Legislative Survey

2022 is coming to a close, and the new year is almost upon us!

As you know, an important part of the ALS community’s work is making sure that legislation that would better the lives of people living with and impacted by ALS is introduced, supported, and, ultimately, passed into law. As we head into 2023 and gear up for the 118th Congress, we want to hear from you about which aspects of the ALS landscape are your legislative priorities in the coming year.

Please read through the descriptions below and then fill out the survey so your voice is heard!

If you have any questions, please feel free to contact Michael Lecker at [email protected]

List of Priorities 

Accelerated Pathways–  For individuals with life-threatening, serious diseases, their lives depend on timely access to treatments. However, the current approval process takes a long time. There is a need for accelerated pathways to approval when a treatment’s safety is demonstrated, some efficacy has been evidenced, and there are no other options to save or extend lives. New legislation would create accelerated pathways for treatments that fit this criteria.

Airplane Access– People with disabilities and people who use wheelchairs have been subjected to discriminatory behavior and had their wheelchairs accidentally broken by airline staff without recourse. New legislation would help end these practices and make air travel safer.

Diversity in Clinical Trials– Access to clinical trials is not equally available to all people living in the US. New legislation would work to remedy this by creating programs and initiatives that would facilitate the inclusion of those historically excluded from clinical trials including addressing costs and travel barriers often preventing people from participating in a clinical trial.

Advanced Research Projects Agency for Health (ARPA-H) funding– ALS is an underfunded disease. The ALS community has worked hard to increase funding for research and that momentum needs to continue in the new 118th Congress.  ARPA-H  was created to cure the world’s leading diseases including ALS by focusing funding on developing scientific breakthroughs on certain diseases.  It is vital that ARPA-H is not just a one-year or one administration project, but the focal point for continuing research efforts seeking a cure or treatments for ALS. ALS must remain an identified priority for ARPA-H including research funding allocations.

Home Health Care– Receiving care in one’s own home is important for many people living with ALS. However, the current healthcare system has not been structured in a way that supports this. New legislation would help support, improve, and grow the home health care industry.

Insurance– Currently, insurance companies do not have to cover all the necessary medications (including new drugs to save or extend lives), equipment, home health care, and home modifications that people living with ALS need. New legislation could mandate coverage of some or all of these categories and establish national prior authorization criteria for therapies.

Telehealth– Telehealth is a vital tool for creating equal and easier access to health care. During the COVID-19 pandemic, restrictions around telehealth were relaxed to allow broader access to healthcare services during this time. New legislation would make permanent some or all of the temporary pathways to telehealth created due to the pandemic.

Veterans– Some of the current Veteran Hospital and Benefits Administrations’ policies are modeled on diseases that are not as fast-acting and disabling as ALS. New legislation would alter those policies to align them with the speed and urgency of ALS.

Nursing Homes and Hospice Care and Assisted Living Facilities– The quality of care provided to people living with ALS in nursing home and hospice care and assisted living facilities is often unacceptable. Health professionals in these facilities often do not know about ALS or how to appropriately care for a person living with ALS. New legislation would set mandatory high-quality standards for care.

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