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.

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.

Hemophilia Line Item:

The line-item funding goes to each of the seven hemophilia treatment centers (HTCs) for direct patient care, not research. HTCs provide comprehensive care via specially trained multi-disciplinary teams that include hematologists, pediatricians, nurses, social workers, and physical therapists, among other healthcare providers and services. Studies conducted by the Center for Disease Control (CDC) 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, providing an excellent return on investment.

• 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. 

On Thursday, July 11th, the 2024-25 budget package was passed by the House and Senate. Shortly after, the Governor signed the budget package into law.

The General Appropriations bill (SB 1001) fully funds the hemophilia line item under the Department of Health at $1,017,000. It was also separated out from the other rare disease line items. In addition, our requested fiscal code language was also included under the Department of Health section in HB 2310.   

Menstrual Product Access:

Period Poverty can be defined as the lack of access to menstrual products. The lack of this necessity results in an issue of public and personal health, dignity, and wellbeing. These products are especially critical for women, girls, and persons with the potential to menstruate affected by bleeding disorders, because symptoms for this population include abnormal, excessive bleeding during their menstrual cycle. These prolonged periods may cause a patient to struggle financially with the costs associated with purchasing sanitary products. This bill would require the Pennsylvania Department of Human Services to apply for a waiver if the U.S. Department of Agriculture’s Food and Nutrition Service creates and makes a waiver available to the states that would allow those receiving SNAP and WIC to use those programs for menstrual hygiene products.

Ask State Senators to support SB 1016, to help end period poverty in Pennsylvania.

Copay Accumulators

Many individuals with bleeding disorders rely on copay assistance to access their high-cost medication. Over the past several years, many Pennsylvanians have had insurance companies institute copay accumulator and maximizer programs on federally regulated plans. This does 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. We want to be proactive and ensure this does not occur in marketplace and state regulated plans.

Ask State Senators to support SB 372, to proactively 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.

• 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.

Ask State Representatives to support a companion bill in the House to proactively 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.

• 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.