HEAL London

Health Education and AIDS Liaison - a more intelligent approach

Can You Trust Your HIV/AIDS Doctor?


smiling doctor with stethoscope around his neck
Trust in a medical professional really comprises of two separate parts:
  • Is their knowledgeable reliable?
  • Will they behave with integrity?

The main thrust of HEAL London is challenging the medical orthodox perspective of AIDS and therefore asserting that in many respects most doctors knowledge of HIV/AIDS is not reliable. That will be the subject of a separate article, “How could so many doctors be wrong?” . But can HIV/AIDS doctors be trusted to behave with integrity though? And that itself can be broken down into two parts:

  • Will they give you an unbiased assessment of the risks and benefits of both diagnostic tests and treatments?
  • Will they tell the truth as they believe it to be?

The evidence from my experience is that for those two criteria HIV/AIDS doctors are not all trustworthy. It does not mean that all will lie, but there seems to be such a high proportion that will at the minimum mislead their patients that essentially the ability to trust AIDS specialist doctors has broken down.

It has become apparent to most people diagnosed HIV positive that doctors will tend to overplay the benefits and underplay the side-effects of AIDS drugs, or risks of serious and irreversible harm such as death. When one patient had complained of debilitating side-effects of the drugs he was prescribed, I witnessed the doctor telling his patient that in a large city there were thousands of patients taking AIDS drugs, with hardly any side-effects. “Most of them don’t even know they’re taking them”, he said, which to me seemed such an extraordinary exaggeration compared to the overwhelming volume of medical literature documenting serious side-effects in a much higher proportion of people taking AIDS drugs than that it was tantamount to a lie. It was as if he was trying to persuade the patient he was wrong in experiencing those side-effects.

Some AIDS clinicians will admit that side effects are frequent. In House of Number when Brent Leung interviews two pharmacists specialising in HIV treatment in South Africa, when asked, “How often do you see side-effects in patients?”, they replied, “All the time / almost all the time”. When asked if any patients had died from the side effects one of them replied, “Sometimes. It happens”. Michael Gottlieb, the doctor who first reported cases of PCP in five gay men admitted that “In the years that we’ve been using ‘the cocktail’, we’ve found that there are lots of side effects”. Martin Delaney of Project Inform said, “With what we have now, the side effects are going to outweigh the benefits”. One of the most senior researchers in AIDS, Jay Levy MD, said, “Some people are very fortunate, they don’t have these side effects, but many people do, so prolonged treatment is impossible”.

In other words, if you don’t have significant side-effects, you’re in a very small minority. So any AIDS doctor who massively plays down the side-effects, or tries to make you feel as though you’re the only one of his patients who is having serious symptoms, then they are either deluding themselves or blatantly lying. And misinforming patients over medical decisions contravenes the principles of informed consent, such that consenting to a medication or treatment that does you serious harm that you wouldn’t have taken if you’d been informed of the risks versus benefits more accurately, is called assault and is technically a criminal offence. However, the police are often reluctant to intervene directly and you may need to go to court to prove that you were misled first.

As a specific example, Sustiva is a drug acknowledged to be capable of triggering feelings of depression and suicidal thoughts. A close friend of mine who took one dose one day when he got scared about not taking any AIDS drugs described having terrifying nightmares and vowed never to take it again. One patient who had never previously felt suicidal tried to commit suicide when he was taking Sustiva, Luckily he did not succeed, but when he was in the ‘attempted suicide recovery’ ward he was shocked to discover that half of the people in that same ward had also been taking Sustiva. This suggests that for that given catchment area, the unsuccessful attempted suicide rate doubled as a result of that one drug alone. Subsequently, his own AIDS doctor participated in a TV documentary and in describing Sustiva said it could cause, almost as an afterthought, “maybe a little anxiety”.

But exaggerations and understatements are one thing- Surely doctors aren’t going to downright lie blatantly? Unfortunately, this also happens. Here are some examples:

  • One patient who had been religiously taking his AIDS drugs was told by his doctor that his liver enzyme levels had gone high and the medication would have to be changed otherwise his liver would pack up. He subsequently sent him to get an X-ray . On the way the patient stopped to take a look at the notes he’d been given to hand over. He was shocked to discover that instead of the patient’s imminent liver failure being blamed on drug toxicity it was instead blamed on ‘patient non-compliance’. In other words, the doctor had transferred blame from the drug to the patient. This may have been a scenario where the doctor was deliberately under-recording drug toxicity for some reason and ensuring that the patient’s records matched what he was reporting somewhere else for audit purposes. Most people of course never actually look at their medical records so in most cases he’d get away with it. The patient was too frightened to take any action.
  • One pregnant patient was declining to take AIDS drugs while pregnant and didn’t want AIDS drugs given to her baby when born either. The doctor, in a bid to persuade her, told her that all the children born HIV positive who were not given AIDS drugs died of pneumonia in the first year. I knew she didn’t have evidence to support that claim so when I attended a visit with the patient I brought up this claim. The doctor denied ever having made such an extravagant claim in the first place.
  • One elderly patient was in hospital recovering from pneumonia – for known reasons – and declined to have AIDS drugs in front of both medical staff and witnesses saying she wanted more time to think about it. When she was given her nightly pills she asked what the new one was and was told one night it was for Shingles and another night it was for constipation. It made her very unwell and the day after the second dose she asked the Matron, who admitted it was one of the AIDS nurse’s drugs. It turned out to be Atripla. The patient said, “You mean I’ve been duped?”. Having been previously very trusting of medical professionals she subsequently suffered panic attacks that made her seriously unwell that she admitted to me were due to not feeling able to trust doctors any more.
  • One patient had experienced extremely severe symptoms immediately after starting AIDS drugs. The way she was handled by the AIDS specialist clinic was seriously negligent. After less than a week she stopped taking them against the advice of the doctors because her symptoms were so bad she feared she would die if she continued taking them any longer. When starting legal action and was looking at her medical notes she was shocked to see documents that indicated she’d had almost identical symptoms a year previously when not taking those drugs, as if a deliberate attempt was being made to shift the blame for the side-effects on something else. The patient just stared at the documents, trying to find some justified reason for them that did not include deliberate fraud, and said in disbelief, “But he was my friend”. I pointed out that he was only being her friend while she continued to follow his advice and didn’t sue him.
  • Another patient had suggested to his doctor bringing me to a discussion about his diagnosis and recommended treatment. The doctor point black declined saying he was perfectly clear about his position and didn’t need to discuss it with anyone. When the patient got their medical notes it had a letter to another doctor saying the complete opposite – that the doctor had suggested having a meeting with the person assisting the patient but it had been declined, and wondering if the patient had a history of mental illness!! The patient rang me as soon as he read this, stunned at such a blatant lie was written in his medical notes. After being challenged the doctor wrote an apology, calling it a 'typo'. It appears the word 'typo' now means "A blatant lie I thought I'd get away with but have had to correct because I was found out".

That’s just a few examples. Some of these we have incontrovertible documentary evidence of, some I personally witnessed, some are the subject of ongoing or impending legal actions.

But what has struck me though is the degree of shock and disbelief patients experience. Even when the evidence was incontrovertible, some patients have struggled to find some interpretation that enabled them to let the doctor off the hook, as if it was just ‘some administrative error’ or confusing one patient for another. Patients have struggled to believe that a doctor, someone who had seemed so friendly and supportive, in a position they’d grown up believing they could trust, could ultimately be so deliberately dishonest against them. The short answer to that is that they seemed friendly and supportive while you were doing exactly what they wanted. That some can reveal their true nature in such a shocking way has come as a seriously rude awakening to some.