Open letter to SA National AIDS Council (SANAC) Chairperson, Deputy President Cyril Ramaphosa and Health Minister, Dr Aaron Motsoaledi

9 June 2015

Dear Deputy President and Minister of Health
2015 is the fourth year of the current National Strategic Plan on HIV, TB and STIs (2012-2016). We commend your leadership in sustaining South Africa’s response to HIV as a national political priority. We have worked together, as government and civil society and we have saved millions of lives through ensuring access to antiretrovirals (ARVs). As a result life expectancy has risen, mother-to-child HIV transmission has dropped dramatically and efforts are being made to reduce maternal mortality.
According to the table below, which is based on figures provided by the Department of Health, by April 2015 there were 3,1 million people on antiretroviral therapy (ART)! Three millions lives saved! This is an enormous achievement – a far cry from a decade ago when the ARV programme was started after a bitter fight against AIDS denialism.
However, as much as the data below points to our achievements it also points to our growing challenges. It is in this context that TAC, SECTION27 and many other organisations wish to draw to your attention our deepening concerns about the quality of our national response to HIV and TB. We are concerned that we may be in Code Red. In particular, we fear that the great gains we have made may now be under threat as a result of deepening problems in the rest of the public health system – problems that we do not think are being acknowledged. Ironically, it is the high quality of the health infrastructure that has been built around the HIV programme that now casts a sharp light on the crisis in other parts of the health system.

We therefore call for greater political leadership and attention on the following issues in particular:

1. Crises in provincial health systems

If you look at the table carefully it reveals that there are significant disparities between provinces:

• Between 2014 and 2015 the number of people on ARVs in Gauteng grew by 150,000.
• Yet in North West it grew by less than 6,000 people;
• In the Free State by less than 17,000;
• Mpumalanga, parts of which have the highest HIV prevalence in the country, added only 40,000 people to the ARV programme.

These differences must be closely scrutinized and properly investigated.
However, we strongly suspect that in part they may be related to the systemic corruption and mismanagement that is causing a collapse of health systems in several provinces, including the Free State, Mpumalanga and now the North West. (We recognise that as a result of political leadership we are seeing some signs of improvement in the Eastern Cape).
We have repeatedly tried to alert you to these issues. We have marched, written numerous letters, provided evidence. In August 2014 we even met with African National Congress Secretary General Gwede Mantashe and five other senior ANC NEC members. But our warnings have been ignored. This issue of the NSP Review, particularly its reports on the Free State and Limpopo reveal what this means practically. People are dying unnecessarily. They are dying undignified deaths, far from the public eye.
In the words of one health professor we consulted:
“Underpinning the health system’s problems is a crisis of leadership, governance and corruption in provincial health departments that the ANC is unwilling to tackle head on.”

2.The crisis in the National Health Laboratory Service (NHLS)

The NHLS is like the arteries of the NSP. We need it for HIV tests, viral load diagnosis, Gene expert tests – never mind the thousand other critical functions it has in the health system. But it is a crisis.
In November 2014 the NSP Review highlighted what is happening at the NHLS. But nothing has got better.
Now, we are contacted on a daily basis by staff at the NHLS but who are afraid to speak out publicly because of threats of victimisation. If the NHLS collapses or is forced to stop providing essential laboratory services it will be a disaster for the HIV and TB programmes.
Minister Motsoaledi denies publicly that there is a problem. We say there is. The NHLS needs resuscitation and a rescue plan.
Deputy President, we address this comment to you: if you want to decide who is telling the truth we ask simply that the Minister answer the 13 questions posed to him in the Open Letter we carry on page 28.

3.Monitoring the NSP and Quality of Data

The NSP Review contacted senior officials in government departments who are afraid to go on record. They tell us that the data in the table above represents a great improvement. But they admit that the figures still cannot be corroborated with other indicators; that they are contradictory. In the words of one official:
“they show lots of people leaving/dropping out, but we are unclear whether we losing them or they dying.”
Previously the NSP Review has argued about the need to introduce a unique identifier for every person on ARVs. This remains urgent. Without it we cannot track the ARV programme effectively.
As data improves it should permit a more sober reflection on retention in care clinic by clinic, district by district, province by province. Thus, whilst we welcome improvements on the availability of information, we do not see enough evidence of the South African National AIDS Council (SANAC) or the Department of Health using this data to respond to potential problems (which includes the need to further strengthen the data system). This also applies to major donors supporting the ARV programme particularly the United States PEPFAR programme.

4.ARV Adherence – good or bad?

