One hundred reasons why ending the AIDS epidemic is important –
Responding to HIV/AIDS
These documents responses to HIV/AIDS. It also looks at constraints: the invisibility of the epidemic; its long-wave nature; stigma; issues of sustainability and choice; and lack of resources in many affected areas. The early reaction was mixed. Many countries took the threat seriously; in other locations complacency and denial were commonplace. Almost everywhere there were public education campaigns, and in some places attempts to target the core transmitters, particularly sex workers and IDUs.
The initial lack of medical options meant issues of public health, human rights, and development came to the fore, even if they were not framed in this way. If infected people could not be cured or treated, then how infections could be prevented? The response changed post-1996 with the development of treatments and the fall in drug prices.
There have been consistent themes over the past 25 years: scientific advances and an inability to get prevention right. The virus is intensively studied and the hunt for new drugs, vaccines, and microbicides continues. Prevention remains a challenge and the importance of gender, sexuality, and the underlying drivers of the epidemic needs attention.
The early years: limited responses
The first reaction was the scramble to identify the pathogen and how it was transmitted. The medical community, which had found it looking on helplessly as patients died, desperately sought treatments that would work. As soon as blood transfusions and blood products were identified as a transmission route, steps were taken to reduce this threat of infection. People at risk of HIV infection were discouraged from donating blood. In January 1985, the US Food and Drug Administration approved the first commercial HIV test. In Britain, routine blood testing began in October 1985. Ensuring safe blood was a relatively simple, technical response, and many countries rapidly put the necessary measures in place. However, in some settings, particularly where blood donors are paid (India and China are examples), HIV transmission through this route was, and remains, a major issue.
IDUs who share injecting equipment were identified early as being at risk. The approaches ranged from cracking down on drugs and users, which tended to drive people underground, to making an illegal activity safer. This latter option included campaigns to ensure users, at least, cleaned and sterilized their equipment (simple bleach worked); and at best, programmes incorporated needle exchanges, where old used needles were exchanged for new ones. The first needle exchange was introduced in February 1986 in the Scottish city of Dundee. Such successful interventions brought the IDU epidemic under control in Britain and much of Europe.
Governments saw they had a responsibility to educate and protect the broader population. The Conservative government of the UK under Prime Minister Margaret Thatcher introduced one of the earliest and most effective public information campaigns in March 1986 with the slogan ‘Don’t Aid AIDS’. This was followed, in January 1987, by a major advertising campaign with the catchphrase ‘Don’t Die of Ignorance’, and a leaflet was delivered to every household in Britain. A similar campaign in Australia featured the ‘Grim Reaper’ in a television commercial that showed death mowing down victims in a bowling alley. The early public education messages aimed to scare people into talking about the disease and becoming aware that they too could be at risk of infection. In the rich world much early activism was motivated by articulate and organized gay men. At a gathering in 1981, a number of homosexual men met in the New York apartment of writer Larry Kramer to discuss the ‘gay cancer’ and how to respond to it. This gave rise to the organization ‘Gay Men’s Health Crisis’ followed by others such as ‘ACT UP’ (the AIDS Coalition To Unleash Power) and the Terrence Higgins Trust in the UK. Grassroots initiatives established in poor countries included The AIDS Support Organization (TASO) in Uganda, and the Chikankata home-based care initiative in Zambia. In the USA, the public campaigns were mostly driven by activists and local (state and municipal) government. There was great concern in major federal health agencies such as the National Institutes of Health and the Centers for Disease Control, but political leadership was slow to react. It was not until 1985 that President Reagan publicly mentioned HIV. Only in 1988 was there significant action when the federal government mailed 107 million copies of a booklet, Understanding AIDS by the Surgeon General C. Everett Koop. To his credit, Koop saw his primary function as protecting the health of Americans, not moralizing. The Bush Administration’s opposition to needle exchange and emphasis on abstinence provided a troubling contrast.
Internationally, the lead was taken by the WHO’s Global Programme on AIDS (GPA) under Jonathan Mann. Teams visited most developing countries, establishing Short Term Programmes on HIV/AIDS, which evolved into Medium Term Programmes run by national AIDS control offices. The emphasis was on risk reduction through information and education. People were encouraged to understand and change their behaviours. Condoms were distributed, testing and counselling made available, and occasionally, where appropriate, needle exchange programmes set up.
