(BRUSSELS) — “According to UNAIDS, for the first time this year we can celebrate the possibility of the eradication of HIV and therefore the end of AIDS in the foreseeable future. But I argue that we are nowhere near to the end. So we should stop saying that because we run the risk of making people complacent about AIDS.” According to Mark Heywood — a South African activist, founder of the NGO Treatment Action Campaign (TAC) defending the rights of people infected with HIV and former chairperson of the UNAIDS Reference Group on HIV/AIDS and Human Rights — there are still a few challenges ahead to continue to respond to the epidemic.
“It is the first time I am not in South Africa on World AIDS Day,” he explains during an intervention in Brussels. “Maybe this is a sign of times: It means it is possible to look at progress in South Africa from a distance. And it is probably also good to see what is happening elsewhere.” In other words, it is a good moment to take stock of the situation as regards the HIV/AIDS epidemic.
“There is no doubt that in the last decade there has been significant progress in the fight against AIDS,” Heywood confirms. “This is obvious when we look at the situation is South Africa, a country which is still home to almost a quarter of the world’s HIV infections – 5.1 million people according to UNAIDS – and that in some ways represents the more global situation. To give you but one significant example, vertical transmission of HIV is now reportedly under 2.5 percent down from 25-30 percent a decade ago. As a result there has been a reduction in infant and under-five mortality. Last week, it was reported that Cotlands Baby Sanctuary was closing its AIDS hospice, because for the last three years, there have been no child deaths.”
But the picture is far from being all rosy. According to Heywood, governments and the United Nations have paid insufficient attention to the quality of HIV prevention and treatment programs; as a result, there are still some major challenges ahead, and one of them is the level of retention of patients. There is a large gap between the number of people on treatment and the number of those in need of it. According to a recent study, only about 18 percent of patients diagnosed with HIV remain continuously in care until they are eligible for antiretroviral therapy. As a result, there are 9 million people who should be on treatment, but who are not.
The likelihood of reducing this gap has been severely undermined by signs that the donor commitment needed to sustain and increase the current momentum in the fight against HIV/AIDS is waning in the context of the world economic crisis. “But it is not true to say that there is no money,” Haywood argues. “It all depends on your priorities. At the beginning of the epidemic, there were flows of money. So, we have to keep on insisting on resources and spend them properly; it is not the time now to stop funding and cutting budgets.”
What is holding us back?
A lack of resources is not the only impediment to reaching a more efficient fight against AIDS, though. Stigma, discrimination and human rights violations are widespread. They include, for example, verbal and physical abuse of people infected with HIV and AIDS, denial of employment and denial of health care and social services. The fear of discrimination associated with the disease has been a significant deterrent against accessing testing and treatment. Therefore, if HIV prevention and treatment are to succeed, it is critical to address the human rights violations that act as barriers. Protection of human rights is as essential to an effective response to HIV as resources.
In sub-Saharan Africa, a majority of countries have laws that criminalize key populations such as sex workers, gays and injection drug users. The existence of such laws makes it increasingly difficult to reach these groups with HIV services. “In some Arab countries, people infected with HIV have no rights at all. So there is a link between protecting human rights and having access to good treatment. We have to protect the human rights of vulnerable people because this is where the epidemic grows,” Heywood adds.
According to international human rights Conventions, a population’s health is primarily a national responsibility: every state owes all of its inhabitants a comprehensive package of essential health goods and services under its obligations to respect, protect and fulfill the human right to health. But health is also a more global responsibility: The international community has the duty to augment the capacity of low- and middle-income states to ensure their population’s health.
The integration of HIV and AIDS programs within global health programs has been identified as the only way to allow a more efficient use of resources and a more sustainable response to HIV and AIDS. Therefore, Heywood and others call for an effective global health governance structure that clarifies national and global responsibilities for health and creates accountability around them. But this in itself is not enough, he says.
“A framework convention that allows people to hold governments accountable is great. But what is more important is to know what it means and to use it. You don’t change things by sitting in a meeting room in Geneva.”
And to prove his point, he again refers to South Africa. “If you want a model for legislation and policy that protect human rights in a country, this is South Africa. We used Court to overturn discrimination against HIV-infected people; we have a sentence saying that airline companies should stop refusing to hire people affected by HIV; we have an Employment Equity Act, the Medical Schemes Act, provisions in the Constitution … you name it. On paper, the policy is very good. But adopting laws is not enough. It is pretty useless if it is not accompanied by public awareness.”
Community empowerment and mobilization to know and claim one’s rights is thus key to the effort. “Know your rights” campaigns that empower those affected by HIV are essential. “You have to make people realize and understand the disease; you have to make them realize they have rights.” In the mind of Mark Heywood, the two are closely linked.
“Without the conviction that access to treatment is a human right, it would not have been possible for activists to mobilize their societies and to force the emergence of political commitment at a governmental level.”
However, as we go into 2013, both social mobilization and respect for fundamental human rights approaches are being threatened. And despite civil society being considered a “critical enabler” in the UNAIDS Investment Strategy, there seems to be no strategy to sustain civil society or to advocate for its funding. “The motor of response to the AIDS/HIV epidemic has been civil society and people with HIV; if you allow this motor to run out of fuel, in 10 years time, we’d be telling a different story. So, suggesting that with one push we will cross the finishing line is just not true. In my view, it is naïve, if not downright irresponsible, to talk of ‘the end of AIDS’,” Heywood concludes.