USA: new law promises $100 million for ALS research

A new law has been passed in the United States to give more people with ALS access to experimental treatments. The government is also pledging $100 million a year for research into new treatments over the next five years.

Only a small proportion of people with ALS participate in clinical trials. This happens for various reasons. For example, many studies still use restrictive entry criteria, denying many people with ALS access to clinical trials. For other people, participation might  be physically too challenging. One of TRICALS’ goals is therefore to make trials accessible for everyone living with ALS. The new American law, called Accelerating Access to Clinical Therapies (ACT) for ALS, will make money available to give more people access to experimental treatments.

The passing of the ACT for ALS bill would not have been possible without the commitment and determination of thousands of ALS advocates. They have worked together and campaigned tirelessly to get the ACT for ALS on the political agenda. With success: on December 23^rd, President Biden signed the bill into law.

ACT for ALS

ACT for ALS contains four components:

• Grants for research on therapies for ALS
  Funding will be available so that people with ALS, who for reasons cannot participate in the clinical trial, may still get access to investigational ALS treatments. This applies to drugs being tested in phase 3 clinical trials.
• Public-Private Research Partnerships
  The aim is to encourage collaborations between the government and private companies, universities and other research institutes. These collaborations should accelerate research into ALS and other neurodegenerative diseases.
• FDA Grant Program
  An FDA (U.S. Food and Drug Administration) funding program for research into ALS and related conditions. The funding is mainly intended for projects aiming to learn how these conditions progress, discover new drug targets and improving clinical trial design.
• Publication of action plan
  The FDA must publish an action plan within six months, outlining how they will accelerate drug development and increase access to investigational therapies.

More information about the ACT for ALS law can be found on the website of I AM ALS.