Some guidelines doing more harm than good (update)
Jan 29, 2012
Dear Dr. Wohl: Please accept this more substantiated (and hopefully less critical) version of the message I submitted yesterday under the same title. I do value the work of the experts who assist with sites like The Body and appreciate that these are complex issues. If anything, I am just scared and frustrated and just needed to say my peace. Thank you, - Very Scared. ----- Dear Sir: This message would normally have been for Dr. Bob as it is follows a question he answered on 16 July 2011 (Sex and Symptoms: http://www.thebody.com/Forums/AIDS/SafeSex/Q216243.html). I apologize in advance for its length but there are some issues I need to get off my chest relating to (in my opinion) the expert communitys over-reliance on certain guidelines to the detriment of HIV prevention. Last July I ingested of a couple of drops of breast milk while having protected sex with a prostitute in South America. I thought about but did not take PEP. More than anything I felt very self-conscious about the incident and probably just wanted to put it out of my mind. How wrong I was. After about a week I started to have symptoms and e-mailed Dr. Bob, who felt all would be fine. My condition would soon worsen to include swollen lymph nodes behind my right ear, muscle ache in my lower back, sudden and drastic weight loss, complete and prolonged loss of appetite, severe malaise, night sweats, exhaustion, an oral ulcer, rash on my left arm and swelling in the left side of my abdomen. Three weeks after the incident (now back in Canada), my GP sent me for an antibody test (4th gen duo), which returned non-reactive. In all, I have tested at weeks 3, 4, 6, 12 and 22 - to my surprise, all non-reactive. I also tested negative for VRDL (week 3) and HCV (week 22) and (for what it is worth) a general white bood-cell count at three weeks came back normal. My health is usually excellent. Still concerned over the type, severity and timing of my symptoms, at week 25 I presented at an STI clinic for a rapid test but the public health nurse said she did not want to perform one given that I was well outside of the window period (nominally three months) and that, in any case, the ingestion of breast milk was not considered an vector for HIV transmission in adults. She went on to suggest that my issue was psychological. I promptly left without taking the test but I feel it is just a matter of time before my worst fears are confirmed. This brings me to my first point. With regard to testing advice, even on this forum the three-month limit is often presented as definitive with the six month marker recommended just for peace of mind. In reality, there are documented cases of people seroconverting later and what is billed as definitive is actually just conditional probability. Please, by all means make things as simple as possible but not simpler. On a related note, it is understood that the ELISA is the diagnostic standard and that in most cases it suffices to take a 90-day test. However, assuming PEP was not used, then RNA/ DNA testing at one month is truly definitive. However, use of this type of test seems to be discouraged, often without a full explanation. If you recommend against direct testing for diagnosis, then at least be very clear that the problem regards the potential of false positives, not false negatives, and let the person decide if it is worth the anxiety. My second point regards breast-milk as a vector of transmission. Even the oft-cited HIV Equation limits it to mother-to-child cases when, in fact, there have been several, very credible, studies showing that susceptibility is not age dependent. (The Journal of Infectious Disease, 15 June 2004). This is a shocking oversight for such an important guideline. Despite this, the likelihood of adults acquiring HIV from breastmilk is deemed only hypothetical due to a lack of documented cases. However, studies that have tried to assess the risk in adults admit that act is very hard to isolate and, in the event of an infection, is assumed the cause was unprotected sex (which typically accompanies any nipple sucking). What we are left then is a set of guidelines that (incorrectly) interpret the lack of direct evidence as a lack of risk. When dealing with an undisputedly highly contagious bodily fluid, would it not be better to err on the side of caution and advise people accordingly? http://www.aidsvancouver.org/get-informed/faq/what-hiv-transmission-equation http://www.nichd.nih.gov/news/releases/pediatric_aids.cfm http://www.ncbi.nlm.nih.gov/pubmed/15181561 http://www.thebody.com/Forums/AIDS/SafeSex/Q214973.html My third point relates to PEP. Even Dr. Bob (who himself used an early single drug treatment) indicated he would not automatically prescribe it in cases involving confirmed exposure to HIV. In his replies on the subject he would often use the very official - some might say ambiguous - reference to it being indicated for certain cases. Indicated? Indicated by what? This is anything but a direct, ringing endorsement for a potentially life-saving intervention and the rub is that many people (myself included) who read posts that discourage its use will be far less likely to request it even if they are legitimately at risk due to an exceptional event. I think this a travesty and, in Dr. Bobs case, I find it especially hard to believe that someone living with HIV would ever recommend against it in any case that involved a confirmed exposure to HIV. http://www.thebody.com/Forums/AIDS/SafeSex/Q191206.html I realise that a lot of factors must be taken into consideration when prescribing PEP, but I feel that guidelines on the subject are out of step with reality to the detriment of people at risk. The traditional critiques against the non-occupational use of PEP have been largely refuted. For instance, studies have shown that people who resort to PEP are actually less likely (and not more) likely to engage in risky sexual activity as a result, and that when administered in multi-drug regimens within 24 hours and taken for the full course, it IS extremely effective. In a society that makes the morning after pill readily available in the case of a mistake, it is a shame that all but the most progressive agencies do not promote its use to prevent something far more catastrophic than an unwanted pregnancy. I cannot help but think that somewhere the guidelines for the non-occupational use of PEP have been affected by a value judgement against the people who might need it by those who regulate it. It may seem that I do not appreciate the role played by guidelines, but this is not the case. My criticism relates to instances where general rules of thumb are presented as irrefutable fact, and where other agendas come into play to detriment of advice that would actually increase prevention. Your thoughts on any of the above would be greatly appreciated. Thank you. - Still Very Scared.
Response from Dr. Wohl
I agree that each case of exposure requires an assessment of risk. In your case that was done. Even though the risk was extremely low to nil, you were seen at clinics, examined (presumably), and then tested (repeatedly) despite your incredibly low risk. As it turns out you are HIV negative
From a public health resources standpoint repeat testing ad infinitum plus a viral load thrown in at least once for all the worried well (or at least those who write in to this forum) would cost quite a bit of change and probably not reveal a single case of HIV infection. Similarly, PEP is best used in cases where exposure risk is sufficient. This again takes judgement. A few drops of breast milk may not reach this threshold.
Guidelines provide guidance. They are not the 10 commandments and all clinicians must use judgement in each case they encounter. For example, often I recommend more extensive testing for peace of mind in those convinced they are infected when all other evidence points in the opposite direction. However, with the newer antibody plus p24 combination assay, the need for a viral load is obviated.
So, in all you are correct that closely hewing to guidelines in all cases is not good medicine, but using clinical judgment to determine that a guideline is appropriate in a particular case very often is. DW
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