill served as a consultant to the pharmaceutical/biotechnology industry assisting with end-to-end commercialization strategies and go-to-market efforts. Prior to consulting, Bill spent over 16 years with McKesson Specialty in a variety of leadership roles. His primary focus at McKesson included building their specialty business platform. In his last 5+ years with McKesson, he served as the Vice President & General Manager of the McKesson Life Sciences RxCrossroads portfolio.

“We are thrilled to welcome Bill to our executive leadership team,” CEO Nick Karalis affirms. “BioMatrix has made substantial investments in our technology, infrastructure and service lines to improve our patient care and value service offering to our healthcare stakeholders. Bill will help us continue focusing on our long-term strategy and rapid growth while enhancing our commitment to providing exceptional care and improving our patients outcomes. 

Bill Nolan shares, “BioMatrix truly is an exceptional specialty pharmacy, I look forward to working alongside some of the best in the industry to change lives, improve health, and leave a lasting legacy in the specialty pharmacy space. The organization’s patient engagement capabilities, clinical acumen and genuine commitment to delivering a great experience for every patient, provider, payer and pharmaceutical partner is second to none in our industry, and I am thrilled to be a part of expanding the BioMatrix difference across the specialty landscape.”

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About BioMatrix Specialty Pharmacy
BioMatrix Specialty Pharmacy, an Inc. 5000 company, offers comprehensive, nationwide specialty pharmacy services and digital health technology solutions for patients with chronic, difficult to treat conditions. Our commitment to every patient is to provide individualized pharmacy services, timely access to care, and focused education and support. We offer a tailored approach for a wide range of therapeutic categories, improving health and empowering patients to experience a higher quality of life.

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Spring Cleaning Medical Supplies

By Sarah Henderson

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Spring is in the air! As windows are thrown open to let the fresh air in, many are inspired to do a deep cleaning around the house. As you tackle your spring cleaning tasks, make sure to give your medicine storage area be it a cabinet, shelf, drawer or closet a thorough inspection as well.

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While I love the feeling of a good cleaning, I love even more the feeling I get when I look at my clean and orderly factor and supply storage! Here are some tips for spring cleaning your medicine storage: 

• First and foremost, store all medications in a cool, dry, and dark area that is inaccessible to children. Avoid storing in a bathroom cabinet where humidity, heat, and light can cause medications to lose their efficacy.

• Check expiration dates on everything. Medications lose effectiveness and can even become toxic once expired.

• Check all ancillary supplies - saline, butterfly needles, port supplies, disinfectant swabs, etc., for a printed expiration date. Yes, many supplies may also have expiration dates. 

• Arrange clotting factor so the boxes with the longest expiration date are in the back and factor expiring soonest is at the front to be used first. This will keep the stock fresh and lessen the chance of allowing valuable factor to go to waste. Each time a new factor order is received, place the new boxes behind the existing ones. 

• Take this time to double-check manufacturer recommendations on how, where, and how long to properly store clotting factor and medications.

• If a pump is used to infuse, be sure to insert fresh batteries and determine if it’s time for the pump to be calibrated or updated. 

• Go through all medications that may be used infrequently but are just as important to always have at their best. For example, if Amicar is kept on-hand, reorder as it nears its expiration date. Then when needed, it will be available and at its best efficacy.

• Check any topicals, over-the-counter medications, vitamins, and supplements as well. If there is any change in color or smell, toss it.

• If a medication is not in its original container and it isn’t 100% known what it is, dispose of it.

• For any medications with a “use within X days of opening,” write the date it was first opened on the lid, so it’s easy to remember when that was.

• Dispose of medications properly. Here are a few suggestions on how to determine the best way to dispose of them:

  • The FDA offers advice on how to properly discard medications. Visit: www.fda.gov/ForConsumers/ConsumerUpdates/ucm101653.htm 

  • Law enforcement sponsors a drug take-back day where unneeded prescription medication can be safely disposed of. Contact the Drug Enforcement Agency at 1-800-882-9539 or visit their website for dates and locations: https://www.deadiversion.usdoj.gov/drug_disposal/takeback/index.html 

  • Local police stations will often properly discard old medications as well. 

  • Many neighborhood pharmacies offer disposal programs. Visit http://disposemymeds.org to find a location near you.

• Consider donating factor product that has not expired but will no longer be used to Save One Life, where it will be sent to help patients in developing countries: https://saveonelife.net/how-you-can-help/project-share

Now that the task is complete, sit back, congratulate yourself on a job well done, and relax!

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References

“Where and How to Dispose of Unused Medicines.” U.S. Food and Drug Administration, FDA, www.fda.gov/consumers/consumer-updates/where-and-how-dispose-unused-medicines 

Nkf. “6 Tips to Help ‘Spring Clean’ Your Medicine Cabinet.” National Kidney Foundation, 30 Mar. 2018, http://www.kidney.org/newsletter/6-tips-to-help-“spring-clean”-your-medicine-cabinet

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A Mother’s Love

By Eva Kraemer and Kelly Gonzalez

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For most, mothers are everything. They are the guiding light propelling their children toward their destiny. They are the safe, warm blanket that wraps them when they fall. They are the protectors and disciplinarians. They are the source of encouragement and the teachers of independence.

But what happens when a curveball is thrown into the mix? When child-rearing may include and be complicated by having to be cautious about everyday things, many hospital visits, countless factor infusions, and a more-than-average amount of worrying? Mothers of children with hemophilia or other bleeding disorders don’t give up - they become resilient. 

Stephanie R., Victoria K. and Genny M. - three women from various walks of life decided their genetic make-up would not hinder their childbearing dreams. They persisted and started families of their own regardless of the chances of passing along a bleeding disorder. An intimidating task for some, but an inspirational journey for others. 

For context, hemophilia is passed down on the mother’s chromosome. This means when a woman who is a carrier of hemophilia conceives, there is a chance she will pass on this genetic disorder to her child. Hemophilia is substantially more prominent in males because it is a recessive sex-linked disorder, but females may also be affected. Deciding to bring a child into this world knowing your genetics may greatly impact your child’s life is even more daunting. 

Stephanie is from Michigan and has been married to her husband, Jason, for 15 years. They have 4 children, Addison, Ella, Lila, and Ben, who has severe hemophilia. Stephanie has been aware of the bleeding disorders world her whole life because of her family’s involvement. “I’ve been part of my brother’s journey, my uncle, my cousin... I have seen the progression of the effects of hemophilia from the older generation to my brother’s generation, and I wasn’t as worried,” recalls Stephanie. “To me, there were worse things to have.”  

Victoria and her husband, David, have been married for 20 years and are parents to 16-year-old twins, daughter Grace, and son William who has severe hemophilia. Victoria always knew she was a carrier because her dad had severe hemophilia. She was diagnosed as having mild hemophilia when she was just 10 years old. 

