The error was bad enough…
Hospital infected teenager with HIV then kept diagnosis secret
An NHS hospital kept a teenager’s HIV diagnosis secret from him after accidentally infecting him with the virus and testing for it without his knowledge.
Martin Beard, now 50, wants answers from the Infected Blood Inquiry, which begins examining what has been called the “worst treatment disaster in the history of the NHS” tomorrow. More than 2,400 NHS patients were killed and as many as 25,000 were infected by blood products contaminated with HIV and hepatitis C in the 1970s and 80s.
Mr Beard was among thousands of haemophiliacs treated with Factor VIII, hailed as a “miracle drug” to aid clotting. It emerged years later that almost all those treated were infected with HIV, hepatitis C or both.
The drug was made by “pooling” plasma from thousands of blood donors, including prisoners and drug addicts in the US who were paid. If even one donor was infected, the whole batch was contaminated.
Mr Beard, from Burton-on-Trent, was treated from infancy at Birmingham Children’s Hospital (BCH), but transferred to North Staffordshire Hospital aged 17, where he first attended with his mother in September 1986. “We opened the doctor’s door,” Mr Beard said. “He didn’t even say ‘hello’ or ‘sit down’. His first words were, ‘I see you’re HIV positive.’ ”
…but in a way the attempt to conceal what they had done was more shocking.
The Times article by Kaya Burgess continues:
A year earlier Mr Beard had been treated at Leicester Royal Infirmary. The Times has seen a letter sent by a consultant in Leicester to a registrar at BCH [Birmingham Children’s Hospital]. Dated October 1985, 11 months before Mr Beard learnt of his illness, it states: “We note that he is HTLV 3 [HIV] antibody positive, but is not aware of this and that you do not wish this to be divulged to him. We shall make every effort to comply with your wishes.”
Medical errors will always happen. Some “cures” that seem wonderful at first will always turn out to have long term side effects, or, as in this case, to be worse than the disease. We can try to minimize such things but we can never eradicate them because they arise from the nature of discovery. If we knew in advance what worked and what did not we would not need research, we would just apply the wonder treatment the angels had told us about.
But for doctors to conceal from the victim of their own mistake the terrible harm they had done, and for no better reason other than to cover themselves… words fail me. Although Mr Beard was eventually made aware of his condition in the most brutal fashion, apparently more because someone did not get the memo to keep it secret rather than from any desire for honesty, other haemophiliacs who were not told of their diagnosis unknowingly infected their sexual partners who went on to die.
Consider those words in the consultant’s letter “We note that he is HTLV 3 [HIV] antibody positive, but is not aware of this and that you do not wish this to be divulged to him. We shall make every effort to comply with your wishes.” A senior doctor who had attained the exalted status of consultant could not possibly have been unaware of the potential dire consequences of hiding from this boy (as Mr Beard then was) the fact that he was HIV positive. Yet this consultant blithely promised to “make every effort” to comply with the wishes of his or her fellow doctors to perpetuate the conspiracy of silence, as if that were the honourable course of action.
Consider that the behaviour of that consultant was widely replicated throughout the NHS. It seemed normal. It was just what you did.
But, but, but — we benighted Americans keep getting told that government-run “free” NHS is wonderful, the very essence of what it means to be a Brit. 😉
More seriously, it is of course a dreadful breach of appropriate professional conduct for the NHS to attempt to hide a person’s medical condition from him, especially if this is just to cover up their own mistake. Heads should roll.
Even so, something about this case makes me ambivalent. The unfortunate individual suffered from haemophilia — for most of history, that was effectively a death sentence, even if your father was the Czar of Russia. The guy was apparently infected with HIV when he was a kid; learned about the infection when he was 17; and is now 50. That is 33 years later, and he is still alive. There are a number of ways to look at this.
One is that the medical profession has kept a guy with a historically-deadly condition alive for 50 years and counting; so their performance is not all bad.
