Sickle Cell Advocacy Day

As part of my graduate student hourly work position with the Children’s Sickle Cell Foundation, I recently had the opportunity to go to Harrisburg for Pennsylvania Sickle Cell Advocacy Day. Advocacy Day is a day that is designated for advocates, healthcare professionals, and those living with sickle cell disease to come together at the Capitol Building to help educate policy makers on why funding for sickle cell disease is so important. As part of House Resolution 888, the designated day this year was May 17, 2016 as proposed by Representative Wheatley of District 19. It was a wonderful opportunity to get a better understanding of health policy, and the difference that advocating can make not only on the policy makers, but also on individuals who are affected by sickle cell disease. Advocacy Day allowed those Living Well with Sickle Cell® to share their stories with others who are living with sickle cell disease, those who support individuals living with this disease, and the policy makers who influence the funding for research of this disease. The funding for sickle cell disease has recently been cut from $2.6 million to $1.2 million as part of the $32 billion Pennsylvania state budget. The money provided from the budget goes to research, educating doctors and patients about the best and most effective treatment options, and other organizations working to help individuals living with sickle cell disease.

The Children’s Sickle Cell Foundation came together to advocate for sickle cell disease with other organizations across the state including the Sickle Cell Disease Association of America, Philadelphia Chapter and the South Central PA Sickle Cell Council, and people who are participants in these programs and currently Living Well With Sickle Cell® as well as their family members. The Advocacy Day began with a press conference where directors from the different programs, local representatives from Pittsburgh and Philadelphia, health care professionals and a few individuals living with sickle cell disease spoke about personal experiences with this disease and how to best advocate to secure the proper funding and support. The local representatives who spoke on behalf of Allegheny County were Rep. Jake Wheatley and Rep. Ed Gainey along with the Executive Director of the Children’s Sickle Cell Foundation, Michael Matthews, as well as Dr. Laura DeCastro, one of the hematologists who provides medical care for individuals with sickle cell disease in Pittsburgh. Afterwards, both of the Representatives gave us a tour of the Capitol Building. While there, we had the pleasure of meeting with the Pennsylvania Legislative Black Caucus to address the issue of the funding for sickle cell disease from the State as part of the budget. In this meeting, some of those who are Living Well with Sickle Cell® were able to share their stories. One incredible young man who is only 17 years old presented a documentary that he created about sickle cell disease and the challenges faced each day by those living with the disease. Overall, participating in Advocacy Day in Harrisburg seemed to be a positive experience for all those who were involved, and I found it especially inspirational to see everyone supporting one another in their individual struggles with sickle cell disease.

- Brooke Hornak, Class of 2017