Married for 15 years, Genny and John from Illinois were college sweethearts. They have a 6-year-old son, Johnny, who has severe hemophilia. Genny shared, “I knew hemophilia ran in my family since my mom had 2 brothers and a couple of nephews with hemophilia. One of my uncles died as a toddler from a head bleed, and we lost one uncle to the HIV he contracted from his clotting factor back in the 1980s. I grew up thinking I couldn’t be a carrier since my mom supposedly tested negative when she was family planning back in the 1970s.” 

When bringing up the obstacle of family planning with their respective spouses, the women were informed about the possible risk associated with conceiving a boy. With their partners, each couple took fate into their own hands. 

Stephanie shared that there was almost no conversation because her partner met her family at the very beginning of their relationship and knew right off the bat of their struggles with hemophilia. When asked about having children, Stephanie responded, “We knew God would guide us.” 

Initially, Victoria didn’t want children because as an obligate carrier, she knew the chances of having a child with hemophilia were great. Her husband, however, was undeterred by hemophilia - he wanted children. Eventually, Victoria became pregnant with twins. After bringing her children into the world, Victoria, with tears in her eyes, asked the doctor if her son had hemophilia. When the doctor replied “yes,” her husband responded with a statement that would guide them through raising their children, “Hemophilia is like blue eyes, it’s just DNA.” 

Genny’s sister had a child with hemophilia. She realized her mom’s carrier testing was incorrect and that she had a 50/50 chance of being a carrier. “My nephew was born and diagnosed with hemophilia less than a year after John and I started dating. It was very difficult watching my young nephew struggle with bleed-after-bleed and surgery-after-surgery since he battled inhibitors the majority of his life,” stated Genny. “After seeing what my nephew, uncle, and others have gone through, we struggled with knowingly taking the risk of having a child whose quality of life could be greatly impacted by hemophilia. Nevertheless, we still longed to have children.”

As for starting a life with a newborn diagnosed with hemophilia, each mother had her own journey to dictate. They kept conversations going about hemophilia with their partners and families. They each discovered they weren’t about to let a genetic disorder dictate the way they or their child was going to live their life. Those conversations aren’t easy and require openness from both parents.

Stephanie’s family focused on immersion. “This is our life, our normal, our something unique,” she recalls. There was no specific incident or time, but she and Jason jumped in to learn and understand everything they could about hemophilia. 

Learning from past experiences was the way to go in Victoria’s family. David learned about hemophilia through his relationship and experiences with Victoria’s dad before he passed in 1993. Even though he had not experienced hemophilia firsthand growing up as Victoria had, together they have handled every incident and challenge as it has come along. 

Genny feels she is blessed as her husband is very knowledgeable and engaged. She recalls before having their own child, her husband was one of the first people in the family to learn how to infuse her nephew. He had even gone on field trips and camping with him without fearing his condition. 

Family planning isn’t always easy when you have a genetic disorder. There are unpredictable events that can impact life, but these mothers have advice for anyone considering having a child. 

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“Children are a blessing to our family. I would suggest families with a known carrier mother prepare to have a child with a bleeding disorder by getting involved with your local chapter, educating yourself, and learning to be an advocate as you plan and make decisions. Ask questions about doctors and treatment options – take responsibility for the preparation, but have faith everything will be ok,” explains Stephanie. 

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“Do all the research you need and talk to your partner. Do it!” exclaims Victoria. 

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“Follow your heart. Do what’s best for you and your family,” states Genny. “If you are faced with bleeding disorders, don’t go it alone. Build a squad by meeting others through your local and national bleeding disorders organizations, and learn as much as you can.” 

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If you know you are a carrier, family planning doesn’t have to be scary or daunting. Get engaged, get educated, take action, and plan for the best. No matter what, know you are among a community of resilient hemophilia moms who will help guide the way. Learn from those who have lived through the experiences in which you may find yourself.

To all the moms in our community and from all of us at BioMatrix, Happy Mother’s Day!

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Medication Reconciliation: Why It's Important and Steps for Completion

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Medication reconciliation is when you go over all of the medication you are taking (both prescription and over-the-counter) with a healthcare provider, such as your doctor or pharmacist.

Over-the-counter and prescription medications are used frequently to treat thousands of unique health issues. Many times, however, patients are not openly communicating with their primary care provider about all the pills they are taking. Patients may assume that their doctor is aware of medications prescribed by specialists or other providers, but that’s not always the case. There are two easy steps to getting your medication reconciliation complete: 1) Bring your bottles, and make a list. 2) Talk with your doctor or pharmacist about all your medications.

1) Bring your bottles, and make a list!

Reconciling your medications by bringing the physical bottles is vital for several reasons:

• It helps avoid medical errors that could result from an incomplete understanding of past and present medical treatment.

• There is less chance that a medication or prescription is forgotten or overlooked.

• Your provider can more effectively work with you to consolidate and avoid unnecessary duplications of medications or prescriptions that treat the same symptoms.

• Your provider can look for dosing errors and discuss proper administration of your medications.

• With a complete inventory of your medications, your provider can help you identify and avoid adverse drug interactions.

When you bring in your bottles, be sure they are all tightly closed and carried in a safe bag so none are lost or misplaced.

An alternative option is to create a list of the over-the-counter and prescription medications you regularly take. You will have to update this list as doses and drugs change. Bring the list to every appointment as a reference when speaking with your primary care provider.

2) Talk with your doctor or pharmacist about all the medications you are taking. Do this once a year or whenever a new medication is added to what you are currently taking.

It’s important to let your doctor (or their medical assistant) know ahead of time that you want to complete a medication reconciliation. They’ll need to book an appointment with enough time and also prepare beforehand. If you wish to work with your pharmacist to complete a medication reconciliation, call your pharmacy to ask for a good time to come in and discuss all your concerns. Just like with your doctor, this allows your pharmacist the time to prepare for your appointment and will help ensure that they have enough time to complete your medication reconciliation.

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Your Pharmacist Is a Medication Ally

A pharmacist’s work goes far beyond measuring pills into bottles, as he/she can be a helpful resource for patients who have questions or concerns about medications they are prescribed or purchasing.

With a quick phone call or a question asked at pickup, a pharmacist can clarify how much medication you should take based on your prescription; how to administer medication to yourself, a child or an elderly parent; and recommended solutions for your concerns.

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Reconciliation Is a Joint Responsibility

The responsibility of managing medications is equally shared between a patient and his/her health care provider. While the provider is responsible for writing prescriptions and educating patients, it’s ultimately up to the patient to follow the provider’s recommendations.

Consistent reconciliation of your medications will help ensure that you and your primary care provider are on the same page and that your health needs are being addressed in the best possible way.

