AIDS 2016: Treatment, Prevention & Non-Discrimination is Still Our Human Right

*Speech delivered by Nkhensani Mavasa, Chairperson of the Treatment Action Campaign (TAC), at the opening of the 21st International AIDS Conference on 18 July 2016*

Nkhensani Mavasa, Chairperson of the Treatment Action Campaign (TAC) Photo: AP
Nkhensani Mavasa, Chairperson of the Treatment Action Campaign (TAC)
Photo: AP

Deputy President, Minister of Health, Premier of Kwazulu-Natal, MECs for health, foreign dignitaries, leaders of the global AIDS response, people living with HIV, friends, comrades. It is a privilege to address you on this historic day.

We are here 16 years after a young boy with HIV named Nkosi Johnson addressed this same conference. He was ignored by our political leaders then. We know he would not be ignored today.

We are here 16 years after the Durban Declaration said ‘NO’ to the madness of AIDS denialism.

16 years after many of us marched on the streets outside this building demanding access to ARV treatment and the start of PMTCT programmes in developing countries.

Our marches then helped save 15 million lives. After we marched, the world woke up to the political crisis of AIDS. It started to act.

If activists had not marched then I would have been denied treatment.

I would be one of your statistics.

My name is Nkensani Mavasa. I am 38 years old and living with HIV. I am the chairperson of the Treatment Action Campaign. We are a movement of 5,000 poor people in South Africa. Most of us are women. Most have HIV.

I come from Giyani, a rural town in Limpopo province where access to health services is still a challenge. Where I live, we have to travel far to clinics. When we get there, often there are too few healthcare workers. Often people wait for many hours and then have to go home without medication or even seeing a healthcare worker. The reality is that this has not changed much in the last sixteen years.

Friends, we learnt last year that all people living with HIV must have access to anti-retroviral treatment. That knowledge is so important – but it is like starting all over again. Once more we have a huge challenge: 20 million more people on treatment *as soon as possible*.

We know that today there are 17 million people on treatment. After many years of activism, billions in donor dollars, through the efforts of hundreds of thousands of healthcare workers we have achieved 17 million.

But another 20 million people still need treatment … and many of those people live in places like Giyani.

The main task before all of us gathered here is to ensure that an additional 20 million people can access treatment – and not just treatment, but also all the health care and counselling that is our human right and must go with it.

*We NOW need a road-map to treatment for all* – not just talk – a ROAD MAP that is backed up with the money and political will to make it a reality. In South Africa we have a 5 year National Strategic Plan. For the world we need an International Strategic Plan. Do you agree?

It is possible to treat everyone and prevent every possible infection. But to do so we must be honest with ourselves and we must be serious. I will briefly mention three MAJOR obstacles on the road to treatment for all.

Firstly, to bring treatment and care to an additional 20 million people we will need healthcare workers.

Where possible we will need to shift tasks to properly, supervised and paid trained community healthcare workers and lay councillors. We need a global plan for this now. We cannot leave it to chance because we know chance does not deliver.

Do you think we can have strong healthcare systems without people?

If we agree, why is it that here in South Africa committed community healthcare workers and lay councillors are losing their jobs?

Where I live in Giyani, people are defaulting because there are no healthcare workers to help them stay on treatment.

And healthcare workers who do have jobs are overworked and struggling to keep their heads above water.

How will we we ever reach the 90-90-90 targets without thousands more healthcare workers?

Secondly, we can’t bring treatment to an additional 20 million people if our healthcare systems are mismanaged and rife with corruption.

This is a problem across the world – not just here in South Africa.

Too often, at conferences like these, we focus on the technical side of fixing healthcare systems, but turn a blind eye to the political problems.

Let me elaborate on one example here in South Africa …

A man facing multiple serious charges of fraud and corruption is in charge of the collapsing public healthcare system in the Free State province. The Free State has a population of three million people. HIV prevalence is 14%. Life expectancy is the lowest of all SA’s Provinces.

This man has victimised community healthcare workers and whistle-blowers. On his watch the Free State lost a quarter of its public sector doctors last year.

This person’s name is MEC Benny Malakoane.

We cannot reach 90-90-90 if we turn a blind-eye to the Benny Malakoane’s of the world.

Thirdly, we will not bring ARV treatment to an additional 20 million people if we allow our political leaders to continue to be complacent about HIV.

Worse than that, in too many countries political leaders are clamping down on civil society organisations that fight HIV. We are not the enemy. The enemy is complacency and corruption.

We cannot continue to speak of an ‘end to AIDS’ when

  • less than half of people who need treatment have access to treatment;
  • when new infections are rising in parts of the world;
  • when over one million people still die of AIDS and TB every year;
  • when civil society organisations are being intimidated.

That is the old AIDS we know. It’s not going away without a big fight.

Yes, we have made massive progress. Thank you Mr Sidibe. Thank you Deborah Birx. Thank you Minister Motsoaledi. But it’s not been half enough. We ask UNAIDS and others to stop spreading complacency by talking about an ‘end to AIDS’.

Our lives are not an advertising campaign.

Friends, we must demand action from world leaders based on the facts … and the most important fact is that 20 million people need treatment right now.

Let us also not beat around the bush about political priorities. The United States spends $600 billion on defence every year. That, while the Global Fund struggles to raise not even $30 billion.That, while the world invests less than $0.7 billion on TB research per year.

This is a disgrace.

 

HIV and TB is still a crisis in our communities. We must make it a crisis for our elected representatives.

We have rights. We must demand better.

Friends, comrades, when your house is burning with your family inside it you don’t quietly ask for help.

You beg. You scream and shout. You demand.

Our house is still burning.

President Obama, Chancellor Angela Merkel, President Xi Jinping, President Zuma

… our house is still burning.

Please don’t turn your backs on us.

I thank you

AIDS 2016: Stephen Lewis’ keynote address delivered at #TB2016

By Stephen Lewis

Durban, South Africa, July 17,   2016

Allow me to set a context for these remarks. Everyone in this room knows more about TB than do I. I can’t pretend to expertise; I merely have observer status. You’ve had an extraordinary array of break-­‐outs and plenaries of scientific and academic excellence that I can’t begin to rival. But what I think I can do, hope I can do, is to provide some personal reflections on some selected issues, based in part on the work on HIV, and in part on life experience. I shall leave out a great many things, choosing instead to settle on those where I feel I have something to contribute.

Stephen Lewis
Stephen Lewis

Curiously, I stand before you utterly perplexed. I have    spoken to a goodly number of people, and read a great deal of material, and I’m not at all sure I understand what, exactly, is required to get past the incremental response to   TB.

My perplexity was further accentuated by the report issued by UNAIDS on the eve of the conference, titled “The Prevention Gap”.

Many of the findings were ominous. Having paraded the self-­‐ congratulatory chorus of “Ending AIDS by 2030”, presumably in large measure to attract donor funding, suddenly the alarm bells are ringing: prevention has stalled at an average level of

1.9 million new infections every year since 2010 … no single region of the world has recorded a significant drop,    and some—take Eastern Europe/Central Asia for example—have recorded astronomic increases; further, a full 35% of new infections are rooted in Key Populations; among adolescents in sub-­‐Saharan Africa, age 10 to 19, seventy-­‐five percent of new infections occur in girls—an astonishing commentary on our failure for 35 years to address gender inequality … if rhetorical extravagance of monumental proportions meant anything, there’d be a zero infection rate amongst girls; and finally, the money from international sources is falling dramatically … from roughly $10 billion in 2013 to $8 billion in 2015. We are in crisis mode.

Now why do I raise this frontally in this speech? Because nowhere—I repeat, nowhere—in the narrative text is the word tuberculosis mentioned. I was   stunned.

However, stunned turned out to be as nothing when I received, this morning, a copy of UNAIDS latest report, just released, titled “90-­‐90-­‐90: On the Right Track Towards the Global Target”. In 54 pages of text, TB is mentioned three times, entirely in passing, as though it were utterly inconsequential. I verged on cardiac arrest. What was I missing? Isn’t it accepted knowledge, everywhere, that you can’t get to 90-­‐90-­‐90 without defeating tuberculosis?

Let me elaborate on my apparent naivete and perplexity. When I started in the role of Envoy in 2001, virtually every hospital I visited in the high prevalence countries told me that the co-­‐ infection rates were a scary ten to fifteen percent. By the time I left the role at the end of 2006, it was commonplace to hear of co-­‐infection rates of 30 to 50 per cent rising, on occasion, to 70 per cent (in Lesotho at one point it reached 92%). So in my understanding of the pandemic, AIDS and TB were inseparable.

I remind you of the words of Dr. Motsoaledi: quote “We will not end AIDS without ending TB. We will either succeed or fail together, so walking alone is not an option … In South Africa  we are ensuring that every person who receives an HIV test is also tested for TB, and every person with TB, is tested for HIV”, end quote. How much clearer can you be?

So wouldn’t you think that any report on HIV/AIDS, whatever its rationale, treatment or prevention, would ring in some reference to TB? Wouldn’t you say—I don’t think this is intellectual innocence on my part—that UNAIDS is a logical repository to drive the response to tuberculosis; if the two are stitched so relentlessly together, and TB is now a greater killer than AIDS, would you not think that the entity charged with the international institutional responsibility for AIDS, would be the protagonist in the fight against  TB?

Let me admit that I haven’t discussed this with Michel Sidibe. But he would be well within his rights to say ‘Look Stephen, we’re not an agency, we coordinate the joint UN Program on HIV/AIDS, involving eleven participating UN agencies … it  would take forever to get their approval if we ever got it at all. And then we have our PCB, our Program Coordinating Board, who would make us jump through an eternity of hoops.’

He would be right, but look what it leaves us with: there’s no international organization, equivalent to UNAIDS, driving the response to TB. That’s something I want to return to later in this speech. I should add of course that WHO is deeply committed to eradicating the scourge of TB, but WHO is a specialized agency with particular scientific competence, and it simply doesn’t have the people on the ground to lead the fight. We all know that.

Nor do I mean for a moment to diminish the STOP TB Partnership, and the same of course for The Union. But these are not powerful international entities, rooted in the United Nations, and with vast budgets at hand.

