On March 3, a group of autism researchers and advocates announced the creation of an independent advisory body to help guide autism research priorities, according to Reuters. The group held its first meeting on March 19, which was also when the federally mandated Interagency Autism Coordinating Committee (IACC) would have met, had the meeting not been canceled on March 7.
The Independent Autism Coordinating Committee (I-ACC) will work in the same way the IACC does. It will create a strategic plan for autism research with priorities centered on scientific discovery and improved care for autistic people. The I-ACC includes some former members of the IACC, as noted on STAT, such as Joshua Gordon, former National Institute of Mental Health director, and Alison Singer, president of the Autism Science Foundation. The 12 members are mostly researchers, while the federal IACC’s members mostly focus on advocacy.
The I-ACC’s leaders see their group and future actions “as a direct rebuke of health secretary Robert F. Kennedy Jr. and his decision to refashion the federal body with members who align with his views on autism and vaccines, instead of preeminent researchers and autistic self-advocates,” noted STAT.
“We don’t believe that the new federal IACC is going to pursue the kinds of areas and priorities that the mainstream scientific community feels are important at this point,” said Helen Tager-Flusberg, a member of the new group and director of the Center for Autism Research Excellence at Boston University.
In fact, the remade IACC plans to use research funding to investigate causes of autism, as well as other issues like co-occurring medical disorders, according to some panel members, as noted in a March 5 Reuters article. The new members include some with ties to groups that promote claims linking vaccines to autism as well as some who have recommended discredited autism treatments, such as chelation therapy, which removes heavy metals from the body, according to a Reuters article published on March 3.
The I-ACC will not consider the same issues that the IACC does but will determine which topics need attention, in order to inform the decisions of non-governmental funders, Tager-Flusberg said in the STAT article. The I-ACC will meet on the same schedule as the federal committee to counter misinformation that may result from the meeting. If, for example, IACC plans to discuss vaccines and autism, the I-ACC researchers will host a meeting and discuss the existing evidence on the topic on the same day.
The I-ACC is the second group formed to push back against misinformation from the federal government. Last year, the University of Minnesota’s Center for Infectious Disease Research and Policy created the Vaccine Integrity Project to assess and publicize best evidence on vaccines, noted a STAT article. The group includes more than 80 stakeholders including clinicians, academics, public health officials, insurers, and industry leaders.
Sherri Alms is the freelance editor of The OARacle, a role she took on in 2007. She has been a freelance writer and editor for more than 20 years.