By Kim-Jenna Jurriaans - May
23, 2011
Global efforts to stem the spread of
HIV/AIDS and improve the lives of people living with and affected by HIV are
abundant, ranging from government initiatives to the multi-stakeholder Global
Fund for AIDS, TB and Malaria to NGO projects of all sizes.
Much of this international body of work
focuses on technical, bio-medical approaches to HIV prevention and treatment
and fails to recognize the value of grassroots women's work in breaking
silence, raising awareness and expanding access to testing and care - a crucial
component in linking marginalized communities to testing and available
treatment. A heavy focus on traditional high-risk groups in urban areas, like
sex workers and men who have sex with men (MSM) has obscured the increasing
vulnerability of married women and those in rural areas, as male migrant
workers have become transmitters of the disease from traditional high-risk
groups to rural and urban households. Increasingly, grassroots women's groups
are taking leadership within their communities by creating local programs for
HIV/AIDS care and prevention that incorporate and respond to local contexts and
needs, like Swayam Shikshan Prayog (SSP) in India, and Iseri Ibagari in Guatemala. Both organizations began their HIV/AIDS advocacy after
engaging in cross-regional exchanges with African grassroots groups within the
Huairou Commission network -a testimony to the transformative power of
peer-learning and the need to enhance poor women's opportunities to engage in
international knowledge exchanges.
SSP in India, which started out as a network of community self-help
and credit groups, began to engage in HIV/AIDS-awareness work in 2007.
"Nobody in India was talking about AIDS," says Nasseem Shaik, a
field organizer for this movement of 75.000 women leaders. "I learned
about HIV at the 2007 Grassroots Academy on AIDS in Kenya." According to the government at the time, no one
was taking advantage of health services while the disease was spreading
rapidly, leading the government to reach out to local community leaders.
"They knew HIV would come to every home if they didn't start talking about
it," recalls Shaik. Based on their existing health promotion and
governance work, SSP became one of a number of NGOs selected for a government
partnership to facilitate HIV/AIDS education in local communities, for which
community health workers were trained as peer educators on the disease, the
available government services and to conduct counseling. Today the
organization's health workers teach prevention and care in 750 villages across India, with a special focus on pregnant women. Working in
partnership with childcare centers, SSP's Health Governance Groups have been
able to secure access for pregnant women living with HIV to appropriate
treatment, care and support services, including prevention of vertical
transmission and on-going family planning and support services.
"The infrastructure is there, but
actually making it work takes a lot of work from communities," Shaik
emphasizes. It is this crucial step of connecting communities to available
government services where the efforts of grassroots community health workers
are essential, both for the education of communities and for ensuring that
government policies reflect local needs.
This is true not only in India, but other geographic regions as well.
In Central America, HIV prevalence is
higher for the Afro-Indigenous Garifuna who live along the Gulf of Hondruas than for the general population. As a marginalized
ethnic minority, the Garifuna community experiences widespread poverty,
informal sector employment, and poor access to health information and care. Livingston,
a Guatemalan city of about 15,000 counts a high Garifuna population. To break
the silence and stigma surrounding HIV, in 2008, a group of women living with
and affected by HIV founded the organization Iseri Ibagari (New Life). Today,
the group is a well-known entity in Livingston for providing HIV counseling and testing, distributing
condoms and information to the community. And attitudes are visibly changing.
"Before, the condoms would expire on the shelves," says Ingrid
Gamboa, co-founder of Iseri Ibagari. "Now I have to carry condoms in my
bag because people stop me on the street." It's this direct connection to
the community and the organization's emphasis on serving the needs of the local
population has made them flexible and successful. Iseri Ibagari opens its small
office at all hours of the day for those who need care and health workers
gladly come to people's homes to administer tests, which currently number at
about 70 a month. When a person tests positive, they are counseled and referred
to an integrated health center for treatment and medical care. But the
importance of the organization's work goes deeper than HIV testing and
distributing prophylactics. "It's about closing the circle for each
individual," says Gamboa - a process which involves providing meaningful
psychological and moral support to patients and their families, to address their
needs holistically. "You can't talk about change to people if they
encounter other problems, like violence. Only this way, by closing the circle,
can we get good results. " Gamboa, who as her day-time job works at the
ministry of health, has been involved with community-based AIDS advocacy for 18
years, in an effort to close an essential gap between health policy makers and
communities. "It can't just be the health department that deals with
HIV," she emphasizes. For that reason Iseri Ibagari is training 5 young people
to be peer educators full time, who will work with MSM, housewives and women
living with HIV.
While Iseri Ibagari has made tangible
progress over the four years of its existence - including successfully lobbying
the government to cover the transport fees of HIV positive patients who need to
travel to Puerto Barrios for treatment and regular check-ups - Gamboa cautions
that the groups work is far from over. "Stigma is the worst
sickness," she says. "We broke the stigma, but it's not gone and it
continues to keep people from getting tested."
The next step for the group is developing a
stronger home-based-care system to support patients and their families - a
process they hope to model on the successful work of African grassroots
organizations, like GROOTS Kenya, who have had years of experience in the
field. "Africa is our school when it comes to home-based-care,"
says Gamboa.
Creating possibilities for exchanges of
knowledge between grassroots women's groups globally, therefore, remains
crucial to the development and improvement of sustainable programs for HIV/AIDS
prevention and care. By bridging the gap between national policies and poor
populations, these women-led initiatives ought to be recognized as a
cornerstone of the successful fight against HIV/AIDS worldwide.