The legislative “asks” this year were:
1) Co-Sponsor the ALS Disability Insurance Act (S.578/H.R. 1407) to waive the Social Security Disability Insurance five month waiting period for people with ALS.
2) Oppose the Centers for Medicare and Medicaid Services (CMS) decision to add noninvasive ventilators to the Competitive Bidding Program and direct the agency to revise outdated policies to recognize advances in technologies. Non-invasive ventilators are breathing machines that PALS can use with a mask or a mouthpiece. These ventilators assist respiratory health for people with ALS. These machines have been added to the competitive bidding program which will restrict access for Medicare beneficiaries.
3) Provide $20 million for the ALS Research Program at the Department of Defense. This is an increase of $10 million from last year.
4) Provide $10 Million to continue the National ALS Registry and Biorepository at the Center for Disease Control and Prevention.
5) Add $2.5 billion to the National Institute of Health budget to expand the NIH and its ability to provide promising research in all disciplines.
Senator Richard Burr met with us and listened to families who shared how their loved ones were fighting ALS and how the legislation above was needed. Senator Burr was receptive and promised to either sign on or learn about the issues and give them his consideration.
We also met with the legislative aides for David Rouzer, Richard Hudson, and Alma Adams.
The congressional representatives listen to their aides and we have had a very high percentage of success with our representatives supporting legislation that will help people with ALS. And YOU can help! Contact your representatives and make your voice be heard! This link makes it easy for you to connect with your representative: Be Heard!