RRP ISA Survey Results

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    Rumors of Toxicity, Ridicule and Racism

    I was talking to an otolaryngologist buddy a few days ago before an unsubstantiated rumor flew across the RRPF listserv (no blame whatsoever to the RRPF, whose listserv is helping to network people), that artemisinin is toxic. This, despite the fact that the World Health Organization recommends it for kids as young as two years old.

    The otolaryngologist and I shared similar speculations.

    The rumor looked similar to the false rumor that Obama is a Muslim. Such rumors spread with viral speed on the Internet. The person who posted it absolutely meant no harm. He was passing along an opinion (itself unsubstantiated) from another person.

    It is important to address it forthwith, however.

    Also, a small number of patients have reported that they discussed using artemisinin with their physicians, but were shot down. I wasn't present, and I couldn't say for sure what happened, but these patients reported that they felt ridiculed.

    First, let's look at the rumor of "toxicity."

    Our website states very clearly that one must be very careful in dosing. As long as overdosing doesn't occur, and the guidelines I followed did not seem to involve overdosing, all is expected to be well. For more, also see http://rrpwebsite.org/index.cfm/fuseaction/category.display/category_ID/357/. I am not a physician, however, and am not qualified to dispense medical advice. These are the guideline I myself used; they may or may not be optimal for other patients. More testing needs to occur to determine optimal dosing schedules. You are reminded to check with your physician if you have questions, and always consult with him or her in using any adjunctive treatment for RRP, including artemisinin.

    The World Health recommends artemisinin for children as young as two years old. A very real two year old (Amy's son Denver) DID take ART for RRP, and Mom said she followed the guidelines as posted on the website. Keith's son followed the guidelines and nothing untoward happened. Others have reportedly done this as well. As far I know, our dosing guidelines are generally within treatment guidelines for the use of ART for malaria. Toxicities don't seem to be an issue.

    Yet given the allegations of ridicule, however, something else may be happening, and it may be fairly  unconscious. All kinds of qualifiers and caveats need to be put on any speculations, of course, and it is indeed speculative at best without a lot more data. Still, it deserves to be explored.

    First of all, let us say that physicians naturally are reluctant to endorse herbs and naturopathic remedies not approved by the FDA. I understand that reluctance and generally tend to agree it when it comes to RRP. I myself--and countless patients from whom I have heard--have tried almost everything. Most holistically-based interventions don't work very well.

    But off-label use of drugs that have been FDA approved--even cidofovir, I believe--occurs all the time. The FDA takes an average of over 10-13 years to approve a drug. It rarely looks at off-label usage.  The mystique of FDA approval, therefore, only goes so far.

    Artemisinin is already endorsed by the World Health Organization, and approved by medical authorities all over the world. It is not considered by these agents to be naturopathic. One can reasonably expect hat it has been thoroughly tested in malaria-stricken locales by agencies analogous to the FDA. It is manufactured for use overseas by established pharmaceutical houses, similar to Merck, etc.

    As our website says, it is also being used with increasing frequency in oncology circles even in America, and articles have been published in respected journals showing that in some cases, it is at least as effective as chemotherapy.

    My point is that artemisinin is not a untested article, and any physician claiming to be even marginally informed on the subject should already know this.

    So let's be ask what the resistance to the use of artemisinin might be.

    One basis for resistance is doubt about the sourcing of the artemisinin. It is entirely reasonable for a physician or patient to at least have the following thoughts:

    1.  Hmmm.  This medication is apparently outside the U.S. pharmacopoeia, somewhat like the long list of herbal remedies that one can obtain here without a prescription (think ginko, black cohosh, Echinacea, etc.)

    2.  My understanding is that not only have these herbs not been systematically tested for benefit, but in some cases, spot checks have revealed that some formulations don't even contain what the bottle says they do . . .

    3.  Hmmm.  Salmonella on tomatoes; lead in the paint used on toys; Hmmm . .

    I don't think one can or even should avoid having some musings like this. They're more in keeping with issues relating to "due diligence."

