How Will We Make Treatments and Cures Real?: Funding and Advocacy

This year our legislative priorities are as aggressive as ALS is.

Legislative Priority 1. Double congressional funding for Department of Defense (DOD) ALS research from $20 to $40 million and increase the National Institutes of Health (NIH) ALS research spending by $20 million. 

We must secure the resources needed to find new answers, treatments and cures for this disease. Increased funding at NIH will continue to increase our scientific understanding of ALS and to fuel the pipeline of therapeutically relevant targets that can help change the ALS story. A doubling of funding at DOD for ALS research will not only enable the development of treatment ideas and drive them closer to the clinic, but allow the DOD program to fundamentally change the types of research it funds. This increase will enable the grant program to bridge the gap to the development of clinical trials — the essential, and often missing, step to getting new, effective therapies to people living with this disease. We must double down on our ALS research investments to make treatments and cures real.

Legislative Priority 2. Make real a funded expanded access program for ALS — providing people living with the disease a pathway to access safe, potentially life-changing therapies ahead of FDA approval. 

We believe a grant structure to support ALS expanded access programs is needed to make those programs work for more ALS investigational therapies. Enactment of this proposal will allow people living with ALS to have a chance at safe, promising therapies while still moving through the FDA process and enabling the collection of additional data that can continue to improve our understanding of that treatment and ALS, overall.

With policy makers and patient and caregiver partners, we are developing a multi-pronged strategy to achieve this goal and to bring transparency to the expanded access process so that patients know what programs are available. 

Read more about our principles guiding our work on access to ALS investigational therapies.

Legislative Priority 3. Pass the SSDI bill to eliminate the waiting period for ALS patients and their families to receive social security disability benefits.

Currently, people living with ALS have to wait five months post-diagnosis to be able to access their social security disability insurance benefits. This disease moves too fast and is too financially devastating to most families, so this needs to change. Our advocates are working with ALS champions on Capitol Hill to increase support for the existing House (H.R. 1407) and Senate (S.578) bills to create a path to pass this legislation.

Legislative Priority 4. Build a Congressional House ALS Caucus to 150 members strong and grow the Congressional Senate ALS Caucus to 25 members.

The House and Senate ALS Caucuses bring together congressional leaders from both sides of the aisle to raise awareness about the challenges faced by ALS patients and their families, think creatively about policy solutions to reduce the negative impacts of ALS, remove barriers to efficient therapy development and invest in groundbreaking research to find treatments and cures.

Click here to help build our legislative champions.

When we said this last year, we meant it — “There is a time when you must stand up and demand change and then work like mad with anyone who is willing to champion your mission to get that change to happen. That time is now in ALS.”