Our federal advocacy work focuses on educating and mobilizing all members of Congress and the Administration in a nonpartisan fashion to achieve the mission of The ALS Association: To discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.
Congress should re-introduce and pass the Accelerating Access to Critical Therapies (ACT) for ALS Act and the Promising Pathway Act. People with ALS urgently need effective new treatments. FDA must be fully funded, fully staffed and provided the regulatory authority they need to be fast and effective and speed ALS trials and drug approvals.
People with ALS urgently need the federal government to increase investments in ALS research that will lead to the discovery of effective treatments and a cure. This means we need more ALS scientists, more ALS clinical trials, and more ALS research that can lead to effective treatments and prevent new cases of ALS.
People with ALS must continue to have full access to safe, high-quality care via telehealth at home. Congressional expansion of telehealth has proven to be critically important for people with ALS throughout the COVID-19 public health emergency. Congress must permanently extend these expansions and ensure that all health care services important to people with ALS are covered by telehealth.
People with ALS must have health care that is high-quality, affordable, and accessible. This includes enhancing all aspects of health care coverage; protections for pre-existing conditions; reducing costs for Medicare coverage including home infusion and other specialized outpatient and in-patient medical care; durable medical equipment (wheelchairs, speech generating devices, breathing equipment); and all medications needed by people with ALS.
Veterans with ALS serving in any branch of the United States Armed Forces are more likely to develop and die from ALS. As a result of The ALS Association’s efforts, the Veterans Administration recognizes ALS as a service-connected disease and provides additional financial and health care benefits. The ALS Association will continue to fight to ensure that veterans living with ALS and their families receive the best health care and maximum benefits possible.