Advocacy Update
March 2020
Harrisburg Day has been cancelled due to the Coronavirus (COVID-19).

There are still ways you can make an impact!

Our primary concern is, and has always been, the health and wellness of the people and community we serve.We appreciate your understanding during a very dynamic situation. We will be in touch in the coming months with updates on when we can start to schedule home office visits with legislators.

Resources to Download:
Include these resources with your letters to legislators and have on hand during your calls.

Let us know how it went. Be sure to let us know the results of your call and if you sent a letter. The more details you can provide us with the better. Please email or call us at 724-741-6160 and let us know.
Local Issues
The Specialty Care Programs funds have been distributed in previous years through a state procurement process known as a Sole Source request. This ensured that if the hemophilia line item was in the state budget, all 7 hemophilia treatment centers in Pennsylvania received state funding. This will end on June 30, 2020. In its place is a new grant process called Request for Applications (RFAs). The RFAs will use a regional approach, based the on the  Pennsylvania HealthChoices five regions .

Problems with this model:
  • There are 7 federally supported hemophilia treatment centers (HTCs) but only 5 HealthyChoices regions, with 4 HTCs located in Philadelphia.
  • While applicants may apply for multiple regions, having only one grant awarded per region is problematic when four world class HTCs are in one region (Philadelphia). As proposed, the four HTCs in Philadelphia will be pitted against each other competing for funding.
  • When we voiced this concern in the meeting with the Department of Health they told us they expect the Treatment Centers to team up to apply for funding. But this only creates more problems as who will be responsible for the administrative burden and how will the funding be divided between them?

This one-size fits all approach that the Department of Health is requiring for all specialty care programs clearly doesn’t work for hemophilia and will only jeopardize our HTCs funding. Lost funding can result in staff positions being eliminated which will result in loss of comprehensive care.

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.
Federal Issues
On February 27th over 450 advocates from all across the United States went to Washington DC to meet with legislators and staff to discuss federal funding for bleeding disorder programs and access to Skilled Nursing Facilities (SNFs). Twelve (12) advocates from Pennsylvania attended nine (9) meetings with legislators and/or their staff. Our advocates from Pennsylvania included: Janet Barone, Kara Dornish, Lindsay Frei, Matthew Hiller, Lenore Hiller, Heather Kosto, Christopher Templin, Curt Krouse, Scott Miller, Jessica Lee, Marty Tully, and Joe Pugliese.
Federal Bleeding Disorders Programs

We ask Congress to support these programs:

  • National Institutes of Health (NIH): Fund biomedical research on bleeding disorders. NIH is working to implement a national blueprint for research on inhibitor prevention and eradication.

  • Centers for Disease Control and Prevention (CDC): Funds HTC surveillance and prevention activities, and supports outreach and education programs provided by national bleeding disorders patient organizations.

  • Health Resources and Services Administration (HRSA): Provides funding for HTCs to provide multi-disciplinary services not typically covered by insurance, such as PT and social work services. Also, as HRSA grantees, most HTCs participate in the 340B Drug Discount Program, which offers comprehensive care offered to all of their patients.
Hemophilia SNF Access Act

The Problem:
  • People with bleeding disorders may need access to skilled nursing facilities (SNFs) after a hospitalization related to surgery for joint disease or a co-morbidity like HIV or hepatitis. Their doctor thinks it is the best setting for them to access nursing care to help them recover more quickly.
  • SNFs typically won't accept Medicare beneficiaries with bleeding disorders because the daily payment isn't high enough to cover treatment costs. Treatment costs could be as high as $10,000 per day right after surgery.
  • There are about 1,000 people on Medicare and a much smaller number need access to SNF care each year.
  • People who can't access SNFs often stay in the hospital longer - costing Medicare and taxpayers more money - or may go home where their families are unable to properly care for them and then often return to the hospital.

The Solution:
  • The Hemophilia SNF Access Act adds bleeding disorders treatments to the list of high cost, uncommon services that SNFs may separately bill for under Medicare Part B.
  • This change to the Medicare law will allow people with bleeding disorders to receive care in SNFs, often the most medically-appropriate rehabilitative setting.
  • This bill will not increase Medicare costs as the policy is budget neutral.

The Ask:
  • Senate: Please co-sponsor S. 3233, The Hemophilia SNF Access Act. Current Sponsors: Senators Menendez (D-NJ), Eniz (R-WY), and Whitehouse (D-RI).
  • House: Please co-sponsor HR 5952, The Hemophilia SNF Access Act. Current Sponsors: Representatives Dingell (D-MI), LaHood (R-IL), and Bilirakis (R-FL).