Another is the suspicion that “HIV” all along was another of those junk science scams — mistaking correlation for causation. The predictions in the 1990s that we were going to lose an entire generation to an HIV epidemic turned out to be as reliable as all those other junk science catastrophic predictions. If HIV had infected Mormons instead of (mostly drug-taking promiscuous) homosexuals, we would never have heard about it.
The NHS is a Stalinist organisation, demand your Medical Record because Doctors will never tell you the truth.
Didn’t the UK jail someone for having unprotected sex while knowingly HIV positive? I’m fuzzy on the details, but I’m sure I remember something along those lines.
The people involved are, I assume, facing some kind of manslaughter charges right now?
I don’t know about the UK. But the state of New York definitely did. Reckless Endangerment in the second degree.
That may well be what I’m thinking of, it’s a vague tugging of my memory.
Either way…so, these doctors, I can expect them to be up on charges, right? Amirite?
It was just what you did.
And it worked splendidly. How much more relaxing it must be to be the 2019 NHS Minister, or NHS administrator, or High Panjandram or whatever to be apologosing for the grievous faults of his predecessor of thirty years ago; than to be the fellow who has to apologise for something he’s actually responsible for, in real time.
People are always very rude about cover-ups, “worse than the crime”, “evidence of a guity mind”, “how did they ever think they’d get away with it?”
But in truth a cover-up is a great tactic, and most times it works just fine.
In economic terms it’s pretty much a free option. Heads I win, tails I’m stuffed. But if I fess up I’m stuffed anyway, so even if I lose it’s a draw. And best of all, it doesn’t have to work forever. Just till the vesting of the pension.
I look forward to the Guardian article citing these events as proof of the perfection of the NHS.
Well I guess it depends how you’re made. I could never sleep knowing about it…
“…hiding from this boy….”
AND HIS FUTURE PARTNERS.
Individuals have been jailed for knowingly infecting sexual partners.
Why is it any different if the knowledge is held elsewhere.
Natalie, thus:
“…[O]ther haemophiliacs who were not told of their diagnosis unknowingly infected their sexual partners who went on to die.”
I add: “If these partners had babies, the babies would have been infected too.” I personally had a friend whose female cousin (IIRC) had a transfusion of HIV-infected blood. She did die of AIDS, but not before giving birth to a child with AIDS.
I’m glad that Mr. Beard has lived so long, but in the first place he was certainly entitled to know of his condition; and we can only hope (we don’t know, from the story as told above) that he didn’t infect anyone else along the way.
But while the story is about Mr. Beard in particular, the point applies much more broadly, to anyone who is HIV-positive and isn’t told, because of the ripple effects of his (or, unfortunately, in some cases of her) own actions. (See the excerpt quoted below.)
. . .
By the way. Some catastrophes predicted by “junk science” don’t come true specifically because somebody comes up with a way or ways to avoid them before they occur — such as the treatment of AIDS with one of the “cocktails.” One article about this is from the University of California at San Francisco (UCSF). Excerpt:
https://ari.ucsf.edu/about-us/history-aids-ucsf
Another interesting article, “The Era of AIDS,” is at
http://whsc.emory.edu/home/publications/health-sciences/emory-health/summer11/the-era-of-aids.html
One pertinent excerpt from the article (my boldface):
O/T — By the way, I noticed this statement from the article:
Julie — Remember that no-one — not one single person — has ever died directly from Acquired Immune Deficiency Syndrome. They died from other ailments such as pneumonia or cancer, and then the death was ascribed to AIDS, and hence to HIV. The range of ailments which got included in the AIDS-related category kept expanding — with the broadening definition giving the impression of a growing epidemic. By 1989, 142,000 cases of AIDS were reported by governments worldwide — but the UN World Health Organization estimated the real number was 400,000. Who are you going to believe? … and the answer is not WHO.