In July 2014 Minister Motsoaledi told Parliament that:
“about 50% [of people on ARVs] receive viral load tests; of these 75% are virally suppressed; at 36 months we currently have 37% loss for follow-up.”
Various experts contacted by NSP Review questioned the reliability of these figures, pointing out that if they were accurate “we would have a return to the bad old days very quickly in terms of death and sickness – and this is not true if you look at the death data.”
If the Minister is correct about detectable viral load it would mean that 25% of people on ARVs are not taking them properly and remain infectious and at risk of disease.
The high loss to follow up (which experts advise us is also not properly understood) suggests that hundreds of thousands of people are disappearing from the ARV programme. Is this accurate? TAC’s community mobilisers tell us from direct experience working inside clinics that there are growing problems with adherence. They say these problems are related to a range of factors including: the lack of psycho-social support for people with HIV (and all others); stock outs; the removal of treatment supporters such as Community Health Workers in some provinces; and the deterioration in the quality of HIV counselling.
What is our plan to improve adherence?

5.Stock-outs of ARVs and other essential medicines

In May the Minister of Health publicly attacked the TAC and others. He claims that we are exaggerating the scale of the stock outs. For example, in a radio interview on May 25th he insisted stock outs are not a problem and accused the Stop Stock Outs Project (SSP) and the TAC of being subversive and coercing people to speak out. In another statement on 28 May the Minister accused the TAC of “misleading the media and hence the general public.” By linking TAC to criticism by the Democratic Alliance he seems to want to imply we have a political agenda.
We will not be intimidated. We stand by our evidence.
We have provided the Minister with the 2014 SSP report, the findings of which we summarise on pages 4 to 9. It shows that out of the 2,499 health facilities surveyed:

• 17% reported a stock out of at least one HIV/TB medicine at the time of the call;
• 25% reported a stock out of at least one HIV/TB medicine in the previous three months;
• In Mpumalanga 40% of facilities reported a stock out of at least one HIV/TB medicine in the past 3 months, followed by North West at 39%.

We appreciate the efforts of officials in the NDoH to try to address these problems. But they are undermined by corruption and mismanagement within the system. This is a disaster and it must be fixed as a priority.

6.Intimidation and Denialism

Ten years ago the TAC and others in civil society were treated as enemies of the government for speaking out on AIDS. This was acknowledge by the Deputy President in a letter to SECTION27 in which he recognised “the value of an active civil society” and that “we would not have made the progress we have without the commitment, perseverance and activism of many organisations and thousands of individuals.”
Let us be clear: We have no agenda other than implementing the NSP successfully. We speak out, we expose things to the media, we use the courts, because we are citizens with rights. We care for life, health, dignity and we are committed to ending the HIV and TB epidemics.
When we say to you that aspects of the NSP have reached ‘condition critical’ or code red, that red lights are flashing that need your leadership and that of the whole government, we do not do so to draw attention to ourselves, or embarrass the government. We raise them to draw attention to AIDS and TB and those living with it.
Denying that these issues exist or that they are serious is pointless. Do not go back down the road of denialism.
It saddens us that our organisations are once again being derided as enemies with hidden political agendas. A high level of fear among health workers about speaking out has also returned.
In the Free State TAC leaders experience death threats.
From July 6 to 9, 117 Community Health Workers will be put on trial in Bloemfontein for exercising their rights to peacefully demonstrate in defence of their jobs. Your government will spend millions of Rands trying to criminalise these women workers.
Why?
We call on you to end the intimidation.
Regrettably there is much less open communication between civil society, health professionals and the health department. We ask you to restore the spirit of openness and transparency around HIV, TB and the state of health.

To 2016 and beyond!

Deputy President Ramaphosa, Minister Motsoaledi, we are mid-stream in our national response to HIV. We have much to be proud of.
Fifteen years ago, in 2000, the 13th International AIDS Conference took place in Durban. This conference was a low-point because then President Mbeki shamed us before the world community with his AIDS denialist lecture. He was deaf to the pleas of young Nkosi Johnson. But it was also a high point because as a result of activism at that conference the world’s attention shifted to treating AIDS in developing countries.
In July 2016 the 21st International AIDS Conference takes place in Durban again. There are two roads by which we can reach this conference. One is by continuing with denial about some of the great threats we have raised in this letter. The other is placing our very real challenges on the table and giving ourselves twelve months to fix them.
We pray you will do the right thing.

Yours sincerely
Mark Heywood, Director, SECTION27
Anele Yawa, General Secretary, TAC