Niger HIV community battles use of anti-retroviral drugs on empty stomachs

•Changes feeding formula from 1-0-1 to 0-1-0
•Grapples with stigma, shrinking safety net

As food prices climb faster in Niger State than in almost any other part of Nigeria, JUSTINA ASISHANA reports how the men, women and adolescents who take antiretroviral drugs every day describe a quiet crisis that official statistics rarely capture – one measured in skipped meals, missed clinic appointments and a global funding pipeline that is running dry.

In the shorthand that families in Nigeria have long used to describe how they eat, a “1” stands for a meal taken and a “0” for one skipped. For years, many households living with HIV in Niger State say they managed “1-0-1” – eating something for breakfast, nothing for lunch, something again for dinner. These days, Mrs Janet Linus Sakpe, the Niger State Coordinator of Women living with HIV and AIDs who works with the more vulnerable community of people living with HIV in the state, puts it plainly, “We are no longer doing 1-0-1. Now we are doing 0-1-0.”

One meal. Sometimes none at all, with some having no certainty about where that single meal will come from. And onto that single meal, or none, hundreds of thousands of people living with HIV in Niger State are still expected to swallow antiretroviral drugs that were designed to be taken on a full stomach.

While Niger State maintains a relatively low prevalence rate of 0.7 per cent, the lowest in the North Central zone, the human stories behind these statistics reveal a population choosing between life-saving medication and the basic necessity of food.

The strain has crept up on the state in a single year. Nationally, food inflation stood at 8.89 per cent in January 2026; by April it had jumped to 16.06 per cent, and by May it reached 16.96 per cent, outpacing the country’s overall inflation rate for the first time in eight months as staples such as tomatoes, onions, maize, garri and yam climbed in price.

Niger State felt this more sharply than almost anywhere else; in April 2026, it recorded the steepest month-on-month rise in food inflation of any state in the federation, at 8.53 per cent. For a community that already spends a disproportionate share of its income on transport to clinics, on supplements and on the extra food its treatment demands, that spike landed like a second diagnosis.

In the rural farming heartlands of Shiroro and Bida, the impact of the virus is inextricably linked to agricultural productivity and household security. Research indicates that HIV-affected farm households in Niger State experience a 30 per cent rise in medical expenditure and a simultaneous 30 per cent fall in annual income. As the virus affects people in their most productive years, the loss of manual labour leads to reduced farm output and erodes food security.

Families are often forced to adopt desperate coping strategies, such as withdrawing money from meagre savings, borrowing from relatives, or selling productive assets like land and equipment to cover health costs. This cycle of poverty is exacerbated by the fact that many rural dwellers do not deliver in hospitals, making it difficult for providers to ensure babies receive necessary ART drugs post-delivery, especially when status disclosure within the household is low.

A calculation made three times a day

Antiretroviral therapy is not simply a pill swallowed on faith. Abdulmalik Mustapha, a case manager and facility coordinator who previously served as a state coordinator for the Network of People Living with HIV and AIDS in Nigeria (NEPWHAN) and now works under the Center for Clinical Care and Clinical Research (CCCRN), explains the clinical logic bluntly that for an established patient, the drug can be taken after a meal, but that window should not stretch beyond thirty minutes to an hour.

“For them to take the drug, they find it difficult. Most of them cannot meet up to two square meals. But we let them understand that this drug, as long as you are not a new client, as an old client of ART already, you can take your drug and after, you look for food. But that after should not be more than 30 minutes or one hour. Still, they cannot afford to meet up with that time”, Mustapha said.

Skipping food does not just make the pills harder to keep down, Umar Ishak Garba, Acting Director of the Niger State Agency for the Control of AIDS (SACA), makes the same point from the clinical side as even the most potent drugs, he said, are “expected that you have eaten well” before they are taken, to avoid the harsher side effects of dosing on an empty stomach.

For Raymond Godswill, the state Coordinator for adolescents and young people living with HIV, that theory becomes very concrete in his own peer group. Teenagers and adolescents taking their medication without food, he said, sometimes feel dizzy, disoriented, “as if I’m high on something”, sensations they compare, half-joking, to the effects of illicit drugs.

It is not a small side note. Poor nutrition, he said, is pushing some young patients toward what clinicians call an unsuppressed viral load, meaning the amount of virus circulating in the blood rises because the body cannot make full use of the treatment. “You barely even see 10 per cent of a balanced diet,” he said of what adolescents in his network are actually eating, calculating that some now survive on a single meal built to last an entire day, timed around when the next dose is due.

He says some adolescents now miss doses simply because they cannot find food before the scheduled time for medication.

“Among us adolescents, what we say is that ‘these days, person no dey see balanced diet to chop, we just dey chop make we no go die yet.