The money really started flowing as the scare was drummed up into a really big deal. In 2003, President G. W. Bush committed $15 Billion (that is Billion!) to his Emergency Plan for AIDS Relief. The deaths of car accident victims in Africa were listed as AIDS-related. Lots of people were making lots of money out of the AIDS scare — including medical researchers. The temptation for junk science was there.
In the US, deaths classified as AIDS-related peaked as long ago as 1996 at 38,780 — around 1% of all deaths in that year. By 2017, that had dropped to 7,800. A big difference was the development of a specific test for the HIV virus; to be counted as AIDS-related, it became necessary to demonstrate the presence of HIV — not simply to be in a risk group and have died of one of a long list of diseases.
One of the difficult questions to answer is whether the HIV virus was a causative agent or an opportunistic fellow traveler in an already-weakened body. There were animal tests where monkeys were injected with HIV — and survived OK. But those who doubted the HIV/AIDS connection were of course assumed to be anti-homosexual. Political Correctness and science do not mix well.
The premature death of any human being is a tragedy. But was the AIDS scare junk science? It certainly had some of the characteristics of politically-driven junk science. It has been a while since I looked into the AIDS scare in detail. If there is now definitive evidence it was not junk science, I am very willing to listen.
Well, if AIDS is not, technically speaking, a cause of death, it’s still true that any serious depression of the natural immune system is to some extent an enabler of disease, and those often do result in death.
I do see your point; but we often say (or hear) that “the chemotherapy itself killed my friend.” Radiation therapy after a successful cancer surgery killed my best friend, not directly but because she caught pneumonia and her immune system was too depressed to save her.
A lot of people (in absolute numbers — I have no idea statistically, but I daresay it’s a relatively small percentage) do die of disease that they can’t fight off because cancer treatments have depressed their immune systems. Does that mean we should quit wasting time and spending money looking for some way to prevent cancer in the first place?
Your other points are certainly worth addressing, whether in agreement or disagreement. But it’s late, and I needs me supper. Besides, I don’t really have any answers to them. :>)
“So, these doctors, I can expect them to be up on charges, right? Amirite?”
Given that the NHS (or doctors in its employ) systematically murdered hundreds of patients over several decades by dosing them full of heroin when there was no medical requirement for it (the Gosport hospital scandal: https://www.bbc.co.uk/news/uk-england-hampshire-46924754), and no one has ever so much as seen the inside of a court room over it, I wouldn’t hold your breath over this little example of the ‘caring NHS’.
Gavin Longmuir (April 30, 2019 at 1:44 am), AIDS is not junk science. Although you are right that it
PC and AIDS in other ways interacted counter to the norm for such things – for obvious reasons.
AIDS was outed (one might say) at the start of the 80s by the lifestyle of the homosexual community in San Francisco, which was peculiarly suited to spreading the syndrome on a scale that made it quite unmistakable something real was happening. That context made AIDS seem both quite new and rapidly-growing. Unless you think PC made it harder than it should be to think clearly about that context – doubtless it did a bit, but whether PC was the main cause of the (slight, to my mind) mis-emphasis is debatable – I don’t blame the early analysts for their assessments either on PC or other grounds.
Political correctness was never absent, of course.
– There are distant analogies (also, one may note, certain obvious differences) between the way all the usual suspects jumped on the anti-islamophobia bandwagon after 9/11, which often included opposing sensible precautions, and the way all the usual subjects condemned disease-as-metaphor thinking as soon as AIDS appeared, which condemnation often included opposing such sensible precautions as screening blood donors for risk factors. And that brings us back on-topic: the OP errors occurred in a PC context that would not have discouraged them (whether that deserves to be phrased more harshly, I do not know).
– Trivially, the MSM did a most thorough job (which they could not do today, in the age of twitter et al), in keeping out of the public domain the various paranoid conjectures about what those wicked homophobes had of intent cooked up in their secret CIA labs that circulated within that community in the early days. Less trivially, the difference between primary homosexual, secondary drug injection, tertiary transfusion, vectors that were so important in the west, as against the heterosexual vectors that played a larger role in Africa, was thoroughly obfuscated (as far as the PC could do so) – not to the benefit of public health AFAICS.