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References

Barnsteiner JH. Medication Reconciliation. In: Hughes RG, editor. Patient Safety and Quality: An Evidence-Based Handbook for Nurses. Rockville (MD): Agency for Healthcare Research and Quality (US); 2008 Apr. Chapter 38. Available from: https://www.ncbi.nlm.nih.gov/books/NBK2648/

Salanitro AH, Kripalani S, Resnic J, et al. Rationale and design of the Multicenter Medication Reconciliation Quality Improvement Study (MARQUIS). BMC Health Serv Res. 2013;13:230. Published 2013 Jun 25. doi:10.1186/1472-6963-13-230

Redmond P, Grimes TC, McDonnell R, Boland F, Hughes C, Fahey T. Impact of medication reconciliation for improving transitions of care. Cochrane Database Syst Rev. 2018;8(8):CD010791. Published 2018 Aug 23. doi:10.1002/14651858.CD010791.pub2

Anderson LJ, Schnipper JL, Nuckols TK, et al. Effect of medication reconciliation interventions on outcomes: A systematic overview of systematic reviews. Am J Health Syst Pharm. 2019;76(24):2028-2040. doi:10.1093/ajhp/zxz236

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Top Trends in Cancer Research

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May is National Cancer Research Month. While the cure for many types of cancer still remains to be discovered, recent advancements and trials are getting researchers closer. Here we highlight some of the top trends and developments in cancer research.

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Personalized Cancer Vaccines

When we think of vaccines, we typically think of disease prevention. While there are vaccines that prevent cancer, researchers are developing therapeutic vaccines to treat cancer. These vaccines use immunotherapy to boost the body’s immune system to keep the cancer from coming back, destroy any cancer cells left after treatments end, and/or stop a tumor from growing or spreading.¹ Though cancer vaccines have been around for awhile, researches are now getting more robust and consistent results with personalized cancer vaccines and are learning more about vaccine-induced immune response.²

A personalized cancer vaccine, known as PGV-001, showed promising results in its phase I clinical trial in 13 patients with either multiple myeloma, head and neck cancer, lung cancer, breast cancer, or bladder cancer—all with a high risk of recurrence. After an average of 880 days, four patients who had not received additional therapy had no evidence of cancer.³

Researchers also recently reported success for a personalized cancer vaccine designed to prevent melanoma recurrence. Eight high-risk melanoma patients who had their melanoma surgically removed were given these vaccines, targeted individually to their cancer. Four years later, the researchers found that the initial immune response to the vaccine was still present.²

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Personalized Cancer Therapy

While cancer vaccines are one example of personalized cancer therapy, recent discoveries are paving the way for other personalized forms of cancer therapy. Using a new algorithm via machine learning technology, researchers discovered 165 new, unaltered genes that cause cancer. Shown to be essential for the survival of tumor cells, these genes interact closely with cancer genes.

"Ideally, we obtain a complete picture of all cancer genes at some point, which can have a different impact on cancer progression for different patients," says Marsico, head of a research group at Helmholtz Zentrum München. "This is the foundation for personalized cancer therapy."⁴

Personalized medicine for breast cancer patients has been here for awhile. Decades of breast cancer research has led to genomic testing which helps identify risk for recurring cancer for breast cancer patients. This helps inform treatment plans—i.e. whether or not chemotherapy is needed. Until recently, however, there was still uncertainty of how much those with intermediate risk for breast cancer recurrence would benefit from chemotherapy. New research has helped answer this question. Results from a recent trial demonstrated that most women over the age of 50 with intermediate risk did not benefit from chemotherapy. Women under the age of 50 responded better to a combination of chemotherapy and hormone therapy. Trials like this one have moved the needle for more personalized treatment decisions based not only on the stage and type of cancer, but additional factors like the age of the patient.⁵

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Immunotherapy-Based Combination Therapy

First used to treat bone cancer in 1891, immunotherapy has existed for a long time. The discovery of T-cells and their role in immunity was discovered in 1967, guiding researchers towards cancer immunotherapy as we know today.⁶ While immunotherapy treatments continue to show promise, challenges remain both in patient response and dose-limiting toxicities.⁷

Many researchers are studying promising effects of immunotherapy in combination with other therapies. Tian Zhang, MD, a medical oncologist and assistant professor of medicine at Duke Cancer Institute discusses ‘first-line’ renal cell carcinoma (RCC) trials for patients receiving an immunotherapy-based therapy combination. She quotes, "We are really coming into a different era of immunotherapy-based treatments for patients with metastatic kidney cancer.” She goes on to conclude that through these studies, a lot more is now known about when to stop treatment and what to look out for during the course of treatment.⁸

CAR T-cell therapy is a type of immunotherapy in which a person’s T-cells are removed from their body and ‘reprogrammed’ in a lab to fight and attack cancer cells. Once these genetically altered T-cells are injected back into the cancer patient's own body, they go on to multiply and continue to fight cancer over time.⁹

In a recent phase 2 trial with multiple myeloma (MM) patients who had previously relapsed multiple times, the expected length of remission almost tripled for some through a new chimeric antigen receptor CAR T-cell therapy.¹⁰ Though the question still remains similar to other immunotherapies—why is there success for some and not others?

To help address this question, CAR T-cell therapy is being studied in combination with immune checkpoint inhibitors and bispecific antibodies.

Stephen J. Schuster, MD, Director of the Lymphoma Program at the Abramson Cancer Center, University of Pennsylvania quotes, “We’re going to be combining CAR T-cells with other therapies, and moving it up earlier in therapy for patients… I think it's going to change the landscape.” The order and role of immune checkpoint inhibitors and bispecific antibodies in combination with CAR T-cell administration ‘will open new possibilities’.¹¹

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Repurposing Drugs

In 1995, the FDA approved a drug called metformin which has become the most prescribed drug for diabetes in the United States. Prior to the development of metformin, a drug called phenformin was used, but was pulled from the market due to a potentially fatal buildup of lactic acid in the blood in some instances. In 2005, scientists discovered that people who had been taking metformin were less likely to develop cancer. While subsequent studies failed to support positive outcomes for using metformin to treat cancer, lab research showed that phenformin had greater potential for treating skin cancer—especially when used in combination with immunotherapies. And while phenformin is more toxic than metformin, it’s less toxic than other current chemotherapies.¹²

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BioMatrix provides access to specialty and limited distribution oncology drugs with individualized patient support removing barriers to care, reducing adverse events, increasing adherence, and improving quality of life.

We help our patients better understand the details of their cancer treatment and, partnering with the patient and their physician, we provide compassionate support, education, and expert pharmaceutical services.

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References

1. ASCO. What are Cancer Vaccines? https://www.cancer.net/navigating-cancer-care/how-cancer-treated/immunotherapy-and-vaccines/what-are-cancer-vaccines

2. The Harvard Gazette. Cancer Vaccine Shows Durable Immune Effects. https://news.harvard.edu/gazette/story/2021/04/personalized-melanoma-vaccines-show-lasting-effects/

3. WebMD. Cancer Vaccine Shows Early Promise Across Tumor Types. https://www.webmd.com/cancer/news/20210416/cancer-vaccine-shows-early-promise-across-tumor-types

4. Science Daily. 165 New Cancer Genes Identified with the Help of Machine Learning. https://www.sciencedaily.com/releases/2021/04/210412142730.htm

5. Harvard Health Publishing. Can Some Postmenopausal Women with Breast Cancer Skip Chemotherapy? https://www.health.harvard.edu/blog/can-some-postmenopausal-women-with-breast-cancer-skip-chemotherapy-2021041522344

6. US National Library of Medicine National Institutes of Health. The Intriguing History of Cancer Immunotherapy. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6928196/#:~:text=The%20next%20significant%20advances%20came,treating%20bone%20cancer%20in%201891.

