You have the right to live

November 28, 2016 by Lesley Reed

A young woman in the Democratic Republic of the Congo learns to live again, and gives courage to her HIV-positive peers.
Two young women and two young men stand together in front of a brick wall.

After surviving a diagnosis of HIV, rejection by family members, and a suicide attempt, Nanou (second from left) found the will to live and a purpose. Photo: PATH/Georgina Goodwin.

When you’re 12 and a girl, sharing your HIV diagnosis can be terrifying. Nanou couldn’t bring herself to tell her own father.

For a long time, Nanou, who lives in the Democratic Republic of the Congo (DRC), fell sick practically every month. “My father thought I had malaria,” she says. Her mother had died from HIV/AIDS when Nanou was seven, but the girl had never been told.

Eventually, Nanou became so sick that she ended up at Sendwe Hospital, where she was finally tested for HIV. Her father, who doesn’t have HIV, struggled to support Nanou and her half siblings. They had only enough food for one meal a day.

“I was so scared to tell him,” Nanou says. “But I needed food to take with the drugs.”

Not long after, Nanou tried to commit suicide. “I woke up the next day alive,” she says. “Then I realized God doesn’t want me to die. He wants me to help the children.”

Creating excellence for youth

Just who are “the children”?

For the most part, they are girls and young women. More than 70 percent of HIV-infected adolescents in sub-Saharan Africa are female. Some contract the disease during birth, like Nanou. But most are victims of gender inequality, sexual violence, poverty, and lack of education.

Nanou is one of nearly 1,000 children and adolescents who receive antiretroviral therapy (ART) through Sendwe Hospital’s Center of Excellence for HIV. The hospital is the largest in Lubumbashi, a mining city on the border of Zambia, but at first it struggled to provide the level of services promised by its name.

A man sits behind a desk.

With support from the integrated HIV/AIDS project ProVICplus, Dr. Joe Kabongo has helped bring “excellence” to Sendwe Hospital’s Center of Excellence for HIV. ProVICplus has reached more than 912,000 people in the DRC with HIV testing services. Photo: PAT

“When the center was created in 2006, there were only a few HIV patients. Then more and more sick came,” says Dr. Joe Kabongo (or “Dr. Joe”), the center’s director. “We had stockouts of drugs. Staff weren’t paid, and they lost motivation. People were dying every few days.”

In 2009, the PATH-led ProVICplus project began turning things around.

The integrated HIV/AIDS project is funded by the US President’s Emergency Plan for AIDS Relief (PEPFAR) through the United States Agency for International Development. Currently, ProVICplus trains and supports staff in more than 160 health facilities, including Sendwe, to offer a comprehensive package of HIV/AIDS and family planning services. It also provides free testing and ART to all patients, and supports community-level efforts to reach vulnerable populations with HIV testing, treatment, and prevention services.

Fast-forward to 2016, and more than 2,375 patients are receiving adherence counseling, support, and free drugs through Sendwe’s Center of Excellence.

“Now I have a formidable team,” says Dr. Joe.

Teen talk

When Nanou was given her diagnosis, Sendwe’s staff had yet to be trained in adolescent-friendly HIV services. Now they’re experts in destigmatizing the disease and supporting the process of disclosure.

Teens, in particular, need significant support to keep them on their care and treatment regimens, yet doing so is key not only to saving their lives but those of others. Sustained treatment suppresses the virus, reducing the risk of HIV transmission.

“It’s enormously difficult to retain patients for longer than two years, especially with so many!” says Dr. Joe. What works best seems to be the advice of peers—like Nanou.

A young woman wearing a blue and white striped shirt.

Poverty, gender inequality, and lack of education put girls and young women at greater risk for HIV transmission. Photo: PATH/Georgina Goodwin.

Nanou is now a self-composed, confident, and committed young woman of 20, transformed much like the Center of Excellence. It’s there at the hospital that she is helping the children. Trained to be a peer educator through ProVICplus, she leads the hospital’s self-help group for youth.

On a Sunday afternoon in September, she talks to a group of teens in Dr. Joe’s office. One girl is worried about contaminating others with HIV, but Nanou assures her that it’s safe to eat with friends.

She asks each of the teens who they have told about their status. “You don’t have to tell anyone,” she counsels the youngest. “It’s a secret between you and your family.” But to the oldest, she says, “You must tell your girlfriend the truth.”

To all of them she says, “Have courage. You have the right to live.”

Sex, marriage, and insomnia

Part of living is love and sex. ProVICplus-trained health providers and peer educators counsel young women in the importance of assertiveness in negotiating safe sex.

Nanou dropped a boyfriend who demanded sex. Her current boyfriend is comfortable with her status and has even proposed to her. Nanou says she loves him, but she is hesitating. “It’s a big decision,” she says.

Meanwhile she has other concerns. Her father, now 69, no longer works, and food remains scarce. Her uncle pays her school fees, but erratically, and she worries she won’t be able to complete her degree.

Dr. Joe worries, too. “I’m afraid these girls will end up pregnant or in the street,” he says. “We found them very sick. We brought them to health and got them in school, but then what? It gives me insomnia.”

Creating a safe space for girls

A woman in a white blouse stands behind a young girl in a ruffled pink shirt.

By focusing on the unique needs of girls, we’re nurturing healthy and confident women—the key to healthy and strong communities. Photo: PATH/Georgina Goodwin.

PATH’s goal is for all young women to be self-confident and successful. In Kenya, where we’re implementing the DREAMS initiative, we’re empowering girls and reducing HIV infection through such activities as literacy programs and rights-awareness held in youth-friendly safe spaces.

We’re now creating similar safe spaces in the DRC. Youngsters can get family planning services and testing for HIV and other sexually transmitted infections in private, and peer educators like Nanou can talk with them openly about their reproductive health.

“We have many problems,” concludes Dr. Joe, “but there are also many solutions.”