Start Here: The Short Version
A 2025 federal law, P.L. 119-21 (H.R. 1, often called the “One Big Beautiful Bill Act”), adds new Medicaid rules for many adults. The biggest one is a work or “community engagement” requirement that starts January 1, 2027 in most states that expanded Medicaid.[1]
Medicaid is the largest source of health coverage for people living with HIV. About 46% of people with HIV had Medicaid in 2023.[2] So these rules matter for a lot of our community. Here is what to know first:
If you get Medicaid through SSI or disability, pregnancy, or as a parent in a non-expansion state, this rule generally does not apply to you on that basis. See Who It Applies To.
Florida never expanded Medicaid. Other parts of the law still affect Floridians. See Florida In Focus.
On October 29, 2026, a federal judge struck down a CMS rule that made it harder for people with serious health conditions to qualify as “medically frail.” See HIV & the Medically Frail Exemption.
In Nebraska, the first state to start, most people who lost coverage did so because they did not answer a request for information. Very few were found to not be working.[3] Opening your mail is part of protecting your care.
Keep taking your HIV medication. Whatever happens with your coverage, stopping antiretroviral therapy (ART) can lead to viral rebound and drug resistance. Staying undetectable protects your health and means you cannot pass HIV to sexual partners (U=U).[4] If coverage lapses, call your clinic or Ryan White program right away.
Who the New Rules Apply To
The work requirement applies to adults who are:
- Ages 19 to 64
- Not pregnant and not enrolled in Medicare
- Covered through the ACA Medicaid expansion group, or certain state waiver programs that work like it
KFF counts 44 states that must put the requirement in place: the 41 expansion states (including D.C.) plus Georgia, Tennessee, and Wisconsin, which cover some adults through waivers.[5] States are not allowed to opt out.
Not sure which group you're in? Call the member-services number on your Medicaid card and ask: “Am I in the adult expansion group, and will the community engagement requirement apply to me?” Write down the date, the name of the person you spoke with, and what they said.
What Counts: 80 Hours, $580, or School
Each month that is checked, you meet the requirement with any one of these:[1]
Any mix of work, community service, a work program, or half-time school that adds up to 80 hours.
That is 80 hours times the $7.25 federal minimum wage. Seasonal workers can average their income over the past 6 months.
Being enrolled in an educational program at least half-time counts for the month on its own.
If you qualify for an exemption, you do not have to meet the hours at all. See Exemptions.
How income is counted: CMS tells states to use the same household income rules (called MAGI) they already use to decide Medicaid eligibility. Some guides also say unearned income, like Social Security, can count. Ask your state exactly whose income and which kinds of income count for your household before relying on the $580 option.[1]
Key Dates & How Checks Work
When it starts
The law requires states to start no later than January 1, 2027. Some started early: Nebraska (May 1, 2026), Montana (July 1, 2026), Arkansas (soft launch July 1, 2026, with no coverage losses before January 2027), and Iowa (planned December 1, 2026).[6]
A state that shows a “good faith” effort can ask for more time, up to December 31, 2028. This is not automatic. CMS has signaled it will grant extensions only for serious problems.[6]
When you get checked
- When you apply: the state looks back 1 to 3 months before your application.
- At renewal: expansion adults now renew every 6 months instead of every 12. The state looks back at one or more months.
- In between: states may check more often if they choose.
Most people already enrolled are first checked at their first renewal after their state's start date. That means checks roll out through 2027, not all at once on January 1.[7]
States must try to confirm compliance using data they already have, like payroll records, before asking you for documents. Volunteering and self-employment are harder to match, so you may be asked for proof.[7]
Exemptions
These exemptions are mandatory: every state must honor them. You do not have to meet the work requirement if you are:[1]
- Under 19 or over 65
- Eligible for traditional Medicaid, such as through SSI or disability, rather than the expansion group
- Dual-eligible, meaning you qualify for both Medicaid and Medicare
- Pregnant or entitled to postpartum Medicaid
- American Indian or Alaska Native
- A parent, guardian, caretaker relative, or family caregiver of a child 13 or younger, or of a person with a disability
- A veteran with a total disability rating
- In a drug or alcohol treatment and rehabilitation program
- A member of a household meeting SNAP or TANF work requirements
- Medically frail or have special medical needs (see the next section)
- Incarcerated at any point in the last three months
- Under 26 and were in foster care when you turned 18
States may also offer short-term hardship exceptions, for example during a hospital stay, a declared disaster, high local unemployment, or travel for serious medical care. These are optional, so ask what your state offers.
HIV & the Medically Frail Exemption
Under the law, a person is medically frail or has special medical needs if they:[2]
- Are blind or disabled (as defined in Section 1614 of the Social Security Act, the same definition used for SSI)
- Have a substance use disorder
- Have a disabling mental disorder
- Have a physical, intellectual, or developmental disability that significantly limits one or more activities of daily living, such as bathing, dressing, or eating
- Have a serious or complex medical condition
Meeting any one of these is enough. CMS has listed HIV as a condition states can treat as serious or complex.
