How stigma is hampering access to HIV treatment in Nigeria

More HIV-positive Nigerians could take up antiretroviral treatment if services were provided at government-owned primary health-care centres in the country’s rural areas rather than in urban hospitals.

But for a shift to localised programmes to work, the government will need to destigmatise HIV in rural areas. If this doesn’t happen, patients will stay away because they fear that their HIV status will be disclosed and they’ll be ostracised in their communities.

This is the finding of our study, which tried to understand how patients perceived the treatment they received at primary health-care facilities that are close to where they live and work.

With more than 3 million people living with HIV, Nigeria has the third-highest burden in the world.

In the country antiretroviral treatment services are administered at treatment centres in secondary and tertiary hospitals. These are mostly located in urban settings as part of the country’s national HIV control programme.

But this strategy has not reduced the rate of new infections among children and young adults. In 2010, Nigeria had a national HIV prevalence of 4.1%. This only marginally decreased to 3.6% in 2013. There is also a slightly higher HIV prevalence in rural areas than in urban areas.

Decentralising antiretroviral treatment services is one of the most effective ways to solve this. It would result in:

-antiretroviral services being better matched with local preferences;

-better access in hard-to-reach rural areas and for vulnerable groups; and

-the use of cost-effective approaches.

What the patients think

Studies have shown that poor rural people have higher and more exorbitant health costs when they try to access antiretroviral treatment – and, as a result, they are unable to maintain treatment. Food and transport costs, as well as the costs of other illnesses linked to HIV, hinder them from accessing treatment services.

To understand why centralised service centres were ineffective, our study looked at patients’ perceptions and attitudes towards decentralising antiretroviral treatment services from central hospitals to primary health-care centres.

Primary health-care centres are localised clinics in Nigeria.

We did a cross-sectional survey in health facilities in three Nigerian states: Abia, Adamawa and Cross River states. At the time of the study, decentralisation was to start in Abia state, had not yet started in Adamawa state and was under way in Cross River state.

The vast majority of those surveyed were happy that they were on treatment. Their health had improved and they were happy to continue treatment.

They felt decentralising antiretroviral treatment services would help control HIV and AIDS in the country. But they were not comfortable with receiving antiretroviral treatment services in a primary health-care facility close to where they live. More than 80% of the respondents feared that their status would be disclosed and more than 70% feared that they would be discriminated against.

Most were satisfied with the service delivery mechanism that they were currently receiving, and were willing to continue in this way. Of those who were not satisfied, long waiting times appeared to be the most common reason for dissatisfaction.

Decentralisation has worked before

There are clear benefits to decentralising treatment.

Before the study, a pilot was launched in two Nigerian states to understand the effects of decentralisation. The pilot effectively moved HIV testing and counselling, and prevention of mother-to-child transmission services from centrally located specialist hospitals to peripheral health centres.

At those centres the community as a whole and people individually were more accepting of the services. Being closer to the treatment centres meant patients were enrolled faster and stuck to their treatment regimes better.

The nurses and counsellors had a reduced workload, which led to improved patient care. And both the waiting time and the financial costs were reduced. This increased access to care for the most affected and those in hard-to-reach areas and improved community participation and ownership.

Stigma is the final step

But to achieve universal access to antiretroviral services, more work needs to be done to address stigma.

Efforts at reducing stigma and discrimination around HIV and AIDS have been successful even in Nigeria, which has a culturally driven society. Some of these interventions have taken the form of campaign days, marches or concerts to create awareness around HIV, and have included international nongovernmental organisations.

But these HIV demystifying interventions have concentrated on urban areas, leaving out the rural majority. This could explain why people residing in rural areas prefer to receive care far from home.

This is particularly important as antiretoviral treatment services may be a challenge in developing countries like Nigeria, which are resource poor. In these countries there is often a struggle to determine how limited resources should be used to provide high quality patient care services in a sustainable way.

The answer lies in considering both the effectiveness of doing things differently as well as the social impediments that stand in the way.