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World AIDS Day 2009


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Dec. 1, 2009—This World AIDS Day, global agencies have issued a call to protect human rights and ensure universal access to prevention, care, treatment and support in order to turn the tide against AIDS.

Lilly Arach, Uganda
Lilly Arach works with people affected by AIDS with the Kitgum District Forum for People Living with HIV.

Today, more than 33 million women, men and children live with HIV and AIDS. The one bright spot in the statistics, according to the UNAIDS 2009 AIDS epidemic update, is that new HIV infections have been reduced by 17 percent over the past eight years.

This achievement could not have been possible without the tireless work of women like Shannon Behning and Lilly Arach. They are leading efforts against AIDS in Colorado and Uganda, in communities almost across the world from one another. Yet, they share many similarities.

In Kitgum District, Uganda, Lilly Arach speaks at community forums and provides training to people affected by AIDS with the Kitgum District Forum for People Living with HIV.

There, the story of HIV and AIDS is a dramatic one, especially in the north. A legacy of 20 years of civil war has left the area devastated by violence, abductions and death. Over 90 percent of people from Kitgum District have lived in a refugee camp at sometime in their lives, Lilly says. Poverty, sexual violence during the conflict, and limited health services has led to a high HIV prevalence—almost one out of every ten people lives with HIV.

Lilly lost her husband to HIV in 2002. Cut off from the world, she found solace from other widows. After many months of providing support for one another, they decided to join together and do something about the epidemic.

“We decided, why are we seated here always? Why don’t we do something? And then we started a drama group...we started moving to the nearby villages to perform these dramas, dramas on HIV,” she says.

Today, she works with people living in refugee camps to raise awareness about HIV, encourage testing and provide counseling. She also supports women affected by HIV throughout Kitgum, helping ensure they have access to basic services like healthcare and food assistance, and promoting them as leaders in decision-making bodies throughout the government.

Much of her work is to reduce the stigma against people living with HIV. She encourages women living with HIV to claim their rights and access services so they can live a healthy life. She tells them, “Why should you hide there, and die in silence?”

For Shannon Behning, who was diagnosed with HIV in 1992, the struggle to finding health care and other support during her illness prompted her to do more for others as well.

She started the Women’s Lighthouse Project in her home in Aurora, Colorado in 1997 and today it is a thriving organization. The organization counsels women living with HIV and connects them to services to ensure a woman remains healthy and has access to appropriate health care, food, social services and other support.

Both Shannon and Lilly stress the need to provide a range of services, to address interconnected needs. They emphasize that poverty, housing, food and childcare are all issues that women face, whether or not they are living with HIV.

Sometimes, living with HIV “is the last thing that’s really an issue with a woman who is HIV infected. She’s probably got all this other stuff going on,” Shannon says.

They also talk about the importance of women’s leadership and advocacy to ensure programs and services meet women’s needs.

Shannon regularly meets with her members of Congress and other leaders to shape policies and funding to meet the real life needs of her clients.

Shannon Behning, USA
Shannon Behning started the Women’s Lighthouse Project in Colorado to connect women living with HIV to services that ensure they remain healthy.

“Being a woman living with HIV and going into an office and sharing that story is old in my growth,” says Shannon. “Now I have statistics and numbers and facts and talk about what my agency is doing and what’s happening locally, nationally, internationally.”  

In Kitgum District, Lilly serves as a positive example of a woman leader, confronting cultural attitudes that present barriers to women having a greater role in decision making.

Lilly says that she used to fear speaking to community groups because people would think, “you’re just a mere woman, why should we listen to you?” But, now she speaks out wherever she can. “I think that question of being a mere woman is no longer there…I’m somebody who can stand up and talk about what is wrong.”

Both Shannon and Lilly are alumni of the Advancing Women’s Leadership and Advocacy for AIDS Action initiative, which equips and empowers a cadre of women from around the world with the knowledge and skills to strengthen and lead the global response to AIDS.

Funded by the Ford Foundation, it brings together leading global agencies including CEDPA and the International Center for Research on Women (ICRW), International Community of Women Living with HIV/AIDS (ICW), and the National Minority AIDS Council (NMAC).

Read more about other women leaders making change possible and the about initiative.