Public Policy Priorities
Our advocacy work focuses on educating and mobilizing members of Congress, the Administration, and state elected leaders in a nonpartisan way to achieve our mission of discovering new treatments and a cure for ALS, and serving, advocating for, and empowering people living with ALS to live their lives to the fullest.
The Greater New York Chapter advocates for legislative priorities that will help to:
Find New Treatments and Cures
Optimize Current Treatments and Care
Prevent or Delay the Harms of ALS
Find New Treatments and Cures
- ACT for ALS Act: ALS Research and Expanded Access Funding Department of Health and Human Services (HHS)
Congress must provide at least $100 million to fully fund the ACT for ALS Act (Public Law 117-79) to help every American living with ALS. The new law creates programs that will fund expanded access to experimental therapies for ALS and fund research to find treatments and cures for ALS and similar diseases directly through the FDA and through a public-private partnership lead by HHS.
- ALS Research Funding National Institutes of Health (NIH)
Congress must increase funding to support an expansion of ALS research at NIH. In 2022, NIH estimates it will spend only $115 million on ALS research. Funding for ALS research at NIH must be increased to accelerate the discovery and development of new treatments and increase the number of ALS clinical trials.
- ALS Research Program (ALSRP) Department of Defense (DOD)
Congress must increase funding to at least $60 million for the ALSRP. With 3,500 veterans currently living with ALS, funding for the ALSRP must be increased to support innovative and impactful research targeting the development of new treatments for ALS.
- Orphan Products Grants Program (OPGP) Food and Drug Administration (FDA)
Congress must provide at least $25 million for ALS research to the OPGP to increase the number of ALS clinical trials. This program supports and advances the development and evaluation of new treatments for ALS and other rare diseases.
- National ALS Registry and Biorepository Centers for Disease Control and Prevention (CDC)
Congress must provide at least $10 million to the National ALS Registry and Biorepository to continue the critical work of identifying risk factors for ALS and how to prevent it. The Registry collects and shares data on ALS with researchers and helps connect people living with ALS to clinical trials. The Biorepository collects biospecimens and makes them available to researchers.
- Study to Make ALS Livable National Academies of Sciences (NAS)
Congress must provide at least $1 million for a NAS study to provide the government and all stakeholders with a blueprint for action to make ALS livable. The study must include how to develop more effective and meaningful treatments and cures; interventions to reduce and prevent the progression and complications of ALS; the type and range of care and services people with ALS and their families need and how to ensure they receive comprehensive, quality care; what care, services and preventive measures people at risk of ALS need; and how to improve the quality-of-life, health and well-being of affected individuals and families.
- Swift Consideration and Approval of New Drugs at the FDA
The FDA must use every tool and opportunity it has to fast track the review and approval of new drugs for ALS. People living with ALS are willing to tolerate much greater risk on drugs that meet endpoints including clinically meaningful delay in ALS progress, a strong safety profile, significant survival benefit and an advance beyond or on top of currently available ALS care. We need an FDA that fully funds and staffs ALS issues and remains attuned to the needs of the ALS community.
- Promising Pathway Act (H.R. 3761/S. 1644)
Congress must support and pass the Promising Pathway Act to create a provisional approval pathway for drugs and biological interventions that meet unmet needs of rare diseases like ALS.
Optimize Current Treatments and Care
- Insurance Coverage for Drugs Including New Drugs to Treat ALS
Congress, the Medicare Program, the Veterans Administration, and private health insurance must ensure coverage for new ALS drugs so that they may be accessed by people living with ALS; protect coverage of drugs from cuts and changes that reduce access or burden beneficiaries; reduce out of pocket costs for beneficiaries and eliminate gaps in coverage, and curb the use of burdensome prior authorization and other utilization techniques that harm access to medications.
- Creating Opportunities Now for Necessary and Effective Care Technologies (CONNECT) for Health Act (H.R. 2903/S. 1512)
Congress must cosponsor and pass the CONNECT for Health Act to expand coverage of telehealth services through Medicare and make COVID-19 flexibilities permanent.
- Temporary Reciprocity to Ensure Access to Treatment (TREAT) Act (H.R. 708/S. 168)
Congress must cosponsor and pass the TREAT Act to provide temporary licensing reciprocity for all health practitioners during the COVID-19 pandemic and future public health emergencies.
- Remote Clinical Trial Access
Congress and the FDA must support continued and permanent access to remote clinical trials.
- State Health Care Professional Licensure Flexibilities
State governments must maintain and expand licensure flexibilities that allow people living with ALS to access ALS specialized care and remote clinical trials through telehealth.
- Multidisciplinary Care Access
State governments must support and provide funding to increase access to multidisciplinary care at ALS clinics and other healthcare settings. Multidisciplinary care has been shown to increase the length of life for people living with ALS up to 9 months.
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.
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.
- 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.
Prevent or Delay the Harms Associated with ALS
- Justice for ALS Veterans Act (H.R. 5607/S. 3483)
Congress must support and pass the Justice for ALS Veterans Act 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.
- Disability Employment Incentive Act (H.R. 3765/S. 630)
Congress must cosponsor and pass the Disability Employment Incentive Act to support all people who desire to work, regardless of disability, by doubling the work opportunity tax credit, the disability expenditures tax credit and the transportation barriers tax credit.
- Air Carrier Access Amendments Act (H.R. 1619/S. 642)
Congress must cosponsor and pass the Air Carrier Access Amendments Act to provide a means through which disabled individuals experiencing air travel discrimination can file complaints with the U.S. Department of Transportation and create new standards for aircraft to ensure accessibility for individuals with disabilities who use wheelchairs and complex mobility devices.
- Credit for Caring Act (H.R. 3321/S. 1670)
Congress must cosponsor and pass the Credit for Caring Act to support family caregivers that are essential to the care and well-being of people living with ALS by creating a new tax credit of up to $5,000 per year for family caregivers who spend, on average, $7,242 annually out-of-pocket.
- Increase Funding for Caregiver Support Programs
New York and New Jersey must 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. The Greater New York Chapter 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.
- Increase Access to Broadband and Assistive Technology
New York and New Jersey must support and provide funding to increase access to technology that allows people living with ALS to engage with the world as they wish, including access to broadband and more effective assistive technology.
- Increase Access to State-Funded Health Care and Comprehensive “Wrap Around” Services
New York and New Jersey must support and provide funding to increase access to services that improve the quality of life for people living with ALS and their loved ones, including transportation, housing, nutrition, and home modification services.
- Increase Access to Specialized Services
New York and New Jersey must support and provide funding for specialized services that address the unique needs of people living with ALS during public health emergencies, disasters, and in rural or remote areas.
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.
- New York 1267 would require a utilization review agent to follow certain rules when establishing a step therapy protocol – ACTIONS: Passed the Senate on January 17, 2023. The Same As bill, A. 901 has been sent to the Insurance Committee. The Greater New York Chapter submitted a Memo of Support
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 Jersey and New York must prohibit the practice of setting higher premiums or denying coverage based on 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. The Greater New York Chapter submitted a Memo of Support.
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.
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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