Dec 10, 2003
My question is on what constitutes informed consent. In 1998 I was placed on Nevaripine as part of my triple therapy. During counselling, the condition Stevens Johnson Syndrome (SJS) was mentioned, but I was told that is was a 'one in a million chance' and that if it occurred it involved a bad rash that would clear up if the drug was ceased. Three weeks later I developed SJS, which proved to be far more devastating than I was told - in additon to an all over body rash, I had open sores around my lips and in my mouth that prevented me from eating (I lost over 30lbs in two months); rectal ulceration, that made it pure agony to use the toilet - and, most seriously, severe ophthalmic consequences, that started a chain of events that has left me completely blind in one eye. I had to come off all ARV treatments for four months, during which time my indicators plummeted to extremely hazardous levels. I am currently seeking legal recompense, but have been told by one medical expert that it is not usual to counsel patients on SJS because of its relative rarity. I argue that I WAS counselled, but incorrectly and inappropriately and that therefore my doctors are culpable in negligence. Do you think they acted appropriately - and are there any other people out there who have suffered with SJS as a result of Nevaripine? (I am based in the UK, and am thinking about starting up a pressure group about this issue, as I know there is one in the US - - Tony)
Response from Dr. Henry
I have had several patients who also developed severe reactions to nevirapine. I am not sure that I counseled them any better than what it sounds like your doc did with you. We often don't do a very good job. In the old days we more often put patients on treatment sooner rather than later which further aggravated the problem of not having educated the patient as well as possible. My usual practice these days is to give detailed information about the regimen I am considering to use 1-2 visits before starting it. At the next visit I review the information is some detail. We also now have a pharmacist help out (not available to many of us years ago). I very much sympathesize with your bad experience. KH
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