Advocacy

WPBDF serves people living with Hemophilia, von Willebrand Disease, and other rare bleeding disorders. Our service area includes 26 counties in Western PA. We provide education, advocacy, and many other services to help our members manage their disease and improve their quality of life.

Advocy

We Represent You!

Advocacy is a key component of the Foundation’s mission. Our overarching goal is to preserve access to care for our community members in Pennsylvania. As such, we are involved with budgetary, policy and legislative issues that arise in Harrisburg. We are strategically positioned to be proactive in our advocacy efforts, while also being nimble enough to react when needed.

Under the leadership of both the Western and Eastern PA Bleeding Disorders Foundations, a coalition was formed that includes the seven HTCs in the state, the National Hemophilia Foundation, the Hemophilia Federation of America, and Milliron & Goodman Government Relations. This collaborative group is proud to represent You!

We frequently have meetings with the Department of Health, The Department of Human Services, the Insurance Commissioner’s Office and the Governor’s Office. In addition, we have developed strong relationships with legislative offices in both the PA House and Senate. We also get proclamations and resolutions adopted to recognize Bleeding Disorders Awareness Month in March and World Hemophilia Day on April 17. Buildings and landmarks are lit in red across the state of PA. This is extremely rewarding work that benefits the entire bleeding disorders community.

Action Items

Sign up to receive our action alerts here: https://p2a.co/udfkjur

On March 6-8, 2024, advocates from Western Pennsylvania will be attending the National Bleeding Disorders Foundation's Washington Days. The National Bleeding Disorders Foundation's Washington Days is an opportunity for people affected by inherited blood disorders to advocate for issues that are important to them. We are looking forward to gather together in person with hundreds of volunteer advocates from across the United States to meet with legislators and staff to discuss issues important to our community such as federal funding for bleeding disorder programs and supporting policies that increase affordability of coverage, and access to care.

The issues at Washington Days 2024 will include:

  • Bleeding Disorders Awareness (March is our month!)
  • Federal Funding for Bleeding Disorders Program
  • S. 1375 / H.R. 830 "Help Ensure Lower Patient (HELP) Copays Act"
Action
Western

Understand the Issues

Budget Line Item

  • The funds appropriated for hemophilia services in the state budget are split among the 7 Hemophilia Treatment Centers in Pennsylvania and are used to support patient centered care including the Consumer Advisory Council, mental health support, unified care plans, and patient assistance.
  • In 2022, we were pleased to receive a 6% increase to the Hemophilia line item in state budget from $959,000 to $1,017,000 and language in the fiscal code to ensure these funds are distributed to all 7 Hemophilia Treatment Centers in Pennsylvania. Each year, we must continue our work to maintain this funding. 
  • We are very pleased to report that our advocacy work was successful again this year. The state appropriation for hemophilia services in the 2023-24 state budget is $1,017,000.

End Co-Pay Accumulators in Pennsylvania

    • SB 372 (Ward, R-Blair): Amends the Insurance Company Law by requiring insurers to count the drug manufacturers’ assistance program towards the deductible and out-of-pocket costs.
    • The bill was introduced and referred to the Senate Banking & Insurance Committee, where it currently waits for consideration.
    • Please note that the previous Executive Director for the Senate Banking & Insurance Committee recently resigned, and we are anticipating a new Executive Director shortly.
    • We are currently collaborating with the Immune Deficiency Foundation and their government relations team. We’ve agreed to divert from Representative Mary Isaacson (D-Philadelphia) to Representative Bridget Kosierowski (D-Lackawanna) for the introduction of companion bill in the House. Representative Kosierowski is a Registered Nurse and a member of the House Insurance Committee. We are prepared to circulate a letter of support once the bill is introduced.

Remember, you are your own best advocate. Let your voice be heard.
If you have any questions, would like to become an Advocacy Ambassador, or would like additional materials or information, please contact Kara Dornish, Executive Director at kara@wpbdf.org or 724-741-6160.

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