Adverse reaction data for alternative therapies for autism?

21 Sep

Edit–Note that ARI has changed their webpage language:

One factor of alternative medicine is that it is impossible to make an informed decision on risks and benefits. Without data on either, all one has is anecdotes. This is especially troublesome, to me at least, when it comes to risks. What are the adverse events associated with a given alternative medicine treatment? This became clear when an industrial chelator was offered as a “supplement” and the proprietor of that business was quoted as telling his clients to report adverse reactions to him, avoiding the FDA.

The Autism Research Institute (ARI) has promoted alternative therapies for autism for some time, even maintaining a list of therapies with survey results claiming high effectiveness. They also maintain a page on adverse reactions. But without any emphasis on informing people about adverse reactions to alternative therapies.

Here is a quote from that page:

Unfortunately, before the drugs are prescribed to their children, parents are not usually informed of the possible dangers related to the drugs. ARI urges all practitioners to inform their clients about the possible adverse effects associated with every treatment or medication that they recommend to their clients.

Many individuals on the spectrum suffer from seizures, and most of the drugs commonly prescribed to these individuals may lower the threshold for having seizures. We have also listed those drugs that are associated with seizures along with a link.

If your son/daughter experiences side effects from receiving prescribed medications, please contact the FDA at: http://www.fda.gov/medwatch or call 1.800.FDA.1088 (1.800.332.1088).

In addition, parents can learn more about possible side effects, as well as benefits, associated with various treatments by reviewing the results from our parent treatment survey. The survey findings are based on over 26,000 responses, and include a large number of biomedical interventions, including drugs, nutritional supplements, and diet.

One is given the information about how to report a reaction from “prescribed medications”, but not for alternative therapies or supplements. Or so they present it. The page they link to isn’t the direct reporting site. Instead, one must follow a link on that page to https://www.accessdata.fda.gov/scripts/medwatch/medwatch-online.htm. There you are informed that you may “Click the BEGIN button to report serious adverse events for human medical products, including potential and actual product use errors and product quality problems associated with the use of:”

FDA-regulated drugs,
biologics (including human cells, tissues, and cellular and tissue-based products)
medical devices (including in vitro diagnostics)
special nutritional products and cosmetics

emphasis added.

So, the same site where ARI sends people to report “side effects from receiving prescribed medications” can be used (and should be used) to report side effects from alternative therapies which are not prescribed. But parents are not encouraged to make such reports. Which, again, limits the public’s ability to estimate the risks involved with these therapies.

On the ARI page are links to adverse reactions (both ARI’s own discussions as well as links to external sites which publish accepted adverse reaction information) for various therapies. Will you learn about the “occasionally severe” skin reactions that occur with the chelator DMSA? No. Deaths from IV chelation? No. Will you hear about the autistic child who was a test case for the Autism Omnibus Proceeding who appeared to have significant adverse reactions to chelation? No. No one in the public would have heard about that were it not for the Omnibus.

ARI makes a major distinction between “Drugs” and “Biomedical/Non-Drug/Supplements” as therapies. Is this a valid distinction? ARI lists “Transfer Factor” as one of their “BIOMEDICAL/NON-DRUG/SUPPLEMENTS”, claiming that autistics “got better” 5.9 times more often than they “got worse”. But no data on what adverse reactions there are. No links. “Transfer Factor” is not a drug to ARI. It is worth noting that it was a drug to Andrew Wakefield. He attempted to patent Transfer Factor as a therapy and as an alternative to the standard measles vaccine.

The question of whether alternative therapies are presented such that one can make an informed decision is an important one. Raising the question is generally guaranteed to garner the reaction: “he’s anti-cure”, or “he’s against treating autism” or the like. But clearly the argument here is simple: are people being given the ability to make an informed decision about alternative medical treatments used for autism? The answer is simple as well: no. They are not.


By Matt Carey

8 Responses to “Adverse reaction data for alternative therapies for autism?”

  1. Science Mom September 21, 2012 at 16:52 #

    It appears rather obvious that ARI wants to obfuscate resources to report “biomed”. Sadly, many who have observed adverse reactions due to these nostrums don’t report it and are given excuses by their so-called healthcare practitioners that “it just means it’s working”. The children are ultimately the silent victims and that angers me.

  2. megan September 25, 2012 at 00:39 #

    I tend to agree that people are not given the ability to make an informed decision and it ends up hurting them.

  3. Jane Johnson September 25, 2012 at 21:15 #

    Mr. Carey,
    At ARI, we believe that ALL adverse events should be reported; your assertion that ARI is encouraging families to report adverse reactions to prescription medication and not treatments that may be considered alternative is correct, much to our embarrassment. This page has been up for some time and has not been updated. We would like to thank you for bringing this to our attention; rest assured this was not our intent. ARI believes strongly that every intervention should be evaluated and all adverse reactions to any treatment should be properly reported to help guide safe, effective treatments for every person with an ASD. Our priority is to help inform parents and professionals on effective interventions, and encourage and facilitate research to find answers to ensure every person with ASD has the opportunity to have a healthy, productive life. We will update the information on this page ASAP to ensure that families have the information and contacts necessary to report any and all adverse reactions to all treatments. We know this data is crucial to inform not only best care now, but also future directions of research.
    Sincerely, Jane Johnson (managing director of ARI)

    • Jen in TX September 27, 2012 at 00:58 #

      Oh looky, LBRB readers… it’s Jane Johnson… the Johnson & Johnson pharmaceutical heiress who paid Andrew Wakefield gobs of money to torture baby monkeys in order to further the idea that thimerosal and/or MMR causes autism, thereby helping to divert precious time and resources away from finding the real cause(s) of autism. So nice of you to drop by. Will you also be updating ARI’s website to include a section on the sulfate and glutathione depleting properties of acetaminophen (aka TYLENOL), Jane? Or is that information strictly for Yahoo! group members and conference attendees only?

    • Sullivan (Matt Carey) September 27, 2012 at 06:11 #

      Ms. Johnson,

      I appreciate you taking the time to consider these points and to comment. I very much appreciate the corrective action. I’ll update the article above to reflect this.

  4. lilady November 18, 2012 at 21:51 #

    Spammer alert above.

Trackbacks/Pingbacks

  1. An update: Adverse reaction data for alternative therapies for autism? « Left Brain Right Brain - January 24, 2013

    [...] apologies for how long this took to put online: Last September I wrote an article Adverse reaction data for alternative therapies for autism? In it I pointed out how the Autism Research Institute (ARI) had a different standard for reporting [...]

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