THE ROAD TO DURBAN AND BEYOND


 



Can we really end AIDS?
Think back 15 years ago, just after the turn of the millennium. Picture yourself walking down the street, turning to a stranger and asking him or her to name the biggest health problem in the world. The likely answer: AIDS.

If you tried that same experiment today, AIDS probably wouldn’t make their list. That’s a good thing. We’ve made dramatic progress in the fight against HIV. But AIDS still continues to claim many more lives than most people realize.

In 2014 alone, 1.2 million people died of AIDS. Worryingly, HIV-related deaths among adolescents have tripled since 2000 – an alarming increase, and, while new HIV infections are falling globally, they are on the rise in many countries – mostly in the developing world and among key populations, such as men who have sex with men, transgender people, sex workers and people who inject drugs.

Today, many people aren’t benefiting from increased access to comprehensive HIV prevention, care and treatment services: young women and girls are not adequately supported to make their own health decisions; many men who have sex with men are unable to be honest with health care providers for fear of being harassed, arrested or jailed; migrants are excluded from many national health systems; men and boys are not accessing HIV treatment as readily as they should because health services are not adequately promoted as avenues for managing men’s health; sex workers and their clients are discouraged from seeking healthcare by punitive laws; transgender people find both prejudicial and uninformed health care workers a barrier to accessing services; and people who use drugs frequently risk detention if they seek out care.

In this way, the “global HIV epidemic” is a misnomer. There is not just one epidemic. Some people in some places are witnessing historic success – they can access and afford a variety of lifesaving HIV prevention and treatment options and live knowing their rights and freedoms are protected. In many other places, where political commitment to HIV is weak, health systems are deficient and human rights are persistently violated, the picture is bleak.

There has been a great deal of discussion in policy circles about already having the tools we need to end AIDS. We’ve set a deadline, created targets and updated global treatment, care and prevention guidelines to help us reach our goal. At the global level, our discourse is infused with cautious optimism and determination.
BUT IN FAR TOO MANY PLACES IN OUR WORLD, THE END OF AIDS IS STILL AN ILLUSION
Not only are there fewer signs of progress, there is growing scepticism around whether the world will follow through on commitments to bring the epidemic to an end.

The reality is that our global pronouncements are often slow to be taken up in the real world. And in the fight against AIDS, delay is tantamount to defeat. If we are to truly end AIDS, we must ensure that sound science grounded in human rights approaches is more rapidly and thoroughly put to use to achieve concrete results for people – especially those who are marginalized and socially excluded. AIDS will not end until those at the very forefront of the epidemic – those whose voices are all too frequently insufficiently heard in the hallways of political power and influence – have access to the latest scientific and biomedical advancements that we know are so critical. And access to these will not be attained until human rights considerations, and their inextricable links to HIV, are squarely addressed. Unless this is done, AIDS will not be over. We must be sure our efforts succeed in all places and for all people. Only then can we declare victory.

Recognizing the profound challenges ahead has led us to re-examine the role, purpose and position of the International AIDS Society (IAS) in the global response to AIDS. Over the past year, we consulted with hundreds of our members and partners to better understand what they need from us. The result is a new direction for the IAS, embodied by our organizational strategy for 2016-2020. It rests on three pillars:

  • Science: Pushing for the full spectrum of scientific achievement – from basic science to implementation research – and using IAS’ convening power to highlight dynamic, innovative work.

  • People: Ensuring that those responsible for putting science into practice – researchers, physicians, nurses, laboratory workers, community workers and civil society – have the resources they need to do their jobs.

  • Progress: Driving rapid and sustained improvement in health outcomes by using IAS’ scientific authority to move science into policy and policy into tangible impact against the epidemic.

As a membership-driven organization, we have a responsibility to move beyond rhetoric and spotlight evidence-based, human rights-centred solutions to the epidemic everywhere in the world. It is our responsibility to represent our members – including frontline HIV workers – to the normative, regulatory and policymaking bodies that impact their work. To be a collective voice for change and a place where science and community meet. That voice is urgently needed during the next several months leading to the 21st International AIDS Conference (AIDS 2016).