And that leads to another reflection. There is no separate financial machine behind TB as there is with PEPFAR for AIDS and the President’s Malaria Initiative for Malaria (although it must be noted that PEPFAR has sunk over a billion dollars into TB in recognition of the integrated relationship). TB is overwhelmingly funded by the Global Fund; without it, there would be a vacant pipeline. As has been noted, some 77% of funding for TB in Africa comes from the Global Fund …  however, only about 17% of the Fund’s resources go to TB … some 53% to HIV and 30% to malaria. Tuberculosis is the impoverished cousin … a matter of some consternation since it’s the infectious disease that has ascended to the status of the engine of death. One and a half million annually, and not a   single death necessary. What in God’s name is wrong with the world?

I want to say something about this funding crunch, because all of us know that resources are desperately lacking.

Everyone is looking towards the pledging conference in  Montreal, Canada, this fall.

The Global Fund target is $13 billion, and I think they’ll make it, largely because the Canadian Government is exercising intense diplomatic pressure on the donor community. Canada has a new Prime Minister, the darling of the G7, and he is putting his name on the line for the pledging conference. That’s a great thing. In fact, it wouldn’t surprise me if we exceeded the target.

But that prompts another thought, heretical though it may be. The Board of the Global Fund is far too hesitant, too timid, too cautious about asking for money. There would have been no   risk in going for $14 billion with the extra billion designated for tuberculosis. I understand the visceral competing interests of refugees and terrorism, but the international community simply can’t allow a curable infectious disease to rob the world of more lives in one year than all of the competing conflicts  taken together.

Please don’t give me any lectures in realpolitik. This is a world I know. I’ve spent more than fifteen years as an    elected member of a legislature, I was Canada’s Ambassador to the UN, I was a Deputy at UNICEF headquarters responsible for global programming and, incidentally, for overseeing the raising of money for that remarkable organization, and I reported to Kofi Annan for five and a half years as his Envoy on HIV/AIDS in Africa. I don’t usher in that biographic stuff to seek to impress. I do it to say that I learned, over the years, that timidity and passivity are the authors of   misfortune.

This room is filled with principled advocates and activists who would move heaven and earth to defeat this disease, but the collective efforts are compromised by indifference in high  places, by an absence of political leadership, and by  strangulated shortfalls in resources. All of it is unconscionable; all of it is  indefensible.

So because I wanted to make a couple of useful recommendations during this speech, rather than just a prolonged rhetorical spasm, let me share a thought about resources.

Last Thursday, while here in Durban, I phoned Jim Kim,   President of the World Bank. I spoke to Jim, not simply because he holds an exalted position in the world of international   finance, but because in his early days, he and Paul Farmer, when creating Partners in Health, focused significantly on tuberculosis from Russia to Peru. I know that for Jim Kim it’s a living and burning issue, and I also know that the World Bank has done some work on tuberculosis that is highly    regarded.

We talked at some length, he the mentor, I the student, and at the end he said to me: “Stephen, you can tell the audience that we talked, and you can tell them that I told you that I would be willing to sit down with a representative group to discuss, concretely, innovative forms of financing to fund tuberculosis”.

I suggest you take him up on it. If some of you have done it before, then do it again. The invitation was serious. MSF, Partners in Health, STOP TB, the IAS, WHO, the Treatment Action Group, The Union, Results, TAC … whomever, take a stab at it.

I’ve spent much of my adult life excoriating and eviscerating the World Bank. In my mind the Bank will never be able to atone or compensate for the wanton, savage damage it did to Africa with Structural Adjustment programs. That was  financial colonialism run berserk, and Africa is still paying the price. But Jim Kim is a different kind of President of the Bank. Unlike his predecessors he truly believes in the elimination of poverty, and recognizes that TB is the disease of poverty. More, I recall that when Jim headed the HIV program at WHO, he launched the famous 3 by 5 initiative which, though it wasn’t entirely successful, unleashed the roll-­‐out of treatment for much of the African continent. This is a man to take seriously. I urge you to do so.

So is Dr. Aaron Motsoaledi. I read his speech of yesterday morning, and thought it a cogent and powerful contribution to this meeting. Inevitably, he raised MDR-­‐TB and the urgent necessity to summon every fibre of our collective being to extinguish this growing menace that now ravages half a million people a year.

As we all know, in considerable measure, it’s a matter of drugs. As Dr. Motsoaledi said, South Africa has the largest number of people in the world on bedaquiline. But many many more need the treatment. There is also growing hope around delaminid,   but as you know, the drug company, Otsuka is not being cooperative in the provision of significant quantities of    the drug at all, let alone at prices that countries can   afford.

We must somehow come to grips with these drug companies that play fast and loose with human life. It’s important to recognize what’s going on in the larger picture. The drug companies are not operating in isolation; it’s all part of a carefully-­‐orchestrated pharmaceutical plan to stall for time, regardless the human consequences, while increasing numbers of newly-­‐negotiated trade agreements extend patent privileges of brand-­‐name drugs far beyond the privileges provided in WTO treaties. If you think I’m a conspiracy theorist, then I urge you to read carefully the report of a panel, commissioned by the Secretary-­‐General of the UN, on Access to Medicines when it is published in a few weeks time. It will, I believe, be a launching-­‐pad for the necessary international confrontation with the pharmaceutical industry.

This is a life and death struggle. We need these drugs and others desperately. Even now, as you know, the End TB Project is underway, with MSF, Partners in Health and Interactive Research and Development, funded by UNITAID over the next four years. It’s hoped that, from it, there will emerge new regimens to inform the guidance of WHO. Drug companies  should be falling all over themselves to accelerate    the discovery and availability of new drugs and compounds to   battle a disease that need not exist. If I may quote   Dr.

Motsoaledi again from a recently-­‐published article: “It is both a market and a moral failure when pharmaceutical companies do not invest in finding effective cures for the world’s leading infectious disease”.

As a matter of fact, let me move on from that to note a sobering conjunction of figures. In his speech yesterday, Dr. Motsoaledi pointed out that the Global Plan to End TB requires $13 billion a year in funding until 2030. That’s perfectly reasonable: apart from the treatment itself, we have an entire research and development agenda, from drugs to diagnostics, that’s starving. But the current funding levels are one-­‐half of the $13 billion.

Do you hear the echo? As I said earlier, the replenishment target for the Global Fund is $13 billion over three years.

Can someone of astute, Einsteinian mathematical dexterity explain to me how we’re going to get that extra $6.5 billion, with the Global Fund currently providing just seventeen per cent of its monies for tuberculosis? Do you see how nuts the calculations are, how great is the chasm between need and delivery? And I want to make a point that is always raw for some people, but I’m so over-­‐the-­‐hill now that I don’t care  what you might think of me. The BRICS countries where the great majority of TB is found, can summon the resources if they care to. But low-­‐income and middle-­‐income African countries, beset by the pandemic, have terribly limited financial capacity.

So I must ask the question that I’ve often asked before: why, in the history of the pandemic, and now with TB, are African lives more expendable? You can guess what my answer would be.

But I invoked the BRICS countries. And there is one of the BRICS countries of special disrepute: namely, India. The remarkable “Out of Step 2015” report on TB policy in 24 countries, authored by MSF and STOP TB sets out, chapter and verse, the grim disappointment when assessing the failure of so many countries in addressing TB, but India, in particular, makes tough reading … intermittent treatment instead of daily fixed dose combinations, sale of TB drugs over the counter without prescriptions, appallingly slow roll-­‐out of molecular testing, a miniscule number of people on bedaquiline … all of this with 250,000 deaths a year. I would argue that it’s absolutely necessary to name and shame countries, openly, unapologetically, when their political fraudulence puts their own citizens at risk. Enough of the deference. Enough of the gentle, diplomatic niceties.

Does patience never run out?

Surely patience should be exhausted when there’s incontrovertible evidence that citizens are dying of a preventable disease because of the willful negligence of their government. The dossier on India and TB is not pretty; it’s  dismal.

These wonderful NGOs, populated by individuals who scale the ramparts of social change and never give up. I’ve had the opportunity in the last few weeks to speak to Lucica Ditiu, Sharonann Lynch, Joanne Carter, Erica Lessem and many others. Sharonnan and Joanne are particularly good    friends and I take their views of TB as holy writ, but—and it’s an important but—please don’t scar their reputations for any personal opinions I state in this   speech.

Their commitment, as is true of so many in this room, is unflagging, and just as civil society has been instrumental in the progress against HIV, so civil society is now massing together, evermore strongly, in the effort to overcome TB. To that end, there’s a new MSF petition circulating at this conference, supported by all the excellent usual suspects,  called “Step Up for TB: Sign on the Dotted Line”. It demands that all countries upgrade their responses to TB within five hundred days, noting that if the status quo continues, it will take one hundred and fifty years to achieve the goal of elimination. I urge you to join. When civil society is truly enlivened, and it sure is enlivened around TB, then the possibilities of change increase   dramatically.

And one further observation. I want to acknowledge the   presence of Dr. Eric Goosby, the UN Envoy for Tuberculosis, admired by all. I was once an Envoy for HIV, so I know a little of Eric’s job. But there is a difference. I was one of five Envoys … two to cover Asia and the Pacific, one for the Caribbean and   Latin America, one for Eastern Europe and Russia and one for Africa. Our collective task was impossible. I can’t imagine how Eric survives. Mind you, at present rates of progress, we may solve the art of cloning before we solve tuberculosis, and then we can have a cornucopia of   Goosbys!

May I add to this narrative in a way that has barely been  touched in the literature of TB that I’ve had the opportunity to read. If TB is the disease of poverty, about which everyone seems to agree, then please note that the most    impoverished

population, certainly on this continent, are the women of Africa. And given the levels of HIV infection amongst the women, then their vulnerability is   extreme.

It seems to me that this is an argument whose time has come. It’s also an argument that can be documented in human terms. The situation of women and girls figures prominently in the Sustainable Development Goals, and the vulnerability imposed on women has seemed finally to have grabbed the attention of the international community. If I were pushing donors and susceptible governments into a corner, I’d hammer home the theme of women and TB at every   turn.

But let me, as I wind my way to the end of these remarks, return to a proposition I set out at the beginning. I was much struck by International Union Against Tuberculosis Executive Director Jose Castro’s speech yesterday when he rhymed off all those declarations and commitments made in good faith year after year and never honoured. He felt it might be different now … no, he felt it had to be different now. And he felt that the moment of change would come if only we all picked up the gauntlet simultaneously and hurled it in the face of tuberculosis.

