HIV-Positive for 20-Plus Years: ‘Not Easy, but I’m One of the Lucky Ones’

Life-sustaining drugs are keeping people alive for decades, so conferees at the International AIDS Conference in Melbourne, Australia, delved into quality-of-life issues.

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“Part of the reason the voices seem to be quiet, is because the reality is we are tired. I am tired of having to say the same things, to the same circles, to the same people, day after day, week after week, month after month, year after year. I’ve been saying the same thing for 22 years.”

Her voice shaking as she teared up, Moses-Burton continued: “I speak so passionately to our partners especially: Help us not be so tired. Help alleviate some of this burden of carrying this thing, all of this responsibility, not just for ourselves, but for our entire community. That is a tremendous burden that nobody prepared us for.”

The tension passed; the community is small and there was no residual drama or ill will between the two sides, focused on a shared goal.

In the end another policymaker on the panel bridged the divide between the longtime positives and the officials. “People on the policy side are also close to the realities,” said Mbulawa Mugabe, a UNAIDS deputy director, originally from Botswana. More than a decade ago, he learned that his sister had developed AIDS. Now she’s a grandmother.

“At some point today’s babies born with HIV will be 20, 30, 50,” Mugabe said. “When they begin to age, their needs are going to change, and we have to make sure that at every stage in their life course we can respond and respond appropriately.”

Read more about the International AIDS Conference at the Black AIDS Institute. ​

Linda Villarosa runs the journalism program at City College in Harlem and writes frequently about health and social issues. This is the sixth International AIDS Conference she has attended as a volunteer reporter for the Black AIDS Institute. Follow her on Twitter.