Imagine spending years fighting to be believed. You have gathered medical records, missed work, endured examinations, and sat through hearings. You have been denied once, maybe twice, maybe more. And then, finally, the letter arrives: approved.

Most people assume that approval means relief. For Social Security Disability Insurance recipients, it means something else entirely. It means the clock starts on another wait — this time for the health coverage that their lives depend on.

And now, peer-reviewed research published in one of the most respected health policy journals in the country has put a number on what that wait costs. The number is devastating.

The research: what Health Affairs found

In March 2026, researchers from the University of Pennsylvania and the Social Security Administration published a landmark study in Health Affairs — one of the nation's leading peer-reviewed health policy journals. The study, authored by David Powell, Seth Hartig, and Mireille Jacobson, examined the mortality rates of SSDI beneficiaries during the mandatory 24-month Medicare waiting period using Social Security Administration data spanning two decades.

Key findings — Health Affairs, 2026

5.96% 24-month mortality rate for SSDI beneficiaries in the waiting period, 1.25% Adjusted 24-month mortality rate in the general population~5× Higher mortality rate for SSDI beneficiaries vs. general population

Source: Powell D, Hartig S, Jacobson M. "SSDI Beneficiaries Had Elevated Mortality During The 2-Year Waiting Period For Medicare, 2000–21." Health Affairs. March 2026;45(3):292-298. doi:10.1377/hlthaff.2025.00592

The researchers found that those with systemic diseases — heart failure, COPD, and cirrhosis among them — faced the highest mortality rates of all. These are not abstract data points. These are people who had already been determined, by the federal government, to be too sick to work. And they were dying because they could not access the healthcare that determination should have guaranteed.

"There's no system in place to provide health insurance for this group during the waiting period, so they have to rely on Medicaid if they qualify, spousal coverage if that's an option, purchase insurance from an exchange, or find insurance from some other source. Many probably just go uninsured."

— David Powell, LDI Senior Fellow, University of Pennsylvania (Penn LDI, March 2026)

The wait before the wait: how long this actually takes

To understand why the Medicare waiting period is so lethal, you have to understand the full timeline a disabled person must survive before coverage begins. The 24-month Medicare wait is not the starting point. By the time it begins, most applicants have already endured years of delays.

Step 1 — Initial application

Average wait: 227 days (7.5 months) for an initial decision. In FY2024, only about 36–38% of initial claims were approved. (SSA FY2024 Report; Urban Institute, Sept. 2025)

Step 2 — Reconsideration appeal

For the roughly 62% denied initially: average additional wait of 7.1 months (213 days), with only about 10–16% approved at this stage. (Atticus, June 2024)

Step 3 — ALJ hearing

Those who reach the hearing stage wait an average of 12 to 18 additional months. About 58% of hearings result in approval. (Atticus, 2024; SSA data)

Step 4 — 5-month SSDI payment wait

After approval, federal law requires an additional 5-month wait before the first SSDI payment is issued. (Social Security Act, Title II; Congress.gov, H.R. 930)

Step 5 — 24-month Medicare waiting period

Two full years after the start of SSDI payments before Medicare coverage begins — with no federal health insurance provided in between. This is where people die. (Social Security Amendments of 1972; Health Affairs, 2026)

According to the data, the average total time from initial application to a final decision is roughly 23 months — and that is only to reach approval. Add the 5-month payment wait and the 24-month Medicare wait, and a person filing their first SSDI application today could be waiting well over four years before they hold a Medicare card. For people with cancer, heart failure, MS, lupus, or COPD, four years is not a footnote. It is often a death sentence.

Where did this waiting period come from?

The 24-month Medicare waiting period was created by the Social Security Amendments of 1972. Congress designed it as a cost-containment measure — a way to limit Medicare to those with genuinely long-term disabilities rather than temporary conditions. In the healthcare environment of 1972, the logic had a certain administrative coherence.

That world no longer exists. Treatment costs for serious chronic conditions have risen exponentially. The ACA marketplace, for all its improvements, offers options that many newly disabled people — who have lost their employer-sponsored coverage and are receiving limited SSDI payments — cannot realistically afford. COBRA can cost up to 102% of the total cost of coverage for the first 18 months, a sum far beyond the reach of most SSDI recipients. Medicaid eligibility varies dramatically by state. For many people, no viable alternative exists.