It’s an attractive, compelling position. Personally, I’m ready to mount the barricades. But I think the possibility of success could be greatly enhanced if we had a United Nations agency seized of TB, and determined to give new and vital support to all of you fighting the good  fight.

So bear with me and please hear me out.

The largest and best-­‐resourced UN agency is UNDP, the United Nations Development Program. It’s in virtually every country, it heads the UN family in every country, and it has strong relations with the government of every   country.

If UNDP were to decide to exercise significant leadership on  TB, it could make a stunning impact. But hear this: as some of you may know, UNDP is already involved with TB. It actually has an extensive program testing for and treating TB in Syria. It also executes a number of Global Fund-­‐supported TB programs in selected conflict countries … it has successfully treated 848 thousand cases with a very high rating from the Global Fund on the grants it receives. If we were able to turn on UNDP, it could make a world of difference.

I feel particularly strongly about it given the performance of the HIV/AIDS unit in UNDP, headed by a sublimely effective woman, who is both a lawyer and a doctor, Mandeep Dhaliwal. This is the unit that organized and wrote the report from the Commission on HIV and the LAW, and then, in exemplary fashion—actually unheard of in UN circles—followed up on the report, focusing on human rights, and activity after activity,   from public meetings to judicial training, to inclusive  roundtables to legislative changes in over forty    countries.

More, it’s the HIV unit in UNDP that’s responsible for persuading the Secretary-­‐General to appoint his Panel on Access to Medicines, and UNDP is the secretariat to the Panel.

So you see, there’s reason to believe that UNDP could be a new and  powerful resource.

But I readily admit that as with all things United Nations   related, it can be very difficult to predict the outcome. In this instance, much will depend on the UNDP Resident Representative in the country. If she or he is good, great things follow. If he or she is mediocre and bureaucratic then lousy things follow. The only way to overcome the mediocrity is through an edict delivered by the Administrator. The Administrator, Helen Clark is a nominated candidate for Secretary-­‐General of the UN. You would have to time any overture carefully.

By the way, UNDP gets on well with WHO … a nice touch, given the rivalries within the UN  system.

So let me be clear. There are obviously no guarantees, but because the possibilities are great, I think a representative delegation should approach UNDP. It became clear to me, as I absorbed the issues, that there was a coordinating instrument missing at the heart of this passionate cause celebre. A UN agency, a fund or a program, could play that role superbly if it was persuaded to do so. And then, if there was collaboration with the World Bank, for reasons of funding, we would have the best of both  worlds.

And so I end. And frankly, I don’t know how to end. There’s something terribly frustrating when you see all the pieces on the chess-­‐board ready for checkmate, but you just can’t figure out the next move.

I’ve tried to suggest a couple of entry points. What exhilarates me is the sense that everyone in this room, from every organization, is descending on tuberculosis, with malice aforethought, determined to remove it forever from the lexicon of  infectious disease.

And you know what? That may be enough because you have so many plans in place. And the sheer force of indefatigable determination may wrestle TB to the   ground.

But I’m still troubled. Why? Because like you, I can’t stand the thought of another unnecessary death. So maybe we should try one or two of my suggestions, while relentlessly pursuing our current mandates with supernatural   tenacity.

AIDS 2016: Protecting Human Rights and Reducing Stigma

By Edwin Cameron, Constitutional Court of South Africa

Justice Edwin Cameron
Justice Edwin Cameron

It is a great privilege and an honour to be here.

At the start of a very busy conference, with many stresses and demands and anguishes, I want to start by asking us to pause quietly for just a few moments.

It has been 35 years since the Western world was alerted to AIDS.  The first cases of a baffling, new, terrifying, unknown syndrome were first reported in the northern summer of 1981.  The reports were carried in the morbidity and mortality weekly reports of the CDC on 5 June 1981.

First reports

These last 35 years, since then, have been long.  For many of us, it has been an arduous and exhausting and often dismaying journey.

Since this first report, 35 million people have died of AIDS illnesses – in 2015 alone, 1.1 million people.

We have felt the burden of this terrible disease in our bodies, on our minds, on our friends and colleagues, on our loved ones and our communities.

AIDS exposes us in all our terrible human vulnerability. It brings to the fore our fears and prejudices. It takes its toll on our bodily organs and our muscles and our flesh. It has exacted its terrible toll on our young people and parents and brothers and sisters and neighbours.

So let us pause, first, in remembrance of those who have died –

  • those for whom treatment didn’t come in time
  • those for whom treatment wasn’t available, or accessible
  • those denied treatment by our own failings as planners and thinkers and doers and leaders
  • those whom the internal nightmare of shame and stigma put beyond reach of intervention and help.

These years have demanded of us a long and anguished and grief-stricken journey.

But it has also been a journey of light – a journey of technological, scientific, organisational and activist triumph.

Treatment

So we must pause, second, to celebrate the triumphs of medicine, science, activism, health care professional dedication and infrastructure that have brought ARVs to so many millions.

Indeed, the fact that I am here today at all is a tribute to the activists, researchers, doctors and scientists in the audience.

Many of you were responsible for the breakthroughs that led to the combination anti-retroviral treatment that I was privileged to start in 1997 – and which has kept me alive for the last 19 years.

I claim no credit and seek no praise for surviving. It felt like an unavoidable task.

All of us here today who are taking ARVs – let us raise our hearts and humble our heads in acknowledgment of our privilege – and often plain luck – in getting treatment on time.  That treatment has given us life.

So let us pause, third, to honour the doctors – the scientists – the researchers – the wise physicians and strong counsellors who have saved lives and healed populations in this epidemic.

As important, fourth, let us pause to honour the activists, whose work made treatment available to those who would not otherwise have received it.

We pause to honour the part, in treatment availability and accessibility, of angry, principled and determined activists, in South Africa’s Treatment Action Campaign and elsewhere.  For millions of poor people, their anger brought the gift of life.

Without their courage, strategic skill and passion, medication would have remained unimaginably expensive, out of reach to most people with HIV.  They led a successful campaign that saved millions of lives.

The fact that many millions of people across the world are, like me, receiving ARV treatment, is a credit to their work.

They taught us an important lesson.  Solidarity and support are not enough.  Knowledge and insight are not enough.  To save lives, we need more.  We need action – enraged, committed, principled, strategically ingenious action.

They refused to acquiesce in a howling moral outrage.  This was the notion that life-saving treatment – treatment that was available, and that could be cheaply manufactured – would not given to poor people, most of them black, because of laws protecting intellectual property and patent-holders’ profits.

TAC

The Treatment Action Campaign and their world-wide allies frontally tackled this.  They changed the way we think about healthcare and essential medicines access.

What is more, without the Treatment Action Campaign, President Mbeki’s nightmare flirtation with AIDS denialism between 1999 and 2004 would never have been defeated.

Instead, the TAC took to the streets in protest.  They demanded treatment for all.  And when President Mbeki proved obdurate, they took to the courts.

Because of my country’s beautiful Constitution, they won an important victory.  Government was ordered to start making ARV treatment publicly available.

Today my country has the world’s largest publicly provided anti-retroviral treatment program.

More than 3.1 million people, like me, are receiving ARVs from the public sector.

I am particularly proud that when someone with HIV registers for treatment in South Africa, they should not be asked to show an identity document or a passport or citizenship papers. That is as it should be. The imperatives and ethics of public health know no artificial boundaries.

In the sad history of this epidemic, the triumphs of AIDS activists, on five continents, are a light-point of joy.

So there is much to celebrate. I celebrate the joy of life every day with the medication – which keeps a deadly virus effectively suppressed in my arteries and veins, enabling me to live a life of vigour and action and joy.

But we must not forget that AIDS continues to inflict a staggering cost on this continent and on our world.

What is more important than my survival, and that of many millions of people in Africa and elsewhere on successful ARV treatment, is those who are not yet receiving it.

There still remains so much that should be done. More importantly, there still remains so much that can be done.

Access denied

Too many people are still denied access to ARVs. In South Africa, despite our many successes, well over six million people are living with HIV.  And, though about half of South Africans with HIV are still not on ARVs, from September this year ARVs will be provided to all with HIV, regardless of CD4 count.

Globally, of the 36.7 million people living with HIV at the end of 2015, fewer than half had access to ARVs.

Worse, the pattern of ARV availability is one that reflects our own weaknesses and vices as humans – our prejudices and hatreds and fears, our selfish claiming for ourselves what we do not grant to others.

Most of those still in need of ARVs are poor, marginalised and stigmatised – stigmatised by poverty, sexual orientation, gender identity, by the work they do, by their drug-taking and by being in prison.

HIV and the Law

Dr Jonathan Mann, to whom this lecture is dedicated, did pioneer work in recognising the links between health and human rights. He stressed that to address AIDS, “we must confront those particular forms of inequity and injustice – unfairness, discrimination – not in the abstract, but in its specific and concrete manifestations which fuel the spread of AIDS.”

He recognised that the perils of HIV are enormously increased by laws that specifically criminalise transmission of HIV and exposure of another to it. This was also confirmed by the wonderful and authoritative work the Global Commission on HIV and the Law has recently done.

These laws are vicious, ill-considered, often over-broad and intolerably vague.  By criminalising undefined “exposure”, they ignore the science of AIDS, which shows how difficult HIV is to transmit. Apart from driving those at risk of HIV away from testing and treatment, they enormously increase the stigma that surrounds HIV and AIDS.

Across this beautiful continent of Africa, men who have sex with men (MSMs) remain chronically under-served.  They lack programs in awareness, education, outreach, condom provision and access to ARVs. As a recent study by Professor Chris Beyrer and others has shown, we have the means to end HIV infections and AIDS deaths amongst men having sex with men.  Yet “the world is still failing”.

For this, there is one reason only – ignorance, prejudice, hatred and fear.  The world has not yet accepted diversity in gender identity and sexual orientation as a natural and joyful fact of being human.

Seventy eight countries in the world continue to criminalise same-sex sexual conduct.  Thirty four of them are on this wide and wonderful continent of Africa.

It is a shameful state of affairs. As a proudly gay man I have experienced the sting of ostracism, of ignorance and hatred. But I have also experienced the power of redeeming love and acceptance and inclusiveness.

