Western PA Bleeding Disorders Foundation

Making PA a better place for those with bleeding disorders.

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

  • Sign up to receive our action alerts here: https://p2a.co/udfkjur
  • HELP Copays Act HR 5801: We continue to look for additional co-sponsors for H.R.5801 (HELP Copays Act), addressing co-pay accumulator adjuster programs on the federal level. NHF has an action alert to directly send a request to your Representative to support this legislation. Please use the following link to urge your Representative to support for H.R. 5801 today: https://p2a.co/7jWlBtF
  • Patient Stories Needed to support HB 225 – Improve Prior Authorization and Fail First for Pennsylvanians If you have a fully insured plan and have experienced issues with prior authorization or step therapy, we would be grateful if you would share your story with us. Please contact Kara Dornish – kara@wpbdf.org

Understand the Issues

  • Maintain funding to all 7 Hemophilia Treatment Centers in Pennsylvania
    • On Friday, July 8th, Governor Tom Wolf signed the Pennsylvania state budget into law. We are very happy to report that we have secured a 6% increase to the hemophilia line item in the Pennsylvania state budget (from $959,000 to $1,017,000). In addition, fiscal code language has passed to ensure distribution among all 7 Hemophilia Treatment Centers in Pennsylvania!
    • 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.
    • This could not have happened without your help. Thank you to everyone who contacted your legislators and shared your stories of the importance of the Hemophilia Treatment Centers in Pennsylvania.
  • 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.
  • Not requiring prior authorization for emergency services, including testing and other diagnostic services that are medically necessary to evaluate or treat an emergency medical condition prior to the point at which the conditions are stabilized;
  • Allowing one FDA-approved prescription drug classified as medication assisted treatment without initial prior authorization;
  • Requiring insurers, MCO or contractors to establish a provider portal for electronic submission of prior authorization;
  • Requiring a list of all health services for which prior authorization is required to be posted on the insurer, MCO or contractor’s website;
  • Requiring medical policies that incorporate step therapy for prescription drugs to be reviewed in accordance with the standards set forth in prior authorization review; The review shall also take into consideration the enrollee’s individualized clinical condition with  respect to contraindications, clinical effectiveness or ineffectiveness of the required prerequisite prescription drugs, past clinical outcomes, expected clinical outcomes of the prescribed prescription drug and, for new enrollees, whether the enrollee has already satisfied a step therapy protocol with their previous health plan that required trials of drugs similar to those currently required in a step therapy protocol.

 

How to Help

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@wpbdf.org or 724-741-6160.