Advocacy

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

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

2.) Please take a moment to ask Senator Fetterman and Senator Casey to cosponsor S.1375 to protect patients by ensuring all co-pay assistance counts. https://p2a.co/xtXCYvj

3.) Urge your state senator to support Senate Bill 372, which would help Pennsylvanians afford the treatments they need by ensuring all co-pay assistance counts towards out-of-pocket requirements. https://admin.phone2action.com/8c1ew8l

4.) Congress is gearing up to move forward on a deal to address the looming debt ceiling crisis. There are concerns that the final deal will include harmful provisions that cut funding for and create new barriers to coverage and care under Medicaid, including calling for the implementation of so-called “work requirements.” Cutting or adding barriers to Medicaid would harm coverage for people with bleeding disorders and many others who rely on Medicaid to access necessary health care. Tell your lawmakers to protect Medicaid from harmful cuts and red tape! https://act.newmode.net/action/noredtape

Understand the Issues

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 others.

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.

UPDATES: On Monday, June 5, 2023, the House passed a General Appropriations budget vehicle, HB 611. Under the Department of Health’s budget, the hemophilia line item is proposed to be funded at: $1,250,000. The bill passed the House with a vote of 102-101 and was sent to the Senate.

On Friday, June 30, 2023, the Senate amended HB 611, the 2023-24 General Appropriations budget vehicle. The hemophilia line item was brought back to last year’s funding level at $1,017,000. The amended bill passed the Senate with a vote of 29-21. The bill will now go back to the House for its consideration. In addition, please note that none of the code bills (including the fiscal code) have been agreed upon yet.

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.

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.
Sponsored by Senators Kaine, Marshall, Markey, and Ernst, S. 1375 (identical to its House counterpart, H.R. 830) is bipartisan legislation that would prohibit copay accumulator adjusters. The bill would require health plans to count copay assistance towards a beneficiary’s deductible and out-of-pocket maximum.
A video from The AIDS Institute explains how copay accumulator adjustment policies harm vulnerable patients. Watch at https://www.youtube.com/watch?v=ChVoIRUcPks

End Copay Accumulators in Pennsylvania
- 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

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.