We do not ask for tolerance, or even acceptance.  We claim what is rightfully ours.  That is our right to be ourselves, in dignity and equality with other humans.

Discrimination on the ground of sexual orientation or gender identity is a colossal and grievous waste of time and social energy.

As our beautiful Archbishop Desmond Tutu has said, when we face so many devastating problems – poverty, drought, disease, corruption, malgovernance, war and conflict – it is absurd that we waste so much time and energy on sexual orientation (“what I do in bed with whom”.)

The sooner we accept the natural fact that gender and orientation diversity exists naturally between us, the quicker we can join together our powers of humanity to create better societies together.

The same applies to sex workers. Sex workers are perhaps the most reviled group in human history – indispensable to a portion of mostly heterosexual males in any society, but despised, marginalised, persecuted, beaten up and imprisoned.

Sex workers work.  Their work is work with dignity.

Why do people do sex work?  Well, ask a sex worker –

To buy groceries, and pay their rent, to study, to send their children to school, and to send money to their parents and extended family.

It is hard work.  Perilous work. Sex workers have a tough, dangerous job.  They deserve our love and respect and support – not our contempt and condemnation.

They deserve police protection, not exploitation and assault and humiliation.

More importantly, they deserve access to every bit of HIV knowledge and power that can protect them from infection and can help them to protect others from infection.

Pre-exposure prophylaxis (PrEP) works for sex workers.  It should be made available to them, as a matter of urgent priority, as part of all national AIDS treatment programs.

In September 2015, the World Health Organization, recognizing PrEP’s efficacy, recommended that PreP be provided to all “people at a substantial risk of HIV,” including sex workers.

When we in South Africa launched our three-year National Sex Worker HIV Plan in March 2016, we proposed providing PrEP to sex workers.  WHO recognized South Africa as the “first country in Africa to translate this recommendation into national policy.”

Beginning last month (June 2016), the first programs began providing daily PrEP to sex workers in South Africa.

Criminalising sex workers is a profound evil and a distraction from the important work of building a humane society.

Especially vulnerable too are injecting drug users. Upon them are visited the vicious consequences of perhaps the most colossal public policy mistake of the last 80 years – the war on drugs.

The vulnerability of injecting drug users is evident in the high percentage of injecting drug users with HIV. Throughout the world, of about 13 million injecting drug users, 1.7 million (13%) are living with HIV.

They are denied elementary life-saving services. This is not on the supposedly “dark” continent of Africa – but in the United States of America.  If you want an example of evidence-ignoring public policy, that causes loss of life and injury, and spread of HIV, do not look complacently to President Mbeki’s South Africa twelve years ago – look to the United States of America, now, and the federal government’s refusal to make needle substitution available to IDUs . While the US government’s decision to partially lift this ban on federal funding for needle exchange programs earlier this year is a welcome development, this decision was only spurred by an outbreak of new HIV cases among drug users in the United States,and the delay has undoubtedly resulted in preventable HIV infections.Injecting drug users living with HIV are further denied access to treatment. And the United States and Canada, healthcare providers are less likely to prescribe ARVs for injecting drug users, because they assume that IDUs are less likely to adhere to treatment and/or will not respond to it. This is in spite of research showing similar responses and survival rates for those who do have access to ARVs.

Taming the beast

We know exactly what we have to do to tame this epidemic.

We have to empower young people and especially young girls, to make health seeking choices when thinking about sex and when engaging in it.

We have to redouble our prevention and education efforts.

Prevention remains a key necessity in all our strategies about AIDS.

Second, we have to test, test, test, test, test, test and test. We cannot promote consensual testing enough. Testing is the gateway to knowledge, power, understanding and action.

Without testing there can be no access to treatment. The more we test, the more we know and the more we can do.

Testing must always be with the consent of the person tested. But we have to be careful that we do not impose unnecessarily burdensome requirements for HIV testing.

HIV is now a fully medically manageable disease. Consent to testing should be capable of being implied and inferred. We must remove barriers to self-testing.

I speak of this with passion – because, by making it more difficult for health care workers to test, we increase the stigma and the fear surrounding HIV.

We must make it easier to test, not harder. Gone are the terrible days when testing was a gateway only to discrimination, loss of benefits and ostracism.

In all this, we must be attentive to the big understated, underexplored, under-researched issue in the epidemic. That is the effect of the internalisation of stigma within the minds of those who have HIV and who are at risk of it.

Internalised stigma has its source in outside ignorance, hatred, prejudice and fear.

But these very qualities are imported into the mind of many of us with HIV and at risk of it.

Located deeply within the self, self-blame, self-stigma and self-paralysing fear are all too often deadly.

We must recognise internalised stigma.

I experienced its frightening, deadening effects in my own life. Millions still experience it.  We must talk about it. And we must find practical ways to reduce its colossally harmful effects.

And, most of all, we must fix our societies.  As my friend and comrade, Mark Heywood, has recently written, we have medically tamed AIDS.  But we have not tamed the social and political determinants of HIV, particularly the overlapping inequalities on which it thrives – gender, education, access to health care, access to justice. That is why prevention strategies are not succeeding.

A better response to HIV, Mark rightly says, needs a better world.  Governments must deliver on their human rights obligations. Activists and scientists must join struggles for meaningful democracy, gender equality and social justice. Activists must insist on equal quality education, health and social services; investment in girls and plans backed by money to stem chronic hunger and malnutrition.

But, to end, I want to return to the light points in our struggle against the effects of this disease over the last 30 years.

I want to end with a thrilling fact – this is that, unexpectedly, joyously, beyond our wildest dreams, perinatal and paediatric ARVs have proved spectacularly and brilliantly successful.

First, let us rejoice that perinatal transmission of HIV can be completely eliminated.  It was about this that the Treatment Action Campaign fought President Mbeki’s government all the way to the Constitutional Court, the Court in which I am now privileged to sit.

Now we know how effectively we can protect babies at birth and before birth from infection with HIV.

In South Africa, the rate of mother-to-child transmission of HIV is now reduced to 4%.  Worldwide, in 2015, 77% of all pregnant women received treatment to prevent perinatal transmission of HIV.

Last year, Cuba became the first country to eliminate mother to child transmission of HIV entirely.In 2016, Thailand, Belarus, and Armenia have also reached this milestone.

More even, fifteen years ago we didn’t know how well babies and toddlers would tolerate ARVs.

We didn’t know just a decade ago how young children born with HIV would thrive on ARVs.

And would they take their ARVS? Would they grow to normalcy?

Instead of this uncertainty, we now know, triumphantly, that ARVs work wonderfully for children born with HIV.

I want to rejoice in the beauty and vigour of my godson Andy Morobi.  Andy and I became family twelve years ago, at the end of 2004.  

He is young, energetic, ambitious and enormously talented. He was born with HIV. He has been on ARVs for the last eight years. Like me, he owes his life to the medical and social miracle of anti-retroviral treatment.

I want to end on another light point. I want to honour the treatment activists from Africa, Europe, North America, South America, Australasia and Asia, who fought for justice in this epidemic.

I want to honour them, like Dr Jonathan Mann, to whom this lecture is dedicated. Like my mentor, Justice Michael Kirby of Australia, for their energy and courage and determination and sheer resourceful and resilience in fighting for justice in this epidemic.

And I want to end by celebrating the fact that we have sex workers here this morning.  They are wearing the T-shirts in the slide a few minutes ago.  The T-shirt say: “THIS IS WHAT A SEX WORKER LOOKS LIKE”

And, most of all, as a gay white man who has lived a life privileged by my race and my profession and my maleness, I ask that we celebrate the astonishing courage of transgender activists, of lesbians and gay men across the continent of Africa and in the Caribbean.

They are claiming their true selves.  They do so often at the daily risk of violence, attack, arrest and imprisonment.

They have the right to be their beautiful selves. They are claiming a right to be full citizens of Africa, the Islands and the world. They have done so at extraordinary risk.

They know that they cannot live otherwise.

It is to these brave people that this conference should be dedicated:

To the sex workers, injecting drug users, migrants, lesbian, gays and transgendered people, the children, the activists, those in prison, the poor and the vulnerable.

It lies within our means to do everything that will ensure whole lives and whole bodies for everyone with HIV and at risk of it.

All it requires is a passion and a commitment and a courage starting within ourselves. Starting within each of ourselves. Starting now.

Thank you very much.

Related articles by Justice Edwin Cameron:

How the law helps – or hinders – the fight against the AIDS epidemic

Editor’s note: Welcome to the first edition of Spotlight

Welcome to the first edition of Spotlight. Spotlight is the new identity of the NSP Review. You can follow Spotlight on twitter at @SpotlightNSP, Facebook at Spotlight NSP or sign up for our electronic newsletter at www.SpotlightNSP.co.za.

Like the NSP Review, Spotlight is published by SECTION27 and the Treatment Action Campaign. Spotlight will continue the tradition of asking the tough questions about the HIV and TB response in South Africa, but also look more widely to the health system and other related issues. As you’ll see in this issue, we will include views from a wide variety of people. Ultimately though, the focus will remain on the lived realities of users of the public healthcare system, measurements of key HIV and TB indicators (see pages 120-125), and on scientific evidence.

Reading through this first issue of Spotlight it is hard to avoid the conclusion that neither the South African nor the international AIDS response is ambitious enough nor is it backed up by sufficient human and financial resources. How to respond to this lull in the AIDS response is likely the most important question facing attendees of the 2016 International AIDS Conference in Durban (see Peter Piot’s article on the challenges ahead on page 35).

While rhetoric about the ‘end of AIDS’ has become pervasive – such rhetoric is premature. Indeed, this point is made in an article by foremost AIDS scientists Chris Beyrer, Linda-Gail Bekker and Françoise Barré-Sinoussi (page 39) and also in an article by Francois Venter (page 11). As pointed out by Leigh Johnson (see page 105), the currently available modelling suggests that HIV elimination is unlikely and that only the first of the three 90s will be reached in South Africa. Lots of food for thought amid the hot air coming from some quarters!

The key facts are clear. 17-million people are on treatment, but another 20-million should also be offered treatment. Around a million people still die of HIV-related causes every year. If you read our KwaZulu-Natal (page 51) and Free State special reports (page 72), you will see that the healthcare systems where these battles are being fought are often severely dysfunctional.