“Before two years back, we could boast of eating balanced diet, at least 60 to 70 per cent balanced diet. But now, you barely even see 10 per cent of balanced diet, and you can’t compare our cravings with an adult.

“These drugs, taking them on empty stomach is just like taking Indian hemp. There are people who feel dizzy and high when taken on empty stomach.”

For adolescents, who are supposed to eat healthy and hearty, expected to take medicines in the morning, waiting, Raymond says, may mean missing doses entirely and the result can be serious.

“Imagine someone who needs to take his drugs by 8am and some households have their breakfast around 12 depending on how weather be.

“Some can eat once a day and they eat what will last for a period of time on that day so that it will help them take their drugs.

“For those taking their drugs in the morning, it is very hard. I have had to help several people with money to buy little food they can eat in the morning because they have no money.

“With this kind of economic problem, some of them find it difficult ro feed and makes a lot of them to fall under unsuppressed viral load.

“As HIV-positive patients, we are advised to take more fruits. But when you look at our economy today, you are supposed to eat with your belly full before you eat fruits.

“So, you can’t just tell a Nigerian adolescent to eat watermelon and banana and go to sleep. It doesn’t work like that when you know that tomorrow morning, you can still be on your medication and there will be no food on ground. So you cannot expect them to take something light.

“We all know that fruit is good for the body but you still need food to have the strength to run for your day to day activities. Where fruit wan use hold their belly?” he asked.

The economics behind this are stark. Janet describes families where a government casual worker takes home N15,000 to N20,000 a month and is expected to stretch it across a spouse and children.

“Multiply that by the cost of transport to a clinic that might be an hour or more away, and the arithmetic simply fails. Some people might eat once a day. Some don’t even know where their one meal is coming from,” Raymond said.

He noted that orphans and vulnerable children under the care of relatives or foster guardians are often hit hardest as some caregivers, she said, grow weary of the recurring transport costs to bring a child to appointments, and some children arrive visibly undernourished, not from neglect but from the same shortage of cash that touches every household around them.

Interrupted treatment increases the risk of viral rebound, reduces viral suppression and may eventually lead to drug resistance if repeated over time. The economic crisis, therefore, is not only threatening livelihoods, it is testing decades of progress in Nigeria’s HIV response.

Stigma that survives the science

Despite the strides in medicine, science alone cannot erase prejudice. Over a decade after Nigeria passed the HIV and AIDS Anti-Discrimination Act, stigma remains a potent, daily threat. Niger State’s own localised version of the anti-discrimination bill remains stalled in the State House of Assembly, leaving residents without automatic legal protection.

That fear is not paranoia; it is a response to a stigma the group describes as still running high across Niger State. The fear of being stigmatised has made a lot of people avoid coming to health centres to check their HIV/AIDs status while some who check would not want anyone to know about their status.

A schoolteacher (name withheld) recently resigned from a private school after her employer, who was apparently tipped off informally, demanded a medical report from her, despite having no legal standing to do so. Janet confirmed this development saying that when the case was reported, she and the NEPWAN Coordinator asked the member to bring the school proprietor for counselling but the member refused and resigned.

The Coordinators describe stigma operating at every layer of a person’s life, inside the family, inside the wider community, and, painfully, inside the health system itself, where they said the health workers who should understand the science are sometimes the ones most likely to treat a patient differently.

“It is even preferable for an outsider,” Janet said. “Maybe the person is ignorant. But this person, you are in this field. You know the ethics and you are still stigmatising,” Janet said.

The fear of stigma has led to the delay of parents telling their children who have been tested HIV positive that they have the virus; rather, they tell them the drugs they are using are because the children have tuberculosis or fever. Angela laments that self-stigma and family secrecy compound the problem disclosing to adolescents who have attempted suicide after learning their status from a parent or caregiver who had until then disguised their diagnosis.

“When parents open up and tell their children that they have the virus will help a lot because several children out there have this virus, but they don’t know, and as they grow older and become sexually active, they are at risk of transmitting it to their partners. Parents, tell your children about the virus early if they have it”, Angela said.

For adolescents, the stigma takes a distinct shape. Raymond described a girl who, sitting as the only young patient in a waiting room full of older adults, felt so exposed by their stares that she left and began demanding a dedicated space that might exist where young people could collect their drugs without that scrutiny, what health workers call a one-stop shop, or OSS.

For now, he said, no such adolescent-specific facility exists in the state, as the nearest alternative is a differentiated service delivery model that allows a nearby pharmacy or a case manager to deliver medication closer to a patient’s home. This, Raymond says, only partly solves the problem, since it still requires trusting a stranger with one’s status.

