In the first few years of the epidemic, treatments failed to have a great effect on the life expectancy of people with AIDS. Despite optimistic claims that the discovery of HIV promised a swift breakthrough in the search for vaccines and treatments, the progress in the search for effective antiretroviral drugs was slow in coming.

The first major antiretroviral drug to be licensed for use in people with AIDS was AZT, which became available in 1986. It is now clear that the Phase 2 trials which led to the licensing of AZT were conducted with insufficient rigour, and there have been allegations of fraud made against the investigators in this trial. It is important to bear in mind that investigators and drug regulators were under huge pressure to make available a drug which might offer hope to thousands. Consequently they cut corners in ways which compromised the value of data gathered in this study. AIDS activists demanded that regulatory authorities abandon 'business as usual' procedures intended to safeguard the public, and regulators were persuaded that emergency circumstances justified less stringent precautions. It took nearly eight years for the limited nature of AZT's benefits to become fully apparent, a process which is argued by some to have seriously impeded the search for other more effective treatments (Harrington).

Treatments against opportunistic infections have been developed more successfully, the most important being prophylaxis against pneumocystis pneumonia (PCP). A number of studies have now shown that PCP prophylaxis is the factor responsible for extending the lifespans of people diagnosed with AIDS (See Opportunistic Infections in the HIV & AIDS Treatments Directory for further details of this research). PCP prophylaxis was introduced as a standard measure only after vigorous campaigning led by People with AIDS groups in the United States.

Political pressure to release AIDS drugs has played a major role in expanding the treatment options of people with HIV through lobbying of drug companies and drug regulators. Until the AIDS epidemic began it was extremely rare for drug companies to release promising drugs on a compassionate, one-off basis to people in urgent need before they had been licensed. In the case of experimental tuberculosis drugs, it was decided that the most ethical approach was to use all available drugs to conduct research in order to benefit as many patients as possible in the long term. In the case of HIV infection, companies have learnt that compassionate release of experimental drugs is a shrewd form of publicity and marketing.

The early release of AIDS drugs has also been brought about by a shift in the underlying drug regulation philosophy in the United States. From the early 1960s the US Food and Drug Administration strictly regulated the release of new drugs onto the market in order to prevent disasters such as the birth defects caused by thalidomide. Drugs companies were required to put compounds through years of tests in order to prove their safety. In the 1980s the FDA began to face pressure from free market advocates for a speeded-up process, one which would reduce the costs of industry and increase the choice of consumers. AIDS was one of the first areas in which drug approval was speeded up, after ferocious criticism from AIDS activists who charged that people were dying for want of effective drugs whilst the FDA deliberated on safety regulations not designed with a public health emergency in mind.

Many people with HIV and AIDS have become experts on the treatments available to them, a development which substantially altered the balance of power between doctors and patients. Following on from the developing awareness of the importance of informed consent amongst feminist health activists and cancer patients, AIDS activists have promoted the principles of fully informing people about the risks and benefits of treatments and of allowing individuals more control over access to experimental treatments.

In the field of complementary therapies there have been few major breakthroughs which demonstrate that complementary treatments are clearly effective, but an increasing number of people with HIV have turned to complementary therapies and report benefits from those therapies. The use of complementary therapies has in turn stimulated a greater interest amongst doctors in the benefits of such treatments and the ways in which they can be combined with orthodox treatments.

References

Mark Harrington: The Crisis In Clinical AIDS Research, Treatment Action Group, New York, 1993.