Policies
A neutral, source-linked way to follow legislation and policy proposals that may affect ALS care, research, access, benefits, genetic information, and insurance.
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.
State progress
States are counted only when an existing, source-linked record is verified and documents signed/enacted, effective, or current-law status. Pending, ambiguous, conflicting, and unverified records do not change the count.
For this tracker, final approval means a verified official record shows a signed or enacted law, an effective law, or current law. This is a progress measure for verified policy records; it does not describe every protection or determine an individual’s insurance eligibility.
Last verified: 09-30-2026
Verified policy records
| Policy / statute | State / federal | Plain-language purpose | Status | Introduced | Approved / enacted | Sponsor / support | Session | Official source |
|---|---|---|---|---|---|---|---|---|
| CURRENT LAW | ||||||||
| F.S. §627.4301 — Genetic information; life, disability, and long-term-care insurancegenetic discrimination · genetic testing · genetic privacy · life insurance · disability insurance · LTC insuranceStatute · Statute | Florida | Current Florida statute defining genetic information and restricting specified insurer actions and use of genetic-test results, subject to statutory exceptions. | CURRENT LAWCurrent Florida Statutes text | Not stated | 07-01-2020 | Not stated | Current statute | Official source ↗ |
| F.S. §627.65625 — Group health plan eligibility and genetic informationgenetic discrimination · genetic privacy · health insuranceStatute · Statute | Florida | Current Florida statute limiting the use of health status, medical condition, claims, genetic information, and disability in group health plan eligibility and premium rules. | CURRENT LAWCurrent Florida Statutes text | Not stated | Not stated | Not stated | Current statute | Official source ↗ |
| F.S. §641.31073 — HMO eligibility and genetic informationgenetic discrimination · genetic privacy · health insuranceStatute · Statute | Florida | Current Florida statute limiting the use of health status, medical condition, claims, genetic information, and disability in HMO eligibility and premium rules. | CURRENT LAWCurrent Florida Statutes text | Not stated | Not stated | Not stated | Current statute | Official source ↗ |
| Cal. Civ. Code §§56.18–56.186 — California Genetic Information Privacy Actgenetic privacy · genetic testing · life insurance · disability insurance · LTC insurance · health insuranceStatute · Statute | California | Regulates collection, use, maintenance, and disclosure of genetic data by direct-to-consumer genetic testing companies, including restrictions involving health, life, long-term-care, disability insurance, and employment decision-makers. | CURRENT LAWCurrent California Civil Code chapter; not a direct underwriting prohibition on insurers | Not stated | 01-01-2022 | Not stated | Current statute | 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 ↗ |
| HB 401 — Insurance rates and underwriting advertising costslife insurance · health insurance · Other ALS-related policyBill · Current Bill | Georgia | Proposed changes to how certain insurance rates and underwriting-related advertising costs are addressed in Georgia insurance law. | INTRODUCED | 02-11-2025 | Not stated | Rep. Bethany M. Frye; Rep. Joseph Gullett Momtahan | 2025–2026 | Official source ↗ |
| AB 1798 — Genetic testing for life and disability insurancegenetic discrimination · genetic testing · genetic privacy · life insurance · disability insuranceBill · Current Bill | California | Regulates how life and disability insurers use genetic characteristics and genetic-test results in underwriting, including protections for asymptomatic genetic risk and carrier-status information under the law’s terms. | SIGNED / ENACTEDApproved by the Governor on 09-30-2026 and chaptered as Chapter 897, Statutes of 2026; effective 01-01-2027. | 02-10-2026 | 09-30-2026 | Assembly Member Lori Wilson | 2025–2026 | Official source ↗ |
| HISTORICAL ENACTED LEGISLATION | ||||||||
| HB 1344 — Georgia Insurance Affordability and Claims Integrity Acthealth insurance · Other ALS-related policyBill · Historical Enacted Bill | Georgia | Modified selected Georgia insurance affordability, claims, and related insurance requirements. | SIGNED / ENACTED | 02-11-2026 | 05-12-2026 | Rep. Lauren McDonald Reeves; Rep. Matt Reeves | 2025–2026 | Official source ↗ |
| 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 ↗ |
| HB 1189 — Genetic Information and Insurancegenetic discrimination · genetic testing · genetic privacy · life insurance · disability insurance · LTC insuranceBill · Historical Enacted Bill | Florida | Prohibited specified life, disability, and long-term-care insurers from canceling, limiting, denying, or changing premiums based on genetic information, with statutory exceptions. | SIGNED / ENACTEDChapter 2020-159 | 12-03-2019 | 06-30-2020 | Rep. Paul Renner; Rep. Heather Fitzenhagen | 2020 | Official source ↗ |
