Congress extends ALS research funding, adds safety oversight for rare diseases
H.R. 8205 — Accelerating Access to Critical Therapies for ALS Reauthorization Act of 2026 · Filed by Mike Quigley (D-IL) · 103 cosponsors · Introduced Apr 6, 2026 · Passed both chambers
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What it does
This bill extends the Accelerating Access to Critical Therapies for ALS Act through fiscal year 2031 and adds new requirements: drug manufacturers must provide enrollment, safety, and efficacy data when seeking grant renewals; grantees must report serious adverse events to the grant-making institution; the FDA must publish an action plan within 18 months describing its 5-year strategy for ALS and other rare neurodegenerative diseases, and report on implementation within 5 years. The bill expands the original ALS-focused program to include other rare neurodegenerative diseases.
Why we flagged it
The bill's core function is to extend and enhance an existing accelerated-access program for ALS therapies, add safety and data-reporting requirements, and expand FDA oversight to include other rare neurodegenerative diseases. It is a straightforward reauthorization with modest procedural improvements.
What the text implies
- Expansion from ALS-only to 'other rare neurodegenerative diseases' may broaden FDA resource demands and set precedent for similar expansions in other disease-specific programs.
- Requirement for manufacturers to provide 'available efficacy data' during grant renewal may create competitive intelligence disclosure obligations that could affect proprietary trial information.
- FDA action plan and 5-year reporting requirement creates new administrative burden on FDA but also establishes public accountability mechanism for rare-disease drug development strategy.
Section numbers refer to the bill text the analysis read — linked under Primary records below.
Who it affects
The bill extends funding and accelerates research pathways for ALS and other rare neurodegenerative diseases, while adding transparency and safety-reporting requirements that protect patients in clinical trials. Citizens with ALS and related conditions gain continued access to investigational therapies and stronger oversight of safety data.
Who stands to gain
- pharmaceutical manufacturers developing ALS and rare neurodegenerative disease therapies
- clinical research institutions and grant recipients
- academic medical centers conducting phase 2/3 trials
Named in the bill
FDA (Food and Drug Administration), NIH (implied as grant-making institution), Pharmaceutical manufacturers and sponsors, Clinical research institutions, ALS Association (implied stakeholder)
Where it stands
103 cosponsors: 64 Democrats, 39 Republicans.
- Apr 6, 2026 — Introduced · Congress.gov: “Introduced in House”
- Apr 6, 2026 — Referred to House Committee on Energy and Commerce · Congress.gov: “Referred to the Subcommittee on Health”
- May 13, 2026 — Markup held in committee · Congress.gov: “Subcommittee Consideration and Mark-up Session Held”
- May 21, 2026 — Reported out of committee · Congress.gov: “Ordered to be Reported (Amended) by the Yeas and Nays: 46 - 0”
- Jul 20, 2026 — Floor vote scheduled · Congress.gov: “Mr. Guthrie moved to suspend the rules and pass the bill, as amended”
- Jul 22, 2026 — Passed the House · Congress.gov: “On motion to suspend the rules and pass the bill, as amended Agreed to by voice vote”
- Sep 28, 2026 — Passed both chambers · Congress.gov: “Passed Senate without amendment by Voice Vote. (consideration: CR S5120)”
Dates and quoted wording are Congress.gov's action record; the timeline shows status changes, not every procedural step.
Money around this bill
4 lobbying clients named this bill on 4 disclosure filings across 1 quarter, Jun 2026 to Jun 2026. Those filings disclosed $144,000 in lobbying spend. A filing names 12 bills on average, so that figure is what each filing reported, not a share belonging to this bill.
More lobbying clients named this bill than 72% of bills with at least one filing.
Mike Quigley, the sponsor, reported $552,948 in PAC receipts in the 2026 cycle.
- Muscular Dystrophy Association, Inc. — $60,000 on 1 filing
- I Am Als — $30,000 on 1 filing
- The Als Association — $30,000 on 1 filing
- Nrx Pharmaceuticals Inc (formerly Known As Neurorx) — $24,000 on 1 filing
Lobbying Disclosure Act filings through Jul 20, 2026. A filing shows who paid to lobby on a bill it names, not what changed.
How this was measured
Analysis — Quorum's AI read the bill text published by Congress.gov (3,698 characters) on Jul 9, 2026. Section numbers in the findings refer to that text, linked below; transparency and hidden-provision scores are compared against the median of 16,222 analysed bills.
Status and sponsors — Congress.gov's bill record — actions, committee referrals and cosponsors — loaded nightly. The timeline shows status changes, not every procedural action.
Money — Senate Lobbying Disclosure Act filings whose specific-issue field names this bill for quarters ending Jun 2026 to Jun 2026. A filing's amount is reported whole beside the median number of bills a filing names; it is never divided across them. PAC receipts are FEC-reported contributions to the sponsor's candidate committee in the 2026 cycle.
As of — lobbying records through Jul 20, 2026 · page rendered 2026-10-20.
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