Living with HIV/Aids on the island

The population believes they are all infected with the HIV virus and yet shy away from ascertaining their status apparently because knowing or not knowing does not make a difference for them. Every few days, they bury a resident suspected to have died of Aids, writes Pauline Kairu from Bugiri.

Uganda continues to be hailed for its 20-year history of combating the HIV/Aids epidemic. Regrettably, in the Eastern Uganda Island of Lolwe, the script reads differently from the national cloak of success.

The islands with a non-existent formal economy and perpetual rock-bottom poverty, paint a picture of desperation as people here continue to follow the natural course of HIV to their slow deaths due to what they describe as social marginalisation.

Not only is there no HIV/Aids designated centre here, universal access to HIV/Aids information and treatment is a luxury as the islanders lack a reliable basic health centre. For treatment, patients will have to crisscross the waters to far-off mainland district hospitals. There are similar difficulties with condom availability, further placing thousands of residents at greater risk of infection.

On a trip to the Lake Victoria islands recently, during the first of a Home-Based Voluntary Counselling and Testing intervention by a Non-Governmental HIV/Aids organisation that requested not to be associated with this story, most residents on the two-day outreach programme came forth as having resigned themselves to a destiny of dereliction.

The chairperson of people living with HIV on the island, 45-year-old Constance Nakayondo Mukasa says the population here believes they are all infected with the virus and yet shy away from ascertaining their status apparently because knowing or not knowing does not make a difference for them. She has herself seen the worst of an HIV patient’s days and exemplifies what her fellow sufferers have had to endure.

The lady tells a grim story of drained finances, having to travel to Kampala to go to Mulagos Infectious Diseases Institute (IDI) every month for the last five years for her life saving drugs.

Ms Mukasa’s treatment regimen had to be changed after she failed to adhere to the first line of drugs. Now she is on the second line which is not even provided by the government hence not available in the state-aided healthcare system.

Due to the distance and financial instability, she did not collect her antiretroviral therapy (ART) drugs for a long time and the next she knew she was being informed that her body had rejected the medication.

To which the team doctor who requests that his name be withheld says, “Even the briefest missing of doses of ART medications can cause blood levels of the virus to surge, which can lead to treatment resistance.”

Now, despite her meagre earning of an average Shs20,000 a month as a tomato vendor on the western fringes of the island, from which she also provides for her family of six, she has to spare transport to travel to the Mulago clinic which cannot refer her to a nearer health unit or at least, as has been her long-harboured wish, dispense a longer period stock of drugs that would save her the numerous trips. The doctor explains that she most probably is on second line treatment after the first one failed and that this is the only facility dealing with the treatment.

The second line needs more rapid monitoring and is only given at IDI. It is not administered anywhere else in the country, he explains. “I spend Shs50,000 per month to make the trip to Kampala,” she says. “It has not been easy because I have to be supported by relatives yet I have children depending on me here. I have been asking to be transferred to Mayuge but the doctors have refused.”

The frail-looking widow, who lost her husband to what she believes to have been Aids four years ago, says other patients in her group have to go all the way to Kajjansi in Entebbe while others are luckier since they can access treatment from nearby districts.

The problem of proximity
Her story underscores the HIV problem on the islands. Though it is imperative that treatment be taken in a timely fashion, given the proximity of the island to any HIV/Aids healthcare facility, there is no guarantee the population can adhere to exact treatment regimens. This has caused most to start and later abandon the crucial treatment.

Without an intensified national focus on the access of treatment and care for the islanders, it is highly likely that HIV/Aids infections will continue wreaking havoc on the populated islands, the doctor observes.