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US Take Action: Autism Mom Nominated to Head the National Institutes of Health. Is that a good thing?
The United States Senate Health, Education, Labor and Pensions (HELP) Committee voted today to approve Dr. Monica Bertagnolli as President Biden’s permanent successor to head the National Institutes of Health (NIH). Now Bertagnolli must be approved by a vote of the entire Senate.  There are several questions we would like our Senators to ask Dr. Bertagnolli prior to the vote. 

Bertagnolli is a prominent cancer surgeon, and is the current head of the National Cancer Institute. She is also the mother of an adult son with autism, a fact mentioned in very few articles about her. 

The NIH is the federal government’s medical research behemoth that spends $47 billion per year and sets the parameters for almost all medical research in the US, and is the largest funder of medical research in the world. 

Since 2021 NIH Principal Deputy Director Lawrence A. Tabak has served as acting director of the agency after former NIH Director Francis Collins stepped down from his long-held position in December 2021. As the former head of the Human Genome Project, Collins emphasized genetic research at the NIH. An approach that dominated autism research during Collins’s tenure. 

Collins’s time as the Head of the NIH was a disaster for autism research. It was bereft of any significant advancements in our understanding of autism. No treatments were developed, no causes identified. The generation old question, “Is the autism rate going up,” remains unanswered according to official sources. But more than 125 genes have been identified as suspects in playing a role in autism.

While Collins was in charge of the NIH the autism rate among American children increased from 1 in 88 when he took over the NIH to 1 in 36 when he left, according to the CDC’s Autism Developmental Disabilities Monitoring Network. One might expect that an exponential growth rate in a debilitating disorder that begins in childhood might cause alarm. But no. The now predictable increases in the autism rate are always greeted with the same response that we are not really sure if it is a real growth rate, even though special education programs and adult services for people with autism are overwhelmed with a steady growth of 10% to 15% every year. There is no effort to adopt methodologies that would provide definitive answers about the growth. No one in authority ever uses the word “epidemic”. Instead we are told that we must “accept” and “celebrate” autism. 

We know that there is no such thing as a genetic cause of an epidemic. Epidemics are caused by changes in the environment. But the response from the NIH is always to do more genetic research. 

Perhaps as the mother of a son with autism Bertagnolli will change the NIH’s priorities and redirect scarce resources to accurate epidemiology, prevention, potential treatments, co-mordidities, and causes other than yet another genetic study. But perhaps not. Some of the most rigidly resistant people to new information about autism are parents of children with autism, witness Peter Hotez. So far, we have not found any statements by Bertagnolli about autism.

TAKE ACTION: 

Please use the panel to the right to send messages to the two US Senators from your state asking them to ask Bertagnolli the questions below, and feel free to modify or add other questions. 

  • What do you intend to do about the NIH’s failure to determine if the autism rate is going up?
  • Do you think the data so far indicates there is an autism epidemic?
  • Do you intend to continue focusing on genetic research rather than environmental causes for autism?
  • Do you think the resources devoted to autism, and the NIH autism research priorities, are commensurate and correctly directed for a disorder that now affects nearly 3% of all American children?

 

Please share this message with friends and family and please post to social media by sharing this link: 

https://www.votervoice.net/AUTISMACTION/Campaigns/108607/Respond

 

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