7. Nature Reviews. Cancer Nanomedicine for Combination Cancer Immunotherapy. http://umich.edu/~moonlab/ewExternalFiles/66-Nam-NatRevMat-2019.pdf

8. OncLive. Entering an Era of Immunotherapy-Based Combinations for Metastatic RCC. https://www.onclive.com/view/entering-an-era-of-immunotherapy-based-combinations-for-metastatic-rcc

9. ASCO. CAR T-Cell Immunotherapy: The 2018 Advance of the Year. https://www.cancer.net/blog/2018-01/car-t-cell-immunotherapy-2018-advance-year

10. AJMC. CAR T Therapy Induces Response in Majority of Patients With Relapsed Multiple Myeloma. https://www.ajmc.com/view/car-t-therapy-induces-response-in-majority-of-patients-with-relapsed-multiple-myeloma

11. AJMC. Looking at Long-term Results, New Opportunities With CAR T-Cell Therapies. https://www.ajmc.com/view/looking-at-long-term-results-new-opportunities-with-car-t-cell-therapies

12. Medical News Today. Diabetes Drug May Be A Valuable Ally Against Cancer. https://www.medicalnewstoday.com/articles/diabetes-drug-may-be-a-valuable-ally-against-cancer

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Video: The Road to Recovery: COVID-19 Vaccine Information

The Road to Recovery provides an understanding of herd immunity, engages vaccine technology, and clarifies the differences among the currently available COVID-19 vaccines.

Participants will discuss expectations for achieving a healthy America and will leave with a firm sense of the specifics for the Pfizer, Moderna, and Johnson & Johnson vaccines. Ultimately, the program offers information for moving from underneath the cloud of COVID-19.

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

Thank you!

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About Terry Rice
Director of Advocacy and Education

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

Throughout the 1990s, Terry spent significant time educating members of Congress in Washington DC regarding legislative initiatives furthering the interests of persons with bleeding disorders. He served a two-year appointment as the community voting member on FDA’s Blood Products Advisory Committee. He has held various management and executive positions within the healthcare industry for 20 years. Terry is a person with a bleeding disorder and his passion is to empower persons with chronic illness. Terry earned his bachelor’s in chemistry and has studied master’s level economics concentrating in health economics.

Tips for Managing High Cholesterol

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Who needs to be on cholesterol lowering medication?

Your treatment plan for high cholesterol will depend on your current cholesterol levels and your risk of heart disease and stroke. Your risk for heart disease and stroke depends on other risk factors, including high blood pressure and high blood pressure treatment, smoking status, age, high-density lipoprotein cholesterol level, total cholesterol level, diabetes, family history, and whether you have already had a heart attack or stroke.

Your health care provider may prescribe medicine if:

• You have already had a heart attack or stroke, or you have peripheral arterial disease 

• Your LDL cholesterol level is 190 mg/dL or higher

• You are 40–75 years old with diabetes and an LDL cholesterol level of 70 mg/dL or higher

• You are 40–75 years old with a high risk of developing heart disease or stroke and an LDL cholesterol level of 70 mg/dL or higher

Talk with your health care team about how you can lower your risk for heart disease.

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What are the types of cholesterol-lowering medications?  

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How do I manage my high cholesterol?

Take Medications as Directed

If you take medicine to treat high low-density lipoprotein (LDL) cholesterol, heart disease, stroke, or diabetes, follow your health care team’s instructions carefully. Always ask questions if you don’t understand something. Never stop taking your medicine without first talking to your doctor, nurse, or pharmacist.

Make Healthy Lifestyle Changes

You can take steps to lower your high LDL cholesterol levels by making healthy changes to your lifestyle:

• Limit foods high in saturated fat. Saturated fats come from animal products (such as cheese, fatty meats, and dairy desserts) and tropical oils (such as palm oil). Foods that are higher in saturated fat may be high in cholesterol

• Choose foods that are low in saturated fat, trans fat, sodium (salt), and added sugars. These foods include lean meats; seafood; fat-free or low-fat milk, cheese, and yogurt; whole grains; and fruits and vegetables. 

• Eat foods naturally high in fiber, such as oatmeal and beans (black, pinto, kidney, lima, and others) and unsaturated fats, which can be found in avocado, vegetable oils like olive oil, and nuts). These foods may help prevent and manage high levels of low-density lipoprotein (LDL, or “bad”) cholesterol and triglycerides while increasing high-density lipoprotein (HDL, or “good”) cholesterol levels.

• Get active as a family. For adults, the Surgeon General recommends 2 hours and 30 minutes of moderate-intensity exercise, such as brisk walking or bicycling, every week. Children and adolescents should get 1 hour of physical activity every day. 

• Make physical activity a part of each day. Take the stairs instead of the elevator, park a little farther away, walk to the store, or do jumping jacks during commercials.

• Smoking damages your blood vessels, speeds up the hardening of the arteries, and greatly increases your risk for heart disease. If you don’t smoke, don’t start. If you do smoke, quitting will lower your risk for heart disease.

• Avoid drinking too much alcohol. Men should have no more than two drinks per day, and women should have no more than one.

Talk with Your Healthcare Team

You and your health care team can work together to prevent or treat diabetes and ensure that it doesn’t lead to high LDL cholesterol. Discuss your treatment plan regularly, and bring a list of questions to your appointments.

Check Your Cholesterol Regularly

You may need to have your cholesterol levels checked at least once every 4 to 6 years if you do not have heart disease. Some people need to get their cholesterol checked more often or less often. Talk with your health care team about the timeline that is best for you.

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References

Grundy SM, Stone NJ, Bailey AL, et al. 2018 AHA/ACC/AACVPR/AAPA/ABC/ACPM/ADA/AGS/APhA/ASPC/NLA/PCNA Guideline on the Management of Blood Cholesterol: Executive Summary: A Report of the American College of Cardiology/American Heart Association Task Force on Clinical Practice Guidelines. Circulation. 2019;139(25). doi:10.1161/cir.0000000000000624 

Mytilinaiou M, Kyrou I, Khan M, Grammatopoulos DK, Randeva HS. Familial Hypercholesterolemia: New Horizons for Diagnosis and Effective Management. Front Pharmacol. 2018;9:707. Published 2018 Jul 12. doi:10.3389/fphar.2018.00707

Mannu GS, Zaman MJ, Gupta A, Rehman HU, Myint PK. Evidence of lifestyle modification in the management of hypercholesterolemia. Curr Cardiol Rev. 2013;9(1):2-14. doi:10.2174/157340313805076313

Agabiti Rosei E, Salvetti M. Management of Hypercholesterolemia, Appropriateness of Therapeutic Approaches and New Drugs in Patients with High Cardiovascular Risk. High Blood Press Cardiovasc Prev. 2016;23(3):217-230. doi:10.1007/s40292-016-0155-2

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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.

