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.
Understand the Issues
- Maintain funding to all 7 Hemophilia Treatment Centers in Pennsylvania
- We are asking the General Assembly to keep the Hemophilia Program as a separate line item at the current fiscal year amount of $959,000. In addition, we request that the funding continue to be distributed, as in previous years, to all seven hemophilia treatment centers in Pennsylvania.
- Update: The Pennsylvania General Assembly passed the budget and fiscal code bills on June 28th, 2021 and Governor Wolf signed them into law on June 30th, 2021. We are happy to let you know the Pennsylvania budget has passed with hemophilia fully funded at $959,000. In addition, the language in the fiscal code reads as follows: “FUNDS APPROPRIATED FOR HEMOPHILIA SERVICES SHALL BE DISTRIBUTED TO GRANTEES IN THE SAME PROPORTION AS DISTRIBUTED IN FISCAL YEAR 2019-2020.” This ensures hemophilia funding in the budget must be distributed to the 7 Hemophilia Treatment Centers in the same way it was last fiscal year and not based on a regional approach.
- End Co-Pay Accumulators in Pennsylvania
- Several states have already eliminated accumulator programs, and we are working to eliminate them in Pennsylvania. Bipartisan legislation has been introduced that would protect patients from having their prescription drug co-pay assistance programs undercut by their health insurer or pharmacy benefit managers. Introduced by Reps. Barbara Gleim (R-Cumberland County) and Mark Longietti (D-Mercer County), HB 1664 along with Senate Bill 196, would eliminate co-pay accumulator programs statewide.
- Improve Prior Authorization and Fail First for Pennsylvanians
- SB 225: Amends the Insurance Company Law by including a standard definition of prior
authorization. It will also significantly streamline the process by requiring insurers
to make available an electronic communications network that permits prior authorization requests to be submitted electronically, and authorizations and adverse determinations to likewise be returned electronically. - Update: On June 23, 2021, SB 225, as amended, passed unanimously out of the
Senate Banking and Insurance Committee. Thank you to the members of the Senate Banking & Insurance Committee for helping us take this important step forward. Please urge your legislators to continue this progress when the bill is up for a vote in the full Senate.
- SB 225: Amends the Insurance Company Law by including a standard definition of prior
What YOU Can Do To Help
- Become an Advocacy Ambassador
- Sign up to Receive Action Alerts
- Get to know your Legislators
- Vote on Election Day
Senator Haywood on the Do’s and Don’ts of Citizen Advocacy
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@wpcnhf.org or 724-741-6160.
