This piece originally appeared at the Huffington Post …
Apologies if this post turns into something of a rant – but I think you’ll soon understand, and hopefully share, my frustration.
A week or so ago, I attended a meeting of an ethics committee to discuss an opt-out testing strategy for HIV, Hepatitis-B and Hepatitis-C in the medical admissions unit of my hospital. Rather than sending my registrar, whose project it very much was, I knew we might be faced with one or two awkward questions which would require some personal experience in dealing with the usual objections to routine testing.
What happened, however, was beyond even my belief. Walking into the room, I saw eight people – predominantly doctors – and I could tell that at least five had already made up their minds to reject the project. It started predictably: “Well, we have spent a lot of time discussing this very interesting project, but have some significant concerns.” That was why I was there – to allay their fears and get on with this important project.
That was not to be. The committee were concerned that, despite the “very interesting” nature of the opt-out testing project, our plans could potentially change the way that we test for viruses such as HIV, Hepatitis-B and Hepatitis-C. “Yes,” I replied, “that is the purpose of the pilot study.” The retort was immediate: did I think the public were ready for such a move?
Faced with opening questions like this, I knew the next ten minutes would be difficult and the interview likely take much longer than the time allocated it. I asked the committee to clarify what sorts of problems the public might have with opt-out testing. Another member was quick to help: “If somebody comes to hospital and is not expecting to have an HIV test, then surely it is unfair to do a test that will affect their insurance and mortgage?”
My proverbial head fell into my hands. If I hear this canard one more time, it’s possible I may resort to strangulation. Please allow me to reiterate once and for all: taking an HIV test does not affect your insurance premiums. This is something that went out in the early 1990s, along with, “You shouldn’t have a test at your GP because it will be on your records”. Almost all pregnant women now have HIV tests – 98% of them take up the test with no problem at all.
“But that is about two people, not an individual!” offered a third member. Certainly, HIV tests of pregnant women can save lives of two people; but an opt-out test in medical admissions can still save one. Through opt-out testing, we can diagnose those who may not know they have one of these viruses. People generally come into hospital because they are unwell, potentially seriously ill, and it is our job as medics to diagnose them and treat them. The patient may not think they have HIV; but they may also not think they have leukaemia. Yet we don’t avoid testing for cancer.
The committee persisted in their concern that patients were not explicitly asking for an HIV test, but would be given one anyway unless they opted out. I emphasised that posters and leaflets would be on prominent display, explaining that the HIV and hepatitis tests were routine in our hospital, and that anyone, should they change their mind, could call the service within 24 hours to ask that their blood not be tested. Why, the committee then asked, do I not instead simply ask each patient to write a written consent form?
Twenty minutes had now elapsed.
It has been shown that, whenever a healthcare professional applies their clinical judgement as to whether an individual requires an HIV test, testing rates fall by over 50% (a sad indictment of medical training). This tells us that tests should be routine. It tells us that we have to step away from the prejudices, lack of awareness and education of healthcare professionals. We simply have to make the test part of the wider package of care. “But what happens,” yet another committee member chipped in, “if that tests finds someone to be HIV positive?”
A long silence follows. “Then we would have saved that person’s life,” I reply.
The reason people die of HIV-related illnesses today is that they are diagnosed too late. Today’s medication is highly effective and can provide those living with HIV a near-to-normal life expectancy. These drugs work best, however, when we diagnose people early. When a blood test returns a white cell count so high that it is obvious the patient has leukaemia, doctors do not wring their hands over whether he or she originally asked for the test; we contact the patient, we inform them further tests are needed, and we get down to treating the cancer. There’s no reason HIV testing should be any different.
So why is it? Stigma. Lack of education. Lack of awareness. We were now thirty minutes into a ten minute interview. Despite my curled toes and tightened fists below the table, I can tell that one or two of the committee members are experiencing the dawning realisation that they may not quite have understood all of this. I am asked if my hospital supports the project; I say, yes, it is simply good medical practice and in fact all relevant learned medical societies recommend routine testing in emergency admissions units and new GP registrants if the local prevalence of HIV is higher than two in 1,000 (at my hospital, it’s approximately three in 1,000). I am asked if we would proceed with or without the ethics committee’s approval; suppressing a groan, I say that I have come for approval in order to silence those individuals who are looking for an excuse to avoid routine testing – because of their own stigma, their own lack of education, and their own lack of awareness.
Of course, this project now looks about to founder on precisely these familiar old rocks. Instead, I assure the committee that if required, I am sure I could ask my chief executive to send a letter of support that afternoon. Some discussion ensues: if this project goes ahead, what will I say to the Daily Mail? This one’s easy: I would say, “Isn’t it fantastic that we’re talking about HIV testing in the Daily Mail?”
Forty-five minutes later, I leave the room. I feel battered and bruised. I hope, though, that the eight people I leave behind have something to think about. People ask me why I’m involved in the Saving Lives charity. This experience reaffirms to me exactly why.
Oh, and by the way – I have just heard whilst on holiday that the project did not gain ethics approval! At least the sun is shining in North Yorkshire. Time to recharge the batteries before a return visit to the ethics committee …