S. 4472: Accelerating Access to Critical Therapies for ALS Reauthorization Act of 2026

Introduced Apr 30, 202615 cosponsors

Sponsor

Lisa Murkowski

Lisa Murkowski

Republican · AK

Keep the door to experimental ALS drugs open

4 min readLast updated September 26, 2026

Why it matters

ALS usually kills within three to five years of the first symptoms, according to NIH — faster than most drugs can finish trials. S. 4472 keeps the federal program that funds early access to investigational ALS treatments running five more years, through 2031, and requires the access to produce research data in return.

In 2021, Congress passed the Accelerating Access to Critical Therapies for ALS Act, which funds grants that let people with ALS who can't join clinical trials receive investigational drugs anyway. Its authority runs out after fiscal year 2026.

S. 4472 extends the program for five more fiscal years, 2027 through 2031, so patients outside clinical trials keep a funded path to experimental ALS drugs. ALS research grants under the same law are extended on the same timeline.

The extension comes with conditions. Anyone applying for an expanded-access grant would have to explain how the data it generates will feed ALS research or drug development. Grant recipients would also have to promptly report safety data from any ongoing trial of the same drug.

Renewals get a closer look. Before continuing a grant, HHS would have to request and review the drug sponsor's enrollment, safety, and any available efficacy data. Funded projects would also have to start enrolling patients within a deadline HHS sets.

More drugs could qualify earlier: a combined phase 2/3 trial counts, and so does a planned phase 3 trial that hasn't started enrolling yet. That matters for patients because the program is tied to drugs already in late-stage testing.

The FDA would have to update its ALS and rare neurodegenerative disease action plan within one year, then every five years, including what it did under the last plan and what's in its way. HHS would owe Congress a report on whether the program is working within four years.

The rest is housekeeping, including fixing a misspelling of "amyotrophic" in the original law.

Bill Progress

IntroducedApr 30
Committee 
Pass SenateAug 4
Pass House 
Signed 
Law 

Latest Action · Aug 10, 2026

1/3

Passed the Senate, received in House

S. 4472 Bill Summary

What S. 4472 actually does.

1

Early access to ALS drugs lasts through 2031

Extends federal expanded-access grants and ALS research grants for fiscal years 2027 through 2031, replacing the 2022-2026 window in the original law.

2

Access has to produce research

Grant applicants must describe how data from their expanded-access program will support research or development for preventing, diagnosing, treating, or curing ALS.

3

Safety problems get reported quickly

Grant recipients must promptly report available safety data from any ongoing clinical trial of the investigational drug, under the grant's terms.

4

Renewals depend on the data

Before renewing a grant, HHS must request and assess the drug sponsor's enrollment, safety, and any available efficacy data.

5

Drugs can qualify at an earlier stage

A combined phase 2/3 trial counts as a phase 3 trial, and so does a planned phase 3 trial that isn't enrolling yet. Funded projects must begin enrolling patients within a timeframe HHS sets.

6

FDA and HHS must report on progress

FDA must update its ALS and rare neurodegenerative disease action plan within 1 year and every 5 years, including barriers and resources needed. HHS must report to Congress on the program's effectiveness within 4 years.

Who benefits from S. 4472?

People with ALS who can't get into a clinical trial

Patients who are too sick, too far from a trial site, or outside a study's eligibility rules keep a federally funded route to investigational drugs through 2031.

Patients waiting on drugs still early in late-stage testing

Because planned phase 3 and combined phase 2/3 trials now count, a drug can enter the program before its main trial starts enrolling.

Families and caregivers

They get more predictability: a program with a five-year runway instead of one whose authority lapses after fiscal year 2026.

ALS researchers and future patients

Data from expanded-access patients must now be put to research use, so treatment given outside trials can inform what gets approved next.

Who is affected by S. 4472?

Hospitals and clinics applying for grants

They must show upfront how their program's data will support ALS research, and commit to enrolling patients within an HHS deadline.

Drug companies with ALS therapies in development

When a grant tied to their drug is renewed, they must hand HHS enrollment, safety, and any available efficacy data for review.

Grant recipients

They must promptly pass along safety data from ongoing clinical trials of the same drug.

FDA and HHS

FDA takes on a recurring action-plan update every 5 years; HHS owes Congress an effectiveness review within 4 years.

Share this story
Tracking floor activity — no debate on S. 4472 yet. Updates when a legislator speaks on the record.

S4472 Legislative Journey

5 actions

House: Action Taken

Aug 10, 2026

Held at the desk.

