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HIV Treatment Keeps A Family Together And Growing In Kenya
Originally published on Thu December 19, 2013 3:17 pm
Daniel and Benta Odeny married late by African standards: Both were in their 30s. And they'd only just hit their third anniversary when Benta started coughing blood.
The cough lasted a couple of weeks. So Benta went to the doctor. She had HIV. But Daniel was still HIV negative.
"She thought it was the end of the world," Daniel says.
Benta thought that Daniel would leave her and she would die alone. She had seen it happen many times to other women in her situation.
Benta and Daniel live near Lake Victoria in Kenya, a region that has one of the highest HIV rates in the country. More than 1 in 6 people are infected with the virus.
But times have changed in Kenya in the past few years. In particular, HIV drugs are now vastly more accessible in the country, in large part because of a U.S.-funded initiative aimed at fighting AIDS around the world.
Over the past decade, the President's Emergency Plan for AIDS Relief, or PEPFAR, has invested billions of dollars to treat HIV-positive people in developing countries. In 2013, the initiative spent $529 million in Kenya alone.
So when Benta told her husband Daniel about her status, he could reasonably say, "This isn't the end."
"I told her, 'No, don't even bother thinking where you got the virus,' " Daniel says. " 'Be focused. You have a future. Work toward that.' "
"So that means that I have to protect him," Benta says. "And he also can protect me."
And protection doesn't just mean condoms. Benta can also protect her husband by taking antiviral medications.
"What we've learned is that treatment is effective prevention," says Dr. Kevin De Cock, who directs the global health program at the U.S. Centers for Disease Control and Prevention.
As long as an HIV-positive person suppresses the virus in their immune system with medication, De Cock says, he or she has little chance of spreading the disease — even through unprotected sex. "We know that the risk of transmission is infinitesimally small," he says.
Still though, most health workers are cautious about telling couples to throw away the condoms. "Most people would say, 'Well, other things can happen: Adherence isn't always perfect et cetera,' " he says. "But in truth, the risk of transmission is greatly, greatly reduced [with medication]."
Studies, both in the lab and out in real communities, have supported this idea. PEPFAR funded many of these studies, De Cock says.
"The overriding aim of the PEPFAR program is to achieve an AIDS-free generation," De Cock says.
Many health researchers always thought that the road to no new HIV infections would be forged through the long slog of culture change.
But science has suggested a potentially shorter path: Getting millions more HIV-positive Africans on HIV drugs.
Couples like Benta and Daniel, where one is positive and the other is not, are critical to this strategy. There's even a special term for these couples — discordant.
Medical workers are extremely interested in discordant couples for two reasons. One is that almost half of new infections in Kenya happen in these relationships. It's one place where HIV is spreading.
The second reason is that when couples are open with each other about their HIV status, managing HIV is more successful.
That was the case with Daniel and Benta.
After Benta's diagnosis, Daniel started calling her up from work to remind her to take her pills. Benta not only got her health back, she got something she and Daniel always wanted: a daughter.
With the help of prenatal counseling and HIV treatment, Benta gave birth to a healthy, HIV-negative daughter four years ago.
Increasingly, Benta is what health workers hope for as the new face of AIDS in Africa: An HIV-positive person living happily with her HIV-negative spouse and child.
The World Health Organization now recommends that any HIV-positive individual in a discordant relationship be supplied HIV treatment.
But discordant couples are still being treated on an ad hoc basis in Kenya, primarily because the funding for the medication just isn't there.
Making it official policy to treat thousands more HIV-positive people to protect all their spouses is going to take a lot more money. And the U.S. government and PEPFAR aren't offering it up anytime soon.
"We don't know what's coming for 2014" in terms of funding, says Katherine Perry, who coordinates PEPFAR's efforts in Kenya. "We haven't been given our funding level, but we are definitely not receiving more money."
The question of which Africans get treatment isn't just a medical one, she says. It's a resource issue.
