School of Journalism

Living positively with HIV for 17 years

Story and photos by Deanna Allbrittin

Reporting by Deanna Allbrittin and Jael Oyioka

ELDORET, KENYA — “I thought I would die,” said Christene Kitale as she sat in a chair outside of her small mud hut in rural Kenya. “I thought it was the end of everything. I lost hope in my life.”

When Christene tested HIV-positive 17 years ago, she was like thousands of other Kenyans who had a diagnosis, but little hope of effective treatment.

 In the 1996, the year of Christene’s diagnosis, a 12-month supply of first-line ART cost about $20,000. A more than $200 billion commitment from the developed world would have been required to treat the estimated 20 million people then living with HIV in Sub-Saharan Africa. This was money most countries, including the US, were unwilling to hand over, especially because many were convinced Africans would be unable to maintain the strict daily ART dosing regimen.

 So like millions of others, Christene’s positive diagnosis was essentially a death sentence. And when she became pregnant two years later, no intervention was taken to prevent transmission of HIV to her child during birth.

 Among mothers who are not on ART, about 40 percent of their babies contract the virus—15 percent via breastfeeding and 25 percent during delivery.

Shortly after birth, Christene’s baby girl tested positive.

“[When] I gave birth to that child, they were not serious about it,” Christene said. “They were not even testing. It was very expensive. They didn’t know to…” Christene trailed off and looked down at her fingers. “In 1998, they just didn’t know.”

What the doctors who diagnosed Christine didn’t know was that there were already numerous ways to prevent transmission from mother to child. Halfway across the world in America and Western Europe, doctors dealing with HIV-positive mothers were performing Cesarean delivery and mothers were formula feeding, bringing the rate of mother-to-child infection to almost zero.

Today, while economic barriers prevent doctors in Kenya from utilizing these exact techniques, there is an entire medical department in Eldoret, Kenya’s fifth largest city, dedicated to other means of preventing HIV transmission from mother to child.

HIV-positive pregnant mothers not only receive counseling, but also other kinds of support aimed at maintaining income security and food security for patients of various ages—all through a program called the Academic Model for Prevention and Access to Healthcare (AMPATH).

AMPATH is a partnership between the Indiana University School of Medicine and Kenya’s Moi University School of Medicine, originally established in 2001 as the Academic Model for Prevention and Treatment of HIV/AIDS.

In 2003,U.S. President George W. Bush created the President’s Emergency Plan for Emergency AIDS Relief (PEPFAR). At the time, much of the developed world strongly opposed the use of costly antiretroviral drug therapy (ART) to treat HIV-positive patients in Africa.

AMPATH was one of the first programs in Africa to treat with ART. It created a comprehensive set of projects designed to address the overwhelming need for a wide scale prevention and treatment effort to stop the epidemic from wiping out two whole generations of Kenyans—parents and their children.

A MOTHER AND HER BABY

AMPATH had a presence in Mary’s life long before her four-month-old daughter was born.

[Editor’s Note: Mary’s last name has been withheld to protect her identity.]

Mary is an AMPATH patient and she is HIV-positive.

Mary's four-month-old baby sleeps after her mother's first appointment as an AMPATH formula recipient. She was recently retested for HIV. She is negative.

Mary’s four-month-old baby sleeps after her mother’s first appointment as an AMPATH formula recipient. She was recently retested for HIV. She is negative.

Before contracting the virus sometime about 2008, Mary gave birth to two healthy children whom she breastfed exclusively. Soon after the birth of her third child, Mary found herself at the hospital again.

“I began to get sick,” Mary said. “Then I went to the hospital. They told me, ‘We want to test you.’ When they tested, they found me pregnant again—six months—and the baby was small.”

This was Mary’s fourth pregnancy, but this time, everything was different.

“They said, ‘You have to test for HIV,’” Mary said as she slowly remembered the events. “They tested and they found that I was positive.”

They started Mary on ART and immediately tested her third child, then only six months old. They tested him again and again until five years old. At his final test, the results were still negative.

