Federal:
Funding for Fiscal Year 2027
Trying to prevent a fight over federal spending and potential partial government shutdown before the mid-term election, the House passed a continuing resolution (CR) to fund the government at current levels from the October 1 start of fiscal year 2027 through December 4. The Senate is taking a different approach, seeking to pass a CR to level-fund most government programs through December 11 and making additional policy changes, as well. The Senate bill would also prevent a controversial new rule about government grants from taking effect before December. If each chamber passes different versions, one or the other will have to accept the other’s bill in September.
House Passes Budget Resolution
On July 22, the House of Representatives passed a Fiscal Year (FY) 2027 budget resolution for a third reconciliation package. The resolution provides budget instructions for House committees overseeing many government programs (e.g., defense, intelligence, and agriculture) – but it provides no instructions to the committees with jurisdiction over health insurance, Medicaid, or Medicare (Energy and Commerce Committee and Ways and Means). As a result, the budget resolution does not directly affect federal health policy. The bill now goes to the Senate, where its passage is unclear. If it passes, then Congress needs to separately write and pass the bill. Some in Congress are pushing for a fourth reconciliation package this Congress to tackle issues related to fraud, waste, and abuse in health care programs but there likely won’t be sufficient time to pursue another bill.
More on Medicaid Work Requirements
As previously reported, the U.S. Centers for Medicare and Medicaid Services (CMS) released guidance for States in June on how to implement the work reporting requirements that are coming for many adult Medicaid expansion enrollees. That CMS guidance (an “interim final rule” or IFR) was open for public comment until July 31. NBDF joined the Hemophilia Alliance and other bleeding disorders partners to file comments focusing on the IFR’s unduly narrow exemptions for people with “serious or complex medical conditions.” Bleeding disorders are undeniably “serious or complex” and the loss of coverage for people living with these conditions would have devastating consequences for their health. The comment letter urges CMS to revise its policy to guard against such outcomes. NBDF also signed onto coalition comments submitted by the Partnership to Protect Coverage, discussing additional aspects of the IFR.
340B Reform Efforts
Hemophilia treatment centers are original “covered entities” eligible to participate in the 340B Drug Pricing Program. As such, HTCs may purchase clotting factor and other bleeding disorder medications at discounted pricing, and may dispense those medications to patients, earning program income that supports patient services. The 340B program provides critical support for HTC delivery of comprehensive care.
Over the years, Congress has periodically taken up the issue of 340B reform, often focusing on perceived abuses of the program by hospitals and other non-HTC covered entities. This summer, Congress’s interest in 340B reform took an upswing. Senator Cassidy, outgoing Chairman of the Senate Committee on Health, Education, Labor and Pensions, released draft 340B legislation. On the House side, four lawmakers have introduced their own bill: H.R. 9599, the “SECURE 340B Act.” A Senate “gang of 6” has also been working on a proposed bill and may decide to release their draft this summer.
NBDF will continue to monitor these bills and weigh in, as appropriate, to educate lawmakers about how HTCs use 340B, the unique characteristics of HTC 340Bs, and the importance of maintaining HTC ability to participate in the program.
NBDF Responds to HHS Essential Health Benefits Request for Information
NBDF joined the Hemophilia Alliance in a comment letter responding to the Department of Health and Human Services’ Request for Information (RFI) on Essential Health Benefits (EHB). The letter is comprehensive and focuses on the importance of the patient protections put in place by the Affordable Care Act – such as the elimination of annual or lifetime limits on covered services – which are now considered to be the baseline expectation for how health care coverage should work. NBDF and HA urge HHS and CMS to recognize the importance of robust EHB and caution against any changes that would water down or weaken EHB requirements as this would have significant impact on patient access and financial security but also on marketplace stability.
NBDF also joined a letter led by the All Copays Count Coalition in response to the RFI. This letter focused on the impact copay accumulator adjustor programs and copay maximizers have on individuals living with serious and chronic diseases.
Senate Confirms New CDC Director
On August 5, the Senate confirmed Dr. Erica Schwartz as director of the Centers for Disease Control and Prevention, the agency’s first full-time leader in almost a year. Dr. Schwartz spent the bulk of her career in a variety of positions, including as the Coast Guard’s preventive medicine chief and as a retired rear admiral of the U.S. Public Health Service Commissioned Corps. She served as US deputy surgeon general during the first Trump Administration. She is viewed as a qualified, traditional choice who both has praised vaccines as a cornerstone of prevention as well as the virtues of a healthy diet and exercise. The CDC has been without a permanent director since August 2025. There is hope that the agency will regain some stability with a new, full-time leader.
State:
California: The All Copays Count Coalition sent a letter July 27 to SB 1199 sponsor Sen. Weber-Pierson requesting changes to the bill that was recently passed by the Assembly Health Committee to remove a potential barrier to copay assistance being counted toward a patient’s cost-sharing obligation.
Pennsylvania: Governor Josh Shapiro signed the FY 2026-2027 budget, which included nearly $1.2 million in support for HTC access services in the Commonwealth. Both Eastern and Western PA Bleeding Disorders Foundations alongside NBDF advocated for HTC services in Harrisburg this year.
Unfortunately, HB 2226, the Commonwealth’s copay accumulator legislation, was amended to include maximizer language in the House Insurance Committee. NBDF does not support the bill in its current form but will continue to engage legislators on the issue.
New Mexico: The New Mexico Health Care Authority implemented a Preferred Drug List on July 1. This is a list of preferred drugs available to all Medicaid members. The new PDL does not include bleeding disorders therapies.
Oregon: The Oregon Health Authority (Medicaid) is recruiting for six open positions on the Beneficiary Advisory Council (BAC). All positions would start in September 2026. The BAC is a group where people with Medicaid can share their thoughts and ideas with the Oregon Health Authority (OHA). It gives advice to the Medicaid Advisory Committee (MAC) and to OHA about how to improve the Medicaid program in Oregon. To apply, visit this page: Oregon Health Authority (OHA): Beneficiary Advisory Council (BAC) New Member Application
