Adam Alver, Policy Director
The Passage of the “Big Beautiful Bill”
As we recently discussed during our August 6 Organizing Call, HR 1, or the “One Big Beautiful Bill Act,” (OBBBA) was signed into law by President Trump on July 4. It was a massive bill that will have wide-ranging effects on American healthcare through its many changes to Medicare, Medicaid, and the Affordable Care Act. While most impacts take effect after 2025, two significant changes took place immediately on July 4 related to medical providers that engage in family planning services and the enhanced premium tax credit (ePTC).
First is a ban on federal funding under Medicaid for providers that engage in family planning or abortion services. While this provision is already in an ongoing lawsuit and may be overturned, we see a potential risk to the women in our community who use contraceptives to manage their menstrual bleeding and who may visit these providers to fill their prescriptions. The bottom line is that if you’re getting healthcare services in a clinic that provides family planning services, your care could be interrupted. HFA recommends that you check with your provider to ensure you have what you need through the end of this year.
Second, the ePTCs which have helped millions of Americans afford coverage under Marketplace plans, must be re-enacted by Congress or they will expire – the current deadline is December 31st, 2025. If you’re getting healthcare coverage through the marketplace (healthcare.gov), your plan may be out of reach next year due to the increased cost of premiums, and you may need to seek health coverage elsewhere or be prepared to pay more each month under the same plan you’ve used previously.
Work Requirements and Bleeding Disorders
The OBBBA also included the creation of “Community Engagement Requirements,” otherwise known as “Work Requirements.” This provision requires enrollees who are “able-bodied adults” engage in and report 20 hours of work, education, or other “community engagement” weekly. Guidance will be issued on these requirements by the Secretary of Health and Human Services (HHS) by June of 2026, and states must implement their own policies beginning in January of 2027. However, states may choose to implement these policies earlier than 2027 and may also request extensions, though there is no guarantee an extension will be granted.
HFA is concerned that bleeding disorder patients will be included in these requirements due to poor understanding of the reality of life with a bleeding disorder. Patients may appear “able-bodied,” but could easily lose the ability to work, go to school, or find a job due to an unforeseen bleeding event. Coupled with other provisions in the OBBBA that make it harder to stay eligible for Medicaid, losing coverage or treatment could prevent a patient from becoming covered again in the future. Unfortunately, we won’t know the full extent of the impacts until these requirements go into effect.
Over the coming five years there are additional provisions which will compound the difficulties in getting access to coverage and treatment:
- (2027) Medicaid enrollees will need to verify their eligibility every 6 months instead of once per year, meaning if you’re getting healthcare through Medicaid but you are not disabled, you could get dropped without other options;
- (2027) People who fail to meet Medicaid work reporting requirements will become ineligible to obtain premium tax credits and other cost reductions under Marketplace plans; and,
- (2028) Passive re-enrollment in both premium tax credits and marketplace plans will end, and patients will need to manually re-enroll in their plans or lose their existing coverage.
We’ve included a timeline below of what HFA believes to be the most significant provisions affecting bleeding disorder patients, although this does not include the full list of provisions within the OBBBA.
| What Year? | Where in Healthcare? | What’s the Provision? | When is it Effective? | What’s the Impact? |
| 2025 | Medicaid, Medicare | 9 year pause on Medicare, Medicaid, CHIP, and other rules. | Immediately (July 4th) | Slower enrollment and harder eligibility determinations. |
| Medicaid | One year federal funding block for specified family planning and abortion service providers. | Immediately (July 4th) | Patients, particularly women and girls, could lose access to care. | |
| Rural Hospitals | $50B in Rural Provider Relief Fund awards will be available for state use from 2026-2030 | December 31st | Potentially maintained rural hospitals but with reduced capacity. | |
| Affordable Care Act | Enhanced Premium Tax Credits expire | December 31st | Increased premium costs for patients on Marketplace plans. | |
| 2026 | Affordable Care Act | Income-based special enrollment periods no longer allow premium tax credits or cost sharing reductions. | January 1st | Patients with low incomes will have more expensive care |
| Affordable Care Act | Ineligibility for premium tax credits for those who did not file taxes or reconcile tax credits for the prior year, recapture of excess tax credits | January 1st | Patients with low incomes or who fail to meet tax requirements will have more expensive coverage | |
| Medicaid | HHS Secretary must create guidance on community engagement requirements | June 1st | Bleeding Disorders patients may face work reporting requirements | |
| 2027 | Medicaid | Required 6-month eligibility determinations Medicaid expansion population. | January 1st | Increased eligibility reporting |
| Medicaid | States must establish community engagement requirements (work reporting requirements). | January 1st | Bleeding disorders patients may be swept up in “able-bodied” definitions because of poor understanding | |
