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The HFA team is excited to welcome a new group of students to our summer 2021 internship program! They will be participating in our annual Advocacy internship virtually, developing their passion in health care policy and self-advocacy. They will be participating in regular webinars and online training about legislative, policy and advocacy issues, learning more about hearings and what it means to work on Capitol Hill, building communications and media skills, and more.

Check out this week鈥檚 Intern Introspective:

An Interview with My Father: by Silas

My dad has raised me to live an active, adventurous lifestyle. He and I are both diagnosed with Von Willebrand鈥檚, but, he passed me the mindset that I should pursue an active lifestyle and only limit myself (regarding my blood condition) when necessary for safety. I really appreciated this. My dad is an adventure travel writer, doing work with National Geographic and similar publications. So, I wanted to ask him about how he got into a career that was founded on mountain biking and other outdoor sports; not the most obvious line of work for someone who struggles with bike crashes. This is our interview, straight from the mind of an adventure journalist with a bleeding condition.

You have an active lifestyle that includes adventures some people would consider risky. It鈥檚 not what most people would expect of someone with a bleeding disorder.

I鈥檓 lucky. Life has always been a fairly simple equation for me: follow my passions. That means living simply with lots of time in the natural world, exploring wild places. There鈥檚 nothing I love more than climbing a mountain in the wilderness, ideally with grizzly bear and wolverine tracks in the snow and skiing down it. When I was your age, I never imagined adventure could become a career, but then I learned people would pay for stories you鈥檇 written. I鈥檝e been a writer ever since.聽

How does having a bleeding disorder affect how you conduct your career?

There鈥檚 been a learning curve, and I was thick-headed for years. In my youth, I basically ignored my bleeding condition. After a series of bad bleeds, some in inconvenient corners of the globe, I started figuring it out. The years since have been a gradual process of forcing myself to dial back my more adventurous instincts and exploring other aspects of the outdoor experience, like conservation, natural history, and the many compelling intricacies of the human/nature relationship.

This reminded me of what I recently wrote in a reflective piece for this internship. I critiqued myself for letting my frustration and denial get in the way of properly treating a bleed. But, I know my dad has been forced into practicality over the years. I鈥檝e heard him talk about this in the past. Building on that, I asked if having a bleeding disorder affected any major decisions in his career:

Many times. I鈥檝e turned down invitations for incredible expeditions because I recognize that I鈥檓 not an appropriate teammate for a major endeavor in a remote area. If I have a bleed, it could jeopardize the entire effort. Multiple times I鈥檝e had to turn down invitations and assignments that were opportunities of a lifetime in places like Bolivia and Mongolia. And that鈥檚 okay. I鈥檝e found other things to focus on that I enjoy.

How do you address your bleeding disorder with your adventure partners/group?

It varies, but anyone that regularly adventures with me knows all about my bleeding condition and the steps I take to manage it, including the extended breaks I sometimes have to take to heal a bleed. If I鈥檓 doing a multi-day trip in the wilderness with new people, I discuss it with them beforehand and explain why I鈥檓 so careful to not impact my body and why I鈥檒l be sticking needles in my arm sometimes before we head out for the day. Anything with a higher risk of impact, I only undertake with people I know well (in addition to wearing body armor and dosing with factor beforehand).

Thanks Dad. Any extra advice for adventuring with bleeding disorders?

It does require extra care and attention, which is okay. It pays to be mindful when you鈥檙e moving your body鈥攚hether you鈥檙e stepping over a fallen tree on a mountainside or riding a bicycle down a rocky trail or skiing down a steep slope through cliff faces. Having a bleeding condition just means I have to be extra conscious of my movements and surroundings, like a super mindfulness. It鈥檚 a good practice for everyday life, too. It鈥檚 also okay to slow down and take things easy. The nectar of life is appreciation, and we can appreciate and enjoy the richness and beauty of the natural world at whatever pace and in whatever style suits us. Sometimes my bleeding condition even helps me slow down. Like the other day when I was paddle-boarding a spectacular mountain lake. I got a couple miles out into the water when I aggravated a tricep bleed I thought had healed. Instead of paddling for 10 miles, I quickly decided to rest my arm and sit and relax on my board in the middle of the lake. The breeze blew me back to shore as I quietly sat and watched sunset paint the peaks gold. It was special and I wouldn鈥檛 have happened if I鈥檇 been fixated on paddling as far as I could before dark. One thing you learn when you have a bleeding condition is to roll with things. It鈥檚 a good lesson for everything in life, really.

Internship Reflections: by Ryan

As I approach the last couple of weeks of the internship, I鈥檝e been extremely satisfied with both what I鈥檝e been able to give and what I鈥檝e been able to receive. The only thing that I don鈥檛 like about the internship is that it is only for the summer! I鈥檝e been able to help HFA by listening to hearings and looking through the Federal Register and relaying what is going on in the world of policy. In the world of advocacy, I am extremely excited to provide important information for students with bleeding disorders planning to experience their first year on college campuses, including how to ensure continuity of care.

I have received so much support from the team and have learned so much just by working alongside them and listening to them. I have also learned in-depth about various healthcare topics, which has made me a more knowledgeable person when it comes to discussions about health and insurance. Lastly, I have enjoyed working with the other three interns and am excited to see their capstones and the good that will come with them. I hope to work with HFA and help out where I can long after the internship ends, and I plan to continue advocating for the bleeding disorder community.