"In the U.S., anybody who is HIV positive, they're going to go on treatment," Perry says. "Here in Africa, it's very different."
In Africa, the American taxpayer is largely paying for it. And now it's unclear just how much the U.S. is going to pay going forward.
U.S. officials have said that now it's time for African governments to start picking up the slack. Kenya, for example, only pays for 2 percent of their more than $500 million AIDS budget.
Informally, the Kenyan government has indicated they will make it a policy to treat discordant couples. But it's unclear when that will start or where the money will come from.
"It's a big move," Perry says. "And of course Kenya, like all countries, would like to adopt these guidelines. It may be a staged approach."
AUDIE CORNISH, HOST:
From NPR News, this is ALL THINGS CONSIDERED. I'm Audie Cornish.
MELISSA BLOCK, HOST:
And I'm Melissa Block.
This week, we're revisiting PEPFAR, the President's Emergency Plan For AIDS Relief, first introduced by President Bush in 2003. It's the largest public health initiative ever undertaken to combat a single disease; more than $50 billion of federal money spent over the past decade. Ask just about anyone and they'll tell you the program has been transformative. And yet, the challenges ahead are enormous.
DAVID WILSON: I think one of our greatest concerns is, in many ways, PEPFAR and the AIDS response is partly a victim of its success.
BLOCK: That's David Wilson. He directs the World Bank's Global AIDS Program.
WILSON: Because HIV is no longer a fatal disease, because it's a manageable condition; because programs are working well, the urgency is removed.
BLOCK: He says the emergency phase may be over but it's crucial that work continues. To understand why, consider these numbers. The spread of HIV has slowed but there are still more than two million new infections every year. The number of people with access to antiretroviral drugs, or ARVs, has hit an all-time high, nearly 10 million. But the number of people who should be offered those drugs is 28 million, according to new guidelines out this year from the World Health Organization. That's almost double the recommendation in previous guidelines.
Amanda Glassman, of the Center for Global Development, tracks spending on HIV-AIDS.
AMANDA GLASSMAN: I would definitely say it's aspirational at this point. We don't have the money at this moment to get from here to there.
BLOCK: And that's despite the fact that the price of ARVs has dropped dramatically since the 1990s, from a thousand dollars a month to roughly $100 dollars a year. One reason for the new target is that researchers have discovered that ARVs not only helps people live with HIV, they can stop the virus from spreading. They want to see more people on drugs a lot earlier and for life. But who's going to pay for that?
NPR's East Africa correspondent Gregory Warner explores how that question is playing out in Kenya.
GREGORY WARNER, BYLINE: Benta and Daniel Odeny married late by local standards, they were both in their 30's. And they'd only just hit their third anniversary when Benta started coughing blood.
DANIEL ODENY: Coughs which lasted for a couple of weeks. She was tested and diagnosed HIV-positive.
WARNER: But Daniel was still HIV-negative.
ODENY: She thought it was the end of the world.
WARNER: Because she had seen this situation before.
BENTA ODENY: I was expecting that he may be denied me.
WARNER: That he would leave you.
ODENY: Yeah. Nothing I could say. The last thing to think is to die.
WARNER: You mean you thought he would leave you and you would die.
WARNER: The region where Benta and Daniel live, on the edge of the great Lake Victoria in Kenya, has one of the highest HIV-prevalence rates in the country, more than 1-in-6. And AIDS advocates have been working to change behaviors here for years. There's been condom campaigns and circumcision campaigns and economic empowerment efforts to make women less vulnerable to the male-dominated trucking and fishing industries.
But while these efforts are underway, another change has been taking place, thanks to PEPFAR. Treatment drugs are vastly more accessible. So when Benta told her husband Daniel about her status, he could reasonably say, this isn't the end of us.
ODENY: And I said no, don't even bother thinking where you got the virus. Be focused. You have a future, work towards that.
ODENY: So that it means that I have to protect him and he also can protect me.
WARNER: And protection doesn't just mean condoms. Science shows that Benta is protecting her husband by taking her medication.
