EGPAF Ambassador Josephine Nabukenya Visits Capitol Hill

Last week during her whirlwind visit to the United States, EGPAF Ambassador, Josephine Nabukenya, took time out of her busy schedule to join me on a visit to Capitol Hill. While the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) often engages with Capitol Hill to educate offices on issues and legislation related to pediatric AIDS. It is especially impactful to be able to bring someone to a meeting who has been personally impacted by HIV as well as EGPAF programs.

Josephine eloquently shared her story with several House and Senate offices, and participated in a roundtable hosted by the Congressional HIV/AIDS Caucus.

Josephine is no stranger to the halls of Congress—in fact in 2005 she testified at a hearing in the Senate on the President’s Emergency Plan for AIDS Relief (PEPFAR) program.

“From the beginning, the US government has been the leading donor in the fight of ending AIDS which is very crucial in both research and implementing different programs that have the target and goal of ending the disease,” says Josephine. “Ending the epidemic requires sustained attention, research and funding – the US Government has shown the leadership and capacity to help us achieve great things in this fight, and will continue to do so.”

Congressional staff were blown away by how Josephine was able to not just overcome the stigma and discrimination she and her family faced because of their HIV status, but that she continues to speak out and counsel other youth facing similar issues as they grow up with HIV.

Staff asked many questions of Josephine, including how she was stigmatized, the challenges she still faces, and the hardest aspects of life for children growing up with HIV.

She shared the struggles that many adolescents face when having been on treatment their whole life—they become fatigued and don’t understand why they should continue to take medicines when they look and feel fine. When a staffer asked her how she got through that period, she noted that she feels like she must be an example to others, especially younger children, so she always took her medicines.

“It was very important for me to go and meet different representatives at Capitol Hill because they make decisions and influence a lot of impact in my community,” said Josephine. “Therefore, me sharing my life experience with them was the best thing for me or any donor or policy maker would love to do. It created room for me as a beneficiary to interact with the decision makers openly thus letting them know what has been done, what needs to change and what can be considered.”

Josephine’s message was clear—being a child with HIV is a challenge, but with support programs like those through EGPAF and PEPFAR, children living with HIV can not only survive, but thrive.