Why This AIDS Champion Is Conflicted About World AIDS Day

Twesigye Jackson Kaguri, in the blue t-shirt on the roof, helps build a home for a grandmother supported by his HIV/AIDS nonprofit in rural Uganda. Matt Stauble hide caption

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Matt Stauble

When Twesigye Jackson Kaguri started a HIV/AIDS nonprofit in his native Uganda 2001, he didn’t know what World AIDS Day was.

Then December 1 came around, and he quickly figured it out.

Other AIDS groups were organizing walks, marches and fundraisers on December 1. They were raising money and raising awareness. So he thought to himself: “Oh my God, we are missing out.” Should his group, Nyaka AIDS Orphans Project, join in, too?

All these years later, his answer is yes … but with doubts about the day itself and the public reaction to it.

Kaguri has come to see that the U.N.-mandated event is a good way to raise the profile of a disease that affects 36.7 million people globally. His group usually uses World AIDS Day to raise extra donations by sharing the stories of the people they support.

“What is frustrating is that people only think about the issue for just one day, then go on to something else,” he says. “Someone will give us a $50 check on World AIDS Day and think that they saved the world … until another World AIDS Day comes along.”

Nyaka provides free education to children who have lost one or both parents to HIV/AIDS. Most are HIV positive. They also support the grandmothers who care for them by providing free HIV/AIDS medication and small loans — and in some cases, they’ll even build them a home.

Global Giving, a fundraising platform, has been raising money on behalf of Nyaka for over a decade. “We have visited the schools, clinics and homes of the grandmothers who care for the AIDS orphans,” says Mari Kuraishi, cofounder and president of Global Giving. “They’re a superstar organization, and we feel confident of what Kaguri is doing on the ground.”

Kaguri was named a CNN Hero in 2012, gave a TED Talk about his nonprofit in 2013, and is the author of “A School for My Village,” a book about his work with Nyaka. In an interview with NPR, he reflects on World AIDS Day, the power of marketing and his admiration for Magic Johnson, the HIV-positive basketball legend who runs a foundation in support of HIV/AIDS awareness. Kaguri is based in East Lansing, Michigan.

This interview has been edited for length and clarity.

For you, HIV/AIDS is a personal issue.

My brother died of HIV/AIDS in 1996 at 47 years old, and my sister in 1997. She was 45. They didn’t have access to antiretroviral drugs in Uganda, which is why they died. I live in Michigan, where Magic Johnson comes from. He contracted HIV/AIDS around the same time my brother did. But because my brother didn’t have access to treatment, within four years, he passed away.

And this inspired you to start Nyaka.

As a result of their deaths, my eyes were opened to all the HIV-positive children whose parents were dying of HIV/AIDS in my hometown, Nyakagyezi, Uganda. We now have three schools for 800 mostly HIV-positive orphans. And we provide treatment and support to 7,314 mothers and grandmothers in the community.

We give meds to HIV-positive people across the region as long as they can make it to our clinic. We get meds free of charge from PEPFAR and the Clinton Foundation. We also have 7,000 motorcycles to bring medications to your home if you live in the deep, rural areas of Uganda.

This is the 29th year for World AIDS Day. Do you still think it has a value?

Some people don’t talk about HIV/AIDS until World AIDS Day. It’s still a time when we get attention from the federal government. And it’s a time when small communities that don’t normally talk about HIV/AIDS can begin to talk about it.

Many countries still don’t talk about infection rates in their countries. South Africa [where 19 percent of the adult population is HIV-positive] still has leadership that denies HIV/AIDS is a problem, like former president Thabo Mbeki. And [in 2006, former president] Jacob Zuma was caught sleeping with a prostitute. When they asked him if he was worried about contracting HIV/AIDS, he said, “Oh no, I took a shower after we had sex.” The country has put a blanket over its head when it comes to HIV/AIDS.

And what about people with AIDS. The money raised on World AIDS Day helps them, but do they even know there is such a day?

The people in Nepal, in India, in Nicaragua who are dying [of AIDS] every day, they have no idea what World AIDS day means.

Are there any down sides to World AIDS Day?

For a small organization run by one person in Uganda, who may not have access to technology or information, they will not be aware of World AIDS Day and how to take advantage of it. World AIDS Day leaves out completely those without access to technology and information.

But for those of us who have access, World AIDS Day can be an asset.

Do you think World AIDS Day brings enough attention to the disease?

No. I was just talking to my wife about this. World AIDS Day doesn’t have a big platform like cancer. And more people die of HIV/AIDS around the world than cancer. The month of October is dedicated to breast cancer awareness. You see big NFL players wearing pink. Delta puts pink ribbons on their airplanes. It has big corporate sponsors like Pepsi. My wife told me: “You guys have got to do a better job of marketing.”

Marketing! Donors often criticize nonprofits for spending too much on that.

For many years, we didn’t have a marketing budget. We always said: you can’t spend money on marketing when children are dying on the ground.

But 16 years later, we realized that if we don’t spend marketing money, we cannot reach more people. Part of our plan in 2018 is involving a marketing program in our nonprofit for the first time. Our World AIDS Day 2018 will be much bigger.

So overall the day has been a boost for your group?

It depends on how much effort we put into building momentum toward that day. Some years have been flat, some years have been bigger. The truth is, when we put dollars behind World AIDS Day, it pays back.

What would a perfect World AIDS Day look like?

In a perfect world, all the media outlets would cover it and talk about how the disease is treatable, show ways people can [show] support. There will be basketball games on December 1 — in honor of Magic Johnson — and everyone would wear a red ribbon.

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