Action Items:

1.) Sign up to receive our action alerts here: https://p2a.co/udfkjur
2.) 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
3.) 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 or Sarah Pilacik – sarahp@hemophiliasupport.org
4.) Patient Stories Needed for Pennsylvania Medicaid Pharmaceuticals & Therapeutics Committee
Meeting

We are looking for patient stories to illustrate why it’s important for doctors and their patients to have access to the full range of FDA approved products for treating bleeding disorders. The most powerful stories are about siblings who have the same bleeding disorder and also have the same biological mother AND the same biological father (in other words, they have similar DNA), but respond differently to different medications and require different medications to treat or
prevent their bleeds. In addition, stories from individuals who had responded well to a product for a long period of time and then had to switch products because the medication they had been using to treat or prevent their bleeds stopped being effective are also very important to illustrate the need for
access to all FDA approved bleeding disorder medications. Real stories from Pennsylvanian’s are needed to help advance our advocacy efforts. If you or
anyone in your family is or has been in either of the above situations, we would be grateful if
you would share your story with us. Please contact Kara Dornish – kara@wpbdf.org or Sarah Pilacik – sarahp@hemophiliasupport.org

Local Updates By Kerry Lange of Milliron and Goodman

The Pennsylvania General Assembly has four months remaining in the current 2021-22 legislative cycle. All introduced bills have until the end of November to get through the legislative process and onto the Governor’s desk. If a bill does not make it across the finish line, it’s effectively dead and will have to be
reintroduced in the following session.

BUDGET

A week past the June 30th constitutional deadline, the House and Senate passed the 2022-23 budget package and shortly after, the Governor signed his eighth and final budget into law. It is a $45.2 billion plan and a nearly 3% increase in spending from last year’s budget. Once again, we are
pleased to report that there are no increases in the state’s personal income or sales tax rates. While the plan relies on $2.2 billion in federal COVID dollars, Republicans put another $2.1 billion into the state’s Rainy-Day Fund, bringing the total balance up to $5 billion. Should the need arise, this level of funding
would cover the state’s general fund expenses for approximately 43 days.
Some expenditures of note:
• $375 million to assist low-income homeowners and landlords with home projects;
• $250 million in onetime payments for long-term care facilities;
• $260 million in grants for law enforcement agencies to upgrade technology and prosecute gun
violence; and
• $100 million for the new Behavioral Health Commission for Adult Mental Health (This is in
response to the uptick in gun related violence).

ELECTIONS

Governor Tom Wolf is completing his second term this year. On November 8th, Pennsylvanians will be voting for the new Governor of the Commonwealth.
On the Democratic side, Pennsylvania Attorney General Josh Shapiro is the official nominee. On the Republican side, Senator Doug Mastriano (R-Franklin) prevailed from a crowded primary race and is now the official nominee. According to recent polling, the gubernatorial race is a tight one. Josh Shapiro is leading by a slight margin at 44%; Mastriano at 40.2%.
In addition to the gubernatorial race, all House district seats are up for election as well as half of the Senate districts (even numbered districts). Republicans currently hold the majority in both the House (113-89) and Senate (29-21).

BUDGET LINE ITEM

We were able to secure a 6% increase in the hemophilia line item in the 2022-23 budget bill (SB 1100). In addition, we were able to insert language in the fiscal code (HB 1421) to maintain the current funding distribution. The 6% increase brings our line item up from $959,000 to $1,017,000. If you reached out to your local legislator to help make this request, please follow-up and thank them for their support. We’ve reached out to staff at the Department of Health to see when the funding will start to roll out to the treatment centers.

PRIOR AUTHORIZATION

SB 225 (Phillips-Hill, R-York): Amends Insurance Company Law of 1921 by:
o 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;
o Allowing one FDA-approved prescription drug classified as medication assisted treatment without initial prior authorization;
o Requiring insurers, MCO or contractors to establish a provider portal for electronic
submission of prior authorization;
o Requiring a list of all health services for which prior authorization is required to be posted on the insurer, MCO or contractor’s website;
o 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.
The bill passed out of the Senate with unanimous support and is waiting for consideration by the House Insurance Committee. We have been in touch with committee staff about the bill and they continue to request examples of prior authorization issues under fully insured plans.

National Updates by Matthew Delaney and Nathan Schaefer of NHF

  1. 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.
    a. Please use the following link to urge your Representative to support for H.R. 5801 today: https://p2a.co/7jWlBtF
  2. NHF responds to potential contraception bans: Following the June 24th Supreme Court decision overturning Roe v. Wade, NHF has reiterated our mission to ensure that the bleeding disorders community has access to the healthcare that they need.
    a. For the bleeding disorders community, safe and effective medical contraceptive tools
    can serve as a crucial aid to control bleeding and is one of many communities that may
    use these tools for medical purposes beyond reproductive rights.
    b. Read NHF’s statement here.
  3. NHF continues to monitor the reconciliation process in Congress. This situation is fluid, and we
    will provide updates as they arise.
  1. Join us in Houston for our 74th Annual Bleeding Disorders Conference from August 25th to August 27th, 2022.
    a. We will be holding our State-Based Advocacy Coalition Luncheon, in which Pennsylvania is a member, from 11:30am-1:30pm on Wednesday, August 24th. Representatives from Western and Eastern Pennsylvania chapters will be present.
    b. Other Public Policy sessions at BDC:
    i. “Washington Insider: A Federal Policy Update” – August 26th from 4pm to 5pm.
    ii. “Blood and Product Safety” – August 27th from 9am to 10am.
    iii. “Health Insurance in 2022” – August 27th from 11:30am to 12:30pm.
    iv. “Zeroing in on Patient Access Barriers” – August 27th from 3pm to 4pm.
  2. Pennsylvania Medicaid Pharmaceuticals & Therapeutics Committee Meeting
    a. On September 14th and 15th, Pennsylvania Medicaid’s Pharmaceuticals & Therapeutics (P&T) committee is reviewing a variety of hemophilia agents. If these products are moved to a “non-preferred” list, that could result in greater barriers to access.
    b. We want to hear from you! Please reach out to Kara Dornish or Sarah Pilacik with your story and why open access to these products are vital. You do not have to be a Medicaid recipient to share your story!
    c. Relevant stories may include: Two siblings or family members who do not respond to the same product, stories of prior authorization barriers, and experiences of not responding to a product.
    d. If you would like to share your story, please share with Kara or Sarah by Monday, August 22nd.

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