ALS Legislative Priorities

At ALS United Greater New York, our advocacy is grounded in the real-life experiences of people living with ALS, their caregivers, and the professionals who support them. We work to ensure that elected officials from all political backgrounds hear and understand the community's urgent needs. In late 2024, we surveyed individuals impacted by ALS to shape our advocacy agenda, which centers on three priorities:

expanding research and clinical trial access
enhancing financial support systems
and improving healthcare access and coverage

Guided by these priorities, we champion both state and federal policy solutions, staying responsive to new legislation and always focused on improving the quality of life for those affected by ALS.

ALS United Greater New York's core initiatives aim to create significant positive change for individuals affected by ALS and their caregivers by focusing our efforts on the following:

Expand Research Funding and Clinical Trial Access

Improve Healthcare Access and Coverage

Enhance Financial Support Systems

ALS organizations come together to advocate for FY26 funding priorities to Congress

Read the joint letter to Congress advocating for FY26 funding priorities here.

Federal Legislation & Funding

Funding - Congress must substantially increase federal funding for ALS research to develop new treatments and work towards a cure and prevention. These funds should prioritize improving the lives of current ALS patients while pursuing long-term solutions.

$80M for ALS Research at the Department of Defense for the CDMRP - Veterans are twice as likely to develop ALS, yet many promising research projects go unfunded each year.
$180M for NIH ALS Research – Cuts to ALS research threaten progress. We need increased funding to drive new therapies, biomarkers, and ultimately, a cure.
$100M for ACT for ALS – $75M for NIH’s Expanded Access Program & $25M for public-private partnerships and FDA research grants.
$15M for CDC ALS Research – Expanding the National ALS Registry & Biorepository to better understand risk factors, environmental triggers, and genetic links to ALS.

Congress must pass legislation that would significantly improve the lives of those living with ALS.

Credit For Caring Act 2025 (H.R. 2036/S.925) a bipartisan group of lawmakers in the House and Senate reintroduced the Credit for Caring Act, a bill that would provide a new tax credit of up to $5,000 for working family caregivers. Led by Representatives Linda Sánchez (D-CA) and Mike Carey (R-OH), and Senators Shelley Moore Capito (R-WV) and Michael Bennet (D-CO), the bill aims to ease the financial burden of caregiving, which often includes out-of-pocket costs for home care, adult day services, and medical support.

The legislation has widespread support from national organizations including AARP, the Alzheimer’s Association, and AMAC Action. The bill recognizes the vital role caregivers play in keeping loved ones safe at home, often while juggling jobs and other family responsibilities. With over 11 million Americans providing unpaid care for individuals living with Alzheimer’s or other chronic illnesses, this credit would offer meaningful financial relief and help strengthen families, communities, and the long-term care system.

Creating Opportunities Now for Necessary and Effective Care Technologies (CONNECT) for Health Act of 2025 (S.1261) Telehealth is a lifeline for people living with ALS, offering safe, accessible care from home when mobility, breathing challenges, and fatigue make travel difficult. Originally expanded during the COVID-19 emergency, many of these vital flexibilities are set to expire unless Congress acts. The CONNECT for Health Act of 2025 would make these services permanent by:

Removing geographic restrictions and allowing the home to be an originating site
Permanently authorizing health centers and rural health clinics to provide telehealth
Expanding the types of healthcare professionals who can deliver telehealth services
Eliminating in-person visit requirements for telemental health
Allowing telehealth waivers during future public health emergencies
Requiring publication of telehealth data to evaluate usage and quality of care

Justice for ALS Veterans Act 2025 (H.R. 749/1685) Senators Chris Coons (D-DE) and Lisa Murkowski (R-AK), Co-Chairs of the Senate ALS Caucus, introduced the Justice for ALS Veterans Act to ensure that surviving spouses of veterans who died from ALS receive the full benefits they are due—regardless of how long their loved one lived with the disease. Under current policy, families only receive an additional monthly VA stipend if the veteran lived with a fully debilitating service-connected condition for at least eight years. Since ALS progresses rapidly—often within 2 to 5 years—many families are unfairly excluded. This bipartisan legislation would close that gap and honor the service and sacrifice of veterans with ALS.

States - New Jersey and New York

Increase Funding for Caregiver Support Programs

New Jersey and New York need to continue to support and provide funding to increase access to caregiver support programs, including respite care, home- and community-based care, and local ALS support services. Over the last several years, both states have generously supported funding of our critical programs and ALS Centers.

New Jersey - In 2023, New Jersey allocated $1.5 million to help people with ALS access multidisciplinary care, home support, social work and nursing services, assistive technology, mobility aids, and more. But, in 2024, that funding was slashed by 66% - and in 2025 the governor's proposed budget deleted it. ALS United Greater New York and ALS United Mid-Atlantic have been urging your elected officials to restore ALS care funding in the state budget.