IAS will use its convening power to push change on a national and regional level as the steward of AIDS 2016. Just as the 2000 International AIDS Conference in Durban served as a catalyst for global treatment advocacy and access, the return of the conference to Durban this year will be a defining moment to establish a clear path toward guaranteeing that no one is left behind in the AIDS response.

We must not settle for noble speeches about global targets and political commitment. Instead, when we meet again in Durban, we must speak directly, ask the hard and uncomfortable questions and demand tangible answers – of ourselves and of each other.

The document that follows outlines the issues IAS is prioritizing on the road to Durban. We hope you’ll join us, develop your own list of essential questions and topics and take full advantage of the historic moment before us.



Sincerely,



OWEN RYAN
IAS Executive Director


CHRIS BEYRER
President
    LINDA-GAIL BEKKER
President-Elect
    ANTON POZNIAK
Treasurer
    FRANÇOISE BARRÉ-SINOUSSI
Immediate Past President


 

Durban 2000 to 2016:
HOW FAR
WE’VE COME



CARE FOR US AND ACCEPT US – WE ARE ALL HUMAN BEINGS.

– Nkosi Johnson at the opening ceremony
of AIDS 2000 in Durban
When 11-year-old Nkosi Johnson took the stage at the opening ceremony of the 2000 International AIDS Conference in Durban, he was representative of many of those living with HIV in South Africa at the time. His mother was HIV-positive, with little money and no access to quality HIV prevention tools or treatment. Nkosi was born with the virus. In their small township east of Johannesburg, they lived in fear that the community would find out about their illness and chase them away. The environment could not have been less welcoming of people living with HIV. With Nkosi’s mother’s health rapidly deteriorating and no direct family willing to care for her son, she sent him to an AIDS centre in the city. He was cared for by one of the centre’s volunteer workers, Gail Johnson, who later became his foster mother. By the time he took centre stage at the conference in Durban, he was the longest-surviving child born with HIV. Speaking softly but with strong resolve, he reminded the world that he and other people with AIDS were no different than anyone else and all were equally deserving of care and treatment. His plea rings as true today as it did then.

In 2000, high-income countries were on the road to eliminating new HIV infections among children. But in developing countries, hundreds of thousands of children still began their lives with HIV. AIDS 2000 in South Africa vividly illustrated this tale of two worlds – developed versus developing – and not just for children. Millions of adults were denied access to lifesaving medicines for a variety of reasons, including questionable political commitment. As delegates met in Durban, the country’s senior-most political leaders were still blocking access to antiretroviral therapy, heeding myths rather than scientific evidence.

Delegates at AIDS 2000 launched perhaps the greatest movement in global health history. For the first time, our community vowed that there would no longer be one standard of care in rich countries and another one everywhere else. Whether someone benefited from the fruits of scientific research, it was agreed, would no longer depend on an accident of birth.

Sixteen years later, the HIV landscape has dramatically changed. Millions of people from all walks of life now have access to HIV treatment, and scores of countries are on track to eliminate mother-to-child transmission. South Africa, now home to the world’s largest antiretroviral treatment programme, has seen life expectancy rise by nearly a decade in only 10 years’ time.

In 2000, neither the limited array of proven HIV tools nor the state of the global response permitted even the most optimistic conference attendee to contemplate the end of the epidemic. Now, in 2016, we look back on a string of successful advances and approaches in HIV prevention, care and treatment. But these advances are still not reaching everyone most in need, and they are not enough on their own to end the epidemic. Much more remains to be done before we can realistically talk about the end of AIDS. Until those who are the most marginalized and stigmatized can meaningfully participate in scientific, community and policy gains, the end of AIDS will remain elusive.

INTERNATIONAL AIDS CONFERENCES
Landmark Moments in the HIV Response
 


 

 

 

 

At Pace and to Scale:
FROM EVIDENCE
TO PRACTICE
© 2015 Jyoti Potare/FHI 360, Courtesy of Photoshare



With each scientific breakthrough, the HIV community historically has done an exceptional job of influencing policymakers to change national and international guidance to reflect new evidence and incorporate emerging strategies.