Shortly after her HIV diagnosis, Mary also developed high blood pressure. Her fourth child died before he made it home.

Mary began taking blood pressure medication in addition to her daily regimen of ARVs. With this combination, Mary says she lived a normal, happy life. It wasn’t until after her fifth child was born that life became challenging again.

“I was asked to breastfeed [exclusively] for six months,” Mary said. “I accepted, but because of taking medication for high blood pressure—it cut off my milk.”

Consequently, Mary was unable to begin breastfeeding her last child. She said her husband was happy because he had always worried about the risk of transmitting the virus to her baby.

“I remember when I was pregnant, he used to tell me, ‘You should not breastfeed the baby,’” Mary said. “He wanted me to stay off so the baby may be OK.”

Among HIV-positive mothers on ART, about two percent of their breastfed infants will contract the virus.

While the choice between formula feeding and risking infection by breastfeeding may seem simple in the West, the decision is more nuanced in Kenya. Here, women who choose not to breastfeed often endure stigma in their communities.

“When some women see you with tins [of formula], they think obviously you are HIV-positive,” Mary said.

Mary, with her high blood pressure, has a convenient excuse for prying relatives or friends who ask her why she is breastfeeding. But AMPATH nutritionist Annaliza Nyambane said that for many others, the stigma is sufficient to make many HIV-positive women still choose to breastfeed, despite the known risks to their babies.

This stigma is part of the reason why AMPATH doctors and nutritionists continue to recommend that HIV-positive mothers breastfeed.

Their other reason is purely economic.

A tin of formula costs around 850 Kenyan shillings, or $10. For Mary, that meant around $10 a week during her baby’s first month and around $30 a week at four months old. In a country where 43 percent of the population lives on less than $1.25 a day and 67 percent live on less than $2 a day, formula is an expense few can afford. Mary and her husband struggled to keep up.

Mary packs her daughter's formula into the baby bag. The formula, which used to cost Mary's family $30 a month, is now free under the AMPATH free formula program.

Mary packs her daughter’s formula into the baby bag. The formula, which used to cost Mary’s family $30 a month, is now free under the AMPATH free formula program.

“It was very costly because we have other children and my husband does not have a permanent job,” Mary said. “Sometimes he goes and finds money, sometimes he doesn’t. So [sometimes] we have to not eat because the baby has to get her milk.”

Mary went on to recount the worst of the days.

“I remember one day, the father could not get the money and [relatives] said they didn’t have money. So I was remaining with four scoops that afternoon and throughout the night the baby wanted to get milk. I remember, the father did not come home because he had to go and hustle where he can get the money and come back with that tin.”

The baby became so hungry that Mary decided to risk ignoring medical advice given by AMPATH to either exclusively formula feed or breastfeed.

“That night I remember I gave the baby cow milk, but thank God it went well with her,” Mary said. “When he brought the tin we continued again [with exclusive formula feeding].”

Those risky days are over, for now. Due to an end in a formula supply shortage, more clients, including Mary, have recently been added to AMPATH’s free formula program. The program is reserved for caretakers of orphaned children and mothers like Mary with conditions that leave them unable to breastfeed. When Mary gave birth four months ago, the program had been reduced to just three caretakers and mothers.

Mary has been receiving the free formula for just a week and already feels a difference in her emotional state.

“I was very happy because I felt like something went off of me—a burden,” she said.

Mary is one of the lucky ones because when Christene gave birth to her daughter, the choice did not exist. 

Choices did not exist because AMPATH did not exist.

AMPATH FARMS

Today, AMPATH is a constant presence in Christene’s life. She is a patient and also a member of one of the 400 AMPATH-supported agribusiness-training groups.

Called kubali groups, they consist of AMPATH clients in a particular area with interest in learning how to farm more efficiently.

The kubali groups are primarily supported by the Family Preservation Initiative (FPI), a consortium of AMPATH departments—Nutrition, Social Work and Agribusiness. FPI provides financial and educational support to AMPATH clients and their family members who are malnourished or impoverished.