What CMS's June 2026 rule did
CMS's interim final rule added a second test. Having a qualifying condition was not enough. A person also had to prove the condition “significantly impairs” their ability to meet the work requirement.[2] CMS said this was less likely for people whose HIV is not severe. In practice, that meant someone doing well on treatment could be denied the exemption because treatment was working.
HIV advocates objected. The HIV+Hepatitis Policy Institute said this extra test “was not in the law.”[8]
What the court decided on October 29, 2026
New this week: In Commonwealth of Massachusetts v. Oz, federal Judge Richard Stearns ruled that CMS went beyond what Congress wrote. The court vacated the “significantly impairs” requirement nationwide and barred CMS from enforcing it.[9]
In plain terms: the five categories listed above are the definition of medically frail. CMS cannot add an extra “impairment” test on top of them.
The 25 states and D.C. that sued got six months to update their systems without federal penalties tied to frailty decisions.[9]
What this does not settle yet:
- An appeal is possible. CMS had not said whether it will appeal as of this writing.
- States still decide which conditions count and how they confirm them. How each state treats HIV after this ruling is still being worked out.
- Some limits survived. States can only use claims data from the past 12 months to identify frailty. Starting in 2028, you can self-attest to frailty only once per continuous enrollment period. That limit is being challenged in a separate Maryland case.[9]
- The work requirement itself still starts January 1, 2027.
Other paths to an exemption
Many people living with HIV qualify through more than one route. Among Medicaid enrollees with HIV, KFF found:[2]
- 73% have another chronic condition
- 36% have a mental health condition
- 23% have a substance use disorder diagnosis
- About half of likely expansion enrollees with HIV have a disability, including an AIDS (stage 3) diagnosis
Ask your provider to look at your whole health picture, not just your HIV diagnosis.
How states find out who is exempt
States must first check your Medicaid claims from the past 12 months before asking you for anything.[2] That can miss people. Nebraska's early code list included only one of several HIV diagnosis codes. HIVMA lists the common HIV codes as B20, Z21, B97.35, and O98.7.[10]
If your state does not find you in its data, it may ask you to fill out a short screener, accept a letter from your provider, or let you self-attest. Self-attestation is broadly allowed through 2027.
Your privacy matters. Screeners and provider letters may ask about your HIV status and how it affects your life. You can ask your clinic or case manager what will be shared, with whom, and how it is protected before you sign or submit anything.
If You Get a Notice
The 30-day window
If the state cannot confirm that you meet the requirement or are exempt, it must send a notice of noncompliance. You then have 30 days to show you comply or qualify for an exemption. If you are already enrolled, your coverage continues during those 30 days.[7]
Before ending coverage, the state must check whether you qualify for Medicaid another way, send written notice, and give you the right to a fair hearing.
Send something, even if it is incomplete, and keep proof you sent it: a confirmation number, screenshot, or certified mail receipt.
They can help gather records, request a provider letter, or connect you to legal aid.[11]
The deadline printed on your notice controls. Asking quickly, often before the date coverage ends, can keep benefits going while you appeal.
If coverage ends
There is no fixed lockout period under the federal rule. You can reapply at any time. You will need to show a qualifying month again when you do.[1]
Know this: People who lose Medicaid because of the work requirement cannot get subsidized Marketplace coverage instead. Ryan White and ADAP may help, but they are a backstop, not a replacement, and some state ADAPs have waiting lists.[7]
You generally do not need a lawyer to appeal, but free legal aid can help. Find one through the Legal Services Corporation locator.
Other Changes in the Same Law
The work requirement gets the headlines, but the law changes Medicaid in other ways too.[5]
| Change | Who | Starts |
|---|---|---|
| Renewals every 6 months | Expansion adults | Renewals on or after Dec. 31, 2026 |
| Shorter retroactive coverage 1 month (expansion) · 2 months (others), down from 3 | All enrollees | Jan. 1, 2027 |
| Immigrant eligibility narrowed Many refugees, asylees, and parolees without a green card lose eligibility. Emergency Medicaid remains. | All states | Oct. 1, 2026 |
| Address checks States update addresses and screen for enrollment in two states | All states | Jan. 1, 2027 |
| Copays up to $35 per service Capped at 5% of income. Primary care, mental health, and community health centers are exempt. | Expansion adults, 100–138% FPL | Oct. 1, 2028 |
| Limits on state financing Provider taxes and payments to hospitals | All states (some limits expansion-only) | Phased, 2025–2032 |
The financing limits do not mention HIV, but they squeeze state budgets. That can put pressure on the same clinics, hospitals, and state HIV programs that people living with HIV rely on.