Passed 4425-4426

Aug 4, 2026

4425-4426

Passed Senate with an amendment by Voice Vote. (consideration: CR S4425-4426; text: CR S4425-4426)

+1 more action this day

Committee Action

Jul 16, 2026

Committee on Health, Education, Labor, and Pensions. Reported by Senator Cassidy with an amendment in the nature of a substitute. Without written report.

Passed Committee

Jun 17, 2026

Committee on Health, Education, Labor, and Pensions. Ordered to be reported with an amendment in the nature of a substitute favorably.

Committee Action

Apr 30, 2026

Read twice and referred to the Committee on Health, Education, Labor, and Pensions.

About the Sponsor

Lisa Murkowski

Lisa Murkowski

Republican, AK · 24 years in Congress

Committees: Indian Affairs, Appropriations, Health, Education, Labor, and Pensions

View full profile →

Cosponsors (15)

No new cosponsors in 65 days — momentum stalled

This bill has 15 cosponsors: 8 Democrats, 7 Republicans, reflecting bipartisan support. Cosponsors represent 15 states: California, Delaware, Indiana, and 12 more.

8Democrats7Republicans·15 statesBipartisan

Committee Sponsors

Health, Education, Labor, and Pensions Committee

10D12R1I
|4 signed19 not yet

4 of 23 committee members cosponsored

10 Republicans across this committee haven't cosponsored yet. Mobilize their constituents

What laws does S. 4472 change?

2 changes

Full Text

Sections Amended

Section 7 of Accelerating Access to Critical Therapies for ALS Act (Public Law 117-79)

striking ``2022 through 2026'' and inserting ``2027 through 2031''

Section 2(f) of Accelerating Access to Critical Therapies for ALS Act (21 U.S.C. 360ee note)

striking ``2026'' and inserting ``2031''

S. 4472 Quick Facts

Cosponsors
15
Christopher Coons
Susan Collins
Amy Klobuchar
Alex Padilla
Shelley Capito
+10 more
Committee
Health, Education, Labor, and Pensions
Chamber
Senate
Policy
Health
Introduced
Apr 30, 2026

Passed the Senate, received in House

Aug 10, 2026

Constituent Resources

Get notified when this bill moves

Official Sources

S. 4472 on Congress.gov

Official text, status, and cosponsors for the Accelerating Access to Critical Therapies for ALS Reauthorization Act of 2026.

FDA: ACT for ALS

FDA hub for implementing the 2021 law this bill reauthorizes, including the action plan, grants, and public-private partnership.

FDA Action Plan for Rare Neurodegenerative Diseases including ALS

The five-year action plan S. 4472 would require FDA to update within one year and every five years after.

FDA Expanded Access

How patients outside clinical trials can seek investigational drugs, the pathway the bill's grants fund for ALS.

FDA Rare Neurodegenerative Disease Grants Program

FDA grants for ALS and other rare neurodegenerative disease research, authorized by the same 2021 law the bill extends.

Public Law 117-79 on GovInfo

Official text of the original Accelerating Access to Critical Therapies for ALS Act that S. 4472 amends.

42 U.S.C. 280g-7b

The HHS public-private partnership for rare neurodegenerative diseases, which the bill corrects in its technical amendments.

S. 4472 Common Questions

What does S. 4472 do?

It keeps the federal program that funds early access to experimental ALS drugs running through 2031, and adds requirements for research data, safety reporting, and faster patient enrollment.

What happens to ALS expanded access if S. 4472 doesn't pass?

The program's authority covers fiscal years 2022 through 2026. Without an extension, there's no authorization for new funding after September 30, 2026, though Congress could still act later.

How can I get an experimental ALS drug if I don't qualify for a clinical trial?

Expanded access lets doctors request investigational drugs for patients outside trials. This program funds those efforts for drugs in late-stage testing. Ask your neurologist or an ALS clinic whether one is available for you.

Can a drug qualify before its phase 3 trial starts?

Yes. The bill counts a planned phase 3 trial that isn't enrolling yet, plus combined phase 2/3 trials. That lets drugs enter the program earlier in development.

Does S. 4472 require data from patients who get expanded access?

Grant applicants would have to explain how data from the program will support ALS research or drug development. Renewals also depend on HHS reviewing the drug's enrollment, safety, and efficacy data.

Does S. 4472 cover diseases other than ALS?

The grants are ALS-only. But FDA's recurring action plan also covers other rare neurodegenerative diseases, and must list barriers to developing treatments and the resources needed to address them.

Has S. 4472 passed?

