Blueprint: Support community efforts, strengthen systems, improve delivery and ensure funding

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David Barr began working on HIV/AIDS issues in 1985. He coordinated the creation of the HIV Collaborative Fund, a partnership of the International Treatment Preparedness Coalition (ITPC) and Tides Foundation, which to date has supported more than 1,000 organizations in over 70 countries with small grants and capacity-building for HIV treatment awareness, literacy, community mobilization and advocacy.  He was a founding member of the Treatment Action Group and the ACT UP Treatment and Data Group.

Barr wrote the following for Science Speaks’ Blueprint series, in which clinicians, researchers and advocates address the key elements they would like to see in the Global AIDS response blueprint that Secretary of State Hillary Clinton called at the 2012 International AIDS Conference in Washington.

By David Barr

Perhaps the most important thing to achieve the US government’s stated goal of an “AIDS free generation” is to provide services, support and resources to the current generation of people living with HIV.

The best way to improve health outcomes and reduce HIV infections rates is to provide strengthened systems and resources to improve service delivery:

  • Increase the demand for and use of HIV testing and counseling,
  • Drastically improve the ability to successfully link people from testing to care, treatment and prevention services.
  • Ensure access to high-quality, consistent ARV treatment, prophylaxis for opportunistic infections, TB treatment and other health services.
  • Provide support services to retain people in care and on treatment for the rest of their lives.

It is now clear that treatment provides not only improved health for people living with HIV, but also one of the most important and effective ways of preventing transmission.  The role of treatment as a prevention intervention offers a new way to conceptualize how AIDS services are delivered. In particular, it provides new opportunities to integrate HIV treatment and prevention services, which may require significant altering of current programmes, funding structures and approaches that consider them distinct and separate HIV service domains. HIV service delivery can be re-configured with a primary focus on ensuring that all those who meet current treatment guidelines have access to ART—along with the scale-up in HIV testing this requires. This will not only maximize the prevention benefit that treatment provides, but also provide a more efficient framework through which a combination of additional prevention interventions – condom and syringe distribution, male circumcision, behavioural change programs – can be offered to people testing either positive or negative. And, there remains an urgent need to improve the context in which people learn about and act upon their HIV status.  Continued stigma and human rights abuses are perhaps the primary impediment to achieving an AIDS-free generation.

The advent of ART in the late 1990s changed the course of the AIDS epidemic. Reductions in morbidity and mortality with the use of ART have long been demonstrated for people living with HIV who initiate treatment with fewer than 200 CD4 cells/mm. The World Health Organization (WHO) and other treatment guidelines changed as evidence accumulated that starting treatment earlier provides better health outcomes for people with fewer than 350 CD4 cells.

Over the coming months, WHO will debate whether the guidelines should once again be changed to recommend starting ART at <500 CD cells or even regardless of CD4 cell count.  The U.S. government through its process of creating a “blueprint” to realize its goal of an AIDS-free generation, will certainly also debate the ‘when to start’ question. There is compelling data to consider the <500 threshold in terms of improved treatment outcomes.  That is the current recommendation in the US.  Recommending that everyone who is HIV-infected start therapy immediately regardless of CD4 cell count is currently not yet supported by a high degree of clinical data demonstrating a treatment benefit. However, starting earlier would provide a prevention benefit and people could be given the option to start treatment at any stage of their HIV infection.  Providing that option is also the current recommendation in the US.

However, the debate over when to start may be a bit of red herring.  While a few countries have met treatment targets – Rwanda and Botswana are good examples – the large majority of people with HIV start treatment with <200 CD cells.  In Thailand today, the average CD4 cell count of people starting treatment is 68. There is a long way to go to even reach the goal of getting everyone at <200 CD cells onto therapy.  Rather than argue about a new threshold, it might be better to focus on how we improve our immediate implementation goals.  Certainly, individuals living with HIV should have the option of starting treatment at any stage of their disease, just as they should have the right to refuse treatment.  But from a broader policy perspective, how much does “when to start” really matter right now when we are so challenged to meet current targets?

The majority of people starting on ARV treatment over the past seven years have come into care with late stage symptoms of AIDS. The next phase of treatment scale up will increasingly involve a population that is often asymptomatic and the services needed to increase HIV testing utilization and improve linkage to and retention in care will depend on the ability of affected communities to provide services for one another in partnership with formal health care systems. Through the Treatment 2.0 initiative, UNAIDS has recognized that community-based services are an essential component for treatment optimization, including those services provided by people directly affected by HIV.  An increased reliance on community-based service delivery and mobilization is also the cornerstone of the recently approved UNAIDS Strategy for 2011 – 2015.  The Global Fund to Fight AIDS, TB and Malaria has identified Community Systems Strengthening as a key element toward successful provision of HIV services.  The HIV Investment Framework describes both basic programs and critical enabling services provided by affected communities that are essential to meeting current goals.

Community-oriented service delivery, whether provided by community-based organizations or through programs run through health care systems have been shown to increase demand for and utilization of HIV services especially among those populations most at-risk. Because these services are rooted in community, they can, with targeted funding and partnerships with government, be sustained over time.  However, these community-based approaches have rarely been adequately scaled up. Nor has funding for these approaches been sustained, hindering the ability to evaluate their outcomes.

The blueprint for an AIDS-free generation must include a mechanism to support, sustain, evaluate and resource community-based service delivery approaches. There are a broad array of services and activities that are and can be provided through community-based approaches systems, many of which are described in the table below.

Treatment Prevention Advocacy
  • Adherence support
  • Testing and counseling
  • Treatment literacy
  • Linkage to care/support services
  • Linkages to harm reduction services
  • Management of health and psycho-social needs following testing
  • Disclosure support
  • Treatment delivery (a treatment extension role for community organizations)
  • Case management
  • Nutritional support
  • Prevention of vertical transmission
  • Harm reduction services (syringe exchange, opioid substitution therapy (OST), etc.)
  • Sexuality education
  • Sexual and reproductive health and rights awareness
  • Condom distribution
  • PREP education
  • Education on TB infection control
  • Contact tracing/partner notification support
  • Client negotiation, collectivization, peer outreach skills for sex workers
  • Promotion of male circumcision
  • Pre-exposure prophylaxis (PEP) for sexual assault survivors
  •  Monitoring and accounability (health systems, government responses, rights abuses, quality of services)
  • Quality assurance of health services
  • Anti-stigma, anti discrimination, and decriminalization efforts (legal support, law reform, lobbying
  • Policy analysis around access to and development of essential medicines
  • Ensuring the meaningful involvement of people living with AIDS in policy and program development

Finally, any blueprint to end AIDS in our lifetime and for the generations to come must include the funding necessary to get the job done.  We have the tools for success.  We cannot allow shortfalls in funding to prevent us from achieving what is finally possible. The single most expensive thing we can do at this moment is to cut or flat fund support for the HIV response.  The only way to achieve the goals of an AIDS-free generation AND save money over the long-term is to adequately fund HIV treatment, prevention and support services now.

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