Just after dawn on the beaches of the Ssese Islands, fishermen land with their hauls from a cold night on Lake Victoria. On a good night they might earn up to Shs100,000 more than enough for a night of drinking with the comfort of a sex worker.
The fishermen say sex is the fastest way to warm up from the lake’s chill. For Shs20,000 or even less, sex workers are willing to have live sex, a cost the fishermen are often willing to pay.
They acknowledge this raises their chance of contracting HIV, but accept it as another risk in their unsteady lives.
“When someone drowns he dies instantly,” local fisherman Rogers Paul Kiberu said. “For HIV at least he will have some time to remain on earth and enjoy life.”
Kiberu does not know his status; he fears the stigma that comes with a visit to a medical clinic and does not see the upside of going for an HIV test. He said some go for testing and give fake contact information and do not return, regardless of the outcome. Sometimes fishermen migrate because of the change of the tide making it difficult to return to the same clinic. At a new landing site, with a new clinic, the fisherman might have to go to the back of another queue and risk being seen again.
A lack of easily transferable records between clinics further discourages treatment. Most clinics in Uganda still rely on decentralised paper records, and this adds another challenge to tracking patients as they change clinics.
Without records of how a patient responded to certain drug, doctors are much less effective and may start them at the beginning stages of antiretroviral therapy (ART) again and again. Inconsistent use of antiretroviral can also lead to drug resistance, which can create a more dangerous virus.
Dr Hillary Bitakaramine, district health officer for Kalangala, says lack of a unique identifier for each client is one of his district’s biggest challenge. He is advocating for a computerised system interconnected at the district level so that treatment can migrate with the populations they are meant to serve.
For other Kalangala residents like Rose Nakirya, receiving treatment is relatively easy. Nakirya was diagnosed with HIV seven years ago and began ART soon after. She has been attending the same clinic for the last seven years.
According to a 2013 Makerere University study, residents are considered high risk since Kalangala has a 26.7 per cent prevalence rate – nearly four times that of the rest of the country. Those in the district who test HIV positive are immediately enrolled on ART instead of allowing their immune system to deteriorate first.
Even at 58, Nakirya says she has a “bright future”, which she largely attributes to the regular medicine she takes. But not everyone can go to the same clinic year after year.
Lack of a unique identifier does not only harm migrant clients, but also the clinics serving them. If a sub-county is unsure of how many people living with HIV are in their area, it becomes difficult to ascertain the actual stock of medicine. A clinic may overstock medicine leading to more waste if they are unaware a client has migrated to another provider.
In May, a district health centre IV in Kalangala received a shipment of ARVs manufactured in 2013 that was set to expire by June 2016. The pills would need to be distributed quickly or be wasted.
“Due to lack of an electronic system, we do not have good data to rely on,” said Dr Diana Atwine, the head of Health Monitoring Unit at State House.
While most districts have adopted an electronic record system to track their medical supply chain, many still rely on paper records to track patients. Paper records are difficult to transfer between clinics and are more prone to human error which feeds in less accurate information to the supply chain record system.
Dr Nazarius Tumwesigye, a lecturer at Makerere University School of Public Health who has studied digital health management records, says he believes that its adoption would help with drug allocation. He points to the high upfront costs and lack of appreciation of the potential benefits as reasons why they have not been widely adopted.
In other parts of the country digital records have replaced paper ones, although an interconnected district level system is yet to materialize. Dr Atwine said she supports a full electronic system, and e-health policy is a major target of her unit.
Without investment in a more accurate patient record system the Ugandan government will continue paying more for basic health care services and people like the fisher folk will continue to be lost in migration.
Midday, after the morning celebrations of a successful catch, Kiberu and the other fisher folk fold nets in preparation of the night’s voyage. The men laugh when asked if they know their status – for them the immediate dangers of drowning or a fishless night take priority. Systematic errors like lost records only justify their efforts to avoid treatment.
When the fishermen move to new feeding grounds, they will leave this landing site and their records behind. Perhaps these documents will migrate with them, but without a national system in place, there is as little guarantee as catching big fish.
With funding from Centers for Disease Control (CDC) worth more than Shs15b, the Makerere University School of Public Health partnered with University of California San Francisco to launch a programme that uses fingerprints to track people living with HIV. The project titled the Monitoring and Evaluation Technical Support (METS) is starting this year in the 48 districts the CDC operates in. This leaves 64 districts without the system.
The Infectious Disease Institute (IDI) at Makerere University in Kampala developed their own digital records system that tracks all of its patients in 2008. Dr Andrew Kambugu, head of the research programme at IDI, says before the system was launched, he was nervous about how it would affect doctor-patient interactions. Since its implementation, medical staff now spend less time on paperwork and more time with patients.
Unfortunately, these benefits only last as long as the patient is at the IDI. If they go to another clinic, their record is summarised to a single printed sheet to be delivered to the next doctor. In some cases, the record could be shared digitally, but Dr Kambugu clarifies this is not available in most settings.
Even if the patient’s new clinic has a digital record system, the two might not communicate since the IDI’s system is proprietary and requires expensive Microsoft software most clinics cannot currently afford.
Dr Kambugu says he believes more investment should be made at district level health systems. In 2001, countries in the African Union met in Abuja, Nigeria, and pledged to allocate at least 15 per cent of their budget to improve the health sector. While Uganda has improved medical funding since the declaration, it consistently allocates less than 10 per cent of their annual budget to it.
Beyond the benefits to clients, digitising health records turns out to make economic sense as well. According to a UNAIDs report, investment in ART generates economic returns more than twice what was initially spent. Digital records will improve efficiency of ART and in turn improve this return on investment.