Healthcare innovation in the university hospital
The arrival of the infectious disease AIDS in the early 1980’s caused many victims and led to panic and fear. But it also meant the start of an effective policy to contain the epidemic. The university hospital in Utrecht was a driving force for healthcare innovation.
In 1981 the first reports appeared about a terrible new disease among sexually very active gay men in the US. The disease was initially named Gay Related Immuno Deficiency / Grid. That same year the first Dutchman was diagnosed: Jan S., a sporty man from Amsterdam in the prime of his life. Two years later, in 1983, the virus was discovered that causes the horrific disease: HIV (Human Immunodeficiency Virus) and the disease was given its final name: AIDS (Aquired Immuno Deficiency Syndrome). Then the first Dutch dead also fell. Almost 5,000 victims would follow until 2023.
Fear and panic
Because it was initially unknown how the disease was transmitted, there was enormous fear. HIV infected and AIDS patients were severely discriminated and excluded. The urgency to tackle the crisis became greater when it became clear that the virus was not picky and affected a large population. The death of American film star Rock Hudson in 1985, shocked the world. Later the world also mourned the death of graffiti artist Keith Haring (1990) and singer Freddy Mercury (1991) from the popular band Queen. Governments took all kinds of – sometimes panicky – measures to contain the epidemic in their country. The US and many other countries declared an entry ban for people with HIV.
The disease had a huge impact on the queer community in the world. Healthy young gay men were massively affected. Illness and death became part of daily existence. It was an epidemic roller coaster of new infections, sick persons and deaths. It became normal to attend funerals of friends several times a year.
Already as early as in 1982 the first three people from Utrecht were diagnosed, but for many, Manuel, the Portuguese bartender in cafe Body Talk was the first victim in Utrecht. The number of Utrecht victims quickly rose to 18 in 1987, but was limited compared to Amsterdam, where the number was almost ten times as high.
Utrecht university hospital
In 1987 a newly formed specialized team treated AIDS patients in university hospital in Utrecht. Unlike in Amsterdam, there was no separate department, but the patients were treated in the department of Internal Medicine. That prevented that you were to be identified as an AIDS patient, a huge taboo.
Internist Jan Borleffs and nurse Henk Vrehen formed the duo that started the care. Jan: “I felt that I could really mean something for patients. Although I couldn’t heal them, I tried to make it as pleasant as possible for them by treating the complications of HIV as well as possible and guiding patients in this phase. “Henk:” It was intensive work. I took it home, literally and figuratively. The patients called me, even in the evening and at the weekend. And the caseload was high. We saw around 200 patients a year in the 1990’s. It was work for 24 hours a day and 7 days a week. ” Jan and Henk each had a consultation hour. For the patient, the doctor was the practitioner that treated the complications of the disease and the nurse was the expert who you could consult on everything that was related to the disease.
The work did not only consist of direct patient care. Jan and Henk schooled their colleagues inside and outside their hospital in dealing with infection risk and stigma. They visited the HIV cafe to provide the target group with the latest information. They participated in the countless scientific studies into HIV and AIDS. When the group of HIV patients increased sharply in the early 1990s, doctors and nurses were added.
The patient first
People with AIDS made an important contribution to the renewal of care. The predominantly young patients had different wishes than traditional care could offer. They therefore searched for and created alternatives. The doctor no longer determined what was good. The wishes of the patient were the starting point.
In 1984 Schorer Foundation (Homosexuality & Health) started buddy care for AIDS patients, following an example from San Francisco. A year later, Mainline Foundation (Drugs and Health) started with syringe exchange for drug users so that the virus could not be spread through dirty syringes. In 1992, an Amstelveen church community took the initiative to the first hospice in the Netherlands, especially for Aids victims in Amsterdam.
Henk and Jan put the wishes of the patients at the center of their care. The patients challenged Jan and Henk to look at “good care” in a new way. If the patient wanted it, they moved hospital care to the home situation. By lack of professionals able to care for the patient at home, Henk and Jan instructed caregivers to administer complex medication at home. Thus preventing a long stay in the hospital for the patient.
Many of the innovations invented during the AIDS epidemic have become the standard treatment and have improved healthcare. Hospitals now have nursing specialists who help patients live with their illness. Home care now uses modern technologies that were previously reserved for the hospital. There is now buddy care for people who have become lonely due to all kinds of diseases. The hospice has become a valued part of palliative care.
AIDS also caused a more personal handling of death: new rituals and ways of dying, mourning and commemorating. Such as the AIDS Memorial Quilt, where AIDS victims are commemorated with personal flags that together form a gigantic blanket.
National program for fighting AIDS
When it became clear in 1987 that AIDS could take on epidemic forms, the government installed a national committee to combat AIDS and launched the first public campaign. One of the spearheads was stimulating safe sex with a condom. That was new, especially for gay men.
The committee worked closely together with (gay) interest groups from the start, and in doing so, was better able to realize the desired behavioral changes. As a result, the epidemic in the Netherlands was relatively limited.
In the meantime, the queer movement fought against discrimination of AIDS victims and organized itself in action groups. The best known was Actup (AIDS Coalition To Unleash Power) that started in New York City in 1987 and still exists in 2023. Amsterdam (1991-1997) and Utrecht (1991-1997) had their own modest branch for a short time.
In the fight against stigma, a national TV broadcast on November 28, 1992 became famous. There, presenter Paul de Leeuw, with the seriously ill singer René Klein, sang a song intimately together. ” The whole of country was moved. René died a year later and the song became a number 1 hit.
AIDS in numbers
In the Netherlands, the number of infected persons increased every year, to a peak of nearly 1400 new infections in 2008. After that the number decreased to around 400 in 2021. The number of AIDS deaths reached a peak of more than 400 in 1995 and decreased after the Introduction of a new combination therapy (HAART). In 2021, 13 people died of AIDS.
Exactly how many people from Utrecht died of the effects of AIDS can no longer be traced, but there must have been hundreds. But in this century, it is rare that someone dies of the effects of AIDS. In the Utrecht region lived an estimated 1,400 people with HIV in 2022. Apart from the 100 that do not know they are HIV positive, nearly all people are treated and therefore cannot spread the virus.
AIDS brought the world an impressive medical progress. The disease changed from a fatal disorder that kills you within a short time to a treatable chronic illness with which you can lead a normal life in. This happened in a timescale of 15 years, unique in the world of infectious diseases. But despite the medical progress AIDS is still a huge worldwide problem. Forty million people have already died of AIDS and another forty million people live with an HIV infection. That number rises annually with 1.5 million. Due to discrimination, exclusion and poverty, a quarter of these infected people receive no treatment. As a result, more than half a million people die from the effects of AIDS every year. UNAIDS, the AIDS department of the United Nations, strives for an end of the epidemic in 2030.
Evert van der Veen