Monday, 20 October 2008

Campaign to stop quackery for 'treating' AIDS and malaria





Following on from some serious discussions with such legends of the blogosphere as Ben Goldacre, gimpy, jaycueaitch and others (aka after a chat over some beers in a London inn...), I decided to write the following 'open letter' that I intend to forward to charities, NGOs, United Nations, anyone that may have an interest in preventing the use of 'alternative medicine' in the 'treatment' of AIDS and malaria. This arises from recent exposes of dangerous practices in Africa, detailed in the letter below. Before you read on, please note that the idea is that you, kind blogger/reader, also take a copy of the letter, edited as deemed appropriate, and pass in on to an organisation of your choice. And then blog about it, write comments here, and generally feel smug about trying to make a difference etc. Anyway, here's the letter:


Dear [name of NGO/Charity/organisation, better still a named Officer thereof],

I am writing to raise the issue of so-called ‘alternative medicine’ in [Africa/India/region of interest], and in particular the potentially fatal marketing strategies employed by practitioners of homeopathy, nutritionism and related therapies.

As covered comprehensively in recent issues of The Guardian newspaper (for example here and here), the notorious pill salesman Matthias Rath has been exposed as a charlatan selling vitamin tablets to those suffering with terminal illnesses including malaria and AIDS. He is not alone; as covered in detail in several investigative weblogs (for instance, see here , here , and here), there are many clinics offering homeopathy and vitamin supplementation to desperate patients in Botswana, Ghana and elsewhere in Africa. It is worth clarifying that although there is some (albeit disputed) evidence that multivitamins may slow disease progression in AIDS (1), there is no evidence to support the use of such supplements as large-scale interventions (2) and there is even less cause to revert to homeopathy. Note that homeopathic ‘remedies,’ which contain no active ingredient , simply do not work any better than placebo; arguably harmless when administered to treat a cold, but potentially lethal when given in place of proven anti-retroviral drugs and/or effective malarial prophylaxis.

It is this latter phenomenon that is most concerning; specifically, the advice to use alternative therapies instead of, and not as well as, proven evidence-based interventions may be costing lives. In [my/our] opinion your vital organisation is in a very strong position to counter these dangerous practices by ensuring that the public in the regions in which you operate are fully informed.

[I/we] would like to know if your organisation has encountered purveyors of such ‘alternative medicines,’ and if so, what action you have taken to ensure that sugar pills and vitamin supplements do not replace proven treatments. It is in the communities mentioned above that direct action is required. There is a very real possibility that lives are being needlessly lost today as a result of unproven, effectively empty pills being promoted ahead of proven drugs. This tragic scenario must be averted immediately, which is why [I/we] are asking for your help.

[I/we] acknowledge that many anti-retrovirals are expensive, hard to obtain and may have significant side-effects; nonetheless they remain the most effective barrier to AIDS disease progression. Ditto malarial prophylactics; unpleasant side effects aside, together with mosquito nets they form a vital defence against a disease that still kills one million people a year [http://www.cdc.gov/malaria/impact/index.htm]. Please try and respond to the questions below where possible; the reputation and presence of your organisation is of utmost importance in spreading the message that vitamins and homeopathy cannot treat life-threatening conditions.

1) Has your organisation had to deal with clinics/services selling/prescribing homeopathic remedies targeting either malaria or AIDS?

a. If yes, please give details

2) Does your organisation have a policy designed to prevent such services from spreading, or to educate members of the public against the use of unproven remedies for life-threatening disease?

a. Again, please provide details

3) Are there any governmental, non-governmental or local authorities or individuals that may benefit from being better informed about the dangers of using homeopathy and.or vitamin supplements in malaria and AIDS?

a. If yes, please either pass on their contact details to [me/us], or pass on this letter to them and send [me/us] a copy of any subsequent correspondence.

[I/we] appreciate you taking the time to read this letter, and I hope that you share in my/our concern over the serious danger the use of homeopathy and vitamin pills, particularly in place of conventional treatment, represents. I look forward to hearing you response on this matter of urgency.

With warm regards,

Yours etc,


References:

1) Fawzi WW, Msamanga GI, Spiegelman D, et al. A randomized trial of multivitamin supplements and HIV disease progression and mortality. N Engl J Med 2004;351:23-32

2) Marston B, De Cock KM, Multivitamins, nutrition, and antiretroviral therapy for HIV disease in Africa. N Engl J Med. 2004 Jul 1;351(1):78-80


Tips on sendiing the letter? Obviously, delete the red text as needed - the "we" is included mainly if you wish to gather many signatures, say from faculty or just from other people, and send the letter as a collective. I'd also suggest removing the hyperlinks if you plan to send the letter by snail-mail, which is something I'd strongly urge - perhaps in tandem with an electronic copy, for maximum impact.


Please send the letter to any and all charities, NGOs, medical organisations, professors, bin men, AIDS patients... basically anyone who you think would be an appropriate recipient. And please, just to fuel my ego, please leave a comment here once you have - you don't have to acknowledge in the letter where it came from (I'd rather you didn't actually, to avoid accusations of a vexatious campaign), but I'd like to know whether this lands on the desk of even one influential organisation.


Malaria and AIDS cannot be treated with sugar pills - we must, must do our utmost to prevent the loss of life this practice could cause. Join in, send the letter, do your bit!


EDITED: letter shortened (2nd edit, link to guardian stories altered too) according to suggestions on badscience forum, please let me know any other changes you think need to be made!!

1 comment:

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