By Robin Respaut
March 3 (Reuters) - Autism researchers and advocacy leaders on Tuesday said they would form a new, independent committee to help guide autism research priorities, providing a science-based alternative to official U.S. information on the condition.
U.S. Health Secretary Robert F. Kennedy Jr. remade a federal panel that guides national autism policy, called the Interagency Autism Coordinating Committee. Its newly appointed 21 members include some with ties to groups that promote claims
linking vaccines to autism, contrary to scientific evidence, as Kennedy himself has for years.
The new group, calling itself the Independent Autism Coordinating Committee, plans to operate much like the federal committee by creating a strategic plan for autism research that prioritizes scientific discovery and improved care for people with autism spectrum disorder.
It includes former federal committee members, National Institutes of Health directors, and autism scientists and advocates. A similar group of medical organizations and respected vaccine experts have been working to combat what they see as misinformation on inoculations coming from the Trump administration.
ORIGINAL AIMS OF COMMITTEE
The federal autism committee was created in 2006 to provide non-binding guidance to the government on strategies and opportunities for government funding on autism research worth about $2 billion annually.
It has traditionally consisted of parents of people with autism, autism self-advocates and researchers, as well as government officials.
The majority of autism research was funded by the government in recent years, according to the federal committee. The independent group will focus on shaping priorities for research not funded by the government.
Kennedy's overhauled federal committee includes members who have promoted discredited autism treatments, such as chelation therapy, which removes heavy metals from the body. Kennedy, a long-time anti-vaccine activist, has tied vaccines to autism and has claimed that no vaccine is safe.
“We needed to take real action to ensure continued progress in autism science," said Alison Singer, president of the Autism Science Foundation and a member of the new committee. So "it's critical for the non-governmental funders to work together.”
The independent committee plans to mirror the meeting schedule of the federally appointed group. The agenda for its first meeting on March 19 calls for it to address concerns about the resurgence of non-evidence based and possibly dangerous treatments espoused by some members on the federal committee, Singer said.
(Reporting by Robin Respaut; Editing by Caroline Humer and Bill Berkrot)