Naman Nybinda, AMPATH’s Agribusiness Manager, teaches many of the groups himself, educating them on various aspects of the farming process.

“We train them on seven modules on how to handle African leaf vegetables, from the seed acquisition to the market, and how to produce seeds,” he said. 

Creating different trainings and tailoring them to the needs and abilities of AMPATH clients is the most difficult part of the job, Naman said.

“Remember, we are working with a very vulnerable community,” Naman said. “When you go to the families, you will get somebody who has been sick for a number of years and is not in a position to do tough work.”

This client support structure was initially established when doctors were faced with the problem of HIV-positive patients taking ARVs whose recovery was stymied by lack of adequate nutrition..

“When AMPATH started, we were giving ARVs, but ARVs could not work alone,” Naman said. “We realized there was something missing, so the food component was [taken care of] by the World Food Program (WFP).”

Margaret Nasimiyu carries her 3 kilo bag of food from the Food Distribution Center. She is new to AMPATH's nutrition program. While the WFP does still help AMPATH provide some support for Margaret and others needing nutrition assistance, AMPATH is no longer able to provide for Margaret's dependents as they would have in the past.

Margaret Nasimiyu carries her 3 kilo bag of food from the Food Distribution Center. She is new to AMPATH’s nutrition program. While the WFP does still help AMPATH provide some support for Margaret and others needing nutrition assistance, AMPATH is no longer able to provide for Margaret’s dependents as they would have in the past.

For years, AMPATH worked with the WFP to provide vegetables, cooking oil, corn and other grains for both the AMPATH client as well as for the client’s immediate family members. Feeding family members was essential to treating HIV-positive parents, who would not let their children go hungry when given food from AMPATH. Through the partnership, AMPATH was able to serve 30,000 clients and their dependents weekly for several years. The relationship ended abruptly late last year.

“All along the WFP has been supplying our patients with food,” Naman said. “But now it has reached a point that they are pulling out because they have demand in other places.”

The WFP still supplies some food in the form of a corn-soy flour blend, but not nearly at the level it used to. During a tour of the food distribution warehouse, Distribution Manager Beatrice Kerubo pointed to the 10 empty [DIMENSION] rooms that used to be packed with parcels.

The WFP pullout was the impetus for AMPATH strengthening its support of agribusiness groups.

Food Security Thumbnail Link Click to see the many ways AMPATH is helping
 patients maintain food security and how their
 agribusiness groups are nourishing stomachs and
 healing minds

“We decided to come up with a strategy whereby we did not just leave our patients [when the food ran out],” Naman said. “Because if they are taking drugs and there is no food, they will go back to the former state where they started from.”

That state of malnutrition and hunger is exactly where Christene has been determined not to go since joining the group three years ago.

“[My husband] has been having health problems for so many years,” Christene said. “Since 1996, so he cannot be subjected to strenuous work. That is why he cannot produce enough food for us.”

Christene said she’s applied the lessons she’s learned about crop rotation and homemade fertilizers to her family farm; despite its small size, it’s helping.

“It has helped me to sometimes sell those vegetables and then use that money to buy other things lacking at the house,” Christene said.

The kubali groups also teach the business side of farming, showing members how to keep records, track sales and balance their books. But Christene said more important than the farming and business training is how the group has helped her learn to be more open about her HIV-positive status—no small feat for someone who spent a decade in denial about her diagnosis.

“It has made me to be courageous when I met everyone there who has accepted,” Christene said with a smile. “I don’t feel as if I’m [alone].”

INCREASING CLIENT INCOMES

This is not unique to the kubali groups. Ruth Wanjiku, a social worker with FPI, said all of their training groups serve as support groups in every sense. Ruth travels to Group Integrated Savings for Empowerment (GISE) groups in and around Eldoret, helping lead new groups and guide seasoned groups. 

