ALS Better Care Act
Sponsored By: Representative Schakowsky
Introduced
Summary
Medicare coverage and a dedicated payment program for ALS outpatient care. This bill would add a defined package of ALS-related outpatient services and create a single-payment framework with periodic reviews and adjustments to improve access and support clinical trials.
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- People with ALS and their families would get Medicare coverage for eight categories of outpatient care, including physician or nurse practitioner visits, physical and occupational therapy, speech pathology, dietary and respiratory support, registered nurse services, and coordination of durable medical equipment. This coverage would start January 1, 2027.
- Qualified providers would receive a single bundled payment to deliver those services, with a base payment set at $800 in 2027 and tied to an ALS services market basket for annual updates. The bill requires provider criteria to be developed with input from patients, clinicians, and relevant organizations.
- The bill would fund stronger support for ALS clinical trials by creating payment adjustments for providers participating in trials and by requiring triennial guidance from the Comptroller General and a separate 90-day report on trial administration and staffing needs.
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Bill Overview
Analyzed Economic Effects
3 provisions identified: 2 benefits, 0 costs, 1 mixed.
New Medicare ALS outpatient payment
If enacted, Medicare would pay a single extra payment to a qualified provider for ALS outpatient services starting January 1, 2027. The bill lists eight covered ALS service types and defines a covered ALS individual as someone medically determined to have ALS. That payment would be made per visit without any cost sharing and would be triggered by an ICD-10-CM code for ALS. Any covered outpatient department payment that would otherwise apply would still be payable.
ALS single payment rate updates
If enacted, the ALS single payment would be $800 in 2027. In 2028 it would be $800 or the Comptroller General's recommended amount, if that is higher. From 2029 onward the amount would rise each year by the Secretary's ALS services market basket percentage increase. In 2030 and every third year after, the Comptroller General's most recent recommended amount could replace the computed amount if it is larger.
New payments and rules for ALS providers
If enacted, qualified providers who take part in at least one clinical trial listed on clinicaltrials.gov would get a payment adjustment to cover extra trial costs. The payment would also increase when a new or costly ALS service or technology is added and was unpaid the prior year. The Secretary must define who counts as a qualified provider through formal notice-and-comment rulemaking and must consult patients, ALS doctors, and ALS organizations. These rules would take effect January 1, 2027.
Sponsors & CoSponsors
Sponsor
Schakowsky
IL • D
Cosponsors
Rep. Fitzpatrick, Brian K. [R-PA-1]
PA • R
Sponsored 2/3/2026
Crow
CO • D
Sponsored 2/3/2026
Rep. Quigley, Mike [D-IL-5]
IL • D
Sponsored 2/3/2026
Rep. Bacon, Don [R-NE-2]
NE • R
Sponsored 2/20/2026
Rep. Morelle, Joseph D. [D-NY-25]
NY • D
Sponsored 2/20/2026
Budzinski
IL • D
Sponsored 4/9/2026
Grijalva
AZ • D
Sponsored 4/21/2026
Roll Call Votes
No roll call votes available for this bill.
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