These are the realities that Spotlight will engage with. Yes, we will listen to plans to “end AIDS” – but we will interrogate those plans. Yes, we agree with the consensus that everyone living with HIV should be offered treatment – but we will ask to see the plans for making treatment for all a reality. Yes, we will acknowledge what political leaders say about employing community healthcare workers or supporting independent civil society – but we will also check to see whether these leaders put their money where their mouths are. And even though we are linked to activist movements, we will not hesitate to ask the tough questions from civil society.

As argued by Anele Yawa (page 6), we need to get serious about the AIDS response. Of course, most of the healthcare workers, patients, activists, researchers and government officials are already serious about HIV – but somehow this seriousness gets lost in the corridors at UNAIDS, at the G20, or at the various treasuries around the world. We shouldn’t allow this.

This then is our objective – through collecting and summarising evidence, through serious analysis and reflection, through quality journalism, and by investigating and reporting on what is happening at the coalface of healthcare delivery – we intend to provide the information that will help fuel a more active and ambitious political response to HIV and TB.

These are lofty goals. Our very small team here at Spotlight will not achieve them alone. We need the help of people who are also serious and committed to our struggle against HIV. We thank everyone who has so generously contributed articles to this issue.

We want to hear from you. If you want to write for Spotlight or send a letter to the editor, you can mail us on SpotlightNSP@gmail.com. Let’s get to work!   

Top 10 Asks from Durban

HIV and TB in South Africa

Despite huge progress since the end of AIDS denialism, only about half of the people who should be on antiretroviral treatment in South Africa are receiving treatment in 2016. HIV incidence remains stubbornly high (over 300 000 new infections per year) and TB continues to kill tens of thousands per year (estimates vary quite widely). HIV and TB is clearly still a crisis.

Based on the articles in this edition of Spotlight and on the recent work of the Treatment Action Campaign and SECTION27 we have compiled a list of the top ten priorities for the HIV and TB response in South Africa. While not everyone will agree with everything, we have tried to make a list most people would agree with.

 

  1. All provincial MECs (ministers) for Health, heads of provincial health departments, and others holding key posts in the public healthcare system, who are implicated in corruption, lack relevant qualifications, or lack commitment to public service must be dismissed immediately.
  2. Before World AIDS Day 2016 government must publish a comprehensive and fully budgeted-for plan to provide all people living with HIV in South Africa with a reliable supply of quality antiretroviral treatment.
  3. The Department of Health must launch an ambitious new HIV Counselling and Testing campaign before the end of 2016 to ensure that everyone knows their HIV status. Steps must be taken to prevent coerced testing.
  4. The Department of Health must ensure that every person living with HIV receives at least one viral load test per year. Viral load coverage and viral suppression rates must be reported regularly – broken down by province, by district, and by healthcare facility.
  5. Government must ensure that all schools provide comprehensive HIV and sex education and easy access to condoms from the beginning of the 2017 school year. Whether or not government delivers on this will be a key test of its commitment to reducing the rate of HIV infections in young women.
  6. South Africa must triple its investment in TB R&D and pressure other high TB burden countries to do the same – especially other BRICS countries. South Africa must also take the lead in advocating for an R&D treaty or agreement at the World Health Organisation and must play a leading role in UN processes reassessing the way in which society pays for medical R&D.
  7. South Africa must urgently amend its patent laws so that we can utilize public health safeguards available to us under international law.
  8. Government (not just the Department of Health) must conduct a survey of TB infection control in all public facilities – including clinics, home affairs offices, police stations, and correctional facilities. This must be followed by an ambitious national TB infection control campaign.
  9. The Department of Health must ensure that a single patient identifier is fully implemented in the healthcare system in all provinces before the end of 2017.
  10. Donors must ring-fence at least 2% of all funds flowing into South Africa for supporting independent civil society. Without civil society to hold government to account and to build treatment literacy in communities South Africa’s AIDS response will falter.

­

 

Editor’s note: Welcome to the first edition of Spotlight

Welcome to the first edition of Spotlight. Spotlight is the new identity of the NSP Review. You can follow Spotlight on twitter at @SpotlightNSP, Facebook at Spotlight NSP or sign up for our electronic newsletter at www.SpotlightNSP.co.za.

Like the NSP Review, Spotlight is published by SECTION27 and the Treatment Action Campaign. Spotlight will continue the tradition of asking the tough questions about the HIV and TB response in South Africa, but also look more widely to the health system and other related issues. As you’ll see in this issue, we will include views from a wide variety of people. Ultimately though, the focus will remain on the lived realities of users of the public healthcare system, measurements of key HIV and TB indicators (see pages 120-125), and on scientific evidence.

Reading through this first issue of Spotlight it is hard to avoid the conclusion that neither the South African nor the international AIDS response is ambitious enough nor is it backed up by sufficient human and financial resources. How to respond to this lull in the AIDS response is likely the most important question facing attendees of the 2016 International AIDS Conference in Durban (see Peter Piot’s article on the challenges ahead on page 35).

While rhetoric about the ‘end of AIDS’ has become pervasive – such rhetoric is premature. Indeed, this point is made in an article by foremost AIDS scientists Chris Beyrer, Linda-Gail Bekker and Françoise Barré-Sinoussi (page 39) and also in an article by Francois Venter (page 11). As pointed out by Leigh Johnson (see page 105), the currently available modelling suggests that HIV elimination is unlikely and that only the first of the three 90s will be reached in South Africa. Lots of food for thought amid the hot air coming from some quarters!

The key facts are clear. 17-million people are on treatment, but another 20-million should also be offered treatment. Around a million people still die of HIV-related causes every year. If you read our KwaZulu-Natal (page 51) and Free State special reports (page 72), you will see that the healthcare systems where these battles are being fought are often severely dysfunctional.

These are the realities that Spotlight will engage with. Yes, we will listen to plans to “end AIDS” – but we will interrogate those plans. Yes, we agree with the consensus that everyone living with HIV should be offered treatment – but we will ask to see the plans for making treatment for all a reality. Yes, we will acknowledge what political leaders say about employing community healthcare workers or supporting independent civil society – but we will also check to see whether these leaders put their money where their mouths are. And even though we are linked to activist movements, we will not hesitate to ask the tough questions from civil society.

As argued by Anele Yawa (page 6), we need to get serious about the AIDS response. Of course, most of the healthcare workers, patients, activists, researchers and government officials are already serious about HIV – but somehow this seriousness gets lost in the corridors at UNAIDS, at the G20, or at the various treasuries around the world. We shouldn’t allow this.

This then is our objective – through collecting and summarising evidence, through serious analysis and reflection, through quality journalism, and by investigating and reporting on what is happening at the coalface of healthcare delivery – we intend to provide the information that will help fuel a more active and ambitious political response to HIV and TB.

These are lofty goals. Our very small team here at Spotlight will not achieve them alone. We need the help of people who are also serious and committed to our struggle against HIV. We thank everyone who has so generously contributed articles to this issue.

We want to hear from you. If you want to write for Spotlight or send a letter to the editor, you can mail us on SpotlightNSP@gmail.com. Let’s get to work!   

Top 10 Asks from Durban

HIV and TB in South Africa

Despite huge progress since the end of AIDS denialism, only about half of the people who should be on antiretroviral treatment in South Africa are receiving treatment in 2016. HIV incidence remains stubbornly high (over 300 000 new infections per year) and TB continues to kill tens of thousands per year (estimates vary quite widely). HIV and TB is clearly still a crisis.

Based on the articles in this edition of Spotlight and on the recent work of the Treatment Action Campaign and SECTION27 we have compiled a list of the top ten priorities for the HIV and TB response in South Africa. While not everyone will agree with everything, we have tried to make a list most people would agree with.

 

  1. All provincial MECs (ministers) for Health, heads of provincial health departments, and others holding key posts in the public healthcare system, who are implicated in corruption, lack relevant qualifications, or lack commitment to public service must be dismissed immediately.
  2. Before World AIDS Day 2016 government must publish a comprehensive and fully budgeted-for plan to provide all people living with HIV in South Africa with a reliable supply of quality antiretroviral treatment.
  3. The Department of Health must launch an ambitious new HIV Counselling and Testing campaign before the end of 2016 to ensure that everyone knows their HIV status. Steps must be taken to prevent coerced testing.
  4. The Department of Health must ensure that every person living with HIV receives at least one viral load test per year. Viral load coverage and viral suppression rates must be reported regularly – broken down by province, by district, and by healthcare facility.
  5. Government must ensure that all schools provide comprehensive HIV and sex education and easy access to condoms from the beginning of the 2017 school year. Whether or not government delivers on this will be a key test of its commitment to reducing the rate of HIV infections in young women.
  6. South Africa must triple its investment in TB R&D and pressure other high TB burden countries to do the same – especially other BRICS countries. South Africa must also take the lead in advocating for an R&D treaty or agreement at the World Health Organisation and must play a leading role in UN processes reassessing the way in which society pays for medical R&D.
  7. South Africa must urgently amend its patent laws so that we can utilize public health safeguards available to us under international law.
  8. Government (not just the Department of Health) must conduct a survey of TB infection control in all public facilities – including clinics, home affairs offices, police stations, and correctional facilities. This must be followed by an ambitious national TB infection control campaign.
  9. The Department of Health must ensure that a single patient identifier is fully implemented in the healthcare system in all provinces before the end of 2017.
  10. Donors must ring-fence at least 2% of all funds flowing into South Africa for supporting independent civil society. Without civil society to hold government to account and to build treatment literacy in communities South Africa’s AIDS response will falter.

­

 

Durban: From AIDS 2000 to AIDS 2016

By Professor Salim S. Abdool Karim & Professor Quarraisha Abdool Karim

AIDS Conferences are unique in being a cross between a scientific meeting and a community engagement forum. People from all walks of life attend these meetings and they are a far cry from the usual rigid structure in scientific conferences in order to cater for the range of interests.

018 graphic

As a result, there are plays, movies, music concerts, art exhibitions, marches, poster protests, stump talks in the community village and other events in the midst of presentations on, for instance, the conformational structure of gp41 on the outer envelope of the virus.

