Charity, who has a physical disability that makes it hard for her to walk, was raped in her village in northern Uganda. She wants to be tested for HIV because she feels sick and doesn't know why. But the nearest health clinic is miles away -- she would have to crawl there and sleep on the road.
When John, a deaf man from South Africa, went to his local clinic to get tested for HIV, the doctor was only able to communicate with him using hand-written notes. Fifteen minutes later, the doctor wrote in bold letters: "YOU ARE HIV POSITIVE." John asked if this was really true. The doctor replied, "Yes, and you can go now."
The international community will come together in New York from June 8-10 to chart the future course of the global HIV response. At past meetings, nations pledged to ensure universal access to HIV prevention, treatment, and support. An even more ambitious goal is up for discussion now: zero new infections, zero discrimination, and zero AIDS-related deaths by 2015.
The idea of getting to zero got a big boost earlier this month when a research study found a 96 percent reduction in the risk of HIV transmission for people on antiretroviral drugs. The science is sound. The question now is whether there is the commitment to roll out expanded treatment programs. But another commitment is equally important: to end discrimination and dismantle the barriers to universal access to HIV prevention, treatment and support.
Unless these services reach people with disabilities like Charity and John, the promise of ending the AIDS pandemic will not be realized.
At least 10 percent of the world's population, or 650 million people, have a disability. No one knows how many of them are living with HIV. World Bank estimates of HIV prevalence among people with disabilities in Africa range from 11 percent to 60 percent.
Governments have recognized that they have to reach key populations to stop the spread of HIV -- people who use drugs, men who have sex with men, people who buy and sell sex, and youth. But, too often, people with disabilities are left out.
Why?
First, because of false assumptions. Some believe that people with disabilities are not sexually active. But a global survey by Yale University and the World Bank proves otherwise. People with disabilities have sexual relationships just like everyone else, yet their HIV infection rate is up to three times as high as for those without disabilities.
That's because people with disabilities are less likely to have access to HIV prevention information, or to condoms. Many have been shut out of schools, where they might be able to get information, because of more false assumptions -- that they are a distraction and incapable of learning, or because schools are physically inaccessible. Information about HIV elsewhere may not be in accessible formats -- radio campaigns miss the deaf, billboards do not reach the blind, and complex messages may not reach those with intellectual impairments.
The rate of drug use among people with disabilities equals that in the general population. And people with disabilities suffer from a higher rate of sexual abuse and violence. Poverty rates are high, so health care may be unaffordable. And services are often physically inaccessible.
Since the last major international summit on HIV in 2006, important steps have been taken: the UN adopted the Convention on the Rights of Persons with Disabilities, and 100 countries have ratified it. The convention requires governments to make sure that people with disabilities get the same quality health services as everyone else. This includes HIV treatment, counseling and prevention. Pilot programs in South Africa, Uganda, Thailand, and the United States have successfully included people with disabilities.
But it's not enough.
Governments need to gather comprehensive data on HIV prevalence in the disability population. Once we know more, we can do more. Governments should also involve people with disabilities in designing HIV education and counseling services, and in national and local HIV governance structures. People with disabilities should be trained and employed as counselors at clinics and hospitals. HIV informational materials should be available in formats accessible to everyone living with a disability.
As heads of state and health ministers gather in New York, they need to renew their commitment to combat HIV on all fronts, for everyone. People with disabilities should rally to ensure that they are heard and included at the meeting. Just as important, they should work with other groups who are often marginalized and vulnerable to HIV infection and to the pervasive discrimination that perpetuate the global AIDS epidemic: youth and women's groups, sex workers, people who use drugs, lesbian, gay, bisexual and trans populations, migrants, prisoners, and people with mental illness.
UN declarations won't end the AIDS epidemic. But a declaration that endorses the three zeros, a commitment of adequate financial support, and an active, united and engaged civil society just might.
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