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April Spotlight: Three National Primary Immunodeficiency Disease (PIDD) Organizations & How You Can Get Involved

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April is National Primary Immunodeficiency Awareness Month. Primary Immunodeficiency Diseases (PIDD) are a group of more than 400¹ rare, hereditary conditions characterized by the absence or malfunction of cells or proteins required by the immune system to function properly. There are approximately 500,000 people in the U.S. living with PIDD.² Here we spotlight three organizations dedicated to advancing PIDD research, treatment, and education and how you can get involved.

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1. Immune Deficiency Foundation (IDF)

Immune Deficiency Foundation (IDF) is dedicated to PIDD advocacy, education, and research in order to improve the diagnosis, treatment, and quality of life of those affected. IDF provides education and networking via online resources, in-person events, and virtual events. IDF also has nationwide volunteers serving as peer support, educational meeting hosts, public policy advocates, and fundraiser organizers. To learn more about IDF, volunteering, and/or additional ways to get involved, visit their website here.

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2. Jeffrey Modell Foundation

The Jeffrey Modell Foundation helps people with PIDD find answers about their diagnosis, find expert Immunologists, and connect with other PIDD patients and their families/caregivers. The Jeffrey Modell Foundation has named and funded 150 Jeffrey Modell Diagnostic and Research Centers. It has a network of 821 Expert Physicians while spanning and serving 379 academic teaching hospitals, 294 cities, 86 countries, and 6 continents. Learn more about how this organization continues to drive for a cure as well as how you can participate here.

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3. The American Academy of Allergy, Asthma & Immunology (AAAAI)

The American Academy of Allergy, Asthma & Immunology (AAAAI) is a professional membership organization of more than 7,000 allergists / immunologists globally. It's also a patient resource for patients with allergies, asthma, and immune deficiency disorders. Specific to PIDD, AAAAI provides online educational resources on the types of PIDDS, research, and treatment. You can also find local Immunologists through their online database. Learn more about AAAI including its available resources and becoming a member here.

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BioMatrix helps prevent infections from PIDD so you can live your best life. Together, our clinicians, support staff, and digital health technology offer a comprehensive approach improving quality of life for patients and producing positive outcomes along the entire healthcare continuum.

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DISCLAIMER: THIS IS NOT MEDICAL OR LEGAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider or as legal advice. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.

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References

1. https://primaryimmune.org/about-primary-immunodeficiencies 

2. https://www.niaid.nih.gov/diseases-conditions/primary-immune-deficiency-diseases-pidds
   
   

Be an Advocate: The Ins and Outs of Making Access to Life-saving Medications a Priority

By Shelby Smoak, PhD

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I’ve said this before, even in this newsletter, but I will say it again: Anyone with a chronic illness must become their own best advocate.

Sometimes this advocacy comes in the form of promoting for our needs with a physician or other health care provider. To all the phlebotomists who I see several times in a year, I thank you for listening to my unending requests to use 23g needles over the much larger, standard 16g.

Advocacy is personal and constant. Sometimes however, advocacy requires more of a public, social dynamic. This article addresses that aspect, asking that everyone with an expensive chronic condition join in a push against the looming dominance of Copay Accumulator Adjuster policies.

As we move into the new year, we need to be wondering:  Is there an accumulator adjuster policy in my 2021 insurance plan? Finding the answer and making a personal decision about your plan choice based on an accumulator adjuster is still an example of private, personal advocacy, and is of vital importance to your continued access to affordable health care. 

In our last BioMatrix newsletter, we published a full spread on Copay Accumulator Redux and on navigating those in 2021. I won’t revisit that information, but if you missed it, you can read it online at https://www.biomatrixsprx.com/bleeding-disorders-publications  (BioMatrix News - Volume 15, Issue 4)

Let’s take this piece of the insurance forward and consider how you can transform personal advocacy on copay accumulators into state and national advocacy.

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Why should I advocate for ending copay accumulator adjuster insurance policies?

There are several reasons 2021 should be a year to advocate against copay accumulator adjuster policies:

1. New rules have allowed insurers to apply these policies more freely and widely, making it more likely community members will be impacted.

2. Accumulator policies can make medicines unaffordable for many families, putting their health at risk.

3. Accumulator policies can jeopardize the financial well-being of a family, forcing them to choose between paying for life-saving medicines or for food or bills.

4. Advocacy will be required at the state and federal level, as these oversee different insurance plans.

5. There is currently no other issue that would perhaps put people with chronic illness at greater financial or health risk than this.

6. Advocacy here helps you, your family, and everyone in the rare disease community who depend on medications without generic alternatives.

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How do I become a state advocate?

A great place to start flexing your advocacy is at the state level. Already four states—Virginia, West Virginia, Illinois, and Arizona—have passed copay accumulator bans, all of which were achieved through advocacy. Here in Virginia where I live, the local bleeding disorder chapters [Virginia Hemophilia Foundation and Hemophilia Association of the Capital Area pushed our community to contact our state legislators about the copay bill under consideration. They made this a priority during their advocacy days, and they partnered with other rare disease groups to create a LOUD and resounding voice against the copay accumulator adjuster. 

This type of advocacy depends upon volume and numbers, so while you may sometimes feel adding your voice may not matter, that is just not true. This kind of thinking falls into a classical paradox known as the Sorites Paradox, or, more commonly, The Argument of the Heap. The paradox claims that 1 person removed or added to a group doesn’t matter, but the paradox is that group, the heap, really doesn’t exist: a heap is simply a term for the collection of individual parts, each independent but essential. Removing or adding an individual to that heap substantially changes it. If you’ve lost me on the philosophy there, it’s really just to say everyone matters and in advocacy, every voice matters.

Here are a few steps for taking state action:

1. Reach out to your local chapter and ask about any pending copay accumulator state bills. If your state doesn’t have a current bill under consideration, ask about a group or coalition that may be drafting or seeking sponsorship for a bill. You may also reach out to HFA and NHF who have policy divisions following issues at a state level. The education team here at BioMatrix is also a great resource. We have contacts in each state who follow this issue and would be happy to relay the information to you. Just email us at education@biomatrixsprx.com. 

2. Use an online tool to find and contact your state legislators. There are several online tools for finding your representatives if you google “find my representatives” and enter your state, but HFA has a great one on their website, www.hemophiliafed.org. On their site, hover your cursor over “For Patients and Families” and click “Take Action Center.” From there, scroll down until you see “Find My Legislator.” Enter your information and the tool will show all your representatives from a national and state level. HFA even provides direct links to your representative pages where you can email them and also sign up for their office’s newsletters to keep you even more informed.

