Public Policy Priorities

We prioritize legislation that reflects the lived experiences and perspectives of individuals with ALS, their dedicated caregivers, healthcare, and scientific professionals. We amplify the voices of those intimately acquainted with the disease, ensuring that all elected officials, regardless of political affiliation, hear their perspectives. Our overarching goal is to drive legislative and policy changes that improve the quality of life for ALS patients and provide essential support to their families and caregivers.

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:

Advancing Research

Access to Care

Improving Quality of Life

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.

ALS Research Funding National Institutes of Health (NIH) Congress needs to allocate $150 million to bolster ALS research at NIH. This increased funding is crucial to expedite the discovery and advancement of new treatments and to augment the number of ALS clinical trials.
ACT for ALS Act: Congress should allocate a minimum of $100 million to fully support the ACT for ALS Act, signed into law in December 2021, to aid every American living with ALS.
ALS Research Program (ALSRP) Department of Defense (DOD): Congress must increase funding to at least $80 million for the ALSRP. Veterans are twice as likely to be diagnosed with ALS. Enhanced funding for the ALSRP is imperative to advance innovative and impactful research aimed at developing novel treatments for ALS.
National ALS Registry and Biorepository Centers for Disease Control and Prevention (CDC) Congress should allocate a minimum of $15 million to sustain the vital efforts of the National ALS Registry and Biorepository in identifying ALS risk factors and exploring prevention strategies.

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

Justice for ALS Veterans Act (H.R. 3790 /S. 1590) Congress must support and pass the Justice for ALS Veterans Act, which seeks to increase Dependency and Indemnity Compensation (DIC) for surviving spouses and families of veterans who died of service-connected ALS, regardless of how long they lived with the disease. This important legislation aims to provide the recognition and assistance these families deserve.

Elizabeth Dole Home Care Act: (H.R.542 /S. 141) Congress must pass the bipartisan Elizabeth Dole Act which aims to bolster caregiver support at the U.S. Department of Veterans Affairs by creating a user-friendly resource center and expanding VA Home-Based Community Services nationwide. This legislation seeks to improve caregiver transition, develop assessment tools, establish a digital hub for resources, enhance mental health services, and foster collaboration between the VA, nonprofits, and Veteran Service Organizations. Military and veteran caregivers, numbering over 7.8 million in the U.S., make significant sacrifices to care for their loved ones and save the nation more than $15 billion annually.

Air Carrier Access Amendments Act (H.R. 1267/S. 545) It is essential for Congress pass the Air Carrier Access Amendments Act, which will establish a formal channel for individuals with disabilities facing air travel discrimination to register complaints with the U.S. Department of Transportation. Additionally, this legislation will set forth new accessibility standards for aircraft, ensuring that individuals who use wheelchairs and complex mobility devices have equal access and a more inclusive air travel experience.

States - New Jersey and New York

Increase Funding for Caregiver Support Programs

New York and New Jersey 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. ALS Greater New York has successfully advocated for and received state funding from New York and New Jersey legislatures. In 2023, we increased our request significantly over previous years’ allocated funding.

Improve Step Therapy of Fail First Policies: Often, insurers use "fail first" policies (also known as Step Therapy) that require patients to fail on the insurer's preferred drug(s) before a patient can take the drug originally prescribed. People living with ALS should have barrier-free access to the medications as prescribed by their providers.

Increasing Access to Telehealth

Increasing Access to Telehealth Services: Virtual care improves patient access to high-quality care well beyond the COVID-19 pandemic. More communities than ever have experienced telehealth's powerful impact on bridging gaps in care, especially underserved and rural communities that historically have had limited access to specialty care can now see top specialists due to expanded access to telehealth services.

New Jersey 2703 Allows health care providers located outside New Jersey to provide healthcare services to New Jersey residents using telemedicine and telehealth.
New York 2776 Expands the healthcare services provided by telehealth.

Make ALS a Reportable Disease

ALS in the U.S. is not a nationally notifiable condition and, therefore, is not reported to state and local health officials and federal health agencies such as the Centers for Disease Control and Prevention/Agency for Toxic Substances Disease Registry. In order to best estimate prevalent ALS cases, the National Registry employs self-reported data for case ascertainment, whereas traditional non-communicable disease registries (e.g. cancer) largely depend upon state laws that mandate healthcare providers to identify cases. Making ALS a reportable disease would greatly increase the research and care of those living with ALS.

New Jersey 3269 Provides that consistent with federal and State privacy laws, the Department of Health is to require healthcare facilities to confidentially report to the department all known and suspected cases of amyotrophic lateral sclerosis in a manner to be specified by the department. The department is to record and compile information received pursuant to the bill’s provisions for research purposes only.

Prescription Pricing

New Jersey 1182/A. 1811 Requires continued coverage of prescription drugs for certain medical conditions.
New York 836 Provides for patient prescription pricing transparency; requires certain insurers or pharmacy benefit managers to furnish required cost, benefit, and coverage data upon request of the insured, the insured's health care provider, or an authorized third party. Signed by Governor 3/3/2023.

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 A2083, 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.

Biomarker Testing and Protection Against Discrimination:

There are currently no biomarker tests on the market for ALS. However, a tremendous amount of research is being done in this area. Inevitably, there will be biomarkers identified and tests available for ALS in the future, so making sure states have policies on the books to ensure coverage and access to biomarker testing while also protecting against discrimination related to that testing is important for people living with ALS.

New York A1673 and S1196, would require every policy which provides medical, major medical, or similar comprehensive-type coverage shall provide coverage for biomarker

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.

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