Adolescents also described hiding medication from roommates and classmates, as some go so far as to peel the label off a container so that a curious dorm-mate would not recognise or Google what the prescription is meant to treat.

“For adolescents, the crisis of stigma carries another layer of complexity. It cannot be compared to that of an adult.

“Economic hardship and social pressure are colliding in dangerous ways. Young people and adolescents already face intense pressure to fit in with their peers.

“The virus has stopped them from living the lifestyle they want to live.

“Living with HIV often means hiding medication, avoiding questions and constantly worrying that someone will discover their status.

“Many students who live with HIV refuse to carry their drugs to school because they fear classmates might see the containers.

“Some worry that their curious roommates will search online for the names printed on medicine bottles. And others delay taking their medication altogether. The youths and adolescents are particularly vulnerable”, Raymond said.

Raymond, only a little older than the people he coordinates, said many of them prefer confiding in him rather than in older case managers precisely because he shares their age bracket, which itself is a small, self-organised form of peer support built to route around a stigma the system has not yet solved.

Disclosure within marriages and relationships is similarly fraught, as several coordinators and case managers described engagements called off after a partner’s status became known, and described their own strategy of testing the waters conversationally, raising HIV as a general health topic before ever disclosing personally to gauge how a partner might react.

Due to efforts to avoid stigmatisation, Janet said several people living with HIV in the state have refused to identify with them and even take advantage of the free ARV being given at government health facilities saying that these patients purchase ARVs out-of-pocket from private pharmacies just to avoid being recognized in a government clinic queue.

Religious practice adds another layer as the stigma has infiltrated relationships and religion. Premarital HIV testing, once mostly associated with Christian weddings, has increasingly become customary before Muslim marriages too, generally around three months ahead of the ceremony.

Several of the Coordinators were candid that some people manipulate results, or find a sympathetic lab technician, to conceal a positive status from a prospective spouse and religious institution, a workaround they described uneasily, aware it undermines the very disclosure they otherwise campaign for.

Their preferred fix is not stricter enforcement but broader sensitisation, engaging pastors, imams and traditional rulers directly, so that religious leaders stop treating a positive result as grounds for automatically ending an engagement.

They argue that with proper information, discordant couples, where one partner is positive and the other is negative, can marry and have healthy, negative children.

It was also learnt that some of the development partners coming into the state to offer assistance to people living with HIV may also be promoting stigma with their insistence that every client comes with a caregiver.

“So what if they do not want to tell anybody or have a caregiver, then it means that they will not be allowed to access whatever aid is on ground. This has become a challenge that we are letting the partners know how it may drive people away from the assistance they are bringing to the state”, Angela stated.

To combat the silence, the community is demanding widespread public education, particularly through radio, which remains the most trusted medium in rural Niger State.

At the core of this messaging, they say, must be the medical consensus of Undetectable equals Untransmittable (U=U) which is the proven fact that a person on consistent treatment with a suppressed viral load cannot sexually transmit the virus to a partner.

By the numbers, Niger State is not among Nigeria’s hardest-hit. Nigeria’s 2018 national HIV/AIDS Indicator and Impact Survey, still the country’s benchmark study, put national prevalence among adults aged 15 to 65 at 1.5 per cent, with women considerably more affected than men, 1.9 per cent versus 0.9 per cent among those aged 15 to 49.

The National Agency for the Control of AIDS (NACA) more recent HIV Spectrum Estimates put Niger State’s caseload at 29,756 people, placing it well below high-burden states such as Rivers, Benue and Akwa Ibom, each with well over 150,000 cases. Garba, the SACA Acting Director, describes the state’s own prevalence rate as sitting around 0.7 per cent, with an internal goal of keeping it below one percent even as the state works toward the global 2030 target of getting 95 per cent of people living with HIV diagnosed, 95 per cent of those on treatment, and 95 per cent of those virally suppressed.

Low prevalence has not meant low vulnerability as Garba pointed to the state’s banditry crisis, mostly concentrated in local government areas such as Shiroro, Munya and Rafi, where repeated attacks have displaced thousands of residents into camps in towns including Kuta over the past several years, as both a testing and a treatment access problem.

“People fleeing violence sometimes end up in areas far from any facility that knows their history”, Garba said disclosing that last month (June), his agency travelled into one such hard-to-reach community after a lead implementing partner, CCCRN, flagged a drop in clinic attendance.

What they found was less a story of patients abandoning treatment because of displacement which makes the facilities physically unreachable as case managers have started working to track clients new location and arrange for drugs to reach them. Garba disclosed that he drove to Kuta himself despite the security risk to assess the situation and look at how to address it.

