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Advocacy Avenue



Advocacy Update

By Curt Krouse, Executive Director


Advocacy cuts to the very heart of what we do as a Chapter. To date, 2017 has proven to be an incredibly active year, and I thank all of you who have stepped up to broaden our reach and amplify our voice in Harrisburg and in Washington, DC. We need to tackle challenges as a community and if we do this, we’ll find ourselves having a far greater impact.


In Pennsylvania, we are fortunate to have a long-standing line-item in the Commonwealth’s budget that supports care at the Hemophilia Treatment Centers. While over the years the total amount has lessened, the dollars provide tremendous assistance to services at the HTCs. We’ve successfully defended this line item every year, however, this year we faced our greatest test.


As the Governor and General Assembly sought to find dollars to fill a gap in the budget, risk to our small line-item grew. Different versions of the budget treated it in different ways, including one budget version that completely eliminated the funding. We were stunned at this, but as a coalition, with the Western PA Chapter of the National Hemophilia Foundation and our PA HTC network, we worked hard to re-educate members of the General Assembly and the Governor’s office on the importance of the line-item, the care it supports, and the benefits our HTCs provide.


Through your voices, at the Harrisburg Advocacy Day and in follow up with your members of the legislature, we were successful in having it funded in the final spending package that was passed in July. The $959,000 line-item in the budget reflected the same level of funding as the Commonwealth’s 2016-17 budget. This was no small feat, and due to the combined efforts of our community, we were successful.


I should note that the Commonwealth’s budget process is not yet complete. While a spending bill was passed in July, Legislators and the Governor are working this September to finalize the “revenue” side of the budget. We don’t anticipate that any changes will impact our line-item, but we are remaining vigilant and we will call on you if additional advocacy is needed.


One thing this process taught us is that it’s important for all members of our community to connect with those who represent us in Harrisburg and Washington, DC. That personal connection with legislators makes a difference when we need to mobilize as a community.


We saw this in action in Washington, DC over the past months as “Repeal and Replace” of the Affordable Care Act was debated. Our national organizations—NHF and HFA—worked so hard to organize our efforts, but ultimately it took the members of our community showing up to be heard that had the impact needed to protect the provisions that our so important to us.


As we move forward, please feel free to contact me with any issues that affect your access to care. I also hope to see many more of you at events and legislative days where we can share our stories and develop relationships. We are 41 proud counties that make up one incredibly strong Chapter. Our collective voice matters.


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