Who doesn’t remember the statement made by Daniel Koch, the FOPH delegate for Covid-19, in March 2022: “Healthy people should not wear face masks in public. These do not effectively protect a healthy person from infection with respiratory viruses.”[1] The statement was not fully thought through and was retracted within a short time. It was not the first case of a lapse by health authorities. Even more tragic was the result of an epidemic policy blunder in 1985, which cost thousands of lives and generated billions in costs for the healthcare system and the canton of Zurich. The cantonal physician of Zurich, Prof. Dr. Gonzague Kistler, announced at the time that he would withdraw doctors’ licenses to practice if they gave sterile syringes to people who injected substances.
I would like to tell the story of two young women who were victims of this stupid act and the attitude behind it. They and all the other victims deserve that we never forget what happened 40 years ago in Zurich, at Bellevue, behind the main station, in Niederdorf… I had my first contact with hepatitis and drugs at the age of 11 through my uncle B. He worked as a young doctor at the drop-in in Zurich in 1970. He often told me and my sister about his work. The drop-in was a place where people who injected substances could visit for emergencies without an appointment. B. had to treat a lot of abscesses, but he also told us about patients who were yellow because they had acute hepatitis. Back then, we kids thought it was funny and made all kinds of terrible jokes about it. But I had laughed too soon, because around 1990 I had contracted hepatitis C myself, probably at the Platzspitz.
Dealing with people who inject substances in the 1980s
The common opinion in society in 1985 about people who use substances was not only negative, but also hard-hearted and ignorant. Most people thought that addiction was a character flaw that could only be cured when they hit rock bottom. Only then would they be prepared to correct their bad habits. It would be just right if they became really ill, perhaps they could then recognize the right path and make a lasting change for the better. What was not taken into account was that people who injected substances with non-sterile utensils contracted incurable and fatal diseases, passed them on and they immediately spread through society on an alarming scale. Although knowledge of the danger was available – the hepatitis B virus, for example, was discovered in 1967 – it was slow to seep into the consciousness of the public, and unfortunately also of the medical profession. Even after the discovery of HIV, cantonal doctor Kistler maintained the ban on syringe distribution and commented: “I recognize that AIDS is spread even in the best circles via prostitution. From a preventive medical point of view, the distribution of clean injection material is not very helpful because the addicts have little awareness of hygiene”[2].
One could argue that the ban was intended to discourage drug use – perhaps out of the conviction that facilitating drug use would encourage it. However, no evidence of this was ever presented. The ban on the distribution of sterile injection equipment in the canton of Zurich violated important ethical principles – it increased harm, undermined dignity and prioritized moral deterrence over public health. Therefore, the ban could not be justified from an ethical point of view.
In October 1984, the proportion of people who injected substances in the total number of reported HIV cases in Europe was 2%. One year later, in October 1985, this proportion had already risen to 8%. Within a year, the proportion had increased by six percentage points. In the mid-1980s, Switzerland had the highest incidence of HIV infections in Europe [3].
The story of K. and E.
When I met them in 1980, K. and E. were two young girlfriends who lived together in a shared flat in Zurich Höngg. K. was studying medicine and E. was a medical assistant. They both loved the nightlife and the very wild times of the 1980s youth riots. In the evenings, K. and E. could usually be found in the Kontiki bar. Neither of them were very interested in politics, they just wanted to enjoy life to the full. Of course, this also included the use of various substances. In fact, the two of them used everything that was available at the time. K. had already developed an affinity for codeine as a child because her father was a dentist and always had a large bottle of it in the bathroom cupboard. Many a tedious day at school was easier to get through with a few bitter drops. So K. had no inhibitions about trying heroin later and using it occasionally. When I met K., however, she was not yet addicted to any substance. She was a very upbeat, intelligent and fun-loving 20-year-old woman.
I lived with K. for about three years, partly in a shared flat with E. in Höngg. K. had only used heroin occasionally during our time together. I always found it terrifying when she did, because her facial features changed in an eerie way and her expression froze. Her eyes lost their sparkle and her pupils shrank to the size of pins. It always broke my heart to see K. like that. Once I had a big argument with K.. As a result, K. had such a fit of rage that she rushed straight to Bellevue-Rondell. There she bought herself a dose of heroin and injected it with the dealer’s used syringe right at the streetcar stop. I was totally perplexed. Everything she had learned about hygiene suddenly didn’t matter to K. at all. It had to be done quickly and K. knew that she would definitely not get a sterile syringe at the Bellevue pharmacy. Although K. had given up her medical studies in the meantime and worked as a cashier in a sex cinema in Niederdorf, she was well aware of the dangers posed by used syringes. But even before the ban, it was practically impossible to get a fresh “Ise” or a “Pumpi” (iron or pump: CH slang for syringe) in Zurich. I knew that if even my friend K. knowingly exchanged syringes, everyone else would do the same if they had no other option. The craving for heroin and cocaine was definitely stronger than reason, so educational measures of the kind taken by Dr. Kistler were not effective.
