By Jasmyn Genchev
Ever thought your voice could impact hundreds of people? Probably thought only the Martin Luther King’s or the Mahatma Gandhi’s could complete a task like that, right? But, that’s not the case for TPA senior Kierra Maher.
On Tuesday this week, Kierra boards a plane to Washington D.C. to do that very task. Kierra’s father has Von Willebrand disease or hemophilia, a genetic disorder that is caused by a missing Von Willebrand factor, making it difficult for blood to clot. A few months ago, Kierra began looking into the Hemophilia Federation of America (HFA), a non-profit organization that assists, educates, and advocates for the bleeding disorder community, in search of scholarships for those with or those who have family members with hemophilia. After getting to know more people in the community she was contacted by the HFA to see if she was interested in speaking to a group in Washington, D.C. Kierra of course accepted and is preparing for this once in a life time experience.
The National Hemophilia Foundation (NHF) hosts their annual Washington Days during March, a time when people affected or with loved ones who are affected by bleeding disorders come together to advocate for issues that matter to them. Kierra’s trip will be completely paid for by the NHF, with dinner and a hotel room provided. On Wednesday evening she will be attending two training sessions on using social media for advocacy. Then, on Thursday all participants will visit Capitol Hill to meet with legislators who deal with healthcare issues, discussing the ways the Affordable Care Act (ACA) has affected the bleeding disorders community and ask that important policies be maintained.
“A common misconception about people with bleeding disorders is that they bleed more than anyone else. They just bleed longer, because their blood does not contain enough of the clotting factors that help create blood clots,” Kierra says. “Because of this it is important for people with bleeding disorders to focus on fitness. Believe it or not, working out increases clotting factor. It also keeps your muscles stronger, leading to less stress on joints and fewer joint bleeds.”
But, what most people don’t realize is the financial burden having hemophilia and other bleeding disorders can be to individuals. Hemophilia drugs are some of the most expensive on the market. For example, Roche, the company that makes a recently produced drug called Hemlibra, plans to charge about $482,000 for the first year of treatment, and $448,000 a year after that. Unfortunately, some patients with severe hemophilia need regular infusions of these very expensive clotting factors, and because the lifelong disease will never go away, neither does the cost to treat it.
Although Kierra may not be as well-known as King or Gandhi, the informative words she has prepared to say may come close in being just as inspirational, especially to those who care to listen.