3. Write a short email asking to support a bill if your state has one pending. Check out our handy template at the end of  this article for advice on writing this.

4. Write to your state representative about sponsoring a copay accumulator bill if none is pending. Unfortunately, this is where things start and would indicate your state advocacy has a bit more work to do. Don’t be disheartened if this is the case; all current laws started here, and all bills also start here. However, be sure you have reached out to your chapter or a group like HFA to find coordinated efforts that may be going on. Often on issues like this, certain state legislators will already be indicated as favorable to supporting a bill and that’s where you’d want to focus these initial energies. This may be a representative other than your own. Once a sponsor is secured, you work up the ladder to bring more representatives on board supporting the cause.

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How do I become a national advocate?

Advocacy at the national or federal level is very similar to that at the state level. The key steps are essentially the same except you will now be reaching out to your Congressional House and Senate representatives. Moreover, there is already a bill in the House that needs support!

1. Use an online tool to find and contact your Congressional House representative via email or phone. See above for advice.

2. Ask your House representative to support House bill HR 7647. This bill, introduced by Rep. Donald McEachin (D-VA), Rep. Rodney David (R-IL) and Rep. Bonnie Watson Coleman (NJ-12) delays the implementation of copay accumulator adjusters for 12 months beyond the end of the COVID-19 pandemic. While the bill does not seek to terminate copay accumulator policies as many of us would like, it is a politically savvy move to try and recruit bipartisan support, for which HR 7647 congressional representatives on both sides can feel good about supporting a temporary delay related to the pandemic as opposed to a full commitment to overturning an insurance policy. As advocacy goes, it would give the community a foothold in the argument if HR 7647 were to pass.

3. Contact your Senate representative and let them know about HR 7647 and ask for a companion Senate bill, and/or for support for HR 7647 when it leaves the House.

4. Continue following up with both representatives throughout the year. Here, you must walk the balance between concerned advocate and over-zealous disruptor; in other words, you wouldn’t want to email your representatives daily, but once is not enough to show them your concern. I like to say you should be polite and courteous and follow up just to be “annoying enough,” perhaps every month or so.

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Why should I participate in state and national advocacy?

For an issue like copay accumulator adjusters, it’s imperative to participate in advocacy at the state and national level as the laws you are seeking would cover accumulator policies in different plans. State laws will offer protections from accumulator policies in state-run and ACA plans, but they will not protect people enrolled in large group plans, such as those found in big companies that have employees in more than one state. National, federal law, however, will cover accumulator policies in those large group insurance plans, but, likewise, will be ineffective for state-run plans.

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When should I start?

Now! Today! The right time is always right now!

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What if I’m not a great writer or speaker?

This doesn’t matter. Representatives hear from hundreds of thousands of constituents just like you. Follow the ABCs here and you’ll be fine:

1. Tell your story about how life-saving medicines are important to you or a loved one. 

2. Explain to your representative why copay accumulator adjusters are dangerous to you or your loved one.

3. Ask them to support a bill against copay accumulator adjusters.

That’s it! Your voice will be heard, and advocacy will do its job of improving our lives and our health!

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Advocacy Letter Template

This template serves as an example of how to write to a legislative representative regarding HR 7647. Try to keep your letter to one page, be polite, be specific, and share your personal story.

GREETING
(Use “Dear” as it is best accepted formal greeting and use titles, which can be shorten to Rep. or Sen.)

Dear Representative ____________ or Senator ____________ : 

OPENING
(Be polite and direct about why you are writing. Change to suit your needs. Keep it short and to the point - 2-3 sentences.)

I am writing to ask for your support of HR 7647. I (my child, my loved one, etc.) have (has) _________ (severity and diagnosis), which is a rare bleeding disorder. My hemophilia (or other diagnosis) is treated with (medication name), an extremely expensive medication used to control bleeding – there is no generic form of this (injectable) medicine. I rely on manufacturer copay cards to help pay for my life-saving medication, but insurance company copay accumulator policies have made my medication difficult to afford. HR 7647 addresses this issue and would allow me to receive the vital medicine I (my child) need(s). 

BODY
(The body of the letter needs to include your personal story. Listed below are some tips to help provide content. Be specific and provide an example. Keep this to 2 paragraphs, 4-6 sentences each.)

Paragraph 1

• How long have you had/cared for someone with hemophilia/vWD and how long have you been reliant upon life-saving medicine? 

• On average, how much does your medication cost per month/per year? 

• How much is your yearly deductible and out-of-pocket?

• Explain how being able to use a copay card in the past made a difference - when you ordered, used the card, and were able to receive medication.

• Explain why you may be unable to obtain this medication without the help of a copay card being applied toward meeting your out-of-pocket.

Paragraph 2

• Speak about what would happen to you/your child without bleeding disorders medication.

• If you have an example where medicine saved your/your child’s life or prevented serious ramifications, include it in a few sentences. This paints a human portrait for your legislative representative.

CLOSING
(Keep it short and direct. Restate the bill you would like your legislator to support and thank them.)

• This is a very expensive disease whose outcome would be disabling or even fatal without life-saving medicines.

• The financial burden and affordability of treatment has become increasingly difficult/impossible due to insurance companies’ copay accumulator policies. 

• Thank you very much for your consideration and time. 

• Please feel free to contact me for more of an explanation on how HR 7647 affects me. I look forward to hearing from you.

SIGNATURE
Include all of your contact information. While it’s unlikely you will be called, you just might. Include your address as it will confirm your constituency.

Sincerely,

Name
Address
Home and cell phone
Email

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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.

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

We value your privacy. Review our Privacy Policy here.

Quality Time with Your Kids

By Sarah Henderson

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We have learned a great deal this past year about not taking people for granted and making the most of every moment we have with those we hold dear.

Quarantines, lockdowns, virtual learning and working from home have given us a mountain of time to be home with our loved ones. However, when we feel our time together seems endless, we may begin to take it for granted. Are you taking the time to spend true quality one-on-one time with your kids? Even though right now you likely have a vast quantity of time with them….is it quality? Here are some easy ways to make sure that the time you are spending together is quality:

• Have a specific day set aside that each child can look forward to. Some people pick a specific day of the week, like every Tuesday, or a set date, such as the child’s birth date. For example, a child born on the 12th would have their special one-on-one time on the 12th of each month. For busier or bigger families, it may mean only one special day per month – but all the more important to stick with it and make it matter. 

• Schedule your time as you would any other meeting and stick to it! 

• Let your child know you are looking forward to your time with them.

• Turn monitors and screens off – be in the moment only with your child.

• Don’t answer the phone. Let them know that they are your priority.

• Make your scheduled time all about your time with only that child – no other siblings, cousins, or friends. For older siblings, it could mean being with them after the younger children go to bed or are down for a nap. Maybe it means tag-teaming parents vs kids. The important thing is to figure out what works best for you and your family. 

• Ask questions about their day, their interests and their dreams. Don’t use this as a teaching moment or time to lecture – use it as a moment to listen, get to know them, and let them open up to you. Avoid topics that cause friction or conflict between you. 