Summary: one could write a long (even longer than my comment 🙂 ) essay on PC aspects of AIDS but it would be writing on a secondary issue, in part because PC was conflicted over it. Or at least, that is my 0.02p FWIW.
BTW Natalie had a post long ago on AIDS research, which suggested that the way PC interacted with AIDS research funding was sometimes counter to the spend, spend, spend norm.
That’s some really awe-inspiring “free health care.”
The parallels with the Tuskegee Experiments are striking, although there are (of course) dissimilarities as well.
One thing I cannot quite glean from the coverage is whether the people who were kept in the dark about their HIV status were nonetheless treated for it, or whether the coverup extended to withholding treatment as well.
Note the usual, snide, anti-American bias slipped into the article, to wit
” . . . .including prisoners and drug addicts in the US who were paid.”
as though blood supplies from the US are carefully and specifically sourced from paid drug addicts. Nice confusing use of grammar there, as well. Were the prisoners in question in the US or the UK, and were they paid? You could read this any one of a number of ways.
Not a single tainted source of blood from a UK source – really? It was all those American drug addicts that caused the problem – were it not for them, none of these people would have contracted these horrible diseases as a result of NHS treatment? I think I’m starting to see a meme here . . . .
The other parallel that I’m drawing here is with the child abuse scandals in the Catholic church. Horrible things are done to innocent people. And the first reaction of those in charge – even though they may not have done these things themselves, or even known of their doing – is to cover it up. The first loyalty – the first impulse – the default reaction – is to protect the organization, no matter what. Others have drawn parallels between the NHS and a state religion many times before this, and here’s another one.
llater,
llamas
One would hope that such terrible things as this would make people question state domination – but most people will NOT. As the system is sacred to most British people.
And as government subsidies and regulations push American health care costs UP AND UP (which they have been doing for DECADES now) so private health care will die in the United States – and most people will become dependent on state control there as well as here (to the cheers of the Economist magazine – and the rest of the “liberal” establishment elite).
It is very hard to have hope – to have any hope at all. The high costs of American health care are created by GOVERNMENT INTERVENTION – but they will be used as an excuse to impose government domination.
Very simple solution. Kick their house doors down at 4Aam, seize all property. Make them burn what is unsaleable in front of them, sell them rest, infect them with HIV (and a few other fun things), issue them with a bell, bow and cowl, and outlaw them.
Niall: “AIDS was outed (one might say) at the start of the 80s by the lifestyle of the homosexual community in San Francisco …”
A discussion on another thread touched on the issue of what it takes to make someone change his mind. As a personal example — as a one-time resident of the San Francisco Bay Area, I was (like most people) concerned about the AIDS epidemic which was going to cost us an entire generation. So I started paying attention, and came across various reports that did not quite fit.
The monkeys injected with HIV virus which did not develop AIDS. The HIV-infected mothers who delivered HIV-carrying babies who quickly became uninfected once out of their mother’s wombs. The rapid increase in reported AIDS-related deaths in African countries once international funds started flowing to those countries which reported big problems. The good scientific medical research which could now find funding because it could be positioned as AIDS research. The people with compromised immune systems who did not have HIV — and were in some cases dying from the same diseases which were being called AIDS-related. And the sidelined researchers who were asking whether the HIV virus was causing the compromised immune system, or was simply an opportunistic infection of an already compromised system?
But what really opened my eyes to the potential for junk science was coming across President Eisenhower’s 1961 Farewell Address — the one in which he warned about the “Military-Industrial Complex”. Immediately after dealing with that, Eisenhower (who had been president of Columbia University after WWII and knew what he was talking about) raised the issue of the potential for the politicization of research. To quote the President:
“The prospect of domination of the nation’s scholars by Federal employment, project allocations, and the power of money is ever present and is gravely to be regarded.”