The Acting Director said the state has also built small but concrete protections into its outreach in insecure areas, adding that free pre-exposure prophylaxis (PrEP) is available through facilities and mobile outreach, and free female condoms are distributed discreetly in camp settings, an approach designed around the reality that open distribution in public view discourages uptake.

He however noted that the legal architecture meant to protect the community once diagnosed remains incomplete.

Although Nigeria’s federal HIV and AIDS Anti-Discrimination Act has been law since 2014, Niger State’s own version, which would criminalise stigma and discrimination locally, remains before the State House of Assembly, unpassed. A technical working group on gender, funded through the Global Fund and involving the police, the National Human Rights Commission, the Nigeria Correctional Service, the drug enforcement agency and several state ministries, currently mediates individual disputes case by case.

““This is useful,” Gariba said, “but it is no substitute for a law that would apply automatically.”

The shrinking safety net

Hanging over all of it is a funding picture that has become considerably less certain since January 2025 when the Trump administration issued an executive order pausing nearly all U.S. foreign aid, including the President’s Emergency Plan for AIDS Relief, or PEPFAR, which for two decades has been the single largest external funder of HIV treatment across sub-Saharan Africa, Nigeria included. Partial waivers followed, but core components, including elements of the drug supply chain, remained disrupted for months, and the administration’s own 2026 budget request sought a further $1.9 billion reduction to the programme’s global funding.

In Nigeria, the federal government moved quickly to absorb some of the gap, approving roughly $3.3 million in February 2025 specifically to purchase treatment packs and cover shortfalls, later backed by a N4.8 billion allocation for HIV treatment and a N300 billion health sector allocation in the 2025 federal budget.

Mustapha acknowledged that new patients are for now being absorbed using drug stock originally procured for those already enrolled, a stopgap, not a strategy, and one that tuberculosis further disruption to the pipeline.

Health officials insist that treatment has not stopped. They also said that antiretroviral medicines remain free in public health facilities across the state, as do HIV testing, viral load monitoring, tuberculosis screening and consultations related to HIV care.

Yet even when medicines are free, hidden costs remain. Patients are generally responsible only for opening hospital folders and paying transport costs to health facilities.

For many households, transport fares compete with food, school fees and rent. Pregnant women living with HIV often struggle to pay hospital registration fees and delivery costs not directly covered under HIV programmes.

People living with HIV also develop malaria, hypertension, diabetes, pregnancy-related complications and other illnesses that require affordable healthcare beyond antiretroviral treatment, a development which majority of them do not have the resources for.

The Coordinators argued that many people living with HIV do not require permanent financial assistance but rather modest support that enables them to earn a living as they pointed out that small grants for petty trading, tailoring, farming or other income-generating activities could significantly improve adherence to treatment by making food and transport more affordable.

For widows, adolescents and unemployed young adults, economic independence could also reduce vulnerability to exploitation and risky survival strategies. This is consistent with findings from UNAIDS, which has repeatedly identified poverty, food insecurity and gender inequality as factors that increase vulnerability to HIV and undermine long-term treatment outcomes.

What keeps people coming back

None of this has stopped the community from organising around itself. NEPWHAN’s structure, a national network with chapters in every state and sub-networks specifically for women and for young people, gives Mustapha, Janet, Raymond and their colleagues an institutional base from which to keep pushing, even where government support lags. CCCRN’s orphans and vulnerable children programme, running under a project locally referred to as TREF, has begun covering transport stipends and treatment costs for some of the children and caregivers Mustapha’s network works with, easing at least one of the burdens he described.

The Coordinators want the state to go further by enrolling people living with HIV into the Niger State Health Contributory Insurance Scheme (NiCare), dedicated income-generating schemes rather than one-off gifts, a passed anti-discrimination law, and a sustained radio and community sensitisation campaign that treats U=U and basic transmission facts as public knowledge rather than specialist information.

What comes through most clearly, across every voice of everyone living with HIV is that none of them are asking to be pitied. They are asking to be fed well enough that the drugs they already queue for, wait for and take without complaint can do the job they were designed to do.

As Niger State navigates this economic storm, the message from the front lines remains one of shared humanity and a demand for dignity.

“We are humans. We do not commit any sin. We did not make ourselvee to be HIV positive.

“It has happened and we have accepted it with good faith. This government need to see us as part of the citizens and put us in programmes that would help us,” Janet said.

The battle against HIV in the state is no longer just a clinical one; it is a test of the state’s economic soul and its willingness to protect its most vulnerable citizens from the twin threats of a virus and a crushing economy.

The goal of ending AIDS as a public health threat by 2030 remains the target, but as one Coordinator noted, that journey is far from over as long as a single pill is missed because of an empty stomach and the fear that still surrounds the disease is not dismantled.