The International AIDS Conference in Durban in 2000 was all this plus a lot more. It created a unique belief that we could collectively change the world and created a common purpose to do just that by doing whatever it took to bring AIDS treatment to all those who needed it. Critically, scientists and clinicians walked alongside activists, artists, drug company executives, policy makers, front line health care workers, political leaders, clergy, judges and just ordinary people to say altogether that the global inequity in AIDS treatment can no longer be tolerated and that it must change. Each person chipped away at the edifice of inequality and collectively achieved the goal of bringing down the wall of inequity as the prices of the drugs were brought down and international solidarity led to funding becoming available to provide treatment to all those who could not afford it.

Winning the bid to host AIDS 2000 in Durban

Following the establishment of democracy in South Africa in 1994, Quarraisha Abdool Karim was appointed as the Head of the country’s AIDS control programme. At the time, she was also a member of the International AIDS Society’s (IAS) governing council and proposed Durban as a venue for the AIDS Conference in 2000. To create a group to work on the bid, she called a meeting in Pretoria at which Hoosen (Jerry) Coovadia was appointed to lead the conference with Salim Abdool Karim as its Scientific Chair and Gustaaf Wolvaardt as its lead organiser. The team quickly prepared the bid documents and Quarraisha obtained the $1million guarantee from government just in time to lodge the bid.

There was one small snag – Durban did not have a functioning conference centre yet – it was still under construction on the site of the old Durban central prison. There were many naysayers who were concerned that the conference had never been held outside the developed world and that a developing country would not cope with the demands for such a big meeting. There were also those who raised their concerns about the safety of delegates, in response to information doing the rounds about crime in Durban and political turmoil in some parts of South Africa. The most cutting of these criticisms was that the “big name” laboratory scientists would not attend a meeting held in South Africa. Well, none of these criticisms turned out to be warranted, as we now know and, thankfully, several of the senior leaders in the IAS, including Stefano Vella, Mark Wainberg, and IAS Secretary-General, Lars Kallings strongly supported the bid.

Once the bid made it to the final stages, Lars Kallings undertook the site visit. The shortcomings in the bid could no longer be kept out-of-sight; they were now glaring! For example, Quarraisha walked Lars around the Durban International Conference Centre (ICC) building site in hard hats, imploring Lars to use his imagination to ‘see’ that the Conference Centre would be able to cope.

A bigger snag then emerged, Durban did not have the required number of five- and four-star hotel rooms – it took Gustaaf’s stroke of genius to solve this problem with his proposal to have two large luxury liners docked in Durban harbour – just 10 minutes from the Conference Centre – for the week of the conference. For every shortcoming and problem that emerged, yet more imaginative solutions were found. Eventually, we got the good news from Lars that the bid had been successful.

Then the hard work of organising the conference starts

Gustaaf was tasked with creating the organisational infrastructure (offices, staff, telephones, vehicles etc) and thus the non-profit company Dira Singwe Conferences was born with the members of the South African conference committee as Directors. Right from the start, the team was committed to drumming as a theme – the local animal skin drum felt and sounded African and the team was teeming with ideas on how to use the drum image, drum logo, drum sound and actual collective drumming in the conference. We were initially hesitant as it did not seem appropriate for a scientific meeting but we were totally sold on it after attending a drumming session arranged by Gustaaf at the ICC. We saw a dozen different ways in which the drum could be used in the conference. To give the drum a genuine South African look, it was covered in Ndebele design. Similarly, the word “AIDS” in the conference logo was coloured in the unmistakable Ndebele design and colours – a great looking logo emerged with a distinct African flavour.

Organising the conference was sometimes challenging. There were too many different constituencies to satisfy. Committee meetings were imbued with strong political overtones while discussions on the scientific content rarely featured except when it came to heated debates on who should be invited to speak. A rapidly emerging challenge was the political situation with concern about the 1999 South African elections and concerns that the country may be in turmoil post-Mandela. Fortunately, none of these concerns materialised – the elections were peaceful and the transition to President Mbeki went smoothly and peacefully. Little did we know that South Africa’s real challenge was lurking – AIDS denialism.

Mbeki and AIDS denialism

Mbeki had proved himself to be a powerful orator and intellectual in his “I am an African” speech at the adoption of the Constitution by South Africa’s Parliament. However, shortly after his election as President, a Jekyll-like side emerged – one characterised by an obsession with AIDS denial. Not only did he see AIDS as a racist concept, where blacks were being labelled as sexual predators and promiscuous people, he also felt that he was sufficiently qualified with his post-graduate training in economics to decipher complex biology and medicine to interpret internet-trolled information to come to the conclusion that “a virus cannot cause a syndrome” and by implication that HIV cannot cause AIDS.

It was particularly striking to note how strongly he held these views and how the sycophants in his cabinet, parliament and more broadly in the ANC, defended Mbeki, seeing an attack on Mbeki as an attack on the ANC. Minister of Health, Manto Tshabalala-Msimang, was his defender-in-chief and saw to it that antiretrovirals (ARVs) were not provided by the state. Aided by several provincial MECs, including MEC Sibongile Manana in Mpumalanga and MEC Peggy Nkonyeni in KwaZulu-Natal, she tried her best to prevent the provision of ARVs for rape survivors.

As if organising one of the world’s largest medical conferences was not challenging enough, we now had a new and even bigger problem. The two key leaders of the AIDS conference, Jerry Coovadia and Salim Abdool Karim, were now regularly in the public eye for their strident and forceful attacks on AIDS denialism. Inevitably, those associated with the AIDS 2000 conference came under attack from Tshabala-Msimang, especially when she had read our public comments and statements challenging Mbeki, thereby incurring her wrath against the conference. She threatened both of us repeatedly but undeterred, we stood our ground. However, things came to a head when she learnt about the Durban Declaration a few weeks before the conference. She was furious. Peter Hale and his colleagues had already by then gathered a few hundred signatures and the number was growing rapidly. The Durban Declaration still stands out to this day as a triumph of science over politics – a clear, irrefutable, dispassionate statement of the facts regarding HIV as the cause of AIDS.

The AIDS 2000 Conference

On the day preceding the start of the conference, Durban City Hall was the starting point for the march by thousands calling for affordable AIDS treatment. Almost in sympathy with the marchers, the city hall was bedecked with an enormous red ribbon around its entire exterior walls. Zackie Achmat led the march and it set the stage for things to come.

Durban was buzzing – people had arrived in their thousands to take part in the conference. Logistics, like transport and accommodation, were all being tested to the limit, but held firm. Key to addressing the accommodation shortfall was the way in which the people of Durban opened their homes to conference delegates. Large numbers of conference delegates were staying in homely Bed & Breakfast establishments or in residential homes. Most of the shops in Durban proudly displayed the conference poster heralding the “AIDS drum” in their windows to show their support.

The opening session of the conference was held in the Kingsmead cricket stadium next to the ICC, as a way to enable the people of Durban to attend at least one part of the conference. Conference delegates were carefully shepherded to the chairs on the playing field while the general public took over the stadium’s raked seating in their thousands.

The funding for the theatrical opening session came from a generous philanthropy and what a spectacle it turned out to be. Flying acrobats and a choir with over 1 000 singers – almost every church choir in Durban was roped in – all in regal costumes pouring forth amazing renditions.

We were worried about this grand opening, but everything was going along well – until Mbeki spoke.

He rambled on quoting an out-of-date WHO report that said that AIDS was not a major health problem and proceeded to lecture the thousands of AIDS patients, activists, health care providers and researchers that AIDS should not be our country’s and the world’s priority. A hush descended with palpable disappointment in Mbeki, turning rapidly into anger. The audience was bristling with disbelief as Mbeki ended. But, Nkosi Johnson, who spoke next, stole the show – his tiny frame conveyed in a booming voice what the world was like for a child of Africa living with HIV. Almost as if he was speaking to the President one-on-one, he explained why everyone should stand up and be counted in the fight against HIV.

Unmoved by this child’s trembling words, Mbeki simply got up and walked out midway during Nkosi Johnson’s speech. The irony of a little child conveying home truths to the President was not lost on the crowd. Their disappointment in Mbeki was now bitter.

The stage was set for global AIDS treatment access

The conference itself became a melting pot for new opportunities and for unlikely interactions – drug company representatives were speaking at community forums in the Community Village about their commitment to affordable treatment; healthcare providers explaining the pain of watching their AIDS patients die helpless in their efforts to fulfil their oaths to ease suffering and community voices everywhere. Speaker after speaker talked about the pain, the suffering, the stigma and the orphans. At the same time, speakers described new options for financing treatment access, using Trade-Related Aspects of Intellectual Property Rights (TRIPS) agreements to overcome intellectual property obstacles, generic drug options and human rights obligations to provide treatment.

The stage was set to create a unique cauldron for the set of ideas for making AIDS treatment possible to percolate. By the time the audience streamed into the ICC for the closing session, it was clear that a new era in AIDS was dawning. With 17 ovations, the packed-to-capacity crowd in the ICC acknowledged and lauded Nelson Mandela for his poignant words of support for their cause, their pain and their attempts to remain alive. His rallying cry for action in ending AIDS injustice and for a world where everyone would be able to live with dignity reverberated in the plenary hall as thousands stood up in a rousing standing ovation.

The AIDS 2016 Conference

The stirring moments of the AIDS 2000 conference are not just distant memories. The conference’s legacy continues in every poor person who is able to get affordable AIDS care today. As the conference winds its way back to Durban on a sojourn that saw stopovers in Barcelona, Montreal and Washington amongst others, it is a good time to contemplate the future of the AIDS Conferences and, specifically, what it should aim to achieve in 2016.

The vibrancy of 2000 is no more. It has been replaced with calm and rational options for the future of the HIV epidemic made possible by a combination of scientific discovery, innovative funding mechanisms and deep commitments from policy makers, activists, researchers, health care providers and many others to make AIDS treatment available.

2016 is an opportunity to take a cold and hard look at what it is really going to take to bring about the “end of AIDS as a public health threat” – the UNAIDS 2030 vision. There is no easy road to this goal but if there is an opportunity to build momentum in 2016 towards this goal, then Durban is the place to do it.

The conference will be the perfect stage to generate new ideas on how to reach this noble goal – it will be an opportunity to create, once again, a common purpose focused on achieving this important goal. It is no easy goal. Some say that it is not even remotely achievable. What better venue to debate these issues than the birthplace of the movement that brought hope, dignity and life to so many?   