KEVIN DECOCK: What we've learned is that treatment is effective prevention.
WARNER: Kevin DeCock is director of the CDC's Center for Global Health. He says as long as an HIV-positive person suppresses the virus with medication, he or she has little chance of spreading the disease, even through unprotected sex.
DECOCK: Most people would say, well, other things can happen, adherence isn't always perfect, et cetera, et cetera. But in truth, the risk of transmission is, you know, greatly, greatly reduced.
WARNER: Scientists know this thanks to a multi-site randomized study financed largely by PEPFAR. Not only has PEPFAR saved millions of lives, it also helped fund the research that's shown a way to reduce new infections medically.
DECOCK: You know, the overriding aim of the PEPFAR program is to achieve an AIDS-free generation.
WARNER: It was always believed that the road to no new infections would be forged through the long slog of cultural change and safer sex. But science may suggest a shorter path. A world with fewer new transmissions starts with getting millions more HIV-positive Africans on therapy, especially couples like Benta and Daniel, where one is positive and the other is not. There's even a special term for these couples. They're called Serodiscordant.
Daniel says he wants to be a model for others like them.
ODENY: Discordant couples can live together and live happily.
WARNER: Discordant, do you like that name discordant?
ODENY: It's an English vocabulary word. We have nothing against it.
WARNER: I tell Daniel that most native English speakers may not have heard the word. But medical professionals are extremely interested in discordant couples for two reasons. One is that almost half of new infections in Kenya happen in these relationships. This is one place where HIV is spreading.
But the second reason is that when couples are open with each other, managing HIV is much more successful. Daniel will call her up from work to remind her to take her pills. And Benta has not only got her health back, she got something that she and Daniel always wanted.
Angelia, can I ask you how old you are?
A daughter, Angelia, she had with pre-natal counseling.
ANGELIA ODENY: Four.
ODENY: That means four years.
ODENY: Four years.
WARNER: Increasingly, this is what advocates hope for, that the new face of AIDS in Africa: An HIV-positive person living happily with her HIV-negative spouse and child.
The WHO, the World Health Organization, is now recommending that anyone in a discordant relationship be supplied with HIV treatment. But despite this recommendation, discordant couples are still being treated on an ad hoc basis in Kenya. And that's because making an official policy to treat thousands more Bentas, to protect all the Daniels, is going to take a lot more money that PEPFAR is not offering up.
Katherine Perry is the PEPFAR coordinator for Kenya.
KATHERINE PERRY: We don't know what's coming for '14. We haven't been given our funding level but we are definitely not receiving more money.
WARNER: The question of which Africans get treatment isn't just a medical one, she says. It's a resource issue.
PERRY: In the U.S., anyone who is HIV-positive, they're going to automatically go on treatment. Where here, in Africa, it's very different.
WARNER: Because in Africa, the American taxpayer is largely paying for it. And U.S. officials have said that now it's time for African governments to start picking up the slack. Kenya, for example, only pays for two percent of its more than half a billion dollar AIDS budget. Informally, the Kenyan government has indicated they will make it a policy - sometime next year - to treat discordant couples. But it's unclear when that will start or where the money will come from.
PERRY: It's a big move. Kenya, like all countries, would like to adopt these guidelines. It may be a staged approach.
WARNER: Esther Odhiambo is HIV-positive and she counsels kids who were born positive.
ESTHER ODHIAMBO: It's a bit tricky for girls. They ask us, will I get a husband. Will I be able to marry? But we tell them, if somebody likes you, he will love you whether you're negative or you're positive.
WARNER: But do you believe that?
ODHIAMBO: Yes, they will. They will marry.
WARNER: Widespread acceptance, she says, will come hand-in-hand with widespread treatment. As the mother of a 10-year-old living with HIV, she has no choice but to believe that that's coming soon.
Gregory Warner, NPR News, Nairobi. Transcript provided by NPR, Copyright NPR.