THE HEALTH ADVOCATE

Paul R. Brayshaw, M.P.H. Director of Healthcare Advocacy and Programs Matrix Health Group

THE HEALTH ADVOCATE SELF ADVOCACY

According to Wikipedia, “Self-advocacy refers to people with disabilities taking control of their own lives, including being in charge of their own care in the medical system.”

personal challenges to overcome disparities. The benefit of their successes are ultimately protective of all people with bleeding disorders and other chronic conditions.

When individuals affected by a disability or a chronic illness seek to improve their quality of life by asking questions or seeking a second opinion, they are exercising the right to speak up for themselves. Whether the setting is a hemophilia treatment center, a pharmacy consultation, a support or peer group, or testifying before Congress or government agency, anyone and everyone has the capacity to be a selfadvocate.

Mr. Christopher Templin is one of these champions whom I deeply respect and appreciate for his determination, persistence and dedication to all people living with hemophilia, and those who will be born with this rare condition.

In personal experiences, I have sought to advocate for my personal health by participating in rallies like the Ricky Ray Rally in 1995, through countless visits to Members of Congress in Washington, and General Assemblies in various States, as well as through testimony in government agencies. Throughout each of my experiences, I have had the honor to witness and share in the experiences of other members of our bleeding disorders community toiling as self-advocates. These people are champions of access to care and whom seek to share their own

Last July, Christopher participated in the Office of Health and Constituent Affairs (OHCA) 13th Annual FDA Patient Representative Training Workshop. This workshop brought together both newly recruited and experienced patient representatives to share their own personal experiences regarding the development of drugs and therapies. Please read an article Christopher wrote in the August edition of the FDA Patient Representative Newsletter (next page). Christopher also serves in various other capacities as a Special Government Employee, in which he has maintained a critical voice for the bleeding disorders community through his various roles as a participant in advisory meetings and discussions in Washington D.C. and throughout the United States. People like Christopher inspire me to fulfill my own personal form of self-advocacy, not only for myself but the entire bleeding disorders community. The ability of people living with chronic illness to achieve an optimal existence relies on our individual and collective ability to overcome inequity and attain equal access wherever health care is provided. Thank you for your efforts, Christopher!

NOT YOUR AVERAGE WORKSHOP:

PATIENTS DO TRULY HAVE A VOICE BY CHRISTOPHER TEMPLIN, FDA PATIENT REPRESENTATIVE On July 12-13, I had the honor and privilege of attending the 13th Annual FDA Patient Representative Workshop, hosted by the agency’s Office of Health and Constituent Affairs (OHCA). Upon arrival, it was clear to see the level of commitment and dedication by OHCA staff as we heard first-hand their backgrounds that led them to their current roles. I, personally, felt their encouragement that underscored the important role I have as an FDA Patient Representative. To say it was an exciting experience to be in a room filled with such dedicated and compassionate patients and advocates committed to making a difference in the lives of persons with lifelong chronic medical conditions, is an understatement. It didn’t take long for me to recognize the knowledge and expertise that was demonstrated by my fellow colleagues, which served as a major motivation for my own efforts. As I listened to each heartfelt story detailing a different journey to becoming an FDA Patient Representative, I couldn’t help but be touched

by their candidness and courage as they shared openly their experiences with a disease, disorder, or condition. I was in awe from the time I arrived at the meeting to the time that I left--this experience will forever be with me in memory and spirit. The honest conversations I had with my fellow FDA Patient Representatives will continue to be a driving factor in my life to ensure that the decisions, testimony and actions that I take as an FDA Patient Representative will benefit the patients I represent and be based on facts and evidence. The agenda was well planned and thought out, very comprehensive and informative; the information learned and the friendships made will be extremely beneficial and cherished well into the future. It is very encouraging to know that the patient truly has a voice when it comes to the FDA Patient Representative Program. Although I’ve been active in other agency-sponsored roles, I look forward to what lies ahead in this special role by serving as an important ambassador for the agency and for the patient communities I represent.