Beyond the lecture halls, activists make their demands clear

What I have been hearing....

Young people making themselves heard - and seen - during South African Health Minister, Dr Aaron Motsaoledi's, address 

ANGELO KAGGWA-KATUMBA writes: There has been a lot of buzz about this 21^st International AIDS Conference, AIDS 2016, which the beautiful city of Durban has been hosting. Many people, whether at the conference or following the proceedings from afar, have been excited, especially as talk about the “End of AIDS” continues to pick up pace. I spent some time listening to conference delegates about the conversations they are hearing; and also those they would like to hear but which haven’t received the deserved attention. Below are their thoughts:

At the 21^st International AIDS Conference in Durban, what have you heard the most in conversations? 

“Fighting new infections,” said Peter Piot, 67, former Executive Director of UNAIDS. 

“This is the first conference in a long time at which prevention has been central to conversations in the different meeting rooms. Treatment is important, but we have to give prevention as much attention,” Mr Piot added.

“Decentralization of treatment to the community structures,” said Luthando Qobo, 39, of the Department of Health in Kwa Zulu Natal, South Africa. 

“New infections are happening in communities. The people who urgently need treatment live in communities. So, being here at the conference and hearing several speakers talk about taking treatment to the communities is refreshing for me,” Mr Qobo added.

“I’ve heard a lot about male condoms, but nothing at all about the female condoms. I don’t even remember when I last saw a female condom. Where are the options for young women?” asked Nomtika Mjwana, a 20-something year old woman, South Africa.

“HIV prevention approaches - for example, pre-exposure prophylaxis or PrEP have dominated the conversations at AIDS 2016. That’s great, because prevention needs attention. Young women especially between 15 to 24 years are getting infected with HIV at alarming rates. So hearing that we now have options that are discreet is a breath of fresh air for me,” said Jonas Langa, 40, of Right to Care here in South Africa.

“I’m excited to hear lots of conversations about PrEP, including injectable PrEP that in future may be available for people to get a single injection that could offer prevention of HIV for several months,” observed Dr. Edith Nakku-Joloba, 47, a clinical epidemiologist at Makerere University and the Infections Diseases Institute in Uganda.

“This conference has also been about human rights and activism. Activists have been everywhere, leading conversations and directing the agenda. We need to reinvigorate activism if we’re to end AIDS,” Dr. Nakku-Joloba added.

And what would you like to hear more of as the conference progresses?

“I would like to hear more about the reality of achieving the goals we’re setting of fewer HIV infections. How practically are we going to see more prevention at the community level?” asked Mr. Piot.

“Viral load monitoring for people living with HIV hasn’t received enough attention at AIDS 2016. Even where it’s been talked about, it’s not clear exactly what it means to be “virally suppressed”. I hope that we’ll hear more about this as the conference progresses,” said Mr. Qobo.

“As excited as I am about PrEP, I’m not hearing enough about how the adolescent girls and young women whom I work with will access PrEP. They need it. They want it. Now, tell me how they’ll get it,” remarked Ms. Langa.

“Are sexually transmitted diseases/infections on the AIDS 2016 agenda?” asked Dr. Nakku-Joloba. “I’ve personally not heard much about STDs and STIs. HIV/AIDS and STDs and STIs go hand in hand. We would be lying to ourselves if we took our sight off of one as we focus on the other,” she added.

On my part, I’ve heard a lot of talk about focusing on young people, but I’ve not seen as many young people leading, talking and representing themselves as I would have loved to. Also, I’ve heard a lot about nice-sounding targets such as the new UNAIDS target of reducing new infections to 500,000 annually (currently at 2 million) by 2020; the new UNAIDS and WHO target of circumcising an additional 27 million boys in men in priority countries (where male circumcision is low but HIV prevalence and new infections are high) among others. I believe in ambitious targets and also know that they are critical if we’re to make the “End of AIDS” a reality, but, like Dr. Piot, I would like to hear more about real practical ways to deliver prevention. 

In addition to this, global funding for HIV/AIDS is reducing. I would like hear more funding commitments from current major funders such as the US President’s Emergency Plan for AIDS Relief (PEPFAR), the Global Fund, the Bill and Melinda Gates Foundation, European donors, and most importantly, governments of the countries that bear the biggest burden of HIV/AIDS.  

Voices from the Truth Booth in the Global Village: where activists, advocates and members of the public can share their comments, critiques and confessions

Hope vs hype in cure reporting: getting our soundbites right

 IDA JOOSTE writes: A journalist friend once said to me – in all earnestness: “What will you people who work in HIV do if a cure is found for HIV tomorrow? All the programs you’re working on will have to close down”.

