ALS Advocacy Efforts Roll On

We all know those tasks that are never done. There is always more laundry to do, same with the dishes. And sure, the lawn mowing takes a break for the colder months, but come spring the grass will be growing again. Which is not to say that all tasks that are never done are necessarily unpleasant. Taking the dog for a walk can be enjoyable for both human and canine. Pulling weeds from the garden has a certain Zen attraction for many.

ALS advocates had reason to celebrate in December 2021 with the passage and signing into law of the Accelerating Access to Critical Therapies (ACT) for ALS Act, but there has been no time to wait as 2022 moves along with many policy priorities still on the table. For ALS advocates, there is always more to do.

In fact, among the important advocacy goals for 2022 was to secure funding for the Act for ALS Act this year and going forward. While passage of the act established two new grant programs to expand access in certain circumstances for individuals not otherwise eligible for ALS clinical trials and a Food and Drug Administration (FDA) research program to find treatments and a cure for ALS and similar diseases, Congress must still include funding for these programs as part of the budgeting process. After months of funding the government through a series of what are known as “continuing resolutions,” Congress has finally voted on a full budget—including funding for the Act or ALS Act—this week.

But even with that success, ALS advocates are engaging with members of Congress to secure more funding in the future. Broadly speaking, these efforts are focused on three areas: finding new treatments and cures, optimizing current treatments and care, and preventing or delaying the harms of ALS.

In the area of finding new treatments and cures, ALS advocates will push for more ALS funding for research at the National Institutes of Health (NIH) and Department of Defense (DOD). Advocates will also continue to push the FDA for swift consideration and approval of new drugs and treatments, and ask Congress to support and pass the Promising Pathway Act to create a provisional approval pathway for drugs and biological interventions that meet unmet needs of rare diseases like ALS.

To help with optimizing current treatments and care, our advocates are asking Congress to pass the Creating Opportunities Now for Necessary and Effective Care Technologies (CONNECT) for Health Act to expand coverage of telehealth services through Medicare and make COVID-19 flexibilities permanent. The recent ALS Focus survey on telehealth showed that people with ALS and their caregivers felt that telehealth saved them both time and money.

And to prevent or delay the harms associated with ALS, advocates are asking Congress to improve the lives of people living with ALS their loved ones by supporting policies that will positively impact their lives. Specifically, they are asking that Congress support and pass the Justice for ALS Veterans Act to increase Dependency and Indemnity Compensation (DIC) for surviving spouses and families of veterans who died of service-connected ALS, regardless of how long they lived with the disease. For caregivers, ALS advocates are asking that Congress pass the Credit for Caring Act to support family caregivers by creating a new tax credit up to $5,000 per year for family caregivers who spend, on average, $7,242 annually out-of-pocket.

With Congress being Congress, it is unlikely ALS advocates will be able to check off everything from their to-do list this year, but that won’t stop them from making every effort to positively impact the legislative landscape for the ALS community. Some tasks are never done.

If you would like to lend your voice to support these efforts, sign up now to be an ALS Advocate and help the ALS community make the case for significant investments from Congress. With your help, we can drastically accelerate the fight against ALS this year and in the future.

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