Policies
Federal bills, amendments, and enacted laws are linked to Congress.gov records.
Policies affecting people with ALS, gene carriers, families, researchers, and caregivers can be introduced, amended, passed, stalled, rejected, vetoed, or allowed to expire without becoming law.
This tracker includes both current and historical legislation so users can see not only what became law, but also what was proposed and what happened to it.
Use the filters below to explore legislation by state, status, subject, and session.
Policy records are linked to exact official government sources. Check the official source directly for current text, status, effective dates, and eligibility.
Verified policy records
| Policy / statute | State / federal | Plain-language purpose | Status | Introduced | Approved / enacted | Sponsor / support | Session | Official source |
|---|---|---|---|---|---|---|---|---|
| CURRENT / PENDING LEGISLATION | ||||||||
| H.R. 3537 — Accelerating Access to Critical Therapies for ALS ActALS research funding · clinical-trial access · Expanded Access · drug approval/access · research infrastructureBill · Current Bill | Federal | Established federal grant and coordination programs intended to support ALS and other rare neurodegenerative disease research, development, and access to investigational therapies. | SIGNED / ENACTED | 05-25-2021 | 12-23-2021 | Rep. Mike Quigley | 117th Congress (2021–2022) | Official source ↗ |
| H.R. 8662 — Accelerating Access to Critical Therapies for ALS ActALS research funding · clinical-trial access · Expanded Access · drug approval/accessBill · Current Bill | Federal | Proposed federal grants and programs for ALS and other severely debilitating neurodegenerative disease research, development, and access to investigational drugs. | DIED / SESSION ENDED | 10-23-2020 | Not stated | Rep. Jeff Fortenberry | 116th Congress (2019–2020) | Official source ↗ |
| S.Amdt. 2689 to S. 578 — ALS Disability Insurance Access Act amendmentdisability benefits · Other ALS-related policyBill · Current Bill | Federal | Proposed an amendment related to the ALS Disability Insurance Access Act of 2019. | FAILED | 12-02-2020 | Not stated | Sen. Chuck Grassley | 116th Congress (2019–2020) | Official source ↗ |
| HISTORICAL ENACTED LEGISLATION | ||||||||
| H.R. 493 — Genetic Information Nondiscrimination Act of 2008genetic discrimination · genetic privacy · health insuranceBill · Historical Enacted Bill | Federal | Prohibited covered employers and health plans from using specified genetic information for employment decisions or health-insurance eligibility and premium decisions. | SIGNED / ENACTEDPublic Law 110-233 | 01-11-2007 | 05-21-2008 | Rep. Louise Slaughter | 110th Congress (2007–2008) | Official source ↗ |
| S. 204 — Right to Try ActRight to Try · Expanded Access · investigational treatmentBill · Historical Enacted Bill | Federal | Established a federal pathway for eligible patients with life-threatening conditions to access certain investigational drugs outside the traditional approval pathway. | SIGNED / ENACTEDPublic Law 115-176 | 01-24-2017 | 05-30-2018 | Sen. Ron Johnson | 115th Congress (2017–2018) | Official source ↗ |
| HISTORICAL UNSUCCESSFUL LEGISLATION | ||||||||
| H.R. 5063 — ALS Disability Insurance Access Act of 2019ALS research funding · disability benefitsBill · Historical Failed Bill | Federal | Proposed eliminating the five-month waiting period for Social Security Disability Insurance benefits for people with ALS. | DIED / SESSION ENDEDCongress ended without enactment | 05-13-2019 | Not stated | Rep. Seth Moulton | 116th Congress (2019–2020) | Official source ↗ |
Established federal grant and coordination programs intended to support ALS and other rare neurodegenerative disease research, development, and access to investigational therapies.
Proposed federal grants and programs for ALS and other severely debilitating neurodegenerative disease research, development, and access to investigational drugs.
Proposed an amendment related to the ALS Disability Insurance Access Act of 2019.
Prohibited covered employers and health plans from using specified genetic information for employment decisions or health-insurance eligibility and premium decisions.
Status detail: Public Law 110-233
Federal
Established a federal pathway for eligible patients with life-threatening conditions to access certain investigational drugs outside the traditional approval pathway.
Status detail: Public Law 115-176
Proposed eliminating the five-month waiting period for Social Security Disability Insurance benefits for people with ALS.
Status detail: Congress ended without enactment
Federal Title II of the Genetic Information Nondiscrimination Act (GINA) addresses employers’ use of genetic information. It does not by itself create a general federal ban on the use of genetic information in life, disability, or long-term-care insurance underwriting. State rules can differ and should be checked against the exact state source.
Research-funding, expanded-access, Right to Try, clinical-trial, drug-approval, and research-infrastructure records are grouped by their official legislative status. A policy record does not guarantee trial access, treatment access, coverage, or eligibility.
Benefits, disability, Medicare, Medicaid, and caregiver-support records can affect access differently by program and jurisdiction. Verify the current rule, eligibility criteria, and effective date with the official program or a qualified benefits professional.
Policy records are educational and neutral. A policy record is not legal, insurance, benefits, or medical advice. Confirm current text, status, effective dates, and eligibility with the official source and a qualified professional.
Policy records last verified: 09-30-2026