The disability networking space

Andy Morobi is Judge Cameron's godson. Andy was orphaned by HIV and has been living with it since he was 14

"ARV availability reflects our prejudices and fears"

Judge Cameron invited the sex workers and transgender people in the audience to join him on the stage

"The fact that I am here today at all is a tribute to the activists, researchers, doctors and scientists in the audience," said Judge Edwin Cameron. Judge Cameron, who lives with HIV, was delivering the Jonathan Mann memorial address.

"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," he said.

"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."

But, he said, the struggle is far from over.

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

"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."

Community Health Workers stage a protest

The goal: no child born with HIV in South Africa

WITH 3.4 million people on antiretroviral therapy (ART), South Africa has the largest HIV treatment programme in the world. By 2015, an estimated 95% of HIV-positive pregnant women and 75% of HIV-infected children were accessing ART. 

Announcing clear targets over the next five years, South Africa’s Minister of Health Dr Aaron Motsoaledi, noted that “we can win this battle.” Minister Motsoaledi was addressing a satellite session on the elimination of mother-to-child transmission of HIV-AIDS (EMTCT), co-hosted by UNICEF and the National Department of Health at the International AIDS Conference taking place in Durban. The session shared achievements of South Africa since 2000 in the journey towards EMTCT and, through experts in the field, showcased the leadership, research engagement and innovative policies and programs that have supported this effort.   Delegates were informed that partnerships on the ground, engaging women and children, adolescents and young people, families and communities, local leaders and role models, media and the private sector all contributed to this accelerated national HIV response along with financial investments, political leadership and commitment at the highest level.

UNICEF’s Executive Director, Mr. Anthony Lake commended the successes of the South African programme and noted that “if we fail now to win the battle then there is one reason for this, and that is that we stopped trying. The job is not yet done but it can be.”

The session concluded with a clarion call for joint action on the “last mile for EMTCT network,” a virtual platform aims to bring together, under the leadership of the South African government, UN, development and implementing partners, academia, civil society, media and the private sector, a collective effort towards the goal of ‘No child born with HIV’ in South Africa.

Those of us living with HIV are also "normal"

Jacque Wambui is from Nairobi

JACQUE WAMBUI writes: I was tested for HIV in 2004 after being ill for roughly six months. At first, I took over-the-counter pills and was finally referred to a private doctor by a friend who is a pharmacist. I visited this doctor several times without getting better until the nurses offered me an HIV test.  I  declined. I told them that there was no way I could have contracted HIV.

When the results came, the doctor awoke me from the nap that I had taken while awaiting the results. He told me that I had taken a wise decision to agree to the HIV test. I asked him what the next test would be --- dismissing HIV. He took the envelope from the lab technician and after he had read the contents, he looked at me. I was HIV positive. It broke me. Even though I had been ill, I didn't think I had HIV. 

The doctor referred me to an HIV clinic where I would check my cd4 count and it turned out to be 294. I declined to start antiretroviral treatment, telling myself that I would do everything I could to boost my immunity and did not need the drugs. I had heard  that ARVs have severe side effects and I didn't want to have to deal with that. Also, I've always has adherence issues with treatment of other illnesses. I remember once declining to take a family planning pill as I would hardly remember to pop it daily.

Come 2006 I fell seriously ill again and went from facility to facility seeking treatment as I was losing weight drastically and was extremely weak. I was finally diagnosed with extra pulmonary tuberculosis. I was immediately put on treatment for TB. Two months into my TB treatment I started ART and have been on different regiments ever since. 

Thankfully, I have not fallen ill again since I started treatment. I've been able to adhere to my drugs, and many people say I look “normal” which to them means "she doesn't look sick".  And how does that make me and other people living with HIV feel? One may wonder! It makes us feel more acceptable in society, but at the same time, it makes me question what "normal" is. Everyone should know that people living with HIV are normal anyway as HIV is a condition like any other. 

Marching for universal treatment

Deputy President, Cyril Ramaphosa, tries out his new HIV positive t-shirt

NATHAN GEFFEN writes: Several thousand people marched through the centre of Durban today to the opening of the International Aids Conference at the International Convention Centre.

The march, organised by the Treatment Action Campaign, SECTION27 and the US-based Health Gap, highlighted the need to get antiretroviral treatment to people with HIV across the world. The march memo – which was accepted by Deputy-President Cyril Ramaphosa, UNAIDS Executive Director Michel Sidibé, and Minister of Health Aaron Motsoaledi –  recognised the achievements against the HIV epidemic that have been made since this Aids conference was last held in Durban in 2000.

But it stated: “The spotlight must now be squarely on the 20-million people, mostly poor, marginalised and criminalised, stuck away in all corners of the world, who are dying in undignified surroundings, often far away from any semblance of a functioning health system and even further away from the antiretroviral treatment that saves lives.”

Ramaphosa wooed the crowd when he put on an HIV-positive T-shirt. Motsoaledi and Sidibe followed his example. In contrast to the tension at the conference 16 years ago, when a rift was emerging between activists and then health minister, Manto Tshabalala-Msimang over former President Mbeki’s Aids denialist views, the handing over of the memorandum today was characterised by much friendlier relations between TAC leaders, Ramaphosa, and Motsoaledi.

Speakers, including the deputy-president and health minister, emphasised their desire to work with activists. Motsoaledi said that his department was already implementing the specific demands the memo made upon it.

There was however a moment of tension when TAC General Secretary Anele Yawa criticised UN Secretary General Ban Ki Moon for failing to receive the memo. TAC activists informed GroundUp that he had committed to receiving the memo at a breakfast meeting earlier that day. The march had earlier in the day stopped at City Hall where Ban was expected to greet the protesters. But he did not arrive. Nor did he arrive at the convention centre where Ramaphosa and others accepted the memo. Yawa accused the Secretary General of disrespect. Ramaphosa, however, came to Ban’s defence, citing his track record on pushing for improvement to global  health.

Another point of contention ahead of the march has been that UNAIDS, the organisation with international responsibility for dealing with the HIV epidemic, has been pushing for the end of Aids by 2030. A stepping stone along the way is that in 2020, the organisation wants there to be fewer than 500,000 new infections and fewer than 500,000 Aids deaths globally.

It’s a noble sentiment. But Aids activists are unimpressed, arguing that the rhetoric of the End of Aids is pointless without a plan to do so. UNAIDS has set what it calls the 90-90-90 targets: 90% of people with HIV know status, 90% get treatment, and in 90% of those on treatment, the virus is undetectable (with the consequence that they are healthier and cannot transmit the disease sexually).

The critical step to achieving this is to scale up HIV testing. But, as Professor Francois Venter, former head of the Southern African HIV Clinicians Society, recently wrote about the situation in South Africa: “Testing remains stuck in overloaded state facilities or in bureaucratic systems in the private sector.”

The problem is certainly not confined to South Africa: US activists have also expressed concern about the inability of their health system to scale up HIV testing.

However, in a press conference this morning, Sidibé recognised that we are nowhere close to ending Aids, a concession that appears to have satisfied activists demanding that rhetoric be replaced with plans and implementation.

This article first appeared in GroundUp