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

Understand the Issues

• • The HELP Copays Act (H.R. 830) has been introduced. If passed, this bill will protect people from having to sacrifice their health when they cannot afford critical medications due to copay assistance adjustment policies that prioritize profits over patients.
    A new video from The AIDS Institute explains how copay accumulator adjustment policies harm vulnerable patients. Watch at https://www.youtube.com/watch?v=ChVoIRUcPks

• Maintain funding to all 7 Hemophilia Treatment Centers in Pennsylvania
  • We are asking the PA General Assembly to:
    • Keep the Hemophilia Program as a separate line item
    • Increase the fiscal year amount from $1,017,000 to $1,250,000
    • Keep the distribution of funds, as in previous years, to all seven-state supported hemophilia treatment centers.

• •  HTCs provide comprehensive care via specially trained multi-disciplinary teams that include hematologists, pediatricians, nurses, social workers, physical therapists, among other.
  •  CDC studies demonstrate a 40% reduction in mortality and medical complications in patients who receive their care at an HTC compared with those followed by hematologists outside of this network. The overall costs of care are reduced as well.

• End Copay Accumulators in Pennsylvania
  • Many individuals with bleeding disorders rely on copay assistance to access their high-cost medication. Over the past several years, many insurance companies have instituted copay accumulator and maximizer programs, which do not allow copay assistance to count toward deductibles or out-of-pocket maximums, as it traditionally has. Copay accumulator programs allow health insurers and pharmacy benefit managers to take the benefit of the copay assistance rather than passing it on to consumers, as it was intended.
  • Ask State Senators to support SB 372 to protect Pennsylvanians in state-regulated health plans by clarifying that all payments made by the patient or on behalf of the patient count toward the patient’s deductible and OOP costs.

How to Help

• Become an Advocacy Ambassador
• Sign up to Receive Action Alerts 
• Get to know your Legislators
• Vote on Election Day

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.