Albert Enayati, co-founder and board member of SafeMinds, testified in front of the Interagency Autism Coordinating Committee (IACC) at its January 2016 meeting, to support SafeMinds’ recommendation of forming a workgroup on co-occurring conditions with autism. He stressed that there “is an urgent need for a workgroup to follow promising treatment leads, shepherd existing treatments through clinical trials and facilitate FDA approvals and/or mainstream acceptance.” His full testimony follows.
My name is Albert Enayati. My son regressed into autism after receiving seven vaccines in the space of two days.
Today, I would like to expand on the SafeMinds recommendation to establish a workgroup under the IACC to investigate co-occurring conditions. Many of the most disabling or fatal features that are present in a person on the spectrum are co-morbid conditions. These conditions are amendable to treatment. There is an urgent need for a workgroup to follow promising treatment leads, shepherd existing treatments through clinical trials and facilitate FDA approvals and/or mainstream acceptance. This group would require membership from within the committee as well as significant representation from the broader autism advocacy and research communities. An example is Isaac Kohane, MD of Harvard Medical School[i] who was invited to speak to the IACC in the past and who has the knowledge to advise IACC on this topic. Over the history of the IACC, there has been no coordinated effort to develop treatments for people on the spectrum.
Despite 1.6 billion dollars in spending, parents still have few options that have been proven effective. Risperdal and Abilify are only appropriate for certain symptoms and have significant side effects. We can and must do better. In 2015, researchers at Johns Hopkins University Medical School in collaboration with Massachusetts General Hospital for Children determined that chemicals extracted from broccoli sprouts may help ease autism symptoms[ii] . In another published paper, researchers at Stanford University found that symptoms of autism can be caused by a gene mutation that both blocks the body’s natural production of endocannabinoids and also interferes with the way cannabinoids communicate with the brain[iii]. These leads need immediate follow-up and there is currently no mechanism to ensure this.
There are existing medications such as antibiotics, pioglitazone (Actos), and naltrexone that need further study in autism. In addition, there are vitamins and supplements such as folinic acid, melatonin, methyl B-12, carnitine, folinic acid, probiotics and tetrahydrobipterin that have preliminary evidence of efficacy, but need further study. Lastly, many psychiatric medications are prescribed off-label for those with autism despite lack of properly controlled clinical trials and long-term safety studies in this population. A toll-free number and the IAN surveys should be used to collect community input on treatments to be investigated and to report side effects as a way to include the broad community’s input. All of these areas need the concentrated attention of a dedicated workgroup to move the research forward. Perhaps most importantly, this workgroup should play a key role in identifying the biomarkers associated with various comorbidities, assessing what treatments might help, and shepherding these treatments through clinical trials. For example, someone with a co-occurring phenotype of PANDAs and tics will have an underlying immune problem (biomarker) and can be treated with an existing and validated intervention (IVIG) for PANDAS. Or, someone with co-occurring irritability and glutathione imbalance can be helped by N-Acetyl Cysteine treatment. We need to investigate broadly what differentiates the biology of people with autism compared to controls and pursue treatments that make sense. Related to all of this, I must draw attention to the fact that the IACCs database of published research in autism is now ridiculously out of date[iv].
The web tool which is designed to allow analysis of IACC’s research only includes articles through 2010. The 2011-2012 Portfolio Analysis Report has been “Coming Soon” for two years now. In 2016, it is imperative that the coordination and availability of research funds have oversight. A 2013 report by U.S. Government accountability office (GAO)[v] concluded” Eighty-four percent of the autism research projects funded by federal agencies had the potential to be duplicative.” Of the 1,206 autism research projects funded by federal agencies from fiscal years 2008 through 2012, 1,018 projects were potentially duplicative because the projects were categorized to the same objectives in the IACCs strategic plan. While some replication is necessary, you, the new committee, have the responsibility for making sure that the tax dollars entrusted to you are spent in ways that will benefit our loved ones. People with autism and their families cannot wait for the glacially slow rate of progress that has characterized autism treatment research. They also cannot afford to try 10 things that may or may not work.
To help those with incapacitating anxiety, severe pain, refractory seizures or other medical problems that severely impact quality of life, we must create a roadmap of simple testing, and validated treatments. And it must be done now – not 20 years in the future. Our children need help today.
Sincerely and respectfully,
Albert Enayati, MSME
