My day at the National Hemophilia Foundation started at 10 am when I arrived. My host, Ayana Woods ’98, is the Director of Education for the Foundation. We spent an hour discussing how she came to work at the National Hemophilia Foundation, the goals of the Foundation, and their patient education initiatives. One of Ayana’s primary projects is the Steps for Living website, which provides accessible information to hemophilia patients and their families, organized by age category of the patients. Ayana also provided other informative materials, such as pamphlets and coloring booklets, directed at patients of various ages and backgrounds. For instance, several of the materials had been translated into other languages. We had a thought-provoking discussion about the ethics of a nonprofit patient advocacy organization being funded by pharmaceutical companies. I also learned about how hemophilia patients receive treatment at comprehensive Hemophilia Treatment Centers at which they receive care from a specialized medical team. This model could be useful for other types of conditions that affect many aspects of a patient’s life.
After our conversation, Ayana introduced me to Marla Feinstein, who is involved with health policy. It is her job to ensure that hemophilia patients are not overlooked when policy-makers write healthcare laws. For example, the government and insurance companies may prefer covering only one type of medication for a specific type of hemophilia, but that medication may not work as well as another type of medication for a minority of the patients with the condition. Ideally, both medications would be covered by insurance policies, but when funding is limited, a minority of patients with a rare disease may not be seen as a priority, despite the fact that their medications can cost over a million dollars per year.
Next, I spoke with Angelina Wang about the history of the National Hemophilia Foundation, the national and international efforts of the Foundation, and how the Foundation funds research projects relevant to hemophilia. Scientific research and clinical trials provide the information needed to support the arguments for policy-makers to consider the needs of hemophilia patients, but it is difficult to run clinical trials involving a rare disease with a small patient population. Research has been turning towards genomics, since analyzing the genotypes of individual patients can allow for more individualized treatments. I learned that the Foundation is also very involved with HIV/AIDS and hepatitis C campaigns because, in the 1980s, the medications for hemophilia patients were made from donated blood plasma, and the blood supply at the time was contaminated since no one knew to screen donated blood for HIV or hepatitis C. Therefore, many hemophiliacs contracted these diseases. Additionally, we discussed the recent efforts to assist a hemophilia foundation in Nigeria, where hemophilia has so far been ignored for political reasons.
At this point, I went to lunch with Ayana. Over sushi, we discussed personal aspects of living a professional life as a Princeton alum. Upon returning from lunch, I met with Development Manager Kristin Hokoyama and Senior Development Manager Jeremy Griffin. They talked about seeking funding from various sources, including individual donors and events such as Hemophilia Walks throughout the nation. They advised me on the importance of networking, and described the culture and dynamics of the office. Everyone I met at the National Hemophilia Foundation was very passionate about nonprofit work and the goals of the Foundation.
My last meeting was with Manager of Media Relations Keith Hudson. He described the hierarchy of the public relations department, and emphasized the importance of being an “everyman” when it comes to communications in the modern work environment. The National Hemophilia Foundation communicates with the public through social media, and with a more targeted audience through their magazine called Hemaware and a more condensed online Enotes version of this magazine.
Spending a day at the National Hemophilia Foundation provided me with valuable insight into the workings of a national patient advocacy program. Since my interests lie in the health sciences and health policy, it was deeply beneficial for me to see how the National Hemophilia Foundation interacts with government and insurance policies, patients and physicians, the public, and research institutions to promote what is best for the hemophilia community. I enjoyed this opportunity, and I am very grateful to Ayana and her coworkers for being so friendly and sharing their experiences, information, and advice with me.