Researching Healthcare Policy: by Justin

Each week throughout the course of this internship, the HFA interns are given resources to explore a specific area of healthcare policy that is pertinent to the bleeding disorders community. The topic for this week involved the complicated issue of drug pricing, which is especially relevant to the bleeding disorders community with many clotting factor therapies being classified as orphan drugs. Orphan drugs are drugs specifically designated to treat rare disease and are funded under the the Orphan Drug Act of 1983, which ushered in a new era of innovation and production of therapies for rare diseases that included $15 million dollars a year in tax credit and monopolies for seven years on new drugs. This resulted in an economic boom for the rare disease drug industry, which currently stands at a staggering $200 billion dollars. To encourage high investment rates and continuous innovation, the drug industry often places multi-million-dollar price tags on these medications, spelling out disaster for patients and insurance companies alike.

One of our required viewings for the week was Six Million Dollar Claim, an enlightening New York Times documentary that revealed the harsh reality of orphan drug pricing and how it can wreak havoc on patients and employers who sponsor health insurance plans. The documentary chronicles the story of Dawn Patterson, who was diagnosed with a rare degenerative bone disease called hypophosphatasia, for which the only suitable treatment was a drug called Strensiq. Dawn and two of her affected children were required to take Strensiq in order to keep their health in check. A combined $6 million dollar charge for the single drug from the family placed an immense burden on her husband鈥檚 boiler union insurance plan: an employer-sponsored plan in which all members equally contribute. The documentary described the union managers’ struggle to negotiate with Strensiq鈥檚 manufacturer to lower the per-patient drug cost and the Patterson family grappling with the difficult prospect of needing to forgo their medication due to its outlandish cost.

With one in ten Americans, or thirty million citizens, being diagnosed with a rare disease, the collective incidence of rare disease is much more common than one would anticipate. This means orphan drugs are being utilized more often and are expected to be covered by insurance plans at higher frequencies. Regarding the bleeding disorders community, products for rare factor deficiencies and extended half-life products are beginning to enter the market and are sure to incur high costs. Outside of the classic clotting factor treatment for bleeding disorders, the prospect of gene therapy for those with hemophilia is becoming more and more viable with each coming year. A 2020 NPR article covered the prospect of an FDA approved BioMarin gene therapy product for hemophilia A that could be as expensive as $3 million dollars, making it the highest price for a single drug in the United States if put on the market. Although FDA approval was removed later in the year, the rise of gene therapy as a hyper-inflated drug is something that the bleeding disorder community must be vigilant of in terms of access and cost. Prices are already quite inflated for standard therapies out on the market and further innovation within will inevitably drive these prices up.

Understanding Health Disparities: by聽Makayla

This week, I learned about health equity and the holistic definition. Health equity is defined by the government as the 鈥渁ttainment of the highest level of health for all people.鈥 Achieving health equity requires valuing everyone equally with focused and ongoing societal efforts to address avoidable inequalities, historical and contemporary injustices, and the elimination of health and health care disparities.

I also defined health disparities. In 2020, HealthyPeople.gov defined a health disparity as 鈥溾 a particular type of health difference that is closely linked with economic, social, or environmental disadvantage. Health disparities adversely affect groups of people who have systematically experienced greater social or economic obstacles to health based on their racial or ethnic group, religion, socioeconomic-status, gender, age, or mental health; cognitive, sensory, or physical disability; sexual orientation or gender identity; geographic location; or other characteristics historically linked to discrimination or exclusion.鈥

As I researched women’s health in the bleeding disorder community, I came across a video of a woman describing a bleed in her reproductive system. She then went on to express how making medical appointments where the doctors did not take her seriously left her bleeding untreated and herself in pain. This experience happens to women of all ages as some do not get diagnosed until they are in their sixties. This neglect from medical professionals, especially those of minoritized racial groups, stems from the thought that they are often exaggerating.

There have been treatment inequities in communities of women and those with mild hemophilia. Women fight the stereotype that men can only have hemophilia, and often have microbleeds which can cause bruising or swelling. Men with mild hemophilia often struggle for treatment access because their symptoms are overlooked. Patients facing inadequate treatment have found that men who have higher factor levels often have access to factor replacement. On the other hand, there has been action taken in order to serve those who face health disparities. More healthcare professionals are learning about hemophilia inheritance and are becoming knowledgeable on vonWillebrand, platelet dysfunction, and factor deficiencies occurring in women.

Biden issued the Executive Order on Advancing Racial Equity with hopes to combat structural racism, the set of historical and contemporary policies, practices, and norms that maintain and create white supremacy. In this order, he expects to address pay, housing, education, and loans. The Domestic Policy Council was introduced as a group that implements policy objectives, providing equal access to benefits and opportunities to marginalized folks. President Biden believes we need a holistic equity agenda in order to take care of all communities and their challenges, especially those who are underserved.

There are also hemophilia related groups doing groundwork. The Bleeding Disorder Health Disparities Council identifies present health disparities and populations impacted. As usual, there is not much data available or there is informal data available, but much hasn鈥檛 been formally reported or analyzed. People of marginalized communities already face pre-existing conditions and systemic racism and other inequalities.


Check back next week to hear more about the work our interns are doing at HFA.

Thank you for Takeda for a charitable donation for making the Policy and Government Relations internship possible.

 


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