I stand by my guess that if the young men with compromised immune systems had been Mormon missionaries instead of San Francisco homosexuals, AIDS would have remained another one of those many obscure diseases about which most of us never hear.
In recent years, I’ve come to suspect that I may be a gayer / puddle jumper / homersexualist (* delete as appropriate)
My reason for this suspicion is the fact that a 25 year old French guy seems to enjoy spending time with me and when exhausted by the days distractions and irritations, climbs into our rather cramped little double bed in Perth, Scotland and snores like a trooper.
More worryingly, his views on BRExit are distinctly dubious with an occasional scent of “Not total disapproval”… For the sake of maintaining harmony within the household I have kept these thoughts to myself…
I was originally led to believe that such behaviour would cause the collapse of Western Civilisation through a combination of HIV/AIDS, the wrath of god and plagues of locusts, but the most likely outcome is insomnia and irritation with a partners snoring. The world’s most mundane complaint, if ever there was one.
The only side effect of all of my obvious happiness is eye rolling in straight friends (of which I have many) rather than random outbreaks of homophobia. Welcome to “Being gay in the 21st Century”, less the experience of Oscar Wilde and more like an episode of Last of the Summer Wine. Armistead Maupin it ain’t.
As for HIV/AIDS, it was something I became paranoid about in the 1980’s thanks to the horrors of the Tories disastrous and frankly overblown AIDS – Don’t Die of Ignorance Campaign of the 1980’s, which made having sex with guys as appealing as Russian Roulette.
Did any of my friends / acquaintances / partners die of HIV/AIDS? Nope. Not a single one, since none of us were stupid enough or degenerate enough to fuck rando’s in bathhouses or the follow the more quaint English traditions of “Cottaging”.
Does that mean that HIV/AIDS was overblown? Perhaps… but maybe it was better to suffer from an excess of caution over a sexually transmitted disease that is quite hard to pass on (except in the petri dish environments of the gay bathhouse and/or heroin den) than to just continue lives of unsustainable gay abandon.
Looking at the problem today, obesity and diabetes seem to be greater killers than HIV/AIDS, but that’s a real general population problem than HIV/AIDS ever was…
Many years ago, I was peripherally involved in a lawsuit against several bloodbank-type businesses brought by 400+ hemophiliacs who had been infected with AIDs through transfusions.
While the PC-driven aspects of AIDs no doubt incentivized its study, the rising numbers of hemophiliacs suffering from, and dying of, AIDs would have triggered such an effort on their own. It was that research that came up, in the late 1980’s, with the test that allowed blood donations to be screened for AIDs, effectively ending this scourge. Without that test, blood donations would still be highly problematic.
Sit through enough depositions of AIDs-sufferers – especially the very young ones – and you’ll lose all doubt that this was a devastating and scary disease. Review the transmission and frequency details from that time period, and you’ll see – because of the many possible vectors of transmission – that it truly had the potential to become an epidemic. We all dodged a bullet.
bobby — I am not heartless. I have never had any doubt that the diseases to which those with compromised immune systems are susceptible are horrible; and I have no doubt those diseases are equally horrible when they afflict people who do not have Acquired Immune Deficiency Syndrome.
What I do have doubts about is whether the HIV virus caused the compromised immune system, or whether it simply took advantage of an immune system which had already been compromised, most likely by drug use and generally unhealthy behavior.
I do not understand what you mean by “many possible vectors of transmission”. Choose not to have promiscuous homosexual sex; choose not to use recreational drugs, especially with needle sharing — and one’s chances of being exposed to the Syndrome become very low. Most people avoided those vectors of transmission (or perhaps mechanisms for compromising the immune system?), and that is a large part of why the predicted massive ‘lose a whole generation’ epidemic never occurred.
Undoubtedly, the supply of blood for transfusions should (and could) have been kept much safer. In our world of limited resources, think what could have been accomplished if the tidal wave of money & brains poured into investigating the HIV virus had instead been invested into the development of long-sought synthetic blood? Junk science carries many different costs.