New York - In 2024, Governor Hochul’s budget marked a significant victory for New Yorkers living with ALS. Thanks to collaborative advocacy efforts with the governor’s office, $20 million was allocated for grant awards to institutions and facilities focused on rare disease research and treatment, with a portion specifically directed to advance ALS research and care through the Empire State ALS Alliance. Additionally, $5 million was secured to enhance services, programming, education, and other initiatives related to rare disease research and treatment. This funding represents a critical step forward in supporting individuals with ALS and the broader rare disease community.

Make ALS a Reportable Disease

ALS is not a nationally notifiable condition in the U.S., meaning cases are not required to be reported to state or federal health agencies like the CDC. As a result, the CDC’s National ALS Registry relies on self-reported data, unlike other disease registries—such as for cancer—which benefit from mandatory reporting by healthcare providers under state laws. In spring 2025, the House-passed Congressional budget proposed eliminating this vital registry. Doing so would significantly hinder ALS research by removing one of the few centralized sources of national data on who is affected by the disease. The registry plays a critical role in identifying patterns, tracking disease incidence, and helping researchers efficiently recruit clinical trial participants. Without it, efforts to understand ALS trends, improve care, and accelerate treatment development would be severely compromised. Making ALS a reportable disease would further strengthen research and care by ensuring more complete and reliable data.

ALS United Greater New York worked with elected officials, advocates, and medical professionals to introduce ALS Registry legislation in New Jersey and New York.

New Jersey (A.2980/S.4030) Requires healthcare professionals to report cases of amyotrophic lateral sclerosis and motor neuron disease. The legislation passed the NJ Assembly in January 2025 and awaits passage in the NJ Senate. Write your Senator and urge them to pass this important legislation here.
New York (S.6413/A.7845) Requires the Department of Health to establish a registry for the collection of information on the incidence and prevalence of amyotrophic lateral sclerosis (ALS) and motor neuron disease (MND) in the state. The legislation passed the NY Assembly in June 2025 and awaits passage in the Senate. Write your Senator and urge them to pass this important legislation here.

Genetic Testing and Protect Against Discrimination: New Jersey and New York must prohibit the practice of setting higher premiums or denying coverage based on genetic information.

As more genes are identified and linked to ALS, people living with ALS and their families should have access to genetic testing and counseling and be protected from discrimination based on their genetic information.

New York (A3229/S.6124), would prohibit discriminatory coverage and pricing decisions based on genetic testing in life, accident, health, disability, long-term care, or medical indemnity insurance. ALS United Greater New York submitted a Memo of Support.
New York (S. 2398/A.5123) requires genetic testing results only be received by patients and health care providers providing direct care while health insurance companies only receive a record that the genetic testing was performed; provides insurers cannot require access to genetic testing results and cannot take adverse action against someone for not providing genetic testing results. ALS United signed a Memo of Support. The legislation passed the Senate.

Rare Disease Advisory Council

The establishment of Rare Disease Advisory Councils (RDACs) gives individuals living with rare diseases, including ALS, a greater presence and influence in state-level decision-making. People with ALS, like others affected by rare conditions, often encounter significant hurdles—such as delayed diagnoses, limited access to knowledgeable specialists, and difficulty securing adequate insurance coverage for their care. RDACs create a structured platform where these issues can be discussed, and where informed recommendations can be developed to guide meaningful improvements in public policy.

New York (A1296A/S1287A) Establishes the Rare Disease Advisory Council to identify best practices, raise awareness regarding rare diseases, evaluate barriers to access to care, and make recommendations to the legislature and the governor. This legislation passed the Senate.

Increasing Access to Medicare Supplemental Insurance (Medigap)

Medicare supplemental insurance policies, also known as "Medigap," are sold by private insurance companies that aim to fill the gap in original Medicare for eligible enrollees living with high-cost conditions like ALS. However, under current law in many states, individuals under the age of 65 living with ALS cannot buy Medigap plans at a price they can afford due to the absence of state policy. New Jersey must ensure that private insurers offer plans to people living with ALS under the age of 65 and that those plans are affordable.

New Jersey 1162 Provides guaranteed issue rights to certain applicants for Medicare supplement insurance policies.

Medical Aid in Dying

ALS United Greater New York supports the Medical Aid in Dying legislation, which would provide end-of-life options for adults with an incurable illness or disease. This reform is a vital step towards ensuring that individuals with ALS have a choice to access, if desired, safe, comprehensive end-of-life options, ultimately enhancing their quality of life and honoring their autonomy and dignity. We believe that this legislation includes safeguards to protect vulnerable populations and healthcare providers. We acknowledge and respect the diverse range of beliefs within the medical community and society at large, and we believe that this legislation strikes an appropriate balance between providing end-of-life options and ensuring that professional ethical considerations are upheld. To read our full letter, click here.

New York (A.136/S.138) Relates to the Medical Aid in Dying Act; relates to a terminally ill patient's request for and use of medication for medical aid in dying. This legislation passed the Assembly and Senate and awaits the governor's signature.

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