What About Us?: Children's Battle to Access AIDS Treatment
September 12, 2005
On September 12, 2005, a standing-room only crowd gathered on Capitol Hill to attend the Foundation's moving and powerful event that brought something rare to the halls of Congress-a human face on the issue of children's access to AIDS treatment worldwide. The event, "What About Us?: Children's Battle to Access AIDS Treatment," reminded U.S. lawmakers that children cannot be left behind as adults enroll rapidly into HIV/AIDS treatment programs in resource-poor settings around the world. Children and international AIDS experts testified to an audience that included Congressional staff and members of the NGO and corporate communities. The audience also included key government agencies overseeing the President's Emergency Plan for AIDS Relief (PEPFAR). Speakers on the event's three panels highlighted the alarming fact that less than one percent of the 2.2 million HIV-infected children are receiving AIDS drugs — but they also offered hope and outlined strategies to improve children's access to care and treatment.
Foundation Ambassador Josephine Nabukenya on Capitol Hill.
The first panel revealed the stories of some of those most affected by pediatric AIDS. Jake Glaser, Elizabeth Glaser's son, and Josephine Nabukenya, a 12-year old Ugandan AIDS advocate, shared their personal experiences growing up HIV-positive. Jake called on political leaders and the entire HIV/AIDS community to put differences aside to fight tirelessly — as his mother did — for HIV-positive children around the world. "Today, I consider myself very lucky," Jake reflected, "but there are so many kids, around the world, in this country, everywhere you look, that still need our help." Josephine captivated the audience by delivering a heartwarming testimony and performing a poem she wrote soon after learning her HIV-positive status, calling on the global community to "kick AIDS out of the world." Jake and Josephine answered questions from the audience and urged U.S. lawmakers to make treatments available for the children who so desperately need them.
The second panel featured international AIDS experts Dr. Mark Dybul, the U.S. Deputy Global AIDS Coordinator, and Peter McDermott, UNICEF Chief of HIV/AIDS. Both testified on the promise of current U.S. and international efforts to address pediatric HIV/AIDS, as well as the unavoidable fact that far too many children are still dying from AIDS every day. Dr. Dybul spoke about PEPFAR's progress and goals, including its efforts to count the number of children on treatment in its programs-something few governments require-in order to better allocate its resources. Dr. Dybul affirmed, "As we dramatically scale up our programs, we are working to address the barriers that make pediatric treatment such a challenge." McDermott passionately urged the HIV/AIDS community to commit to prioritizing children, arguing that 22 years into the HIV/AIDS epidemic, the problem of pediatric AIDS is often still neglected.
The third panel brought forward critical perspectives from the field and recommendations on improving treatment for children, even in the most resource-limited settings. The Foundation's own doctors, Cathy Wilfert, scientific director for prevention of mother-to-child transmission (PMTCT), and Denis Tindyebwa, technical advisor for care and treatment in Tanzania, testified that more resources are needed for the diagnostic equipment, medical training, and full continuum of care services to meet children's special needs. Dr. Tindyebwa stressed the urgency of testing children for HIV early. "If we do not specifically target to treat the very young children, we will miss them. They will have died. We need to focus on getting to these children," he said. But above all, Drs. Wilfert and Tindyebwa argued that saving children's lives is possible — and we must expand treatment programs to include all children who need it.
The event, which was moderated by Mark Isaac, Foundation Vice President of Policy and Communications, can be viewed from your computer by clicking
HERE.
In tandem with the event, the Foundation released a report that echoed the pleas of the panelists on the need to improve and expand pediatric care and treatment. In the report, the Foundation calls on lawmakers to enact a strategy based on five key principles — transmission prevention, training, testing, treatment, and targets — to level the playing field for HIV-infected children and improve their chances for a healthy future living with HIV/AIDS.
Click here for a PDF copy of the Foundation report, "What About Us?: Children's Battle to Access AIDS Treatment."
The day after the event, Senator Christopher Dodd (D-CT), who has shown tremendous leadership on the issue of children's health, cleared time from a busy schedule to meet with Josephine and her mother, Margaret Lubega. Senator Dodd listened attentively as Josephine and Margaret shared their life stories. Josephine told Senator Dodd that she had been lucky to live close to a pediatric AIDS care and treatment program in the city of Kampala, but that many children who lived in rural villages did not have this opportunity. Children who live in more rural areas desperately need access to drugs as well as education, Josephine insisted. Senator Dodd, a longtime champion for children and friend of the Foundation, thanked Josephine and Margaret for meeting with him and expressed his strong dedication toward a common goal: ensuring that Congress expands and improves pediatric HIV/AIDS treatment programs around the world.