 

Professor Salim S. Abdool Karim is the Director of the Centre for the AIDS Programme of Research in South Africa and Professor of Clinical Epidemiology at the Mailman School of Public Health at Columbia University

Professor Quarraisha Abdool Karim is Associate Scientific Director of the Centre for the AIDS Programme of Research in South Africa, Professor of Clinical Epidemiology at the Mailman School of Public Health, Columbia University

The era of viral load is here

By Sharonann Lynch

Viral load testing measures the amount of HIV virus (HIV RNA) in a person’s blood. It is the optimal method for identifying antiretroviral therapy (ART) treatment failure (defined as an HIV viral load greater than 1000 copies/mL), because it is more sensitive and has a higher positive predictive value than CD4 cell count and other clinical indicators.

Diagnosing treatment failure as soon as possible is important, so that HIV-positive people can switch to an effective second-line regimen that suppresses the virus and keeps them healthy. Viral suppression also benefits communities, since it significantly lowers the risk for HIV transmission. Viral load monitoring is more likely to keep people alive and in care than other testing. When used with counselling and other support services, it increases adherence to ART. The latest World Health Organisation (WHO) guidelines recommend that viral load testing occur six months after initiation of ART and every 12 months thereafter.

Expanding access to viral load monitoring will be crucial for achieving the third goal articulated in the UNAIDS ‘90:90:90’ treatment targets, which calls for 90% of people receiving ART to have durable viral suppression (defined as an HIV viral load below 50 copies/mL) by 2020.

A 2015 survey conducted by Médecins Sans Frontières (MSF) found that 47 out of 54 low- and middle-income countries recommended routine viral load monitoring for people on ART in their national HIV guidelines. Despite widespread adoption on the policy level, implementation of routine viral load testing remains limited. Barriers such as high prices, logistical challenges, and lack of awareness limit access to viral load monitoring, particularly in resource-limited settings.

Prices for viral load testing vary significantly between manufacturers and within countries. Countries must be able to accurately forecast demand over an extended period of time, so that paying for viral load testing is economically feasible. The largest initial expense is the testing equipment, which can be priced at up to US$200 000. Countries can avoid high up-front costs by either leasing equipment or participating in reagent agreement plans. These plans charge a fixed price per test, including equipment, maintenance and repairs. Costs are distributed evenly over time, and countries can adapt to new testing products as they become available. There are other expenses: Roche’s test has a global commercial ceiling price of US$9.40 per test, while the price of Siemens’ product ranges from US$54-72.

Increasing demand is an effective method for lowering prices, as it allows countries to take advantage of market competition. In South Africa, where viral load monitoring has already been rolled out, a successful competitive tender process was run that reduced the price per viral load test to under US$8. The price of viral load testing can be defrayed by savings from monitoring CD4 cell count less often, while access to viral load testing is expanded, although countries should be cautious about scaling back CD4 cell testing before viral load monitoring has been effectively rolled out. WHO guidelines suggest that monitoring CD4 cell count can be safely reduced or eliminated for people who are clinically stable on ART and who live in areas where routine viral load monitoring is consistently available. Eight countries so far have adopted this recommendation and eliminated routine CD4 cell testing for people on antiretroviral treatment.

Some of the logistical challenges to scaling up viral load monitoring can be addressed by new technology. Although plasma samples are the “gold standard”, they require strict temperature control and rapid transport to laboratories. This makes it difficult to implement plasma-based testing in settings with limited laboratory capacity and decentralized care systems, but dried blood spot (DBS) samples can be used to avoid these challenges. DBS is the best sample option for scale up in resource-limited settings, because samples are stable at ambient temperatures for long periods of time, are lightweight, and are easy to transport. Currently available DBS tests have lower specificity and sensitivity than plasma-based tests, and most testing platforms have not yet received regulatory approval for use with DBS, but improved products are expected in the near future.

Viral load testing is primarily performed by trained technicians in laboratories. Point-of-care and near point-of-care tests are becoming increasingly available. These eliminate the need to transport samples, and people can get their test results faster than with laboratory-based tests. But point-of-care tests can be more expensive, have lower throughput capacities, and require more training for health care workers in decentralized care settings.

No matter what type of test is used, a well-developed system for tracking and notifying people of their results in a timely manner is a crucial component of all testing initiatives.

The WHO recommends several strategies for scaling up routine viral load monitoring.

Countries with limited existing capacity can begin by using viral load tests to confirm suspected cases of treatment failure identified by clinical or immunological criteria. Viral load monitoring can then gradually be scaled up to routine use for all people on ART. Routine testing can also be phased in gradually, by targeting specific populations or geographic areas. For example, viral load testing can be implemented first in health facilities that have greater laboratory capacities, or can be selectively offered to high-risk groups such as children and pregnant women.

Routine viral load monitoring cannot become a reality without a significant investment in awareness and education. By itself, access to routine viral load monitoring does not guarantee effectiveness and utilisation, unless it is provided with best practices such as enhanced adherence counselling (EAC) for people with high viral loads. People living with HIV must have information about the meaning and importance of viral load monitoring and viral suppression, how frequently testing is required, and how viral load monitoring differs from CD4 testing, in order to create demand for viral load monitoring.

Education and training should also be provided to healthcare workers, to improve their knowledge of and motivation for providing routine viral load testing. Efforts to scale up viral load monitoring should include civil society organizations that raise awareness and influence donors and governments. To this end, the International Treatment Preparedness Coalition has developed an ‘Activist Toolkit’ to empower advocates to campaign for greater access to viral load monitoring.

A recent MSF report ( Making viral load routine) on implementation of the viral load treatment “cascade” across MSF-supported sites in four African countries confirms that further scale up is required. Coverage of routine viral load monitoring at these sites ranged from 32-91%, while rates of provision of EAC (57-70%) and the likelihood of tests being repeated after EAC intervention (23-68%) also varied. Rates of switching to second-line ART regimens after persistent high viral load results were low at all sites (10-38%), however higher rates were achieved at sites using point-of-care tests.

Ultimately, the effectiveness of any scale up strategy will be context-dependent and programs should be designed to reflect local capacities and challenges, including financial resources, health system infrastructure, disease burden, and populations. Collaboration between all involved stakeholders – including governments, donors, clinicians, people living with HIV and civil society – is required to overcome barriers and expand access to viral load testing for all people receiving HIV treatment.

The report ‘Making viral load routine’ can be found here

Sharonann Lynch is with the Médecins Sans Frontières Access Campaign.

South Africa on the front foot and moving forwards

By Professor Linda-Gail Bekker & Professor Robin Wood

The June 2000 UNAIDS global report on AIDS painted a sombre picture: already South Africa had the greatest number of people living with HIV than any other country in the world and life expectancy had fallen rapidly to historical levels.

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

 "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"
“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”

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.

How HIV shaped us

By Professor Glenda Gray & Professor James A. McIntyre

HIV changed the nature of health in South Africa as our new democracy emerged. Seemingly overnight, in front of our eyes, young people and children died in unprecedented numbers. HIV slashed life expectancy, wiped out a generation of economically active adults in their prime across sub-Saharan Africa, reversed gains in under-five mortality and created a cohort of AIDS orphans. It also revealed the inter-relatedness between social behaviour, stigmatisation, cultural mores, religious beliefs and human health. HIV changed our society at a time when South Africa needed no distraction as it battled to rebuild a nation post-apartheid.

From 1998 to 2003, civil society together with AIDS activists, doctors and scientists used scientific evidence, in the face of government AIDS denialism, to force the use of antiretrovirals for the prevention of mother to child transmission of HIV-1, and subsequently the roll out of antiretrovirals as life-saving treatment. Our work at the Perinatal HIV Research Unit (PHRU) in Soweto was at the centre of these controversies. We had established the PHRU when we commenced research into the prevention of mother to child transmission of HIV-1 (PMTCT). Initially, we evaluated interventions to minimise breast milk transmission of HIV-1, before embarking upon the PETRA study, one of the first antiretroviral perinatal transmission studies to be conducted after the famous USA ACTG 076 study, which demonstrated that AZT could reduce perinatal transmission significantly. Because of our involvement in the management and follow-up of HIV-1 infected pregnant women and their infants, we became one of the first public sector sites to conduct antiretroviral treatment trials in adults and children. This gave us the necessary comfort to propagate the use of antiretrovirals in Soweto. Soweto, thus became one of the first demonstration projects for both PMTCT and ARV treatment roll-out, funded by the French government’s Fonds de Solidarité Thérapeutique International (FSTI) in a direct grant to the PHRU.

This Demonstration of Antiretroviral Treatment (DART) was approved under strict conditions by the then Minister of Health, Dr Manto Tshabalala-Msimang. However, as the governmental denialism intensified, our efforts to secure additional funding from the Pangaea Global AIDS Foundation and Clinton Foundation were closed down. We received a phone call from the then AIDS Director at the National Department of Health (NDOH), instructing us to stop developing the proposal, and communication with the donors then stopped without explanation. A decade later, Pangaea acknowledged the South African government pressure to stop working with us.

Political interference at this time was rife and the use of antiretrovirals for PMTCT was seen as a subversive activity. The Castro Hlongwane, Caravans, Cats, Geese, Foot & Mouth and Statistics: HIV/AIDS and the Struggle for the Humanisation of the African document – partly penned by Thabo Mbeki and distributed to ANC branches throughout South Africa – attacked South Africa’s earliest and most prominent AIDS scientists, including Salim Abdool Karim and ourselves. Abdool Karim’s research was characterised as “anti-human” promoted by “corporate forces” and we were singled out, because of our work using antiretrovirals for preventing mother-to-child transmission of HIV, as “killers of Black Women”.

"Political interference at this time was rife and the use of antiretrovirals for PMTCT was seen as a subversive activity"
“Political interference at this time was rife and the use of antiretrovirals for PMTCT was seen as a subversive activity”

In 1999, results from a study in Uganda, showed that a single dose of nevirapine given to HIV-1 infected pregnant women in labour and a dose administered to their infants within 72 hours could reduce PMTCT. These results galvanised us to try and secure this nevirapine-based intervention for HIV-1 infected women in our clinic, and we relied on donations to keep a steady supply before nevirapine was officially available for PMTCT. We supplied nevirapine under tense conditions at the Chris Hani Baragwanath Hospital. One day, a doctor from a peripheral hospital phoned, asking us to supply nevirapine to a HIV-infected woman in labour. He sent an ambulance to the PHRU. We gave the driver the nevirapine tablet and syrup, only to be phoned by the hospital superintendent admonishing us, as he barred this pregnant woman from access to a drug proven to be efficacious, effectively allowing HIV exposure during birth without prophylaxis.

