A few people have written to me that a rumor is circulating on the internet- apparently a doctor reported to a patient that two patients have died on AIDS drugs. I first heard this rumor a couple of months ago from a patient in Europe who heard it from a doctor there. Both of these doctors attended the same events in Reno last month, so I presume they communicated about this and are talking about the same two patients. In the reports that I heard, there was no other meaningful information given. It seems to me, that under the circumstances, it is incumbent upon the reporters to provide specific details of the cases. Since patients are making pivotal decisions based on very little scientific information, it is not responsible to attempt to influence by rumor and innuendo. Complete clinical information is essential to make use of the risks that others have already taken. I have never seen an example where transparency from the practicing physicians was more needed.
If any X+ patients taking AZT, tenofovir and/or raltegravir have died, nobody wants to know about it more than I do. I invite, no beg, the doctors spreading this rumor on both sides of the Atlantic to share the pertinent details. The patients who are in the process of making a decision about whether or not to pursue treatment now, need to factor in all relevant information; they should have any available data. Without the kind of detail I’ve been providing, any statement about AIDS drugs killing people is meaningless fear mongering. And if it is true that the spectrum of response to antiretrovirals runs all the way from near recovery to death, well then, clinical trials and a full-court press from the scientific community are even more urgent than I thought. It seems highly unlikely, however, that anyone has died as a result of the three drugs in question. These drugs simply don’t have adverse effects that would be fatal. They are not new drugs and the adverse effects are very well understood.
This seems a very good time to say again what I have said all along. I am not advising anyone to make the same decisions that I have, but I do think that everyone should have that right. Waiting to participate in a clinical trial is reasonable for many, but for those who feel they can’t wait, or won’t wait, there’s nothing magical about a clinical trial. They give you the drugs and see what happens.
We have a little more information now than when I started antiretrovirals. It seems to be more difficult for many to get on the drugs than I expected from our experience. Also response to treatment is more variable and slower than I would have anticipated. All of this needs to be factored in with each individual’s particulars in partnership with a knowledgeable, or at least interested physician who is willing to learn.
There is a small, but growing coalition of doctors committed to helping now and in the future- committed to keeping up with a shifting landscape. The unmet need is too great to stick to business as usual. Many physicians have become inured to the suffering. I think that will break down as the science penetrates the medical culture and new physicians become interested. I encourage any doctor reading who wants to help to get in touch. Participate in this journey of discovery. Patients all over the country are looking for physicians willing to work with them. I am happy to serve as a connection point.
Why now, all of a sudden, is everyone so worried about CFS patients taking drugs that may not help? How ridiculously paternalistic! Apparently some of our doctors think that we aren’t smart enough to assess all of the available information. What’s our problem anyway? Why not let them decide for us? Haven’t the authorities done a great job figuring it out for us up until now? At this point in time, it’s clearly the patients who are most able to connect the dots.