MaxEidswick
Legendary member
- Joined
- Sep 1, 2013
- Messages
- 5,598
- Reason
- PALS
- Diagnosis
- 08/2013
- Country
- US
- State
- Texas
- City
- Pinehurst
Dear Max,
Thanks to your advocacy throughout the year, this week the House of Representatives has advanced legislation to help find a treatment for ALS and to improve the lives of people living with the disease. An update on the latest activity is below. The action taken by Members of Congress to support the fight against ALS is a testament to the effectiveness of your outreach, to tell the ALS story and to make our cause personal for Members of Congress. Thank you!
The ALS Research Program (ALSRP) at the Department of Defense (DOD):
The House Appropriations Committee voted to pass the FY 2016 Defense Appropriations bill on Tuesday, June 2 and provide an additional $7.5 million to continue funding for the program. This is a significant victory as the Committee maintained funding for the program as it reduced funding for other defense health programs by more than $600 million. The ALSRP was created to find a treatment for ALS and, to date, has identified four potential treatments! The bill now heads to the House floor for passage. If enacted, the bill would bring total funding for the ALSRP to $60 million.
Speech Generating Devices:
The Steve Gleason Act: The House Ways and Means Committee unanimously passed the Steve Gleason Act (H.R. 1919) on Tuesday, June 2. The legislation would help ensure access to SGDs and eye tracking technology and allow people to keep their SGD if they are admitted to hospice, a hospital or nursing facility. The Energy and Commerce Committee, which also has jurisdiction over the legislation, has waived its jurisdiction so the bill is cleared to move to the House floor for a vote. The Senate already has passed the Steve Gleason Act so once the House passes the bill, it heads to the President to be signed into law.
Medicare Coverage Policy: The ALS Association has submitted formal comments to the Centers for Medicare and Medicaid Services (CMS) in response to the draft SGD National Coverage Determination (NCD) that the agency proposed at the end of April. The draft NCD is available here Medicare Coverage Document (MCD) for Speech Generating Devices. The Association strongly supports the proposed coverage policy as it not only helps to ensure access to all of the functionality that SGDs provide, but also expands Medicare’s SGD coverage policy. If implemented the policy:
• Expands SGD coverage. The NCD not only would cover SGDs, but also, for the first time, provide coverage for non-speech communication technology such as e-mail, text and phone capabilities.
• Allow people to upgrade their SGDs to access additional functionality such as the internet, environmental controls and other functionality.
Thank you again to everyone who has reached out to Congress and to CMS about these critical issues! Your outreach clearly has had an impact and continues to make a difference in the fight against ALS. We will keep you updated as these and other important issues move forward and will let you know when your advocacy to Congress can make the most difference.
Sincerely,
The Public Policy Department
P.S. – If you are not already, follow @ALSPublicPolicy on Twitter for the latest breaking news and more ways for you to make a difference in the fight against ALS!
Thanks to your advocacy throughout the year, this week the House of Representatives has advanced legislation to help find a treatment for ALS and to improve the lives of people living with the disease. An update on the latest activity is below. The action taken by Members of Congress to support the fight against ALS is a testament to the effectiveness of your outreach, to tell the ALS story and to make our cause personal for Members of Congress. Thank you!
The ALS Research Program (ALSRP) at the Department of Defense (DOD):
The House Appropriations Committee voted to pass the FY 2016 Defense Appropriations bill on Tuesday, June 2 and provide an additional $7.5 million to continue funding for the program. This is a significant victory as the Committee maintained funding for the program as it reduced funding for other defense health programs by more than $600 million. The ALSRP was created to find a treatment for ALS and, to date, has identified four potential treatments! The bill now heads to the House floor for passage. If enacted, the bill would bring total funding for the ALSRP to $60 million.
Speech Generating Devices:
The Steve Gleason Act: The House Ways and Means Committee unanimously passed the Steve Gleason Act (H.R. 1919) on Tuesday, June 2. The legislation would help ensure access to SGDs and eye tracking technology and allow people to keep their SGD if they are admitted to hospice, a hospital or nursing facility. The Energy and Commerce Committee, which also has jurisdiction over the legislation, has waived its jurisdiction so the bill is cleared to move to the House floor for a vote. The Senate already has passed the Steve Gleason Act so once the House passes the bill, it heads to the President to be signed into law.
Medicare Coverage Policy: The ALS Association has submitted formal comments to the Centers for Medicare and Medicaid Services (CMS) in response to the draft SGD National Coverage Determination (NCD) that the agency proposed at the end of April. The draft NCD is available here Medicare Coverage Document (MCD) for Speech Generating Devices. The Association strongly supports the proposed coverage policy as it not only helps to ensure access to all of the functionality that SGDs provide, but also expands Medicare’s SGD coverage policy. If implemented the policy:
• Expands SGD coverage. The NCD not only would cover SGDs, but also, for the first time, provide coverage for non-speech communication technology such as e-mail, text and phone capabilities.
• Allow people to upgrade their SGDs to access additional functionality such as the internet, environmental controls and other functionality.
Thank you again to everyone who has reached out to Congress and to CMS about these critical issues! Your outreach clearly has had an impact and continues to make a difference in the fight against ALS. We will keep you updated as these and other important issues move forward and will let you know when your advocacy to Congress can make the most difference.
Sincerely,
The Public Policy Department
P.S. – If you are not already, follow @ALSPublicPolicy on Twitter for the latest breaking news and more ways for you to make a difference in the fight against ALS!
