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Copyright 2019 Sickle Cycle

advocacy in the keystone state

May 25, 2017

 

This past Tuesday, I had the opportunity to join the Sickle Cell Disease Association of America Philadelphia/Delaware Valley Chapter at the PA Supports Sickle Cell Advocacy Day 2017 in Harrisburg, PA. It was a busy day as we met with legislators and their staff to advocate for funding and resources for Sickle Cell Disease. 

 

The meetings were productive and I learned a lot about the various issues impacting the SCD community, particularly in Pennsylvania. There are approximately 5,000 people living with the disease in Pennsylvania but unfortunately, data is not consistently updated, which is part of a larger problem. If you are wondering how data impacts policy, it's simple. Data provides truth to where there is uncertainty. If legislators do not understand the impact of budget cuts on a particular issue, then guess what? There will be more cuts until that particular line item agenda receives zero funding. An example of this is government funding. The funding for SCD was reduced from $2.7 million in 2007 to $1.26, a decline of $1.5 million in 10 years. This drastic cut of funding has resulted in a lack of medical services for patients and their families at community-based organizations, hospitals, and medical treatment centers.

 

Funding is an issue in the SCD community, but I believe, the immediate challenge is education. Generally, people do not understand Sickle Cell Disease and the lack of information is causing premature deaths. We need to discuss that it is an inherited blood disorder that causes chronic panic, stroke, acute chest syndrome, and organ damage. We need to discuss that this disease is a global disease that impacts a large percentage of African Americans, but also Asians, Latinos, Indians, and Caucasians. Advocacy Day

provided an opportunity for me to engage with others that are personally and/or professionally impacted by the disease but we need more of these conversations in schools, hospitals, and religious institutions.

 

The best part of advocacy day was listening to the various perspectives in the SCD community. Parents discussed the difficulty of managing work, insurance cost, and the emotional aspect of caring for a child with the disease. Medical practitioners discussed the transition from pediatric to adult care, and writing prescriptions for pain medicine especially during these times of the opioid epidemic. All of these perspectives are important because it gives a holistic approach to the challenges within the SCD community. If we all take time to listen and learn, we will be in a better position to take action to support those that need it the most.

 

This was my first time participating in Advocacy Day and it will not be my last. I hope my experience will inspire you to get involve in the SCD community, participate in a future Advocacy Day or create your own event to bring awareness to the disease.

 

With love,

 

Charlotte

 

 

 

 

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