In 2003/2004, government policy changed under pressure mounting from civil society as well as political pressure within the political-government structures. In an era where the cost of drugs was declining, we were fortunate beneficiaries of USAID and Elizabeth Glaser Pediatric AIDS Foundation funding that enabled scaling up treatment in Soweto. In a space of six months, our team, lead by Dr Lerato Mohapi, put just under 1 000 people in treatment; and our PMTCT programme directed by Dr Avy Violari, expanded in Soweto, accelerating access by opening PMTCT programmes in every antenatal clinic.

Even though we were involved with rolling out care, and scaling up interventions for maximum impact, we knew we also had to focus on the clinical science, and designed a number of programmes, which were funded under the CIPRA-SA banner. Studies executed under this programme impacted on international guidelines that revolutionised treatment management for infants, as well as defining that antiretroviral treatment could be executed by nurses instead of doctors. The Children with HIV Early Antiretroviral (CHER) study, undertaken at the Chris Hani Baragwanath and Tygerberg Hospitals showed that early treatment in HIV-infected infants could significantly reduce deaths3. The CIPRA-SA study demonstrating that ARV care could be task-shifted to nurses allowed for the mass roll out of treatment in South Africa and beyond3. We continued with PMTCT research which continued to help elucidate and refine regimens to make them more potent, the requirement to eliminate paediatric HIV.

Knowing that the only effective way to control the HIV epidemic was through prevention, the PHRU expanded its focus beyond PMTCT and ARV treatment for adults and children.

At this time the South African AIDS Vaccine Initiative, was established, and Glenda Gray transitioned from treatment into prevention. Tasked with taking the South African developed HIV vaccine candidates into first-in-man studies10, both in South Africa and the US, Gray would embark on leading these studies as well as lead the first HIV vaccine efficacy study in South Africa. For the past decade, finding an effective vaccine has been the fixation of most of Gray’s clinical research.

James McIntyre, driven by the need to continue to fine-tune innovation to take interventions to scale, turned to implementation science which saw the wide-spread roll out of treatment and PMTCT programmes. Concerned by the huge burden of HIV amongst men who have sex with men (MSM) and the lack of appropriate treatment for MSM in the public sector, McIntyre pioneered the development of MSM services in South Africa, that have become a model for both prevention and treatment.

Now, just over a decade and a half after the International AIDS Conference in 2000, South Africa’s burden of disease estimates indicate a nine-year increase in the average life expectancy from an all-time low in 2005, where total life expectancy was under 55 years. Our under-five mortality has been slashed by half from 80/1 000 to 40/1 000. Similarly spectacular gains have been made in infant mortality rates: from 54/1 000 to just under 30/1 000. Maternal deaths have also declined from 190 to 155/100 000. Most of this is attributed to the scale up of antiretovirals in the public sector.

These spectacular gains made by South Africa are a tribute to the activists, health care workers and scientists, who, faced with a horrific epidemic, did the right thing, and “en masse” spoke truth to power, and were relentless in their pursuit of scientific evidence and ruthless in their implementation of that. To have been part of this crusade, and look back, and see how much progress has been made is gratifying. Now we have to ensure that the lessons garnered in our experience with the HIV epidemic, are recapitulated in the quadruple burden of disease and the interconnecting epidemics of: communicable and non-communicable diseases; maternal and child mortality; and injury and violence.  

 

Professor Glenda Gray is the President of the South African Medical Research Council, Research Professor of Paediatrics at the University of the Witwatersrand.

Professor James A. McIntyre is the Executive Director of the Anova Health Institute, International vice-chair of the International Maternal Paediatric and Adolescent AIDS Clinical Trials Network.

HIV and non-communicable diseases: a dangerous partnership

Dr Tolu Oni

WHAT: Evolution of the HIV epidemic

Over the years, HIV and the ensuing global epidemic has resulted in millions of deaths. With the advent of antiretroviral therapy, and the advocacy efforts of civil society, HIV-related mortality has significantly decreased, as has mother-to-child transmission.

Consequently, a worldwide epidemic, characterised by fear, illness and death, has been transformed – with HIV-infected patients now able to live longer in good health in settings where antiretroviral therapy (ART) is equitably accessible and initiated early.

The global burden of HIV continues to vary considerably, with a disproportionally high prevalence in sub-Saharan African countries and other low- and middle-income countries (LMIC).

In these settings, HIV-related deaths remain unacceptably high, with delays in diagnosis and access to treatment. However, in many LMIC, sustained and expanding provision of ART, at increasingly higher CD4 cut-off values, has resulted in increasing life expectancy and decreasing incidence of new infections.

There is therefore a need to move from a system designed as an emergency response to one of chronic disease management, with an accompanying shift from a predominant mortality focus to focusing on morbidity (living with HIV and other diseases) and the improvement of quality of life.

WHY: Changing patterns of disease in countries with significant HIV burden

This ongoing evolution of the HIV epidemic towards being considered a chronic disease is occurring against a background of population transition. Many low and middle-income countries are experiencing rapid, unplanned urbanisation, resulting in a significant proportion of urban dwellers living in informal settlements.

This changing environment is associated with changing behaviour with decreased physical activity, increased consumption of processed high salt/high sugar foods, increased rates of tobacco smoking and alcohol/substance abuse. This is resulting in an accompanying rise in non-communicable diseases (NCD) such as diabetes and heart disease, and NCD risk factors like obesity and high blood pressure.

Of note, this rise in NCDs is considerably higher in low and middle-income countries. A recent study showed that in South Africa, almost four out of every five people over the age of 50 years has high blood pressure. Another research study conducted in South Africa found that three to four out of every five women are overweight or obese. One research study in South Africa found that among HIV-infected patients attending a clinic for ART, one in five were also on treatment for another chronic disease, predominantly treatment for diabetes and/or high blood pressure.

Given that less than 50% of people with high blood pressure are aware of their diagnosis, this figure is likely to be a gross underestimate, and is on the rise as a greater number of HIV-infected individuals age. The increase in NCD and NCD risk factors is even more pronounced in socio-economically disadvantaged populations, the same populations with a high prevalence of HIV. This trend is set to continue across LMIC as countries continue to urbanise and undergo epidemiological transition.

But in addition to simply co-existing in the same populations, these diseases are also known to interact with some ART drugs known to increase the risk of insulin resistance associated with diabetes. In addition, some ART drugs are known to interact with drugs for the treatment of diabetes and high cholesterol. These data highlight the existing overlap between HIV/NCD co-morbidity, and the different pattern of multi-morbidity to that described in high-income countries emerging. This multi-morbidity – the presence of two or more chronic diseases (including HIV) – has been shown in South Africa, and results in greater difficulty of patients to self-manage.

Where there is a mismatch between the workload (including clinic visits, behaviour change, taking long term medication and so on) and the capacity to meet these demands, this may result in poor adherence and could undo the health outcomes and quality of life advances achieved through ART roll-out. Therefore a holistic, coordinated and coherent approach to integrated management is needed.

The roll-out of ART across high-burden settings was accompanied by a mobilisation of global funds to finance these efforts. In these countries, parallel health systems were set up to facilitate the diagnosis, initiation of treatment and monitoring of disease control. These programs have been largely effective at reaching a wide population and rolling out ART access. Many lessons have been learnt in the establishment of HIV programmes, including the importance of prevention, screening and early detection, early treatment and treatment monitoring. With a strong focus on viral-load suppression once ART is initiated, these programmes were designed with a strong focus on monitoring disease control, with systems in place to address sub-optimal disease control – and they have resulted in significant gains in HIV mortality.

The recognition of tuberculosis as an important co-morbidity led to integration service delivery, including screening and co-management, as well as integration of healthcare workers providing care for HIV and TB, resulting in improved HIV and TB outcomes in co-infected patients. These lessons are highly relevant for the control of NCDs and there is a need for a systems approach to integrating chronic infectious and non-communicable disease prevention, screening, diagnosis and management.

Successes notwithstanding, there are common challenges faced by both HIV and NCD programmes that could benefit from a combined effort.

Advocacy by civil society movements was key to achieving affordable equitable access to ART. There is a need for all role players including patient and civil society groups, non-governmental organisations, clinicians and researchers to combine forces and bolster advocacy efforts to address common HIV and NCD challenges including:

improving access to, and uptake of, services by hard to reach and vulnerable populations such as adolescents, migrants, and incarcerated persons.

the need to adopt a Health-in-All-Policies approach to address socio-environmental determinants of these diseases with a stronger focus on prevention

the need to address shared risk factors such as alcohol/substance use through intersectoral collaboration

access to newer medication and advocacy for development of better combinations of drugs

access to palliative care for these conditions

WHEN? Right now

A Global Health Film Festival held at the University of Cape Town in April 2016 screened “Fire in the Blood”, a documentary about access to ART.

The documentary could have been entitled: “When the world realised they should care about HIV”, as it showed effectively how slow the world was to mobilise to respond to the need for access for all and the consequences of the slow response. The last frame of the documentary had the statement: “Help prevent a sequel”.

We welcome the news of a change in treatment policy towards treating all who test positive as this will ensure HIV is a manageable chronic condition (in addition to contributing to prevention efforts). But without a concerted effort right now to address NCD in the general population, the sequel is already playing albeit in slow motion.

From a patient and health system perspective, this conversation must include HIV-infected persons and the HIV programmes in the health system. With the recent announcement of the test and treat policy, we can celebrate the remarkable journey to achieving ART access to all HIV-infected persons. But alongside these achievements must be a shift to improving morbidity, as well as mortality.

Addressing the NCD epidemic in this, and the general population is key to achieving this goal to prevent a reversal of the gains in mortality and morbidity achieved.  

 

DR Tolu Oni is a Senior Lecturer, School of Public Health and Family Medicine, University of Cape Town.