• Be flexible, be creative.

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So much of our world today revolves around computer, phone, or television screens. Don’t let these screens take away the value of your time together. It’s also important not to fall into a cycle of trying to one-up or go over the top with activities and time spent together. Your time together should be something valued purely for the time spent, not money spent.

The options are limitless, but here are a few ideas to inspire you for screen-free entertainment:

• Go for a walk, bike ride, or roller skate

• Go for ice cream or make ice cream sundaes at home

• Throw a football or Frisbee around in the backyard

• Go fishing

• Go swimming

• Do a puzzle

• Have a picnic

• Bake a dessert together

• Play flashlight tag

• Play a board game

• Reminisce as you look through old photos together

• Build a snow fort and then hang out in it together

• Play basketball

• Make s’mores around a fire pit

• Teach your child a game you enjoyed when you were their age

• Learn a new art together – origami, painting, pottery

• Have a spa day

• Visit an animal shelter

• Try a new recipe and then enjoy eating it together

• Stargaze while enjoying a thermos of hot cocoa

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An article in the Washington Post points out, “The more time a teen spends engaged with their mother, the fewer instances of delinquent behavior. And the more time teens spend with both their parents together in family time, such as during meals, the less likely they are to abuse drugs and alcohol and engage in other risky or illegal behavior. They also achieve higher math scores.” Why not take advantage of this opportunity to spend time with your child? You will never get this time back and you’ll never regret the time invested in a relationship with your child.

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Reference:

https://www.washingtonpost.com/local/making-time-for-kids-study-says-quality-trumps-quantity/2015/03/28/10813192-d378-11e4-8fce-3941fc548f1c_story.html

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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.

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The Royals

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Her reign was the longest of any female monarch in history. As Queen, her land entered a time that saw progress and growth in nearly every aspect of society. From industry and science to culture and politics, her rule ushered in an era that would later bear her name, Victoria. Taking the throne at the age of eighteen and ruling for over sixty-three years, Queen Victoria is perhaps one of the most iconic figures in the history of the British Monarchy.

Under Victoria, the British Empire rose to become a leading global power. One way the monarchy sought to secure political alliances came through strategic marriages between the ruling royal families. Queen Victoria became known as The Grandmother of Europe as some of her 9 children and 42 grandchildren married into royal families across the continent. It was through these marriages that Victoria not only secured political clout, but such practice was also the cause for the passing of a condition the royal monarchy often tried to hide, hemophilia. A carrier of what was recently proven to be hemophilia B, Queen Victoria inadvertently spread the condition from the United Kingdom to the royal houses of Germany, Spain and Russia. The line of princes with hemophilia in Europe led to the bleeding disorder being coined as The Royal Disease.

Though they lived lavish courtly lifestyles, life for Victoria’s descendants with hemophilia was not easy. At a time when doctors knew little about the condition, there was not much families could do for their affected children. Though great care was taken to protect the princes, unfortunately many did not live to see adulthood. The following is an account of “The Royal Disease” as found in some of the major ruling monarchies of Europe.

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The United Kingdom

Prince Leopold, Duke of Albany

Prince Leopold was born April 7, 1853 at Buckingham Palace. He was Victoria’s 8th child and her only son with hemophilia. The condition caused Victoria much anxiety, prompting her to keep the prince close to her side. He was followed in permanent attendance by a number of physicians. Victoria thought it unnecessary for him to leave the home and even encouraged him not to marry or have children.

Unable to pursue a military career because of his condition, Leopold entered into the Christ Church of Oxford where he studied a wide variety of subjects. He earned an honorary law degree and went on to become a patron of the arts and literature. He also served as the unofficial secretary to his mother.

Despite the wishes of his mother, Leopold sought marriage and considered it his only hope for independence. His health condition caused some difficulty in finding a wife. After a number of rejections, Leopold eventually married Princess Helene Friederike, a member of the German royal family. Though their marriage was brief, the couple was happy and gave birth to a daughter, Alice, Countess of Athlone, and a son, Charles Edward.

Because of joint pain associated with his hemophilia, the winter months were always difficult for Leopold. In February 1884, while his wife was still pregnant with Charles Edward, Leopold was encouraged by his physician to spend some time in the warmer climate of Cannes, France. Just weeks later on March 27, Leopold suffered a fall at a yacht club in Cannes and injured his knee. He passed away early the next morning from a combination of internal bleeding and a fatal mixture of the pain medications he received.

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Prince Rupert of Teck

Born on April 24, 1907, Prince Rupert was the son of Princess Alice, Leopold’s daughter. Rupert was a studious young man and attended Eton and Trinity Colleges at Cambridge University. On April 15, 1928, while traveling in Bellevue-sur-Saone, France, Rupert was in a car accident. Five days later, just four days before his 21st birthday, Rupert died of a brain hemorrhage.

Hemophilia in the royal family did not end with the princes most closely tied to the British Royal Family. Queen Victoria’s daughters, Princess Beatrice and Princess Alice, would later prove to also be carriers of the condition, and would pass the disorder to other ruling families in Europe.

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Germany

Hemophilia found its way to the German Empire with the marriages of Queen Victoria’s daughters, Princess Beatrice and Princess Alice to German suitors. Beatrice had two boys with the condition, Leopold and Maurice. Princess Alice had six children to include one son with hemophilia, Prince Frederick, and two daughters that were carriers of hemophilia, Princess Irene and Princess Alice. Irene would go on to have two children with the disorder, Prince Waldemar and Prince Henry.

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Prince Leopold Mountbatten

Prince Leopold, the son of Princess Beatrice and Prince Henry of Battenberg, was born on May 21, 1889. He served in the King’s Royal Rifle Corps, where he attained the rank of Major. Leopold was also a member of both the Knights of the Royal Victorian Order and the Knights Grand Cross of the Royal Victorian Order. At the age of 32, he passed away on April 23, 1922 during a hip surgery needed as a result of his bleeding disorder.

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Prince Maurice of Battenberg

Prince Maurice, the youngest son of Beatrice and Henry, and Prince Leopold’s brother, was born on October 3, 1891. Educated at Lockers Park Prep School, Maurice went on to attend the well-known Wellington College. Like his brother, Maurice volunteered in the King’s Royal Rifle Corps. As a Knight Commander of the Royal Victorian Order and as a Lieutenant in the rifle corps, Maurice served bravely in World War I. He was mortally wounded by shrapnel at the First Battle of Ypres in 1914 and died on the battlefield.

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Prince Friedrich of Hess

Prince Friedrick was born to Princess Alice, the daughter of Queen Victoria, on October 7, 1870. The grandson of the queen, Friedrich or Frittie as the family often called him, was an active, cheerful child. He was diagnosed with hemophilia in February of 1873 after a cut on his ear bled for three days. Three months later while playing with his younger brother, Frittie climbed onto a chair in his mother’s bedroom to get a better view from a window. He fell through the window after accidentally tipping the chair. Though he survived the twenty foot drop, he died hours later from a brain hemorrhage. His mother, Princess Alice never recovered from her loss.