There were so many things wrong with that statement, I didn’t know where to start.

A cure will not just be found. It will not be tomorrow. If and when it is “found”, a new (possibly decades-long) strand of work will have just begun.

Most of the delegates at Aids 2016 will have heard this. “Towards an HIV Cure” sessions have clearly outlined how complex the science is and how long it will take before we get there. Moreover, National Institute of Allergy and Infectious Diseases (NIAID) Director, Dr Anthony Fauci, has told POZ he believes that success on the cure front is a matter of “if” rather than “when.”

At a Cure symposium ahead of the Aids conference, Fauci was more upbeat, but also cautious. Fauci reminded us about the now famous Timothy Brown case, the so-called “Berlin patient” who had an underlying malignancy that required stem cell transplantation – which he got. For several years now, Brown has been free of the technical HI virus despite the withdrawal of ART. 

“So that is what we’re talking about: the possibility that this is the kind of thing that will be seen”, said Fauci.  “The way we have gotten to where we are right now and the way we will get to a cure, if and when we get to a cure, would be to very carefully do what we are doing, and that is: to follow the science.”, said Fauci.

See Fauci and colleagues highlight issues in cure research: the complexity of the science, the tricky terrain of ethics in cure research, the importance of engaging the community and considerations for the language to use when talking about this field:   https://vimeo.com/175154305

Yes, the science is exciting and multi-faceted. Dictionary definitions of cure include “to relieve (a person or animal) of the symptoms of a disease or condition” and “to make someone with an illness healthy again.” The Cambridge Dictionary says cure is “the process of making a person healthy again, especially by giving treatment, or a treatment that causes a disease to go away.”

Besides the Berlin patient, other patients in this quest for a cure have become famous: the “Mississippi baby”, the “Visconti cohort”, the “Boston patients” and more. But scientists are keen to remind us that only Timothy Brown has been completely rid of the virus.

This science about the difference between Brown’s case and the others is even more complex to explain. What Brown’s and other cases mean for the future of HIV and how much hope we should have is a story that journalist, science communicators and bloggers must tell. But how?

There’s guidance at a presentation at the IAS 2016 Research Literacy Zone titled “Hope vs. Hype in Reporting HIV Cure Research: Advice for Journalists, Bloggers and Concerned Consumers of the Media”.

The session, offered by AVAC, Treatment Action Group, defeatHIV, Internews and The University of North Carolina reviews examples of how HIV cure research has been portrayed in the media and promotes the correct and nuanced use of language to discuss HIV cure research, which would set realistic expectations about the science. The session also provides the 101 of Cure research: no need for on-going medication (ARV treatment), no symptoms, no viral progression and no risk of transmission. The language of cure is a reflection of how science has evolved. We talk of Sterilizing/Eradication – where HIV is completely removed from every cell in the body and the person is HIV-free. A Functional Cure or Remission means HIV has the potential to resurface.

The Hope Vs. Hype in Reporting HIV Cure Research session shares data from a media scan showing most Cure coverage comes from the US and Europe, often pegged to research findings, conference news, journal publications. There has been very little science-based or research driven coverage in Africa to date, but this could change as more research happens on the continent or as more promising and tangible research results are released.

One of the reasons for offering this session is to help journalists guard against serious misrepresentation, such as that made by the UK’s Daily Telegraph, which wrote in 2013 “The Cure for HIV Possible Within Three Years”
POZ corrected it in A Cure for HIV is Not Around the Corner and The Telegraph revised its online article.

 By contrast, New Vision in Uganda reported accurately on Cure information presented at CROI 2016 and placed the story on the front page.

 The Hope vs. Hype session talks about the media’s key role in helping to set realistic expectations.  

•       Articles about HIV cure research results should include perspectives and quotes from independent scientists not involved in the study or studies being reported

•       Be sceptical about any articles making claims about timelines – something will happen “within x years”

•       Always cite the original science paper

•       Avoid inflating research results

•       Avoid speaking about “HIV cure” by itself – always include the word “research” about HIV cure science.

Researchers and advocates, too, have a critical roles in ensuring accurate media coverage

They should explain findings in language that is understandable

·        Use nuanced language and don’t use jargon

·       Take time to explain complicated concepts

·       Be available for follow-up questions

·       Don’t hype results

·       Be realistic about timelines and the impact of findings

·       Cultivate relationships with journalists and provide ongoing information

·       Don’t expect accurate, nuanced, favorable coverage without  taking time to work with a journalist

The session also reveals findings from a survey among journalists about their perceptions on Cure research. These are some of the responses when the surveyed journalists were asked how they would headline a story announcing a cure for AIDS?