Many of the people infected at the time have since died, because in the first few years after the discovery there were no drugs against HIV. It felt like a death sentence to receive a diagnosis. I myself also had to wait a long time for HIV test results several times, which was always extremely unpleasant and scary, for example after a corresponding interpersonal contact. But I was always lucky and never contracted HIV. On one such occasion, however, another friend of mine tested positive. We were both shocked, of course, I had expected the opposite result. Unfortunately, our relationship fell apart pretty quickly. We were both totally overwhelmed by the situation. As my own history at the time was not determined by heroin but by cocaine abuse, I was only infected much later and fortunately only with the now easily curable hepatitis C virus. The utensils back then were already sterile, my HCV was probably transmitted via the water at a filter table. As HCV is 10 times more infectious than HIV, the virus was not killed even by boiling it in a spoon. To prevent this, sterile disposable spoons, filters and packaged individual portions of saline solution must be used.
K.’s life on substitution therapy and with HIV
K. had survived the first few years without HIV medication well. She lived abroad for a long time, was clean and had a great job at a diving center at the Red Sea, where she also trained as a diving instructor. Back home in Zurich in her old environment, K. unfortunately relapsed. Her T-helper cells also became so low that she had to start one of the early HIV therapies (the first combination of three). In addition to the opioid substitution therapy, K. occasionally used cocaine and, tragically, suffered a stroke as a known interaction/side effect with the HIV medication. K. was able to heal the half-sided paralysis and speech disorder to a large extent in a relatively short time with rigorous training, so that she was able to walk again and no longer needed help. But this was just the beginning of her ordeal. I was just at work when my cell phone rang. It was a friend of K.’s: K. is in a coma in the intensive care unit at the USZ. I went there immediately. K. was lying on a treatment table surrounded by doctors, she just had an epileptic seizure as a result of another stroke. This time, K. was very unlucky because her partner at the time, R., was not at home. She had been lying unconscious on the floor in the bathroom for at least 12 hours after the incident. This meant that rapid intervention was no longer possible. This time, the other, previously healthy half of her body was completely paralyzed. K. therefore needed 100% care for the rest of her life after waking up from her coma a few days later. The impairment was motor, but K. was still mentally fit. It was initially very difficult to find the right care home for her. She was still too young for an old people’s home and was dependent on substitution therapy. In one place, K. was treated so badly that she ended up dehydrated in an emergency room. It turned out that the home operator had mixed cannabis into the food to sedate his charges at night. To prevent them from having to go to the toilet too much, they were simply given less to drink. In the end, a place was found for them in the Zurich Lighthouse, but only after a terrible odyssey through various care facilities.
K. then lived quite happily for several years in the Zurich Lighthouse, a hospice for the terminally ill. Here she received the best possible care and support. The only depressing thing about the place was that the nice people who were also living there kept dying. Her partner at the time, R., visited K. every day, he lived nearby and looked after K. devotedly. He held cigarettes to her mouth or scratched her when necessary, drove her around in her wheelchair, made coffee and set the TV program. R himself had HIV, hepatitis C and lymphoma. One night, R. died suddenly at home. For K., the world collapsed once again, it was terrible, her despair enormous. The only mercy K. was granted by the HIV virus was the opportunity to end her life in a self-determined way. K. called her remaining friends to the Lighthouse and declared that she would stop taking her HIV medication with immediate effect because she no longer wanted to live. K. died peacefully after a few weeks from pneumonia.
E.’s untreatable hepatitis infection
Our mutual friend E. had fled Czechoslovakia with her parents in 1968 and was attending school in Switzerland. When I met her, she was working as a medical assistant. She didn’t really like her job. She preferred to be out and about with K. in Zurich’s nightlife. When she had the opportunity to work with K. as a cashier in a sex cinema, she jumped at the chance and quit her job as a doctor’s assistant. Unfortunately, she also had a great fondness for sugar (heroin) and intravenous use. No wonder she was soon infected with hepatitis and HIV. Just a few years later, E. felt the first effects. She had chronic hepatitis B, was constantly nauseous and often tired. E. was therefore soon no longer able to work, developed cirrhosis of the liver and had to be repeatedly hospitalized as a result. Her prognosis deteriorated rapidly. Drugs such as tenofovir were not yet available at the time. E. died before K. in the intensive care unit as a result of her hepatitis.
What have we learned from this?
The case was not always as clear-cut as with K. and E. Many people died as a result of the inhumane syringe policy without a clear cause of death. In the years that followed, the Zurich Medical Association expelled Dr. Kistler from the professional association, but the cantonal doctor was never dismissed by the canton of Zurich. Should we demand an official review and commentary on what happened 40 years ago? In fact, the authorities are still acting in a similar way in some places. Just think of the various prisons in Switzerland where no sterile injection equipment is handed out to inmates: Drugs are forbidden in this prison!
(1) https://www.beobachter.ch/gesundheit/medizin-krankheit/das-masken-desaster-302929
(2) https://www.tagesanzeiger.ch/_external/storytelling/platzspitz/kapitel2/index.html
(3) https://de.wikipedia.org/wiki/Spritzentausch