Florida In Focus
Florida has not expanded Medicaid, so the federal work requirement does not apply here. A 2026 state bill to add one (SB 1758) passed the Senate but died in the House on March 13, 2026. It did not become law.[12] Watch the 2027 session for a return.
Florida Medicaid is limited to specific groups. Adults without children and without a disability generally cannot qualify at any income. People living with HIV in Florida most often qualify through SSI or disability, as a parent or caretaker (very low income limit), during pregnancy (with 12 months of postpartum coverage), or as a former foster youth under 26.[13]
What Still Changes in Florida
- Immigrant eligibility: starting October 1, 2026, Florida DCF flagged nearly 177,000 people as no longer qualifying. Legal advocates report some wrongful terminations, mostly of children. Lawfully residing children remain eligible.[14] If you got a notice, ask for help appealing.
- Retroactive coverage: drops from 3 months to 2 months on January 1, 2027.
- Address checks: start January 1, 2027. Keep your address current with DCF.
- Not changing here: the work requirement, 6-month renewals, and the 2028 copays all apply only to expansion adults.
- Florida ADAP: 2026 cuts were reversed in the state budget, but premium help was not restored. See our Florida ADAP guide.
- Appeals: you can appeal a DCF Medicaid decision up to 90 days after the notice date. Asking within 15 days can keep benefits going during the appeal.[15] The Florida Health Justice Project and Florida Legal Services offer free help.
- Find care: Florida HIV/AIDS Hotline 1-800-352-2437, or search the Florida HIV Care Locator.
Your Prep Checklist
Small steps now can prevent a gap later. Check each one against your own state's rules.
Give your current address, phone, and email to both your state Medicaid agency and your health plan.
Check mail, email, texts, and your online account. Do not wait for your renewal month.
Ask when your next renewal is and when your state's rules start.
Save pay stubs, a log of work or volunteer hours, school enrollment, and caregiver or treatment-program records.
Ask how your state handles HIV and other conditions, whether a provider letter may be needed, and who at the clinic can sign it.[10]
Find a provider with HRSA's Find a Ryan White Provider tool, or call your state HIV hotline.[11]
Book appointments and refill prescriptions before the end of 2026, in case of a coverage change.
Where to get help: your state Medicaid agency, the member-services number on your plan card, your Ryan White case manager, a local legal aid office, or a community health center for sliding-scale care during a gap. People who have both Medicare and Medicaid can also get free counseling from a SHIP (1-877-839-2675).
Bring it to your next clinic visit or case-management appointment.
References & Sources
- CMS. “Medicaid Community Engagement Requirement for Certain Individuals Interim Final Rule with Comment Period (CMS-2454-IFC).” Fact sheet, June 1, 2026. cms.gov — community engagement fact sheet ↩
- KFF. “Medical Frailty and Medicaid Work Requirements: Challenges for People with HIV.” July 1, 2026. kff.org — medical frailty and HIV ↩
- KFF. “Early Medicaid Work Requirement Insights From Nebraska.” September 2026. kff.org — Nebraska insights ↩
- CDC. “HIV Treatment as Prevention.” cdc.gov/hiv/treatment ↩
- KFF. “Which States Will Be Affected by Key Medicaid Provisions in the 2025 Reconciliation Law?” October 7, 2026. kff.org — states affected ↩
- KFF. “Tracking Implementation of the 2025 Reconciliation Law Medicaid Work Requirements.” September 29, 2026. kff.org — work requirements tracker ↩
- KFF. “A Closer Look at the Work Requirement Provisions in the 2025 Federal Budget Reconciliation Law.” Updated August 26, 2026. kff.org — work requirement provisions ↩
- HIV+Hepatitis Policy Institute. “CMS Fails to Exempt People Living with HIV from Medicaid Work Requirements.” June 2026. hivhep.org — press release ↩
- HFMA. “Court Vacates CMS Medical Frailty Restriction in Medicaid Work Requirement.” October 29, 2026. hfma.org — medical frailty ruling ↩
- HIV Medicine Association. “Medicaid Work/Community Engagement Requirements: State Advocacy to Prevent Coverage Disruptions.” July 2026 (PDF). hivma.org — state advocacy brief ↩
- HRSA Ryan White HIV/AIDS Program. “Available Care and Services.” ryanwhite.hrsa.gov/hiv-care/services ↩
- LegiScan. Florida SB 1758 (2026), “Public Assistance.” Died in Messages, March 13, 2026. legiscan.com — FL SB 1758 ↩
- Florida Department of Children and Families. “Medicaid.” myflfamilies.com/medicaid ↩
- Florida Tribune. “In Florida, Immigrant Medicaid Crackdown Ensnares Eligible Families.” October 15, 2026. floridatrib.org — immigrant Medicaid ↩
- Florida Health Justice Project. “What Can I Do If My DCF Notice Says Medicaid Benefits Are Ending?” floridahealthjustice.org — DCF notice guidance ↩