It passed the Senate by voice vote on August 4, 2026, and is held at the desk in the House, so the House can vote on it without committee action first. It has bipartisan cosponsors.

Who will check whether the ALS program is working?

HHS must send Congress a report on the program's effectiveness, with recommendations, within 4 years of enactment. FDA must update its ALS action plan within 1 year and every 5 years after.

Based on S. 4472 bill text

S. 4472 Bill Text

“To amend the Accelerating Access to Critical Therapies for ALS Act to reauthorize the provisions of such Act through fiscal year 2031, and for other purposes.”

Source: U.S. Government Publishing Office

Bill Alerts

Get notified when S. 4472 moves

Committee votes, floor action, cosponsor changes — straight to your inbox.

Bill alerts + Legisletter's monthly briefing. Unsubscribe anytime.

Health Bills

9 related bills we're tracking

View all→
H.R. 842

Nancy Gardner Sewell Medicare Multi-Cancer Early Detection Screening Coverage Act

Jodey Arrington
Jodey ArringtonR-TX
Cosponsor
Cosponsor
Cosponsor
Cosponsor
+334
338 cosponsors

Reported (Amended) by the Committee on Ways and Means. H. Rept. 119-333, Part I.

Oct 3, 2025

HouseHealth
H.R. 1262

Mikaela Naylon Give Kids a Chance Act

Michael McCaul
Michael McCaulR-TX
Cosponsor
Cosponsor
Cosponsor
Cosponsor
+309
313 cosponsors

Received in the Senate.

Dec 2, 2025

HouseHealth
H.R. 3514

Improving Seniors’ Timely Access to Care Act of 2025

Mike Kelly
Mike KellyR-PA
Cosponsor
Cosponsor
Cosponsor
Cosponsor
+301
305 cosponsors
+4 this month

Ordered to be Reported in the Nature of a Substitute by the Yeas and Nays: 42 - 0.

Jul 15, 2026

HouseHealth
H.R. 4206Gaining+5

CONNECT for Health Act of 2025

Mike Thompson
Mike ThompsonD-CA
Cosponsor
Cosponsor
Cosponsor
Cosponsor
+242
246 cosponsors
+5 this month

Referred to the Committee on Energy and Commerce, and in addition to the Committee on Ways and Means, for a period to be subsequently determined by the Speaker, in each case for consideration of such provisions as fall within the jurisdiction of the committee concerned.

Jun 26, 2025

HouseHealth
H.R. 6130Surging+21

ASAP Act

Vern Buchanan
Vern BuchananR-FL
Cosponsor
Cosponsor
Cosponsor
Cosponsor
+215
219 cosponsors
+21 this month

Ordered to be Reported in the Nature of a Substitute by the Yeas and Nays: 40 - 0.

Sep 16, 2026

HouseHealth
H.R. 7973

Momnibus Act

Lauren Underwood
Lauren UnderwoodD-IL
Cosponsor
Cosponsor
Cosponsor
Cosponsor
+209
213 cosponsors

Referred to the Subcommittee on Health.

Apr 20, 2026

HouseHealth
H.R. 999

Right to Contraception Act

Lizzie Fletcher
Lizzie FletcherD-TX
Cosponsor
Cosponsor
Cosponsor
Cosponsor
+206
210 cosponsors

Referred to the House Committee on Energy and Commerce.

Feb 5, 2025

HouseHealth
H.R. 12

Women’s Health Protection Act of 2025

Judy Chu
Judy ChuD-CA
Cosponsor
Cosponsor
Cosponsor
Cosponsor
+205
209 cosponsors
+1 this month

Referred to the Committee on Energy and Commerce, and in addition to the Committee on the Judiciary, for a period to be subsequently determined by the Speaker, in each case for consideration of such provisions as fall within the jurisdiction of the committee concerned.

Jun 24, 2025

HouseHealth
H.R. 3277Surging+27

Ensuring Lasting Smiles Act

Neal Dunn
Neal DunnR-FL
Cosponsor
Cosponsor
Cosponsor
Cosponsor
+200
204 cosponsors
+27 this month

Referred to the Committee on Energy and Commerce, and in addition to the Committees on Education and Workforce, and Ways and Means, for a period to be subsequently determined by the Speaker, in each case for consideration of such provisions as fall within the jurisdiction of the committee concerned.

May 8, 2025

HouseHealth

Trending Right Now

Bills gaining momentum across Congress

Tracking Health in Congress? Monitor bills, track cosponsor momentum, and launch advocacy campaigns — all from one advocacy platform.