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WOMENS WORDS

The Next Big Medical Scandal: the experimental hormone treatment of children

Written by Dr Ruth Livingstone


Most doctors strive to be factual and scientific, while dealing compassionately with the complexities of human health and sickness. Often, we struggle with two opposing forces: the desire to treat and alleviate suffering, versus the maxim to “do no harm” with our treatment. As a retired GP, I know full well the difficult decisions we sometimes have to make. We don’t always get it right. In fact, history is littered with examples of how we got it terribly, terribly wrong.

Bloodletting was used for thousands of years. It was thought to treat a huge range of illnesses by expunging harmful “vapours”, balancing competing “humors”, and so restoring the body to its natural balance. Blood was removed by a variety of methods, such as directly cutting into a vein and letting it bleed, or by applying blood-sucking leeches to the patient’s body. This treatment was used for centuries by well-meaning doctors – from Hippocrates who lived 400 years BC, right through to eminent doctors in the 19th Century.


A practice that seems bizarre to us now, and which probably hastened many deaths, would have seemed entirely sensible and logical to doctors at the time.



Lobotomy

In the first half of the twentieth century, a brilliant new method for treating psychiatric patients emerged. Lobotomy was the process of severing the connections between parts of the brain – usually between the frontal lobe and the rest of the brain – in order to cure mental illnesses such as severe schizophrenia and mania. To be fair, these were conditions for which there were no decent medical treatments at the time. Severely affected patients were living in institutions, and often confined to padded cells or straight-jackets.


After treatment, patients were no longer disruptive and agitated. Wonderful. But the treatment had terrible long-term consequences, leaving many patients with fits, incontinent, demented and speechless. In fact, lobotomy seemed to destroy the basic personality of its victims, rendering them apathetic and child-like.


These terrible outcomes didn’t stop the early pioneer of lobotomies, a Portuguese neurologist, from being awarded the Nobel Prize for Medicine in 1949.


Luckily, better pharmaceutical treatments for serious medical illness began to emerge and the practice of lobotomy died out in the second half of the twentieth century, but not before around 40,000 patients in the USA had their frontal lobes disrupted. At its peak, 1,000 lobotomy operations were being performed every year in the UK.


This is another example of doctors embracing a medical treatment that seemed both scientific and humane, but that ended up permanently wrecking the lives of thousands of patients.



Thalidomide

People of my generation (born in the 1950s) will remember the thalidomide kids. There was one at my school. A bright and intelligent boy, who loved cricket - but was born with stubs for legs, and arms that ended at the elbow. He couldn’t play cricket, of course, but he could keep score. And, so, he could be found at the cricket pitch every weekend, sitting under the score board.


Thalidomide was a wonder drug. It was a sedative and tranquilliser with no lethal dose and few side effects. In addition, it cured morning sickness. It was licensed for use in the UK in 1958, where it was marketed under 4 different brand names and promoted as being safe for use in pregnancy. If you were a doctor faced with a nauseous pregnant woman, why wouldn’t you prescribe this wonderful new drug?


Then, children began being born with malformed and absent limbs. Sometimes just a hand missing, sometimes both legs missing, often all four limbs were either missing or only partially developed. It wasn’t just limb defects. Some children had brain damage, hearing and eyesight problems, and other abnormalities.


The first paper linking Thalidomide to birth defects was published in 1961. But the damage had been done.


According to the Thalidomide Trust, as many as 100,000 babies were affected by the drug in total. Many died in utero, but of the 10,000 babies born worldwide (and who should be in their 60s today) fewer than 3,000 survive today. There are currently 442 adults in the UK living with the damage caused by thalidomide.


The pharmaceutical distribution company involved has paid compensation for the damage inflicted (although it took years to settle the case). Should individual doctors who prescribe thalidomide be sued too? No, because they had no reason to believe that this drug – which was marketed as a safe treatment for morning sickness, remember – would harm any unborn children.


Contaminated Blood

In the 1970s and 1980s, thousands of haemophiliac patients were given contaminated blood products, with devastating consequences.


For those who aren’t aware, haemophiliac patients bleed easily, especially into their joints. This bleeding requires urgent treatment with certain proteins (called clotting factors). Back in the 1970s, the plasma from thousands of donors were pooled in order to extract concentrated clotting factors. These were given via IV infusion or injection.


One treatment might require blood plasma from up to 40,000 donors. Just one infected donor could contaminate the entire batch.


Due to a shortage of blood products in the UK, blood plasma was imported from the US, where blood is sold, rather than donated. Warnings about the dangers of possible contamination - from blood sold by drug addicts - were ignored and hushed up. Predictably, many haemophilic men became infected with HIV and/or Hepatitis C. Not realising they were infected, some unknowingly infected their wives and partners.


