“The Equity Deficit: Unequal and Unfair Access to HIV Treatment, Care and Support for Key Affected Communities” expresses the NGO Delegation’s commitment to examining access to ART across all communities, especially those that carry the unequal weight of HIV infections. As you see in the report, despite all the successes in expanding treatment globally, key populations still left far behind treatment access.
The report analyzes the Equity Deficit in treatment access considering 5 factors:
1- Human Rights and Ethics,
2- Existing Data about key population access to ARV and what works
3- Financial Investment
4- Meaningful involvement of key affected populations in decision-making
5- Technical capacity
Forty groups from sex workers, men who have sex with men, transgender people, people who inject drugs and treatment advocates worldwide were interviewed and participated in group discussions. In addition, we reviewed over 100 research papers, reports and analyses sourced from different organizations and sectors.
What did we find?
Show slide 2 which demonstrates the unequal burden for key populations when it comes to new infections.
The Equity Deficit in treatment access for key populations results from the multiple structural and systematic barriers experienced by many communities and countries. The causes of inequitable access to treatment, care and support are the stigma, discrimination and persecution that occur within health care settings.
These barriers constitute violations of Human Rights for people who are part of key populations because punitive laws and policies as well as associated social, cultural and religious norms delay or deny their access the health services and/or they experience abusive behavior within health care settings.
So initiatives to expand availability and to scale up access to ART require addressing these barriers in order to reach equitable access and uphold the human rights of all people, including those who are part of key populations.
We also received the message, from communities in all of our regions, that the primary purpose and goal of ART must be to benefit people living with HIV. The message was very clear that, in addition to the need for access to ART, people have the right to receive comprehensive treatment education about how treatment can benefit and impact their lives. Stakeholders from all communities expressed that ART treatment should not be imposed on people living with HIV. Decisions about when, or if, to start treatment must be made by the person living with HIV, with full information about risks and benefits, including what is currently known and what is currently not known.
In no uncertain terms, community members specifically denounced the coercion to test, accept treatment or any other unwanted procedures currently experienced by many in key affected communities.
An important limitation we experienced in our research on the “Equity Deficit” was the glaring lack of information access to treatment, care, and support for people who belong to key affected communities. The lack of disaggregated treatment data for key populations keeps these populations invisible. The consequences here are significant. Without this data, program priorities and budget allocations proceed; all the while, inadequately reflecting the realities and priorities of communities on the ground.
A recent systematic review by Mathers et al. found that, of the 98 countries that reported drug use and provided data on the number of ART sites, only 47 offered country estimates of the number of people who inject drugs who received ART.
Looking specifically at treatment for prevention issues: communities insisted that ART for prevention must be implemented as one part of a combination prevention package that includes access to information about how HIV is acquired and transmitted, male and female condoms, harm reduction interventions for PWID, and vertical transmission services, as well as access to services that promote and ensure protection of human rights, the reduction of HIV- related stigma and action on gender-based violence.
The studies that were reviewed demonstrated that the most effective approaches to services for people in key populations come through community-based services. A number of studies published and presented in 2012 found that a community empowerment approach to prevention, treatment and care for sex workers has significant impact and is cost effective. In addition, the incorporation of key affected populations in health services as health workers improves the efficiency and the effectiveness of services (Kothi and Aravani in India).
Ending the “Equity Deficit” requires an increase in investments for treatment, care and support for sex workers, men who have sex with men, transgender people and people who use drugs. Services for these groups have been dangerously underfunded. Stakeholders expressed concerns that investments for key affected populations come largely – albeit insufficiently – from external funding sources, with a lack of domestic investment often reflected in country’s policies and restrictive legal environments.
t is necessary to be clear that the value of investing in key affected communities is not only in human rights but also through public health and economic rationale, as, for example, a 60% reduction in the unmet needs of PWID for ART, OST and NSPs would reduce HIV incidence in Odessa, Karachi and Nairobi by 41%, 43% and 30% respectively (Altice et al , 2010).
To end the “Equity Deficit”, investment in treatment for key affected communities and for children and adolescents are basic requirements , as well as the possibility of affordable medicines across geographical areas is required.
The harmful role of agreements on TRIPS and FTAs were recognized by people living with HIV and other stakeholders, as well as the failure of the current incentive structure for research and development to address the priority health needs of developing countries.
The meaningful involvement of key affected communities is a key factor to address the “Equity Deficit”. We want to stress that this means meaningful involvement in decision-making and resource allocation as well as in the roll-out of the 2013 Treatment guidelines.
Fundamentally, what makes all of these possible is having the necessary technical capacity. Technical Support is necessary; and let us be clear that this includes the participation of key affected communities in Technical Support. There is concern that technical support strategies and provisions have fallen behind the treatment landscape and are not able to respond to the current needs. Technical support needs to eliminate “the one size fits all” approach and be adapted for each circumstance. Communities noted that, in many instances, the organizations and networks of key affected communities are the most prepared and capable of providing Technical support, so these community organizations need to be recognized and resourced. Currently, most of them function without funding and without recognition.
In 2011 at the UN General Assembly High Level Meeting on HIVAIDS in June 2011 in New York, the head of States with all other stakeholders adopted a new Political Declaration that includes new commitments and targets which were expected to keep the momentum in the HIV response. They set up goals until 2015. Now we are at a critical moment: the response to the AIDS epidemic and the global development agenda are coming to a milestone. Both, the PD 2011 targets and the MDGs will face the 2015 deadline. Now we know that the new Post 2015 SDG will not be able to capture all of the HIV dimensions that we still need to pursue. Therefore, it is time to create the political momentum necessary to ensure a strong global push towards eliminating new HIV infections and keeping people living with HIV healthy in the post-2015 era. A new HLM on HIV will help us to assess progress, galvanize efforts and bring together Heads of State to recommit on the fight against AIDS in the years ahead. The rationale, quite simply, is that a High Level Meeting will allow attention to be focused on un-met goals set at the last UN General Assembly Special Session on AIDS and help us all to create a actionable roadmap going forward that prioritizes HIV. Our constituencies, over 400 civil society organizations within the last two weeks, claimed for that and request our action.
In summary, the “Equity deficit” is real and constitutes a tremendous challenge to addressing the epidemic and moving on the path to ending AIDS. The Equity Deficit requires attention as soon as possible. The future of treatment should not only be about the scale but equity. No one must be left behind.
So we invite the PCB to consider the recommendations DPs from our Report.