ALS Better Care Act

Full Title:
ALS Better Care Act

Summary#

This act adds a new Medicare benefit that covers a defined set of outpatient services for people diagnosed with amyotrophic lateral sclerosis (ALS). It adds a new definition of "ALS-related services" (specialized physician or nurse practitioner support, occupational therapy, speech pathology, physical therapy, dietary support, respiratory support, registered nurse support, and coordination for durable medical equipment). Coverage under the new rule would start January 1, 2027. The act creates a payment system that gives a single additional payment per visit to a qualified provider who furnishes these ALS-related services. The bill sets the base payment at $800 for 2027 and 2028 (with a possible higher recommendation from the Comptroller General for 2028) and requires the amount to be indexed in later years using an "ALS services market basket" or updated based on Comptroller General reports every three years. The payment system allows adjustments for providers participating in clinical trials and for new significant medical services or technologies. Payments must be claimed with an ICD-10-CM code for ALS and are made without cost sharing. The Secretary must define and certify "qualified providers" through rulemaking. The act also requires the Director of the National Institute of Neurological Disorders and Stroke to report within 90 days after enactment on challenges in administering and staffing ALS clinical trials, actions the Director can take, and any legislative recommendations.

What it means for you#

  • If you are diagnosed with ALS and eligible for Medicare, outpatient ALS-related services listed in the act would be covered starting January 1, 2027.
  • The bill says there should be no cost sharing for patients for the payment made under the new ALS-related services provision.
  • Providers that meet the Secretary's rules and that submit a claim with an ALS diagnosis code can receive the new per-visit payment.
  • The bill notes telehealth is important for ALS care, especially for people in rural areas, but the coverage definitions in the act list specific outpatient services rather than adding a new telehealth benefit.

Expenses#

The act sets a per-visit payment amount ($800 for 2027 and 2028 with indexing rules thereafter) and requires recurring Comptroller General reports to inform future payment amounts. No publicly available information on the total budgetary cost or overall spending impact is provided in the text.

Proponents' View#

Supporters say specialized multidisciplinary services and better reimbursement help manage complex ALS needs, can extend life and improve quality of life, reduce wait times at specialty clinics, encourage provider investment in research and technology, and improve access for patients who have limited mobility or live far from specialty centers. The bill's findings also say better support for clinical trial staffing and funding will speed development of treatments.

Opponents' View#

No publicly available information.