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Repairing Autistic Children…
By Kent Heckenlively, JD
I’ve spent fifteen years as an autism activist and probably written close to a million words on the subject. This may be the most important topic I’ve ever written about.
I’ve put together a petition on the White House web-site for them to talk to the scientist I believe may have the best guess on how to end the autism epidemic, Dr. Robert Naviaux of the University of California, San Diego.
I assembled all the arguments I thought would conceivably convince 100,000 people to sign the petition in a month, then went to the web-site to type it all in. I could only use eight hundred characters. Not eight hundred words. Eight hundred characters! That’s just a few paragraphs.
I have a very brief explanation of why people should sign the petition, but to me it’s not complete. If you already feel fully informed on this issue, please feel free to go to the bottom of this article, click on the link, and sign the petition. (And thank you!)
IF you need a little more information, please keep reading.
Suramin is a medication developed more than a century ago to treat African Sleeping Sickness, a disease caused by a parasite. The medication was used SAFELY for more than seventy-five years and was very effective.
In the 1980s suramin was used by researchers investigating treatments for cancer and HIV-AIDS. These high dosages caused significant toxicity and death.
In 2008, Dr. Naviaux became interested in the question of autism and a possible etiology. He thought that a common process known to biologists as the CELL DANGER RESPONSE might be at the root of autism, as well as many other chronic diseases, such as chronic fatigue syndrome (ME/CFS).
Naviaux’s cell danger theory of autism proposes that when cells encounter some chemical, virus, or micro-organism that they can’t identify, (immature immune system or novel substance) they may respond by shutting down communication with other cells, prompting a decrease in energy produced by the mitochondria. If this cell danger response becomes stuck, then a chronic disease state may persist.
The persistence of this cell danger response has been quantified by Naviaux through the use of a mass spectrometer to identify the unique pattern of metabolites (cellular signaling molecules.) He identified and published on this pattern in autism and has also published SEPARATELY on a unique pattern of metabolites in chronic fatigue syndrome (ME/CFS).
Naviaux identified a previously approved medication, suramin, which would quiet the cell danger response. It is called anti-purinergic therapy.
Naviaux then proceeded to perform three animal studies demonstrating that suramin could at least temporarily normalize this cellular communication and the animals would demonstrate behavioral changes.
The first group Naviaux used were mice who had autism induced through ‘maternal immune activation’, a commonly accepted proxy for autism. (Antipurinergic Therapy Corrects the Autism-Like Features in the Poly (IC) Mouse Model, PLoSOne, 2014)
The second group was mice who had autism induced in a similar manner, but were the human age equivalent of thirty years old. (Reversal of Autism-Like Behaviors and Metabolism in Adult Mice with Single-Dose Anti-Purinergic Therapy, Translational Psychiatry, 2014)
The third group was genetically designed to have Fragile X syndrome, often called ‘genetic autism.’ (Antipurinergic Therapy Corrects the Autism-Like features in the Fragile X (Fmr1 knoclout) Mouse Model, Molecular Autism, 2015.)
All three groups showed normalization of their metabolites and signs of behavioral changes.
Naviaux has recently completed and published a small human trial, showing the normalization of cellular communication in these children with autism, and for at least a time, the resumption of normal development. (Low-Dose Suramin in Autism Spectrum Disorder: A Small Phase I/II, Randomized Clinical Trial, Annals of Clinical and Translational Neurology, 2017)
The dosage used for these children was 5-15% of the standard protocol for African Sleeping Sickness which has been used safely now for more than a century.
The patients in the Naviaux study attained blood levels of suramin of 5-15 um. Previous usage of suramin obtained blood levels of suramin of 50-100 um for a period of 1-3 months. The high doses for cancer chemotherapy produced blood levels of 150-270 um for a period of 3-6 months. I know YOU can do the math to understand that this is a cautious approach.
Let me put it in practical terms. Assume you have a headache. You decide to take one aspirin a day. The bottle says you COULD take up to ten a day, but you think that’s excessive and you have some concerns. A bunch of scientists say, let’s see what happens when you take twenty-seven aspirin a day. Not a surprise, there are problems.
Dr. Naviaux is a one aspirin a day kind of scientist. This is NOT an approach to try to KILL SOMETHING. It is an approach which seeks to RESTORE BALANCE TO THE BODY, namely proper cellular communication.
Naviaux has theorized that depending on the severity of the disease and associated delay, patients may require infusions of suramin every six to eight weeks for a period of one to two years. By that time it is likely that the cellular communication pathways will be fully formed and operational. This treatment is probably best likened to a cast, which allows the broken bone to heal, but can then be removed.
Dr. Naviaux is thorough and cautious. He wants to proceed safely, but he wants to move forward. It is WHY so much of my petition rests on his abundant good scientific judgment, which comes through so clearly in all of his published work and accompanying literature.
In my petition I made three REQUESTS:
REQUEST #1 – The White House meet with Dr. Naviaux within 30 days of the petition being presented and direct him to develop a treatment protocol for physicians to safely use suramin for autism and any other conditions which he believes to be the result of an abnormally persisting cell danger response.
REQUEST #2 – The White House issue instructions for suramin to be made available for this limited purpose in the next 60 days. Because of the toxicity problems found at HIGH doses utilized by researchers in the 1980s, the use of suramin is currently restricted to those with a documented case of African Sleeping Sickness.
REQUEST #3 – The federal government make certain that Dr. Naviaux’s work is FULLY FUNDED and establish a monitoring system to assess the effectiveness of the treatment, the safety, and if successful, how such treatments might be improved.
Okay, everybody, you know what to do now. Let’s get to work, end this epidemic, and get on with the next stage of our lives.
I will be on Del Bigtree’s show, High-Wire, this Thursday, June 15, 2017, at 11:00 am (PST) discussing suramin and my book, INOCULATED: How Science Lost its Soul in Autism.
By Kent Heckenlively, JD