"It is common that during these 24 months, vulnerable individuals will lose their health insurance because they can no longer afford their COBRA or other private health coverage."

— Medicare Rights Center, Fact Sheet on the Two-Year Waiting Period

Congress has already acknowledged, at least partially, that the rule is unjust. Two conditions are currently exempt from the Medicare waiting period entirely: ALS (amyotrophic lateral sclerosis) and end-stage renal disease. The ALS exemption from the 5-month SSDI payment wait was signed into law in 2020. These carve-outs were granted precisely because the conditions progress so rapidly that waiting for coverage is a death sentence. The question is why that same logic has not been applied to the millions of others in equally desperate circumstances.

The human cost hiding in plain sight

The statistics below are not abstractions. They are people.

~56,000 People died waiting for their Medicare coverage to begin in 2018 alone (Congressman Doggett's office, citing SSA data).

30,000 SSDI applicants died in 2023 alone while still awaiting a disability decision (Graham Law, citing SSA/GAO data)

48,000 Applicants filed for bankruptcy while awaiting a disability decision between 2014 and 2019 (U.S. GAO)

940,000+ People currently waiting for an initial disability determination as of July 2025 (Urban Institute, Sept. 2025)

These are people with cancer who cannot access chemotherapy. People with heart failure who cannot afford the medications that prevent hospitalization. People rationing insulin, skipping specialist appointments, going without surgery — not because they are being reckless, but because they are doing the math and the math is impossible.

Legislation exists. It keeps stalling.

The Stop the Wait Act of 2025 (H.R. 930), introduced in February 2025 by Rep. Lloyd Doggett, would phase out the 5-month SSDI payment waiting period entirely by 2030, and would eliminate the 24-month Medicare waiting period for any beneficiary who cannot afford minimum essential coverage. The bill has been referred to the House Ways and Means and Energy and Commerce Committees.

This is not the first time such legislation has been introduced. Versions of this bill have been brought forward repeatedly — in 2009, 2019, 2022, 2024 — and each time it has stalled. The advocacy coalition behind it includes the National MS Society, the Medicare Rights Center, the National Alliance on Mental Illness, the Arc of the United States, Paralyzed Veterans of America, and dozens of other organizations.

"For individuals with disabilities, the security that Social Security was intended to provide comes at a punishing and unnecessary cost: two full years without health insurance."

— Rep. Lloyd Doggett, introducing the Stop the Wait Act (Congress.gov, Feb. 2025)

What the Hendrix Foundation believes

The Charlie E. & Minnie P. Hendrix Foundation exists because chronic illness does not wait, and neither should the people fighting it. The research published in Health Affairs this year is not a surprise to us — it is confirmation of what the families we serve have lived. It is confirmation of a system that asks the most medically vulnerable people in America to survive on hope.

No one who has been formally recognized by the federal government as too disabled to work should spend two additional years fighting for the right to see a doctor. That is not a controversial position. It is a basic standard of decency — and it is one our system is currently failing to meet.

Take action

The wait is deadly. Help us end it.

Join us in demanding reform. Every voice, donation, and shared story brings us closer to ending the two-year wait.

Donate

Fund direct assistance for people in the coverage gap.

Advocate

Contact your representative. Ask them to support H.R. 930.

Share your story

Your lived experience is powerful testimony. We want to hear from you.

THE CHARLIE E. & MINNIE P. HENDRIX FOUNDATION | May 2026

THEY WERE FINALLY APPROVED. THEN THE WAITING BEGAN.

New peer-reviewed research reveals that for hundreds of thousands of chronically ill Americans, winning SSDI is not the finish line — it is the beginning of a coverage gap that is killing people.

Sources: Health Affairs (2026) · Penn LDI · SSA · Urban Institute · KFF · Congress.gov

Imagine spending years fighting to be believed. You have gathered medical records, missed work, endured examinations, and sat through hearings. You have been denied once, maybe twice, maybe more. And then, finally, the letter arrives: approved.

Most people assume that approval means relief. For Social Security Disability Insurance recipients, it means something else entirely. It means the clock starts on another wait — this time for the health coverage that their lives depend on.

And now, peer-reviewed research has put a number on what that wait costs. The number is devastating.