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Prince Waldemar of Prussia

Irene, the daughter of Princess Alice, gave birth to Prince Waldemar of Prussia on March 20, 1889. The family was devastated that the “Royal Disease” had shown up in the ruling Prussian family. Although the condition caused Irene much anxiety with regards to her son’s health, unlike many of his relatives, Waldemar lived into his fifties. He married Princess Calixta of Lippe on August 14, 1919. Though they had a happy marriage, they decided against having children.

Waldemar lived to see a time when treatment for hemophilia saw some improvement. Doctors discovered that an infusion of blood from a healthy patient could help stop the bleeding in people with hemophilia. As such, Waldemar received infusions to control his bleeding episodes. During World War II, as he fled the Russian advance with his wife, the couple found themselves in Tutzing, Bavaria. Not long after arriving in the city, the American Army took control of the area and sent all the available medical resources to treat victims in the concentration camp. Without access to blood transfusions, Waldemar passed away on May 2, 1945 in Bavaria.

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Prince Heinrich of Prussia

Waldemar’s younger brother, Prince Heinrich was born on January 9, 1900. The entire family was devastated, especially his mother, Irene, when Heinrich died after falling and bumping his head. He lived to be just four years old, passing away February 26, 1904.

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Russia

Princess Alice had another daughter, Alexandra of Hesse who married Tsar Nicholas the II of Russia. They would go on to have five children, one of them considered to be one of the most famous of all the royals with hemophilia, Tsarevich Nikolaevich Alexei, the great grandson of Queen Victoria.

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Tsarevich Nikolaevich Alexei

It was an extremely joyous occasion for the Romanov family when Alexei was born on August 12, 1904. Being the youngest of the family, and the only son, Alexei was in line to be the next Tsar and leader of the Russian Empire. As the only male heir to the throne, the family was devastated when it was discovered that Alexei had hemophilia.

From a young age, Alexei was very energetic, though he was ordered not to play too roughly and was prohibited from such activities as riding a bicycle. As a child, Alexei was prone to mischief and he was known to play pranks on guests of the house. His parents had to appoint two sailors from the Imperial Navy to watch over Alexei and keep him out of trouble, which they were not always able to do.

When he suffered bleeding episodes, the entire house suffered with him. He was prone to weeks in bed and often had to wear a heavy iron brace. Alexandra and Nicholas devoted much of their time and energy to seeing that Alexei was taken care of. They came to rely on the services of Rasputin, a monk who was able to help Alexei through his painful bleeding episodes. Nobody knows exactly how Rasputin was able to “heal” the young Tsarevich. It is speculated that he used some combination of hypnosis, herbs, or as some believe “supernatural healing powers” to aid Alexei in times of need.

Alexei’s hemophilia often took his parents’ attention away from governing. Their reliance and close connections with Rasputin spurred much gossip and discontent. The country was already plagued with political and social unrest. A series of bloody revolutions took place that would ultimately put the communist Bolsheviks in power. Arrested in the Russian Revolution of 1917, Alexei and his family were forced to live for some time as captives. Tragically, in July of 1918, the family was systematically executed by the Bolsheviks to ensure that a counter-revolution could not rally around the former rulers of Russia. Alexei and his family were eventually canonized as “passion bearers” in the Russian Orthodox Church Abroad.

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Spain

Hemophilia would find its way into the ruling royal Spanish family by Victoria Eugenie, who was daughter of Princess Beatrice and granddaughter of Queen Victoria. Victoria Eugenie would become Queen of Spain when she married King Alfonso. Of their four sons, two of them (including the heir to the throne) would be diagnosed with hemophilia. The King and Queen of Spain were reported to have an unhappy marriage. The King took many mistresses and reportedly never forgave the Queen for bringing the bleeding disorder into the royal bloodline.

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Alfonso, Prince of Asturias

Queen Victoria’s great grandson, Alfonso was born on May 10, 1907 and was the heir to the throne of Spain. When it was found he had hemophilia, he (and later his brother, Infante Gonzalo) wore specially tailored jackets to try to help prevent bleeding episodes. Political upheaval left the monarchy in Spain largely defunct as the country moved to become a republic. Alfonso renounced his rights to the throne and married a commoner. He would later divorce, remarry, divorce again, and then father a child out of wedlock.

In 1938 at the age of 31, while driving in Miami, Florida, Alfonso crashed into a telephone booth. Though his injuries were minor at the time, he suffered fatal internal bleeding and later passed away. He was initially buried in Miami, but was later moved to The Pantheon of the Princes in El Escorial, Spain.

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Infante Gonzalo of Spain

Born October 24, 1914, another great grandson of Queen Victoria, Infante Gonzalo was the youngest of King Alfonso and Queen Eugenie’s children. When he was baptized, the final name in his title “Mauricio” was in honor of Prince Maurice, his uncle with hemophilia that was killed in World War I. Gonzalo was an avid sportsman and also held Private rank in the Spanish Army, though he did suffer ill health because of his condition. While spending summer holiday with family in Austria, Gonzalo was driving with his sister. In an attempt to avoid hitting a cyclist, the siblings crashed into a wall. Similar to his brother who would perish in a car accident four years later, Gonzalo suffered no obvious injury immediately following the accident. Hours later, it was discovered that Gonzalo was hemorrhaging into his abdomen. He died a few days later.

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One day, Olga, Tsarevich Alexei’s sister, found the ten-year old prince gazing up at the sky. When she asked what he was doing he replied, “I like to think and wonder…I enjoy the sun and the beauty of summer as long as I can. Who knows whether one of these days I shall be prevented from doing it.” The princes afflicted with “The Royal Disease” faced struggles largely unknown to our community today.

Though the ruling monarchies of Europe often attempted at every level to minimize the appearance of hemophilia in their families to the public; privately, great measures were taken to learn about and treat the disorder. They commissioned the finest physicians of the time to attend to their children. Increased attention from physicians brought interest and new literature regarding the condition. The late 1800s saw a huge increase in the amount of publications focused on hemophilia, shedding light and paving the way for future physicians to advance treatment. Though their struggles were great, the status of the princes with hemophilia helped advance research and bring attention to “The Royal Disease.”

It is speculated that treatment for hemophilia would not have advanced as quickly as it did were it not for the royal princes who suffered from the condition. Their stories are compelling and prompt us as young Alexei to think and wonder…

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At BioMatrix, our clinical and support staff are highly experienced in bleeding disorders.

We offer a team of uniquely qualified and compassionate care coordinators who understand how to successfully manage a bleeding disorder.

Our coordinators work closely with patients, families, Hemophilia Treatment Centers and other support organizations to provide around-the-clock, individualized services.

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Home Infusion Steps and Helpful Tips

Even for those very experienced in infusing, there are times when a vein is missed or decides to be more challenging. Here are steps and helpful suggestions for successful infusion.

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