Both HIV and Hepatitis C were incurable at the time.


In 1982 the first death of a man with haemophilia infected by AIDS was reported in the US, and people began to realise there was a serious problem. In 1984, heat treatments were used to deactivate the viruses, and in the 1990s synthetic products became available and the risk of contamination was eliminated.


However, in the meantime, 4,689 haemophiliacs in the UK were infected with HIV and hepatitis viruses and more than 3,000 have died. But infected blood products were given to many other people too, through routine and emergency blood transfusions. It is estimated that as many as 25,000 people may have been infected with Hepatitis C in this way.


The UK Infected Blood Inquiry started to hear evidence in public in April 2019 and is expected to publish its final report in mid-2023.


I confess to a personal involvement here, as I was working as a junior doctor in the 1970s. One of my jobs was to administer concentrates of blood factors to haemophiliac men who came into A&E with bleeding in their joints. I often wonder whether I contributed to the infection, and subsequent death, of any of the patients who came under my care. In my defence, I knew nothing about the importation of contaminated blood and naively assumed the products I was giving were safe.


Transvaginal Mesh

The use of transvaginal mesh was proposed as a new technique in the mid 1990s. It was hailed as a safer way to deal with vaginal prolapse and urinary incontinence in women, and seemed a great alternative to major surgery. It was certainly quicker than spending years doing pelvic floor exercises. I can remember sitting in a medical meeting where a new, young gynaecologist explained how this wonderful innovation worked, and how good it was for women.


Mesh was used in many women, and became a popular operation. Sadly, in the past few years, many women have complained of post-operative problems, including intractable pain. The routine use of transvaginal mesh outside of a research setting was temporarily halted in the UK in 2018, before being approved for NHS use again in 2019, but with advice and caveats. Court cases are pending.


I’m certain that the very nice young gynaecologist, who spoke to us 20 years ago, had no intention of harming his patients. Sadly, not all wonderful new treatments turn out to be quite so wonderful once you are fully aware of their side-effects and limitations.


Puberty Blockers and cross-sex hormones

Here we are, in the 21st Century, and we have a new condition. But what do we call it? Is it a disease, a mental illness, a brain disorder, a variation on a spectrum, an identity, a part of sexual health, or a dysphoria? The medical profession seems unclear and we keep changing our minds.


Let’s call it a “gender confusion”.

Something that was unheard of 20 years ago, is now commonplace. This “gender confusion” is becoming the new pandemic, with a 5000% rise in referrals of young females to the Gender Identity Services (GIS) in the UK. One school in Brighton reports having 76 transgender or “gender fluid” pupils. This “gender-confusion”, whatever the cause, must be pretty contagious.


How are the medical profession dealing with the new pandemic? We are treating it, of course. Not by gentle reassurance and watchful waiting (the standard treatment for most non-life-threatening illnesses) but by drugs. Specifically, by giving puberty blocking drugs to children and, in the older age groups, by prescribing cross-sex hormones.


Are we enlightened? Or are we heading for another medical scandal?

If you think we’re enlightened, you will agree with the recent Medical Practitioner Tribunal Service statement on the Dr Helen Webberley case. The tribunal listened to the accounts of children and young teenagers being prescribed life-changing medications by a GP, and in April 2022 published their Determination of the Facts. In this they said, “the reluctance of the Endocrine Society and others to embrace enlightened views of transgenderism is symptomatic of the tendency in all professions to be slow to move with the times.


In other words, the Tribunal believed that some members of the medical profession are old-fashioned dinosaurs for not embracing gender confusion, and for being reluctant to dish out body-altering medications to teenagers and children.


If you think we are heading for another medical scandal, by putting the health and future well-being of young people at risk, then you are more likely to be concerned about the February 2022 Interim report of the Cass Review. Dr Hilary Cass is an experienced consultant paediatrician who has held many senior posts. In the summary of her Interim report, she says, “At this stage the Review is not able to provide advice on the use of hormone treatments due to gaps in the evidence base.


This is a battle between two opposing aspects of medicine. The first is the desire to treat and alleviate perceived distress and suffering at all costs. The second is the maxim to “do no harm”, which doctors must try to remember in their eagerness to treat and to cure.


Who will win? And how many children will be harmed in the meantime?

Just remember that this is not a new battle. In the past 100 years in the UK, in the name of good medicine, we destroyed the frontal lobe connections of 17,000 people, produced 500 Thalidomide damaged babies, and killed over 3,000 haemophiliac patients by giving them contaminated blood products. Let us hope we have learnt our lessons. At the moment, it looks worryingly unlikely.


Dr Ruth Livingstone


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