Treating HIV in the refugee settlements of northern Uganda

ARUA, UGANDA — Less than a year after its official opening in August 2016, the Bidi Bidi encampment in the Yumbe district of Uganda became the largest refugee settlement in the world. Main roads, health centers and base camps there are flooded with displaced South Sudanese. As far as the eye can see, little, white makeshift shelters are spread across the dense scrub land in almost every direction.

The number of people registered at Bidi Bidi is now over 270,000.

The ongoing civil war in South Sudan drives more than 1,000 refugees across the Ugandan border every day, the vast majority of them women and children. While the settlement is officially at maximum capacity, the number is still expected to increase as refugees move from one settlement to another in search of their separated family members.

With over a quarter of a million people coming to inhabit such a large space in such a small amount of time, one could expect the management of the needs of those people to be somewhat strained, like it is at the similarly sized Dadaab refugee camp in Eastern Kenya, especially when it comes to something as commitment-necessary as HIV (Human Immunodeficiency Virus) testing and treatment.

Two South Sudanese teenagers wait patiently in line to see a doctor in the Zone 1 central health center at the Bidi Bidi refugee settlement. (Photos by Nick Trombola / The Media School)

Yet despite these challenges, the United Nations High Commission for Refugees (UNHCR) and its 17 partner organizations have seemingly progressed well when it comes to HIV care in the massive settlement. Health centers are almost constantly full of people seeking care for everything from malaria to syphilis, but there were only 457 registered HIV patients in Bidi Bidi’s clinics as of May 2017.

According to the Head of the Antiretroviral Treatment clinic at Bidi Bidi, Akidi Doreen, those patients receive weekly doses of antiretroviral medications (ARVs), which prevent further growth of the virus in the immune system. They are also given consultations before and after diagnosis and priority emergency treatment for opportunistic infections like pneumonia and tuberculosis (TB).

“None of our health facilities here at Bidi Bidi are authorized to be considered full HIV clinics because of lacking infrastructure due to budget constraints, but I believe we do the best work we can with the resources we have available to us,” Doreen said.

A shortage of funding

As per the UNHCR however, the available HIV treatment is quite good for those who know they are positive, but testing is still only required for a relatively small number of refugees. Jedah Twebaze, HIV specialist at the Yinka Health Center at Imvepi, another refugee settlement about one hour south of Bidi Bidi, believes that the rate of HIV in the settlements is much higher than the official numbers suggest.

“The number of people living with HIV in South Sudan is difficult to determine because of the huge numbers of displaced and missing people, but UNAIDS [ the Joint United Nations Program on HIV/AIDS] roughly estimates a prevalence rate of somewhere between three to five percent,” Twebaze said. “So, the number of HIV positive people in our settlements is most probably much higher than we’ve already seen.”

The reason for the lack of testing ultimately comes down to insufficient funding. Only 40 percent of the UNHCR’s planned 2017 Uganda budget (more than half of which was donated by the United States) has actually been utilized in Uganda, chiefly due to emergencies in the other refugee crises in Syria and Myanmar. This means that prioritization of funds is critically important.

Highest priority is placed on life-saving activities and fundamental needs, such as food and water distribution, health care services and primary education for children. Long-term projects, such as lasting sustainable income for refugees and more durable shelters, are lower on the priority list. But according to Peter Muriuki, acting UNHCR director in Arua, which is the closest major city to Bidi Bidi, exact priorities vary from community to community within the settlements.

“Because of a lacking budget, we send representatives to all of the villages and communities that have formed to ask what they need directly,” Muriuki said. “Not only that, but we try to engage with the different social groups in those communities, pertaining to ethnic diversity, age and gender, to find what those particular people are looking for. For example, one community with a high rate of people with malaria might ask for more malaria testing, while another with a higher than average number of pregnant women might ask for more pre-natal consultation.”

Out of sight, out of mind

HIV testing however remains constantly low on such lists.

Stigma against those who are HIV positive still influences peoples’ willingness to get tested, but the fact that HIV can lie dormant for up to a decade tends to put the priority of testing even more on the backburner, especially for displaced people with more immediate needs.

The mandatory health screenings for all new-arrivals at the settlements test for diseases like malaria and TB, sometimes several hundred in a single day, but an HIV test has never been required. In fact, most of the registered HIV positive refugees already knew their status before leaving South Sudan and carried their ARV prescriptions with them into Uganda.

South Sudanese children wait to get their blood drawn from a Real Medicine Foundation (RMF) health worker in the Zone 1 central health center at the Bidi Bidi refugee settlement.

HIV testing is only required for those who come to health centers at later dates, seeking emergency care for serious injuries, extreme cases of debilitating diseases like malaria, or for new mothers.

Other major refugee settlements in the area face similar budget constraints and, due to a lack of mandatory testing, see similar numbers of HIV positive people. The Imvepi settlement hosts only 165 registered people living with HIV out of a population of 103,000, and the Palorinya settlement in the neighboring Moyo district hosts fewer than 200 out of 135,000.

Even so, the mortality rate of refugees due to HIV related illnesses in these settlements is low. Only three people each from Imvepi, Bidi Bidi and Paloryina have died from opportunistic infections, all from either TB or severe cases of pneumonia. While there have been many more similar life-threatening cases, most people are referred to superior hospital care in either Arua or even Kampala, the capital city of Uganda, if their disease progresses beyond the care that can be offered at the settlements. The nine who have died had either extreme or unique conditions.

“No sign of it stopping anytime soon”

Aside from opportunistic infections, the most pressing problems refugee health centers face regarding HIV are issues of malnutrition. Because of diminishing food rations, malnourishment is such an extensive problem in Bidi Bidi that an entire section of the central health center has been dedicated to it. Inside, dozens of children with bloated stomachs due to water retention await insufficient treatment.

A malnourished child sits in his mother’s lap in the Zone 1 central health center at the Bidi Bidi refugee settlement.

Although food distribution is a top priority, the UNHCR’s budget constraints have limited rations per person and, especially at large settlements, the portions have begun to dwindle. Refugees at Bidi Bidi are only given six kilograms of posho (firm, white cornmeal mush), six kilogram of beans and just a few grams of vegetable oil and salt per person, per month.

This is half of the original amount given when the settlement first opened. The only meat, fruit or vegetables available are those that people cultivate themselves, an especially difficult task given the current drought in East Africa.

“We have 270 people living with HIV in Zone 1 at Bidi Bidi, and 21 of those are children below 18,” Doreen said. “Children require greater nutrition as they grow, so the portions we have to give to them just aren’t enough. Add on top of that that the side-effects of ARVs increase without proper nutrition, and it sometimes makes taking medication very problematic.”

While malnutrition may be the most pressing issue settlement staffs are encountering, the number of problems in health and HIV management among refugees will almost certainly continue to rise. With the ongoing conflict in South Sudan, and now the widespread famine beginning to grip East Africa, thousands of more refugees are expected to flow into Uganda in the foreseeable future.

“At the beginning of the year, the UN planned for about 400,000 refugees to come to Uganda in 2017, but as of last month we’re almost past 300,000,” UNHCR-Kampala communications officer, Rocco Nuri said. “That brings the total number of South Sudanese refugees alone to almost 1 million in less than three years. And there’s no sign of it stopping anytime soon.”