    Part of the basis for further resistance to use artemisinin is the relative lack of data on its use in RRP. But interesting data already exists, as you can see from reading the material on RRP ISA's website (www.rrpwebsite.org) under Learn>Novel Therapies, and pages appended to that section.

    I also presented on this in September 2007 at the RRP Focus Session in Washington D.C., to be found here. Keith and Randy recently  reported on their positive experiences with artemisinin on the RRPF's listserv. RRP ISA's people have reported as well.

    Where things begin to be concerning is when patients receive ridicule from their physicians for suggesting artemisinin as a possibility. Ridicule isn't an established scientific method. It goes beyond mere skepticism.

    What would account for an attitude of ridicule or summary dismissal?

    Could it be that there might not ALSO be yet another kind bias that's perhaps also fueling some of the "resistance" amongst certain physicians or patients who approach the subject of artemisinin?

    This would be a kind of bias that might never be discussed out loud. It is almost certainly unconscious, and its roots are essentially racist.

    To regard ART as just a Chinese folk remedy in approaching RRP, for example, reflects an unconscious attitude that is essentially prejudicial in nature. I would gently observe that the medical world isn't exempt from that sort of thing. Neither are patients.

    No matter that this artemisinin has been elaborately refined, not unlike the mold from which antibiotics are made, or that it is used extensively in medicine.

    If there is any bias arising from the Oriental flavor of this medicine--and that's a big IF that is probably not operative in most cases and might never be consciously affirmed even if it were a motivational factor in a few--it is fundamentally unworthy.

    Unfortunately, what isn't data-driven in America is all too often characterized in medicine as either superstition, witchcraft or fluff. Is that kind of exclusionary attitude really justified, however? 

    Sometimes very primitive prejudices--even unconsciously (in this case, reptilian) racist prejudices--take on an overly lofty exterior appearance.

    I am not asserting that this is in fact the single basis of resistance to ART as an adjunctive tool for RRP. It most likely isn't. There are many qualifiers to insert, many contingencies. But yes, I am asserting that this could one of several dynamics at work. It would absolutely explain some of the ridicule.
    I3C was picked up by a major RRP research institution with arguably far less scientific background material than artemisinin had even two years ago. Did physicians ridicule patients who wanted to try I3C or DIM, based on Dr. Leo Bradlow's experimental findings with animals? I think not.

    Could it not be because I3C and DIM, like penicillin before that, were unconsciously viewed as Indo-European? Artemisinin, even though is was used on dogs at Georgetown University and on millions of humans before that in malaria treatment, is in some cases not given the same dignitarial status as I3C/DIM. Why might that be?

    Here, I am proposing that a number of answers exist to these questions, only one of which (not to be reductionistic) might involve an unconscious racist bias. 

    I am emphatically not suggesting that this is a prevailing attitude  amongst physicians or patients. I am quite sure it is not. Still, I cannot help but feel some need (it's indubitably the social worker in me) to address this issue.

    At the very least, it should invite some degree of self-examination.

    In closing, it is important to acknowledge that most otolaryngolgoists NEVER even treat RRP, and the few that do try to steer by their best lights. Artemisinin is simply too new, it is on too few physicians' radar screen, and there have been even fewer patient reports on its use.

    This accounts for most of the resistance. My point is that it doesn't account for the ridicule.

    Thus far (6/28/08), I have heard from five patients who have tried ART and GARD. Every one of them (or their mother) reported dramatic success. The operative word is "dramatic." I have thus far heard of no "failures."

    In the end, I suspect that it will be the patients, not the oncological community, who will make things happen. They will begin testing this on their own as an approach, whether or not the scientific community signs on.

    My hope is that by the end of this current year, RRP ISA will have several takers for our fairly generous grant offer, and it will indeed be a refined grant proposal that is selected, a worthy proposal.

    Already, a handful of doctors are beginning to experiment with ART and Gardasil as adjunctive treatments for RRP. We just need to be patient.

    Michael Green, Executive Director
    Intl RRP ISA Center