| Medicaid, Affordable Care Act | Failure to meet Medicaid work reporting eligibility prevents eligibility to receive PTC or cost reductions on marketplace plans | January 1st | Failing to meet work reporting requirements for Medicaid will prevent a person from receiving upfront tax credits and reduced costs | |
| Medicaid | Retroactive coverage is reduced to two months for traditional Medicaid and one month for the expansion population. | January 1st | Parents or patients with bleeding disorders may not have back-dated Medicaid coverage if not completed in time | |
| 2028 | Affordable Care Act | Passive enrollment and provisional eligibility for Premium Tax Credits ends | January 1st | Patients will no longer have continued eligibility each year for premium tax credits or cost-sharing reductions |
| Affordable Care Act | Passive Marketplace plan reenrollment ends; all must reverify eligibility annually. | January 1st | Patients will no longer automatically continue being enrolled in coverage | |
| Medicaid | Home equity value limit is set at $1M for long-term care eligibility. | January 1st | Elderly patients with assets over $1M but without steady incomes may lose eligibility. | |
| Medicaid | State required cost-sharing on certain services for those above 100% FPL. | October 1st | All patients on Medicaid will begin paying copays if they are above the federal poverty line | |
| 2029 | Medicaid | States must submit enrollee Social Security numbers and verify addresses to end multi-state enrollment | October 1st | Patient social security information will be shared, and patients will face increased address verification requirements. |
Download “The One Big Beautiful Bill Act Timeline”
Despite the changes, one advantage of the timeline for these changes is that they will allow the bleeding disorders community to advocate for their needs and make their voices heard. HFA remains committed to advancing the needs of the community, and it is more important than ever to remember that if you agree healthcare is critical for bleeding disorders, you need to speak up about how you get health insurance and what happens if you go without.
What Our Community Did and Why it Mattered
For months, the bleeding disorders community has sent emails, calls, attended in-person meetings with lawmakers and staff in their district offices, and engaged with HFA and other partners like the National Bleeding Disorders Foundation, Hemophilia Alliance and Coalition for Hemophilia B to reduce the worst impacts of this legislation. To date, members of the bleeding disorders community independently, with HFA Member Organizations and through HFA’s Advocacy Network have taken the following steps to make Congress aware of the risks that loss of coverage, care, and treatment can have:
- 41 direct emails, 42 calls to representative offices, 2 town hall events attended, and 10 in-district meetings with members of congress as reported by our Advocacy Report Back Form,
- 852 advocacy alert emails regarding Medicaid and Marketplace subsidies,
- 285 advocacy alert emails for protecting Medicaid as part of joint effort with our national partners,
- 275 community members joining our rapid mobilization call to protect the CDC’s Division of Blood Disorders and Public Health Genomics,
- 235 advocacy alert emails asking to protect funding for bleeding disorders and HIV/AIDS programs,
- 203 advocacy alert emails on EPTC’s (enhanced premium tax credits)
HFA has also hosted multiple organizing calls with hundreds of patients, family, friends, and national partners to educate the community on the current issues, discuss next actions, and remind the community that it’s always important to stay engaged with lawmakers so that people with bleeding disorders are protected and receive the proper treatment they need to live full and healthy lives.
While many difficult changes are coming in the next few years for health insurance and access to care and coverage, we want to highlight some of the items that did not pass through your combined efforts and in resonance with millions of other Americans across the country who spoke up for their needs:
- Reductions in payments to Disproportionate Share Hospitals that serve large numbers of low-income, unemployed, and Medicaid patients,
- Elimination of the year-round income-based special enrollment period for Marketplace plans,
- Shortening the open enrollment period by one month for marketplace plans, and
- Allowing insurers to prevent coverage from going into effect if premiums and/or past due balances have not been paid in advance.
The harmful provisions of this bill may outweigh the items left out, but it’s still important to acknowledge that without continued advocacy and conversations with lawmakers, the impacts could have been worse. We sincerely thank all members of the community who continue to take part in our combined advocacy efforts and organizing calls to help ensure that people with bleeding disorders are protected.
What’s Next for Our Community
With all the changes that have happened over the past several months, it’s more important than ever that members of the community come together to advocate for their needs and for the systems and programs that benefit patients with bleeding disorders. If you agree that healthcare is critical for bleeding disorders, you need to develop a relationship with your lawmakers to speak up about how you get treatment and care, and what happens if you go without.
Your Role in Our Continued Work
HFA’s efforts need amplification from your stories to protect and empower the entire bleeding disorders community. Raise your voice to be heard with HFA today by:
- Joining HFA’s Advocacy Network
- Protect Access to Life-Saving Care—Tell Congress to Extend the Enhanced PTC!
Also, be sure to stay up to date with our next Word from Washington post and State of the States posts, and encourage your friends, family, and local bleeding disorders chapter to support us in this work!
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