It was recognized that programmes needed to look beyond individual risks and understand that behaviours take place in a social, political, and economic environment. In every society, regardless of where and how the epidemic enters, those who are marginalized, stigmatized, and discriminated against are at greatest risk. Sadly, the WHO failed to sustain the leadership and imagination needed to tackle the epidemic. The response – outside the GPA – was technical, treating the epidemic as primarily a health problem. It was hampered by the distaste for the sexual nature of the disease. All international agencies, from the Food and Agriculture Organization (FAO) to the World Bank, consistently underestimated the potential scale of the epidemic. In building the GPA, Mann bypassed many entrenched interests, bringing him into conflict particularly with Dr H. Nakajima, WHO Director-General from 1988. In 1990, Mann resigned in protest over the way he and the issue of HIV/AIDS was being sidelined. However, the importance of AIDS led, in the early 1990s, to the establishment of UNAIDS, as a joint programme, initially of WHO, UNICEF, UNDP, UNESCO, UNFPA, and the World Bank. This began operating, under the leadership of Dr Peter Piot, in January 1996.
It is noteworthy that the most effective early responses to the epidemic were ‘home-grown’. In Thailand, HIV prevention and control became a top priority in 1991/2, under the unelected government of Prime Minister Anand Panyarachun. The wake-up call was concern that the epidemic might have major economic impacts, especially on tourism. An AIDS policy was put in place under the Office of the Prime Minister with a multi-sectoral National AIDS Prevention and Control Committee chaired by the Prime Minister. A massive public information campaign began, and the ‘100% condom programme’ required mandatory condom use in all commercial sex establishments. Prostitutes were screened at government sexually transmitted disease clinics and issued with free condoms. Male patients were asked who they had had sex with. If they were infected in a brothel, it was assumed to be non- compliant, and could be closed.
In Senegal, following the fi rst AIDS case in 1986, a National AIDS Programme was established with strong political support. Religious leaders played a crucial role, with Islamic organizations becoming involved as early as 1989 and imams giving public support to AIDS-prevention activities. Commercial sex work was legal and licensed so could be regulated.
Most controversial was prevention in Cuba. In the 1980s, the authorities tested the entire population, isolating those found to be HIV positive in ‘sanatoria’. They continued testing returning migrants. At the end of 2005, there were only about 4,200 infected Cubans. This draconian approach required a high degree of governmental control, a compliant population, and non-porous borders, and was never an option for most countries. It was tried in the former Soviet Union, with massive campaigns of testing for everyone who could possibly have been exposed to the virus. Apart from the expense and difficulty of implementing such a programme, many argue it violates human rights. The ‘opt-out’ testing in Botswana and door-to-door testing in Lesotho, discussed later, are an uneasy compromise.
In the examples above, HIV spread was successfully prevented. Uganda was the first country to bring prevalence down. At its peak, in the late 1980s, prevalence there was 35% in some groups, and currently among adults it is estimated at 6.7%. The reasons have been extensively debated. The religious right argues it is due to behaviour change, social marketers advise condoms were critical, and others suggest it was simply the natural progression of an epidemic. What is agreed is that, for intervention to work, the early, realistic recognition of the disease was crucial. President Museveni responded proactively, fostering a multi-sectoral response. Ordinary Ugandans saw the evidence of the epidemic and responded to the messages. Non-regular partnering decreased, sexual debut was delayed, and condom use increased. Crucially, this national response worked effectively at local levels.
The shift to treatment
The emphasis from the beginning of the epidemic until 1996 was on prevention and care of the sick. There was little focus on treatment, despite the growing numbers of deaths of young adults, parents, farmers, and breadwinners. In 1996, there were major changes. In Geneva, UNAIDS began functioning. There was the announcement of new drugs at the XI International Conference. It was hoped the drugs could completely eliminate the virus from a patient’s body, and while this optimism proved unfounded, treatment can turn AIDS into a chronic, manageable disorder. Initially, costs of treatment were phenomenal – a minimum of US$ 12,000 per patient per year. Treatment was not easy: there were unpleasant side effects; patients had to take large numbers of tablets, some with food and some on an empty stomach; and some drugs had to be kept in cold storage. For most infected people, expensive drugs were far beyond their reach, but in the rich world the number of people dying fell dramatically.
By the end of the 1990s, with South Africa reporting the largest number of HIV infections in the world, the XIII International AIDS Conference was held in Durban – the first in a developing country. Nelson Mandela closed the conference with a call for action – that drugs should be made available and accessible to all.