THE RESEARCH: WHAT HEALTH AFFAIRS FOUND

In March 2026, researchers from the University of Pennsylvania and the Social Security Administration published a landmark study in Health Affairs. The study found:

- 24-month mortality rate for SSDI beneficiaries in the waiting period: 5.96%

- Adjusted 24-month mortality rate in the general population: 1.25%

- SSDI beneficiaries are nearly 5 times more likely to die during the waiting period

Source: Powell D, Hartig S, Jacobson M. "SSDI Beneficiaries Had Elevated Mortality During The 2-Year Waiting Period For Medicare, 2000–21." Health Affairs. March 2026;45(3):292-298.

"There's no system in place to provide health insurance for this group during the waiting period so they have to rely on Medicaid if they qualify, spousal coverage if that's an option, purchase insurance from an exchange, or find insurance from some other source. Many probably just go uninsured." — David Powell, LDI Senior Fellow, University of Pennsylvania

THE WAIT BEFORE THE WAIT

Step 1 — Initial application: Average 227 days (7.5 months) for a decision. Only 36-38% approved initially. (SSA FY2024; Urban Institute, Sept. 2025)

Step 2 — Reconsideration appeal: Additional 7.1 months (213 days). Only 10-16% approved. (Atticus, June 2024)

Step 3 — ALJ hearing: Additional 12-18 months. About 58% approved. (Atticus, 2024)

Step 4 — 5-month SSDI payment wait: After approval, 5 more months before first payment. (Social Security Act, Title II)

Step 5 — 24-month Medicare waiting period: Two full years after SSDI payments begin before Medicare coverage starts. This is where people die. (Social Security Amendments of 1972; Health Affairs, 2026)

WHERE DID THIS WAITING PERIOD COME FROM?

The 24-month Medicare waiting period was created by the Social Security Amendments of 1972. Congress designed it as a cost-containment measure. That world no longer exists. COBRA can cost up to 102% of the total cost of coverage for the first 18 months. Medicaid eligibility varies dramatically by state. For many people, no viable alternative exists.

"It is common that during these 24 months, vulnerable individuals will lose their health insurance because they can no longer afford their COBRA or other private health coverage." — Medicare Rights Center

THE HUMAN COST

- ~56,000 people died waiting for Medicare in 2018 alone (Congressman Doggett's office)

- 30,000 SSDI applicants died in 2023 awaiting a disability decision (Graham Law, citing SSA/GAO)

- 48,000 applicants filed for bankruptcy awaiting a decision 2014-2019 (U.S. GAO)

- 940,000+ people currently waiting for an initial determination (Urban Institute, Sept. 2025)

LEGISLATION EXISTS. IT KEEPS STALLING.

The Stop the Wait Act of 2025 (H.R. 930) would phase out the 5-month SSDI wait and eliminate the 24-month Medicare waiting period for beneficiaries who cannot afford coverage. Versions of this bill have been introduced since 2009 and have stalled each time.

"For individuals with disabilities, the security that Social Security was intended to provide comes at a punishing and unnecessary cost: two full years without health insurance." — Rep. Lloyd Doggett (Congress.gov, Feb. 2025)

WHAT THE HENDRIX FOUNDATION BELIEVES

No one formally recognized as too disabled to work should spend two additional years fighting for the right to see a doctor. That is a basic standard of decency — and one our system is currently failing to meet.

TAKE ACTION:

- Donate: hendrixfoundation.org/donate

- Share your story: hendrixfoundation.org/share-your-story

- Read H.R. 930: congress.gov/bill/119th-congress/house-bill/930

- Contact us: info@hendrixfoundation.org

SOURCES:

Powell D, Hartig S, Jacobson M. Health Affairs. 2026;45(3):292-298. doi:10.1377/hlthaff.2025.00592

Penn LDI. ldi.upenn.edu. March 3, 2026.

Urban Institute. urban.org. September 2025.

Atticus. atticus.com. June 2024.

KFF. kff.org. September 2025.

Medicare Rights Center. medicarerights.org.

U.S. Congress. H.R. 930, 119th Congress. congress.gov. February 4, 2025.

Rep. Lloyd Doggett. doggett.house.gov.

Graham Law. grahamlpa.com. July 2025.

Hiller Comerford. hillercomerford.com. April 2026.