| SB 41 — Genetic Information Privacy Actgenetic privacy · genetic testing · life insurance · disability insurance · LTC insurance · health insuranceBill · Historical Enacted Bill | California | Established privacy, consent, security, and disclosure requirements for direct-to-consumer genetic testing companies, including limits involving insurance decision-makers. | SIGNED / ENACTEDChapter 596, Statutes of 2021 | 12-07-2020 | 10-06-2021 | Sen. Tom Umberg | 2021–2022 | Official source ↗ |
| HISTORICAL UNSUCCESSFUL LEGISLATION | ||||||||
| HB 420 — Genetic testing coverage and cancer imaginggenetic testing · health insurance · genetic privacy · Other ALS-related policyBill · Historical Failed Bill | Georgia | Proposed requiring certain health benefit policies to cover genetic testing for an inherited mutation and cancer imaging under specified conditions. | DIED / SESSION ENDED | 02-19-2025 | Not stated | Rep. Darlene Taylor; Rep. Lee Hawkins | 2025–2026 | Official source ↗ |
| 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 ↗ |
| HB 855 — Genetic Information and Insurancegenetic discrimination · genetic testing · genetic privacy · life insurance · disability insurance · LTC insuranceBill · Historical Failed Bill | Florida | Proposed restrictions on the use of genetic information and genetic-test results by specified insurers, including life, disability, and long-term-care insurance. | DIED / SESSION ENDEDDied / did not become law | 12-04-2017 | Not stated | Rep. Jason Brodeur | 2018 | Official source ↗ |
| SB 1106 — Genetic Information and Insurancegenetic discrimination · genetic testing · genetic privacy · life insurance · disability insurance · LTC insuranceBill · Historical Failed Bill | Florida | Senate companion proposal addressing insurer use of genetic information and genetic-test results. | DIED / SESSION ENDEDCompanion proposal; did not become law | 01-05-2018 | Not stated | Not stated | 2018 | Official source ↗ |
| SB 1564 — Genetic Information and Insurancegenetic discrimination · genetic testing · genetic privacy · life insurance · disability insurance · LTC insuranceBill · Historical Failed Bill | Florida | Senate companion proposal addressing genetic information and specified insurance underwriting decisions. | LAID ON TABLELaid on table after companion HB 1189 advanced | 01-07-2020 | Not stated | Not stated | 2020 | Official source ↗ |
Florida · Florida
Current Florida statute defining genetic information and restricting specified insurer actions and use of genetic-test results, subject to statutory exceptions.
Status detail: Current Florida Statutes text
Current Florida statute limiting the use of health status, medical condition, claims, genetic information, and disability in group health plan eligibility and premium rules.
Status detail: Current Florida Statutes text
Florida · Florida
Current Florida statute limiting the use of health status, medical condition, claims, genetic information, and disability in HMO eligibility and premium rules.
Status detail: Current Florida Statutes text
California · California
Regulates collection, use, maintenance, and disclosure of genetic data by direct-to-consumer genetic testing companies, including restrictions involving health, life, long-term-care, disability insurance, and employment decision-makers.
Status detail: Current California Civil Code chapter; not a direct underwriting prohibition on insurers
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.
Georgia · Georgia
Proposed changes to how certain insurance rates and underwriting-related advertising costs are addressed in Georgia insurance law.
California · California
Regulates how life and disability insurers use genetic characteristics and genetic-test results in underwriting, including protections for asymptomatic genetic risk and carrier-status information under the law’s terms.
Status detail: Approved by the Governor on 09-30-2026 and chaptered as Chapter 897, Statutes of 2026; effective 01-01-2027.
Georgia · Georgia
Modified selected Georgia insurance affordability, claims, and related insurance requirements.
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
Florida · Florida
Prohibited specified life, disability, and long-term-care insurers from canceling, limiting, denying, or changing premiums based on genetic information, with statutory exceptions.
Status detail: Chapter 2020-159
California · California
Established privacy, consent, security, and disclosure requirements for direct-to-consumer genetic testing companies, including limits involving insurance decision-makers.
Status detail: Chapter 596, Statutes of 2021
Georgia · Georgia
Proposed requiring certain health benefit policies to cover genetic testing for an inherited mutation and cancer imaging under specified conditions.
Proposed eliminating the five-month waiting period for Social Security Disability Insurance benefits for people with ALS.
Status detail: Congress ended without enactment
Florida · Florida
Proposed restrictions on the use of genetic information and genetic-test results by specified insurers, including life, disability, and long-term-care insurance.
Status detail: Died / did not become law
Florida · Florida
Senate companion proposal addressing insurer use of genetic information and genetic-test results.
Status detail: Companion proposal; did not become law
Florida · Florida
Senate companion proposal addressing genetic information and specified insurance underwriting decisions.
Status detail: Laid on table after companion HB 1189 advanced
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