For interest’s sake — how many of those 400+ hemophiliacs exposed to HIV through (otherwise life-saving) blood transfusions died from AIDS-related diseases? Not playing games — I am seriously interested.
Nope, not what I meant. Sorry if it came off that way.
You name two. You could also contract it as a baby being born, or through breastfeeding. You could get it if blood from an infected person entered a cut or scrape on your skin – putting medical caregivers at huge risk. You could get it by receiving a blood transfusion.
My point was, prior to the huge expenditure of money and effort on effective drugs, the number of people contracting HIV-1 or full-blown AIDs was expanding at the near-exponential rate normally associated with pandemics, and was spread though many different communities and groups. It was only because of this expenditure that that expansion was stopped. Now, many people do just fine with HIV and AIDs, because of the drugs that were developed – but this wasn’t a sure thing at all. It took a huge and expensive effort.
To see what life would be like here without such an effort, look to Africa – where the drugs are too expensive and the people too poor to buy them. IIRC, something like 40 million people in Africa have had AIDs or HIV-1, and about 20 million people have died from it.
By the time this lawsuit was in my view, the screening tests were already in place, as were effective treatments. Those who were doomed had already died. My memory of the numbers is dim, so I looked at an old NYT article. One quote:
“The advent of a screening test in 1985 rendered the treatment essentially free of the AIDS virus. But in earlier years, close to half of all hemophiliacs (approximately 15,000 in the US) became infected with the virus, studies indicate. And among the group with the most severe disorder – a group that constitutes half of all hemophiliacs -70 to 90 percent now carry the virus.”
They’re speaking of HIV-1 – “the virus” – not full AIDs, of course, but back then, before the discovery of the correct cocktails, HIV-1 generally did lead to AIDs, and AIDs generally led to death. So, it was a grim picture. Back then, diagnosis of HIV was essentially an ugly death sentence. And it applied to (.7 to .9) X (.5) of all hemophiliacs in the US – 35% to 45% of all US hemophiliacs had the virus.
But then, because of massive spending, we got a hold on AIDs, and it’s no longer the spectre it once was. At this point, questioning the need for the effort sort of resembles those who claim that guns never stopped any mass murders – because if they were stopped, there was never a mass murder to count.
bobby — My hot button issue is Junk Science, or to be more precise, the misallocation of limited resources because of adherence to the dictates of Junk Science. The waste and environmental damage done by solar panels and bird-whackers is only the most obvious occurrence of this.
From this discussion, I am learning that it is more difficult for us to recognize Junk Science in the medical arena, because quite naturally our emotions get involved when we see sick & dying human beings, especially young ones. For my sins, I spent years as a volunteer Emergency Medical Technician; spent many hours cleaning blood out of our ambulances and disinfecting them; sat in post-trauma debriefings with my fellow EMTs shedding tears together over the miseries we had seen. Of course we were concerned about HIV — and about hepatitis and many other blood-borne diseases. Yet the precautions were surprisingly cheap and simple — gloves, masks, and common sense. We did not need expensive medications.
Maybe I am becoming heartless. Most of the people who got infected with HIV could have avoided it by simple behavioral changes. And then there are the dirty little secrets — the great African AIDS explosion had a lot to do with international financial incentives for governments to misclassify the cause of death; many people with HIV virus in their system do not get AIDS.
Of course there were innocent people exposed to HIV through blood transfusions. That should not have happened. But let’s not forget that most of those people who got blood transfusions would have died without them. Look at the Original Post — a 50 year old hemophilac complaining that he has had to live with HIV for most of his life. In the early 1900s, the life expectancy for a boy with hemophilia was 13 years. Even by 1960, the life expectancy had risen only to 20 years. We should always try to do better, but let’s not be ungrateful for the advances which have already been made. Yeah! I have become a heartless bastard.