And yet as the world convened at the International AIDS Conference in Durban in 2000, the first time such a global convening had occurred on African soil, we already knew that combination antiretroviral therapy (ART) was highly effective in reducing AIDS and death. But these life-saving drugs were unavailable to the majority of the 5 million South Africans living with HIV because of their cost, and a political administration in AIDS denial. Hospitals throughout South Africa were full of dying patients, most of them young and in the prime of life.
Our greatest challenges then to counteract the devastation that was unfolding included the lack of national political will, with a President who openly supported fringe denialist theories and a health minister who advocated for traditional remedies and was outspoken about her negative beliefs on antiretroviral therapies. Other challenges that undermined individual benefit from antiretroviral therapy included adherence to difficult regimens and the fact that so expensive a commodity had to be rationed to the very sickest individuals.
In our modest but unique clinic at New Somerset Hospital, Cape Town we were able to rescue a growing number of HIV survivors by recruiting many sick AIDS patients into phase 3 drug trials of combination therapy. We were able to show how effective these agents were even in populations with extraordinary immune deficiency.
In so doing, we were able to counter negative perceptions that ARVs couldn’t be used in Africa and showed not only could South Africans take the daily medications, but they could do so with better adherence than reports emanating from the West.
Early use of these new drugs meant that we established expertise that could be shared with colleagues and next generation practitioners to ensure more rapid skills transfer. Perhaps, even more critical, the first cohort of beneficiaries who felt as if they had been “resurrected” expressed a desire to “give back” by helping their peers take their medication well. This inspired the inception of the Sizophila Counsellors which formed the basis for a number of subsequent peer-led community outreach efforts.
Durban 2000 was a watershed conference, which threw light on the overwhelming burden of need in the South and the disparities that drug costs and drug unavailability created. The effort of the global community over the next five years was legendary. The UNAIDS, World Health Organisation (WHO), the newly initiated President’s Emergency Plan For AIDS Relief (PEPFAR) and the Global Fund unleashed an unprecedented mobilisation of treatment and access to care in the most burdened countries.
In our own community based project, Hanan-CRUSAID ARV clinic in Gugulethu, Cape Town, treatment rapidly increased from just 150 treatment places to a continuous and sustained 80 new treatment initiations every month. Now more than 12 000 individuals have accessed care from this clinic thanks to a Global Fund Grant. Treatment was extended from adults to children and adolescents and this clinic continues to thrive, now fully funded by the Western Cape Provincial health authorities.
Fast-forward to 2016 and many lessons have been learned. With almost four million South Africans having initiated ART, declines of life expectancy in the country have been reversed. Today, with a supportive national health department leading the way, HIV is largely an outpatient disease, and is managed throughout the country at district level with the help of community structures. We also now have better tolerated regimens that cost substantially less with once-a day-dosing. Tuberculosis is inextricably linked to HIV and improving TB-case finding in HIV programs has improved TB survival. In addition, we have defined benefits of ART at all CD4 T-cell counts and have also shown the prevention benefits of ART. Additionally, we now have prevention options for every mode of HIV transmission such that client-tailored packages can be offered that go far beyond the mainstay of abstinence, monogamy and consistent condom use.
The challenge facing us now as we contemplate again the arrival of many thousands of delegates to Durban for the 21st International AIDS Conference, is how to translate the transformational benefits of individual HIV care and prevention into population benefits.
The need for universal coverage to realise population benefits continues to challenge the national health budget, the ingenuity and the innovation of the South African health care sector. Universal testing, treatment and prevention has exposed our inability to reach the difficult-to-reach populations in South Africa. Durability of treatment will be tested as individuals continue into their second and third decades of ART. Inadequate health seeking behaviours, social mobility and over-extended health facilities present real challenges to tracking individuals in the epidemic and our efforts to fully extend treatment. The need not only to reach enormous numbers of individuals and to ensure their retention and viral suppression in care exposes the weaknesses and increases pressures on our health care system.
There is increased recognition that epidemic control will remain elusive without interruption of transmission in the highest incidence settings. This will require additional resources and galvanizing an already stretched health system to fill these gaps, as well as mobilisation of communities well beyond health facilities. This extent of scale-up of treatment and prevention raises questions of funding and supply. The lack of international focus due to competing global health and other perceived social and political needs begs the urgent question of how these efforts will be funded through an already overstretched national fiscus alone.
In 2000, South Africa, despite its substantial role in the global epidemic, found itself on the back foot in terms of our response and our contribution. Many were confused by the mixed messages emanating from the Department of Health in Pretoria. Despite this, the message of Durban 2000 and the Durban Declaration spurred civil society, international agencies and individuals to unite around a common treatment goal. The picture happily looks very different in 2016.
We welcome the world to Durban in July with a very different and positive narrative – but time, resources and tenacity will tell whether we are able to take a meaningful lead, start to establish a firm grip on our epidemic and turn the tide on the South African epidemic for ever.
Professor Linda-Gail Bekker is Chief Operating Officer and Principal Investigator at The Desmond Tutu HIV Centre and Professor at the University of Cape Town.
Professor Robin Wood is Chief Executive Director at The Desmond Tutu HIV Centre and Professor at the University of Cape Town.
An edited version of this story was also published on IOL