AMPATH-supported GISE groups consist of 10-30 AMPATH patients in a community who gather weekly or biweekly to contribute money to a communal savings pot. The savings pot is split into two types of funds—savings and social. The savings fund is also the pool for loans.

Naman said there are many advantages to communal loan systems such as this.

“They can now access loans among themselves as opposed to going to the bank and getting loan,” Naman said.

Naman said the bank is often not an option because of the high interest rates that puts bank loans out of reach for the average Kenyan.

According to the Rwandan newspaper, The New Times, Kenyan banks dropped their lending rates in July of 2012. But the lowest rate available to ordinary Kenyans is still 21 percent. By comparison, the current US lending rate average is between seven and eight percent. 

Thus, the GISE system allows AMPATH’s clients to access funds that were previously out of reach.

AMPATH social workers currently support almost 350 GISE groups, a 31 percent increase from 2011 and 260 percent increase from 2010, when AMPATH began the GISE group initiative.

As of April 2013, AMPATH’s 347 GISE groups had saved a total of 9,792,788KSH ($115,209), with one of the more established groups amassing 307,500KSH ($3,617) in savings and another 286,690KSH ($3,161) in profits from interest in 2012.

“When you have a business, a small business of selling vegetables or a small kiosk or shop at home, you will use that money to boost your stock,” Naman said.

That is exactly what Jane Thuku has done with the small kitchenware business she runs out of her home.

“Since I joined the group my business has been growing,” Jane said. “Previously I could not buy a large stock, but now I can buy as much as 80,000-100,000 shillings of goods.”

Among Jane’s neighbors in Langas, an Eldoret slum of several thousand people, the ability to purchase about a thousand dollars worth of goods is almost unheard of.

GISE Long Form Thumbnail Click on the icon to hear Jane tell her story.

 

 

Jane is part of an 18-person GISE, which formed three years ago when AMPATH stopped its original loan program. Through that program, Jane and others received 1,000-5,000 shillings. Just $12-$59 was enough to help many start to get back on their feet after months or years of illness prevented them from earning a steady income, if any.                  

“They used to tell us on how we could pay back once we were stable enough to start our businesses,” Jane said.

Jane Thuku shows off a newly added kitchenware item to potential clients. Since joining a GISE group three years ago, Jane has increased her stock and clientele base.

Jane Thuku shows off a newly added kitchenware item to potential clients. Since joining a GISE group three years ago, Jane has increased her stock and clientele base.

Naman, whose social workers support the GISE groups, said the new system has two major advantages over the old loan program—greater independence from AMPATH’s direct services and higher payback rates.

“If somebody comes to your house and gives you one dollar or four dollars or ten dollars or twenty dollars, within a week the dollar is gone and you are back to square one,” Naman said. “But when we come into the village and build the capacity of a person, he will embrace that concept and use it throughout his or her life.”

Not surprisingly, the high payback rates are almost entirely attributed to the “community” nature of the loan. When the people depending on a loan return are someone’s neighbors, the loan recipient is much less likely to default.

The community attribute is also what helps the GISE groups function well as support groups. Unlike Jane’s three-year-old group, others are only a few months old, with members who have not yet come to terms with their status. 

“This group is new,” said Ruth, the Family Preservation Initiative social worker. “That’s why they don’t want to be identified. They still face the stigma of their status. But the older groups? There, everyone is comfortable.”

Christene said this increasing comfort is why she encourages friends to join AMPATH support groups for the assistance in maintaining economic and food security. She also feels it is important for those like her who have accepted their status to work with others to accept theirs, because only then can they move on.

“You just have to take time and explain to them so they can cope with the situation,” Christene said with a smile. “You educate them about being HIV-positive and tell them, ‘This is not the end of your life.’”

About Deanna Allbrittin

Deanna Allbrittin is recent graduate of the Indiana University School of Journalism with a focus in broadcast journalism. She will spend the rest of the year traveling, including to Chile for her Hazeltine reporting project. Deanna eventually hopes to find a job in television news reporting.