State Public Policy Priorities
Our goal is to make ALS a livable disease while we continue to search for new treatments and cures. To get there, The ALS Association supports important policy changes that directly impact the lives of people living with ALS and their families. The ALS Association is committed to advancing critical policies that help to find new treatments and cures, optimize current treatments and care, and prevent or delay the harms associated with ALS. State policymakers have the power to change the future of ALS by taking action on The ALS Association’s public policy priorities.
Find New Treatments and Cures
State governments must fund new and innovative research to find treatments and cures for ALS.
- Establishing or Increasing State Funding for ALS Research: State research dollars need to be focused on discoveries that will improve the lives of people living with ALS today while we search for ways to end ALS.
Optimize Current Treatments and Care
State governments must ensure access, coverage, and affordability of services, equipment, and treatments for people living with ALS.
- Establishing or Increasing State Funding for ALS Clinics and Care Services: State governments must fund The ALS Association's care services and multidisciplinary clinics to meet the needs of people living with ALS and their loved ones.
- 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 in 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.
- Banning the Use of Quality-Adjusted Life Years (QALYs) and Equal Value Life Year Gained (evLYG): QALY and similar cost-effectiveness metrics are discriminatory towards those with disabilities and rare diseases like ALS. State governments should ban the use of discriminatory QALY and evLYG metrics when determining coverage of existing and new ALS therapies.
- Eliminating or Decreasing Durable Medical Equipment (DME) Taxes: In general, in the U.S., tangible personal property (i.e., items you can see, touch, and interact with) is considered taxable when sold at retail. However, states can determine what is and is not taxable within their borders, and many states make exceptions for necessities like medical equipment. Taxes on DME unnecessarily increase the financial burden of people living with ALS.
- Enacting Rare Disease Advisory Councils (RDACs): The enactment of RDACs helps provide a stronger voice in state government to people living with rare diseases. Like other rare disease patients, people living with ALS face many unique challenges every day, from obtaining an accurate diagnosis and accessing medical specialists with knowledge of their condition to battling for fair insurance coverage for their treatment and care. RDACs provide a forum to address these challenges and produce recommendations for improving public policy.
Prevent or Delay the Harms Associated with ALS
State governments must act to improve the lives of people living with ALS and their loved ones by supporting policies that will positively impact their lives.
- 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. State governments must ensure that private insurers offer plans to people living with ALS under the age of 65 and that those plans are affordable.
- Ensuring Access to Genetic Testing and Protecting Against Discrimination: 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. States must prohibit the practice of setting higher premiums or denying coverage based on genetic information.
- Ensuring Access to Biomarker Testing and Protecting Against Discrimination: There are 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 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.
- Guaranteeing All Copays Count Towards the Cost of Drugs (Banning Copay Accumulator Adjustment Programs): Many insurers have disallowed copay assistance (also known as copay savings program, copay coupon, or a copay card) from counting towards a patient's annual deductible or out-of-pocket maximum. As a result, people living with ALS can face unexpected costs of thousands of dollars to get the medicines they need.
- Supporting the Expansion of Medicaid: As a result of the Affordable Care Act (ACA), states can expand their Medicaid (public health insurance for people with low-income) eligibility by increasing their income criteria for individuals between the ages of 19 and 64. By expanding Medicaid, more individuals will have access to adequate healthcare.
- Reforming the Prior Authorization Process: As a cost-control measure, health insurance plans often require physicians and other health care professionals to obtain advanced approval from a health plan before a specific service or treatment is delivered to the patient to qualify for payment coverage. Prior authorization delays treatment and negatively impacts health outcomes.
- Combating the use 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.
Advocacy Guiding Principles
As legislative, regulatory, and other policy proposals are considered, they must be measured against the mission and values of The ALS Association.