Too often, though, these policy changes have not filtered down quickly enough to frontline health workers – physicians, nurses, laboratory technicians, community workers and outreach staff – who implement essential HIV prevention, care and treatment programmes, and whose efforts ultimately determine whether new tools are put to effective use and translated into lives saved. We must urgently close this gap in the HIV response.

We have developed a simple acronym to stress the important steps that move us from groundbreaking discovery to individual impact: GREAT.

Guidelines
Rapid development and at-scale implementation of normative international and national guidelines.

Regulation
Coordination across regulatory agencies that leads to swifter approval of new tools.

Evidence
New research – including basic, clinical and implementation science – that builds the evidence base and translates science for frontline workers and affected communities.

Agency
Meaningful client and frontline health worker agency and collaboration to ensure optimal retention in prevention care and treatment.

Toolkits
Ready access to toolkits, tactics and peer-to-peer learning opportunities, to roll out best practices and adapt programmes as evidence evolves.

 

AIDS 2016:
BIG QUESTIONS
TO DRIVE ACTION


From the AIDS 2016 conference hallways, plenary sessions and Global Village conversations to cabinet meetings, boardrooms and community groups, we urge all delegates to challenge each other and to get specific: “What must be done if we really are to end AIDS? How do we address the current AIDS fatigue environment? How can we ensure predictable and sustained financing to close the remaining gaps?”

Below are 10 sets of guiding questions we, as the IAS, will be asking – of ourselves, of global policymakers, of national politicians and health leaders, of development partners and of you, who ultimately will be the ones who make the end of AIDS a reality:







1. Supporting frontline HIV workers
How can we ensure that frontline workers have easy access to the latest evidence and the ability to implement it? How can access to HIV prevention, care and treatment be seamlessly integrated with other priority health issues, including sexual and reproductive health and other comorbidities including tuberculosis, malaria and hepatitis?

2. Realizing test and offer
What are we doing to move the latest World Health Organization treatment guidelines from goal to reality? Whose responsibility is it to ensure countries have what they need to expand access to treatment? How can we scale up differentiated models of HIV treatment delivery? What role should the private sector and workplace play in “getting to zero”?

3. Reimagining prevention
What are national governments and donors doing to ensure comprehensive prevention is well-funded, implemented and evaluated? What steps can countries take to expedite regulatory review of PrEP? Are we adequately funding the HIV prevention research pipeline to ensure next generation prevention options are available as soon as possible? How do we continue to drive progress on new prevention tools without losing focus on other proven methods, like condoms, behaviour change programmes and peer-to-peer interventions?

4. Foregrounding human rights
How can human rights approaches remain the key principle of HIV work? How can we move beyond fighting legislation to building environments that support the rights of all, including sex workers, men who have sex with men, transgender men and women and people who use drugs? How can the lessons of HIV be used to build a lasting legacy of social justice?

5. Advancing a cure and a vaccine
How do we make sure there is continued support for the robust basic science needed to find a cure and a vaccine? How can researchers and private industry better collaborate to share knowledge and expedite the search for a cure and a vaccine? How are we promoting and sustaining careers for the next generation of researchers and ensuring young researchers have a place in the future of HIV science?

6. Addressing the needs of women and girls
Where is our road map for ending the epidemic among all women and girls, including adolescents and those who are sex workers, transgender and/or who use drugs? How can we build on the promising findings of the recent vaginal ring trials to ensure women have access to additional female-controlled prevention options? How do we meaningfully address some of the gender norms that place women and girls at increased risk of HIV?

7. Better serving the needs of infants and children
How can we accelerate the development of the next generation of paediatric formulations for HIV treatment? What is needed to incentivize industry and research institutions to develop high-quality screening tools and treatment options for children? How do we ensure that new technologies are affordable and rapidly reach all children living with HIV?

8. Making health care meaningful for men and boys
How can HIV treatment expansion efforts be more strategically positioned to reach men and boys? How can we develop and implement adolescent-friendly services that more directly reach adolescent males – both HIV positive and negative? How can men and boys become agents of social change?

9. Renewed and sustained focus on key populations
How can access across the HIV cascade for key populations (men who have sex with men, transgender people, sex workers and people who inject drugs) be improved? How should the meaningful engagement of key populations in policies and services that affect their lives be advanced in the health sector and across the workplace? Are we doing enough to reach adolescent key populations?

