-by Meredith Wolfe
I advocate because Hemophilia has been a part of my life since my brother was born when I was nine years old. I learned the importance of advocacy as a child, watching my mother advocate for a safe blood supply in the 80s. Today, as a mother of a 17-year-old with severe Hemophilia A, I am motivated by him and by the advocacy of the previous generations that created so many protections for the bleeding disorders community. Last year my son and I advocated together during Legislative Day on March 18th in Sacramento, and it was such a great experience that when we heard about Fall Advocacy Days and the chance to meet in our local representative’s office, we did not hesitate to sign up.
We met in Eureka with Senator Mike McGuire’s staff. My son Paul shared about what it is like to live with a bleeding disorder. We talked about the importance of access to medication and how schemes like copay accumulator adjustors threaten access to the expensive medications that people in the bleeding disorders community rely on. We talked about how this leads to higher costs from not being able to prevent or treat bleeds, in the form of avoidable emergency room visits, and the long-term health impacts of not being able to stay physically active.
Our remote and rural location on the far north coast brings additional concerns that we shared with our senator’s office, such as local emergency rooms not having factor in stock, and our distance to Hemophilia Treatment Centers (HTCs). In Eureka and Humboldt County, people with bleeding disorders have to travel five or more hours by car to get to the closest Hemophilia Treatment Center. We shared ways to address our unique rural concerns, such as ensuring factor is available in the emergency department, ensuring local paramedics are educated on the “30-minute protocol,” educating primary care providers on identifying people with potentially undiagnosed bleeding disorders, and possibly even starting a quarterly or bi-annual HTC outreach clinic in the Eureka area.
The Hemophilia Council of California does a great job preparing and supporting advocates to do this important work. I am grateful to have this supportive structure in which I can help to amplify the voice of the bleeding disorders community by reaching out to all of our legislative representatives right here in my home town.