•       “HIV/AIDS Gets Cure At Long Last”

•       “Cure for AIDS at Last!”

•       “FROM GOD FOR HUMANITY”

•       “No more condoms, scientists discover cure for HIV”

•        

How would you headline it?

Gus Cairns, HIV journalist and activist says the problem is with the word cure itself. “I think remission is the word we should be using … because this is the word we already use in cancer. You’ll never hear a doctors saying you are cured of cancer. They say you are in remission, in 3 or 5 or 10 year remission. That means you’ve had your surgery or chemo and the cancer has not come back for x nu. Of years. That’s the language we are going to have to use, because that’s the accurate language.”

Nobel laureate Françoise Barré-Sinoussi, credited with identifying HIV as the cause of Aids, agrees. “Remission is what it really is for now. It is not very different from what cancer remission means. But at least, in principle, there has been proof of concept of the notion of a real cure, and that gives us hope.” Barré-Sinoussi speaks passionately about the research community’s commitment to advancing science collaboratively in order to get to a cure or functional cure.  

For Kenyan science journalist John Muchangi, “Cure” is one of the main stories he’s following at Aids 2016. “It’s new science, so it’s exciting for my readers. The trick about this story is to tell it well and to temper expectations at the same time.”

As Dr. Paula Munderi, Head of the HIV Care Research Program at the Medical Research Council in Uganda said: “Getting our sound bites right when talking about ‘HIV cure’ is going to be critical going forward.”

For simple accessible information on HIV cure research: http://www.avac.org/cureiculum

I am still not getting the treatment I need

Ntombozuko Kraai

NTOMBOZUKO KRAAI writes: I am an HIV positive South African woman. Eight years ago I attended the first international Aids conference in Mexico. This is my second international Aids conference, here in Durban in South Africa, is hosting. It's only Day 2 of the conference yet a lot has already been said. I have learned that a major milestone of 17 million people living with HIV globally accessing treatment  has been achieved. However, the remaining 20 million people living with HIV and who urgently need treatment are not accessing it. In my own country of South Africa, although we have the biggest treatment program covering 3.4 million on treatment, the other half aren' on treatment. This is terrible and is unacceptable.

 Young women in the community where I live and work in Gugulethu, Cape Town, aren't getting tested because nurses are rude to them and judge them.  As long as this happens, there's no way we'll reach the much-talked about UNAIDS 90 -90-90 targets. Those young women who test HIV positive are coming late for care, and they don’t access treatment. Why do we still, in 2016, have delays in starting treatment? Young women deserve better. South Africans living with HIV deserve better.  

As a woman who has been on antiretroviral treatment since 2003, I know that I, and others like me, deserve more than has been done by my government, funders and other stakeholders. Even though I've been taking my ARVs for a long time, I still struggle with pill burden. Many years ago, WHO recommended that patients with CD4 count of more than 350 should not take non nukes (nevarapine) because of its toxicity. Why am I, in 2016, still taking them? To me, saying that we "lack resources" to do  genotypic resistance assays is only one of countless excuses. 

 At AIDS 2016, I've also heard about the genotype resistance assay test. I'm hoping that we can form a new coalition of people working on vaccines and the cure working together. Let's keep the promise.. #TreatmentASprevention. Many patients in South Africa are already resistant to second line regimens. This can prevented if everyone who starts treatment would get genotype resistance essay tests. It's a big shame that we do not have many options, and are still limited to ARVs that are toxic. 

It's about time that all of us, irrespective of whether we live in Mpumalanga or Copenhagen or Atlanta, have the best treatment available.  Until then, the "End of AIDS" won't be a reality. 

Protest at the Global Village

Charlize Theron chats to Khalo Khwinana, an HIVSA community activator #GENENDIT

Charlize Theron engaged with young girls in the Choma Dreams Cafe at the Global Village today.  The concept of the cafes is to provide vulnerable young women between the ages of 15 and 25 with safe, connected and empowering spaces to access health information, social services, life skills training and support from peers and mentors.

"Young women are the most vulnerable to the spread of HIV in South Africa. Every week, 2363 young women aged 15 to 25 are infected with HIV," says Jean Armstrong, CEO of HIVSA. "Girls and young women in vulnerable communities have limited opportunities and access to safe spaces and programmes that build their resilience and reduce risk."