10. Reinvigorating support for civil society and constituency-led agencies
How can we most effectively communicate the value of civil society and advocacy in the fight against AIDS? Which agencies, philanthropies and other institutions will commit to increase funding for civil society? How can we ensure that the GIPA (Greater Involvement of People Living with HIV) Principle is actively put into action by all agencies involved in the AIDS response? How can community-led services increasingly become part of the HIV tapestry?

 

THE IAS
COMMITMENT
© 2014 John Nicholson, SPRING Project, Courtesy of Photoshare


 
In an environment of increasingly constrained resources, it is more important than ever to prioritize the actions that will have the greatest impact. IAS’ strategic approach is to ensure that every action is grounded in science, respects the rights of key and priority populations and is adequately funded for success.

IAS has a unique ability to reach and support key stakeholders through our membership network and the advocacy platform we are building. Our convening power remains as strong as ever and is a catalytic force that is increasingly harnessed. Under the strategic vision of Science. People. Progress. we will match that strength with a representative voice for progressive change in the response to AIDS. Now more than ever.

Starting in 2016, IAS is taking its commitments forward with these five immediate actions:

  • Translate evidence to a regional context. Convene tailored scientific symposia across four regions: Latin America, West Africa, Eastern Europe and Southeast Asia. The meetings will be accessible to IAS members and national policymakers in order to lead practical discussions of the gaps between policy, implementation and what frontline workers need to realize their full potential. These efforts will support scientific advancements that positively alter the course of the HIV epidemic and promote greater understanding of new discoveries.

  • Provide direct access for frontline health workers to global- and national-level meetings. The newly created IAS Educational Fund will provide support to health clinicians and advocates that allows them to attend IAS-convened meetings and then bring that learning home in tangible ways to their community and workplace. This will include access to peer-learning tools, translational presentations and the latest scientific data to support the professionalization of the HIV workforce – particularly the next generation.

  • Improve treatment access and the meaningful engagement of adolescents. Identify and address gaps in adolescent HIV prevention and care programmes through increased cross-sector partnerships and a series of youth-run dialogues. By hosting these mechanisms, issue experts and adolescent voices will jointly inform the global HIV response, fill the research gaps that are not being addressed by existing global initiatives and build adolescent research capacity.

  • Support the adoption of patient-centred care for all people living with HIV. Develop a set of key tools to be used by implementers that will help reduce the burden on health systems and improve the quality of HIV care. To help resource-limited countries improve care access with greater efficiency in-country, we will focus our efforts on differentiating models of antiretroviral therapy delivery that will have far-reaching benefits across the HIV continuum of care.

  • Develop a road map for research towards an HIV cure. Under the guidance of a multidisciplinary International Scientific Working Group, IAS will launch an updated Global Scientific Strategy. The document will provide clarity on a realistic scientific timeline for cure research and contextualize it within the current landscape of options. The strategy will ultimately serve as a tool for researchers, donors and other stakeholders to drive funding and research to accelerate the search for a cure.

These immediate next steps are one part of IAS’ broader effort to strengthen and build its global advocacy platform, ensuring that the organization’s convening power motivates action across the globe and delivers concrete results on the ground.

Central to that effort is moving the new scientific evidence that will be presented in Durban from the conference halls to the local communities that disproportionately face the brunt of the epidemic.

Durban offers us that moment to gather as a global community and determine how to harness our past gains, build on bold scientific breakthroughs and ensure we’re making the right strategic choices for the future. Only then will we truly be able to contemplate the end of AIDS.

 

 

 
Special thanks:
Many partners and friends contributed time and effort into consultations and discussions that led to this document. Briefly we would like to thank Annette Sohn, Ben Plumley, Cate Hankins, Ian Grubb, Jamie Forrest, Judy Auerbach, Karen O’Malley, Mauro Schecter, Mitchell Warren, Pedro Cahn, Rob Caruano and Stefano Vella, in addition to the hundreds of IAS members who participated in focus groups, one-on-one interviews and surveys.

 


The photographs in this material are used for illustrative purposes only; they do not imply any particular health status, attitudes, behaviors, or actions on the part of any person who appears in the photographs.