Funding and treatment
Since 2000, the response has been dominated by new initiatives and treatments. The price of drugs fell dramatically. Indian companies led the way, manufacturing generic drugs at a fraction of the cost of brand names. One, Cipla, offered to make AIDS drugs available at less than US$ 1 per day. In South Africa, the Health Ministry was forced through legal action to supply treatment to prevent mother-to-child transmission. WHO published guidelines for providing antiretrovirals in resource-poor countries, and listed 12 essential AIDS drugs. In 2001, the United Nations Secretary-General, Kofi Annan, called for spending on AIDS to be increased tenfold in developing countries, and the Global Fund was established. The second major initiative was the US PEPFAR funding. The new WHO Director-General, Lee Jong-Wook, named HIV/AIDS as his top priority in his first speech, declaring the failure to deliver treatment was a global public health emergency. On World AIDS Day 2003, he announced (with UNAIDS) a new plan called ‘3 by 5’, aiming to treat 3 million people in poor countries by the end of 2005. This target was not achieved: although the number of people on treatment tripled, it only reached 1.3 million in December 2005. At the end of 2006, an estimated 2,015,000 people in low- and middle-income countries were on ART. Financial resources are greater than ever. In 1996, about US$ 300 million was available in low- and middle-income countries. By 2006, there was US$ 8.3 billion accessible, although this fell short of the estimated requirement of US$ 14.9 billion. UNAIDS expects, on current trends, there may be US$ 10 billion in 2007. In 2008, some US$ 22.1 billion will be needed, though there are at the time of writing no estimates of how much money will be available beyond 2008. The funding does not consider capacity, or whether or not the money will be spent effectively. The emphasis has swung towards a ‘re-medicalization’ and technical interventions. The reasons for this are deep-seated. Availability of treatment, the decline in drug prices, and increased resources mean there is an option for medical responses. But the changing emphasis is also driven by unwillingness to engage with the drivers of the epidemic: the social justice issues.
Despite rapid scientific advances, there are still no simple solutions. There will almost certainly not be a vaccine available by 2015, the date the Millennium Development Goals were to be met. In 2007, there were just four pharmaceutical companies with vaccines in trials; only one candidate has gone though all the processes and it was not effective. The International AIDS Vaccine Initiative points out that global spending on an AIDS vaccine is less than 1% of spending on all health product research and development.
Microbicides could prevent the sexual transmission of HIV and other STIs when applied topically. There are about 60 substances being tested, but no safe and effective product is yet available. If the current research is successful, it is hoped a microbicide could be available by around 2012. Use of microbicides could be female-controlled, which is important for those for whom condoms, mutual monogamy, and STI treatment are not feasible.
The research into drugs is ongoing, and both new drugs and new combinations are being made, developed, licensed, and marketed. In June 2006, the first ‘once-a-day’ tablet, a combination of three drugs, was announced, making it easier for patients to comply and helping to prevent drug resistance. In the developing world particularly, ‘alternative’ therapies are popular, and many people in low- and middle-income countries see traditional healers as their fi rst line of treatment. Treatments range from nutritional supplements and immune system boosters that have been subject to scientifically rigorous research, to downright quackery with charlatans marketing potions revealed to them in dreams. Unfortunately, these therapies are not tested or licensed in the same way as conventional drugs. There is a role for alternative therapies and therapists if they are proven to help and are monitored and licensed. The challenge is for allopathic and alternative medicine to work together.
Alternative paradigms for testing
One crucial element of intervention is for people to know their HIV status. If a person knows they are negative, they have incentives to remain so. If they test positive, they can make lifestyle changes, access services, and avoid re-infection with HIV. Uptake of voluntary counselling and testing has been slow. Two innovative approaches are being tried in Southern Africa. In Botswana, a national programme for ART was introduced in 2003. This programme, a partnership between government, the Gates Foundation, and Merck, a drug company, found that, after an initial rush, patients were slow to come forward. Government introduced ‘routine testing’. Every person attending a public health facility will be tested unless they opt out, or specifically decline. The evidence is that close to 90% are tested. In Lesotho, a ‘Know Your Status’ campaign was launched in mid-2006. Teams go from door to door offering ‘on the spot’ testing. Those tested should be able to access counseling and support, and drugs when necessary. This programme is controversial. Early reports were that some of those charged with carrying out the testing did not know their own HIV status and would be unwilling to undergo testing. There are also concerns about the ability to access follow-up services and confidentiality.
If the stigma and discrimination surrounding HIV are to be addressed, knowledge of one’s HIV status and a normalization of the epidemic are essential. However, there are many issues surrounding testing, and simple ‘know your status’ campaigns are not sufficient. Neither is it enough to know one’s HIV status. An infected person should also know their CD4 cell count, which indicates whether they need treatment, and provides a baseline for monitoring health
