HIV/AIDS and policy

The recognition and will to deal with the AIDS crisis has been at the heart of moral thinking in societies all over the world because the virus can be transmitted via sexual activity and intravenous drug use. It has been very hard to develop the political will to address the variety of moralities that condemn HIV carriers and AIDS patients and even deny their existence. It has been hard to direct the research, and to convince the pharmaceutical companies and governments to make care and medicine available to people, especially poor people, around the world.

n the fall of 1989, when I decided to organise an event devoted to the worsening AIDS crisis, 182,000 cases of AIDS had been officially reported to the World Health Organization. note 137The WHO regarded this as an underestimate though, since many countries did not even recognize and/or accept the existence of AIDS at the time. By the end of 1990, 307,379 people had been officially reported as being infected with AIDS. In hindsight it is estimated that in 1990 over 1 million people actually had AIDS and that over 9 million people were infected with HIV

The difficulty of understanding what was happening in the beginning is illustrated by Jeanette Kok's experience. In the Netherlands the first person was diagnosed with AIDS in 1981. Jeanette Kok, working as a 'social nurse' for the Health Service Amsterdam recalls how she was asked by Dr. Roel Coutinho to interview the first patients (de Goei 2003). She would hold lengthy conversations with the people who were sometimes already very ill and their friends and family to learn about their behaviour in order to understand how these young men were infected. At the time HIV was not yet known, medical expertise did not know how to treat it, and it was unclear how it was transmitted. Because it was usually gay men in the USA and Europe who were first diagnosed, it was called the 'gay cancer' at the time (officially: Gay Related Infectious Disease, G.R.I.D.). The homosexual communities had to deal with the rapid death of friends in large numbers from an illness that nobody knew of. This was a traumatic experience for many people involved. On top of that the discrimination against homosexual life grew worse once again, whereas it had improved significantly in the seventies, because the fear of catching the 'gay cancer' dominated the public discourse (Eihblyn 1990).

HIV has only been known since the early 1980s even though research proves it had existed long before. It is believed that somewhere in the last century the virus was transmitted to human beings from chimpanzees. The HIV virus, the Human Immunodeficiency Virus, weakens the auto immune system of the body, after which AIDS, Auto Immune Deficiency Syndrome, may develop. People with AIDS easily develop infections and cancers, which ultimately cause death. The fact that the virus is transmitted via bloodily fluids was established in the middle of the 1980's. In 1986, the Dutch Union for people with HIV (BSP) was founded and early in 1987 the Dutch Union for people with AIDS (BMA) was established, which together have formed the HIV Vereniging, HIV Union, since 1989. They were concerned with the isolation of people with HIV or AIDS, and provided information, organized support and advised policy makers. The Buddy-project was started, organizing care by volunteers to make life more bearable for lovers, friends and family. And "Safe Sex"was introduced. In Amsterdam in 1987 a committee was established in which policy makers, medical and healthcare experts and representatives of the homosexual community and the community of drug users took part. note 139Such a committee was also established on a national level. note 149Because no cure had yet been discovered, attention was directed towards prevention and care.

On October 6th 1989, the AIDS fact-file of the World Health Organization lists the following numbers: 31,512 cases were reported in Africa, 435 cases in Asia, 1584 cases in Oceania, The Americas without the USA reported over 19,133 cases. The USA reported 104,210 cases and Europe 25,589 (Personal Folder Documentation 1990, Fact File WHO 1989). Intravenous drug use and male and female commercial sex work appeared largely to be responsible for the spreading of HIV and AIDS. Heterosexuals, especially in minority communities in the USA, were increasingly reported as having been infected with the virus. Not only homophobia, but also racism had now become an issue in public health policies. Overseas students, guest workers and long term residents were regularly forced to take HIV tests, tourists and businessmen were approached more reasonably. While the USA was promoting 'safe sex', Uganda, one of the first African countries to recognize AIDS, launched a campaign called "Love carefully" (Boateng, 1988). note 141 It had become clear that AIDS was not a gay disease, everyone could get it. In 1994 the first trials with Antiretroviral therapy (ART) were started, which has turned HIV into a chronic condition like so many others. If one uses ART for as long as one lives, HIV does need to develop into AIDS, and life expectancy becomes 'normal' again. In 2006 one of the main issues in the fight against HIV and AIDS are concerned with how to finance and distribute ART in the poor areas of the world. To this end UN AIDS launched a campaign in the summer of 2006 entitled "Towards Universal access in 2010".

In 1990, and also at the 0+Ball, the consequences of the epidemic for women surfaced. Sex has always been dangerous for women because one could get pregnant, and there is also the risk of social exclusion by getting pregnant outside marriage, and giving birth has been a cause of women dying for centuries (and this is still true in many regions of the world). note 142 With the invention of the anti-conception pill and the legalization of abortion in several rich countries in the northern hemisphere, women experienced a new level of sexual liberty and safety. HIV and AIDS have made sex dangerous in a new way. In 1990, the issue of women and AIDS was surfacing. In 2006, the AIDS pandemic is having disastrous consequences for women and their children around the world. At the International AIDS Conference in 2006 in Toronto, as Annette Verster reported to me, 130 women from South Africa demanded formal refugee status because they have no access to medication in South Africa where only 5% of the people infected with HIV has access to antiretroviral therapy.