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Groce’s Address at World Bank Raises
Awareness of HIV/AIDS Risk Faced by Disabled People Worldwide
Nora Groce, Ph.D., Associate Professor of Public Health in the Division
of Global Health, spoke at the World Bank on December 1. Groce’s
address, delivered on World AIDS Day, summarized the preliminary findings
of her global survey on how HIV/AIDS is affecting disabled people around
the world, and what HIV/AIDS services are available to them.
Groce began looking at the issue of how HIV/AIDS affects disabled people
(who make up approximately 10% of the world’s population). Although
very little research had been done on HIV and disabled populations, Groce
suspected that the gap which exists in other health care areas between
health care services and their availability to disabled people also exists
in the context of HIV/AIDS.
Groce estimates that disabled people are at equal to up to twice the risk
of becoming HIV positive as are non-disabled people. Part of the problem,
she says, is that many, including some health professionals, do not view
disabled people as being at risk. For example, disabled people are often
incorrectly assumed to be sexually inactive, unlikely to use drugs or
at small risk for sexual abuse – despite the fact that research
clearly shows this is not the case.
Funding for the project comes from a collaboration between two divisions
within the World Bank, the Office of the Adviser on Disability and Development
and the Global HIV/AIDS Program. Dr. Groce has been working in collaboration
the directors of both divisions, the Hon. Judith Heumann and Dr. Debrework
Zewdie, over the course of the past year. At EPH, a series of research
assistants, including Bernadette Thomas, MPH/RN 2004, Willyanne DeCormier,
MPH 2003, and Reshma Trasi, MPH 2005, helped with various stages of the
project.
The first part of the project was an e-mail based survey. Groce prepared
the survey and sent it, in July 2003, to approximately 2,500 disability
advocacy groups and AIDS organizations around the world. As of late December
2003, some 835 responses had been received from groups and researchers
in developed and developing nations ranging in size from India and China
to the Faroe and the Andaman Islands. An article in The Lancet this past
April was the first in a series that will summarize the study.
One common theme among the responses was that disabled people with HIV/AIDS
are routinely denied all types of HIV/AIDS-related services. In fieldwork
this past summer in Swaziland and South Africa, Dr. Groce found that disabled
individuals were routinely turned away from HIV testing sites, assured
by clinic staff that they ‘couldn’t possibly be at risk.’
She reports, “disabled people know that they are at risk and feel
that no attention is being paid to that fact.” The study also found
that requests for funding from grassroots disability advocacy organizations
for HIV/AIDS work have been turned down repeatedly.
In addition to sometimes facing outright denial of HIV/AIDS prevention
and treatment services, disabled people confront a host of other difficulties
in accessing services. Stairs to treatment facilities bar the way of wheelchair
users. The lack of sign language interpreters can prevent the deaf from
receiving services. Educational campaigns and service advertisements on
billboards are not useful to the blind, and radio campaigns do not reach
the deaf. Analogies and veiled references to items like condoms and sex
are not understood by individuals with mental retardation. Groce argues
that in many cases, individuals with disabilities can be included in existing
AIDS outreach efforts at little or no additional cost. Sometimes, it is
as simple as making sure that a person in a wheelchair is depicted as
one of the group of people shown in a billboard or poster addressing HIV/AIDS.
In other cases, disability-specific interventions will need to be developed
in order to provide AIDS messages to harder-to-reach portions of the disabled
population.
The World Bank will be renewing funding for the project for this coming
year. The next step will include on-going analysis of the information
collected as well as a systematic review of how disabled populations can
be included in current AIDS outreach efforts. In addition, there will
be on-going research on how to reach specific disabled sub-groups with
HIV/AIDS messages. Groce will continue her efforts to raise awareness
of this public health problem in February, when she will be the keynote
speaker at a conference on Disability, HIV and Violence in South Africa.
She will be addressing the Disability and Rehabilitation Unit of the World
Health Organization in Geneva in March.
-Story by Christy Gordon, based on interview with Nora Groce, December
22, 2003.
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