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.

During the HBVCT (Home-Based Voluntary Counselling and Testing) undertaking, most residents on the remote island of Bugiri, made up majorly of fishermen, refused to undergo testing because living with a diagnosis of HIV infection without the existence of a life-saving treatment and care regime would only result in depression and faster death.

The only service provider here is seven hours away, and would require one to take four hours on a boat ride to Gonja Landing Site before embarking on another three-hour bumpy ride across a rocky terrain to Mayuge District Hospital where they are not even assured of treatment.

A couple’s revelation
As she and her husband are taken through the pre-testing counselling, Mama Dando, a Kenyan national living on the eastern side of Lolwe Island which is mostly occupied by Kenyan fishermen and twilight women, observes that fellow residents continued to fear knowing their status even when it was obvious they were infected because they had no way of getting health care.

Her husband showed almost all of the symptoms of an Aids patient and was recently treated for TB, but they had never discussed visiting a health centre for a test, she explains to the medical workers. This is the first time they were being tested as a couple although she reveals that she had long seen the telltale signs in her husband and was prepared for anything.

Just after the pre-test couple counselling, her husband Gregory Okoth turns to look at her, seated just adjacent to him in their tiny living room only separated from the bedroom by a threadbare bed sheet. And in Swahili-as if to keep the conversation to themselves and shut out the health workers, asks “So, Mama Dando, do you think we should test?” to which she just shrugs her shoulders before removing her feeding last born six-month old baby from the breast and putting it on the floor to stir a pot right by the foot of the bed.

Later, after receiving her HIV positive result, the outreach workers labour to explain to them their results would be treated with strict confidentiality, to which she retorts, “Now everyone is sick here so it is no point saying you will keep it secret. Many of us are sick but we have refused to come out and demand that our government bring communal help right here on the island instead of us travelling such long distances.”

Dauntlessly, the 26-year-old mother of three says, “Sometimes I think we the people on this island are all stupid because we already know we are all sick yet we continue to hide ourselves behind this facade that we are fine.”
She pauses to reflect before adding; “Now that we know our status, we will start taking care of ourselves,” before her husband interjects to ask how the NGO would help.

Why people don’t want to test
“You see, this is the reason most people have been failing to test, because after testing and discovering you are you are sick, then what?” Mr Okoth poses, as he explains that due to his frequent bouts of illness he can no longer go to sea or stay there long enough to realise a catch sufficient to cater for his travel to get treatment from the far-off main land.

“When I suffered from TB I had to make frequent trips to Port Victoria in Kenya which is not only expensive but the officials there would first ask me to sit aside because I was coming from Uganda. They would ask me why I was seeking treatment in a Kenyan hospital when I lived in Uganda. Dont you have hospitals in Uganda? they would ask.”

Poor access to health services
He would have to make a Shs32,000 journey to and fro Port Victoria plus an extra Shs5,000 for accommodation every month given that there is only a single boat plying that route once daily.

Though it is equally far, he says the Port Victoria District Hospital would be ideal because it is cheaper than travelling to the only other nearest hospital that offers HIV services in Mayuge District, but he is afraid he will be turned away like most of his colleagues whom he says have been denied HIV drugs and asked to get them from their resident districts.

“They really challenged me during my TB treatment, but I braved out all the mistreatment until I completed the dose,” he says. “I have heard stories from my sick friends of how they go and return without drugs. They are Kenyan, and when they go to Ugandan hospitals they are turned away and told the drugs available are for nationals only, again in Kenya they suffer the same fate I did.”

“Now you tell us what are we supposed to do? Even after wasting their hard earned money to go there, they returned without drugs and just sat and waited for their time to come. However much you explain yourself or show your identity to prove that you are a Kenyan, no one listens. We don’t know where the drugs will come from. People have been dying slow painful deaths here because they cant access drugs.”

Mr Okoth says every few days, they bury a resident suspected to have died of Aids. “Most didn’t even bother going for treatment. They just passed on and we knew what had killed them.” He is still mourning one of his friends who passed away from Aids-related complications a few weeks ago, he had been bedridden for a long time. “He used to get treatment then he stopped going for the drugs, I think because he no longer had the means. He became so thin and just got worse every day,” he says.

NGO help
For the time being, the doctor leading today’s team offers to send those tested a six-month supply of Septrin tablets. But this can only serve as a short-lived respite until they can get themselves enrolled on a HIV/Aids care programme at one of the public health facilities.

Anger
Mr Okoth’s concern is echoed in many other homesteads, like in Davis Odhiambo’s where despite having accepted to be taken through the pre-test counselling, the extended family of five gangs up against the medical social workers and demands to be told why the government has failed to establish a good-enough health facility to serve the islanders.

“You are now the third group to come here and ask to test us,” the hostile young adult called out in Swahili, “but you go away with our samples and never give us our results. HIV organisations coming to the islands are just playing with our minds and we can’t trust you anymore. How are you helping us?” he demands to know, even though he had been informed that the result would be instant. “If you find us with the virus will you give us the medicine that we need?”

Nevertheless his 26-year-old brother, Daniel Okech* accepts to take the couple test with his wife. Following the results, they are found to be a discordant couple. He is advised to enrol on a health care programme at the Mayuge District Hospital. At the end of the day, we leave Lolwe Island, a place full of despondent people. It is clear that unless something is done fast, HIV/Aids in this area will kill many.

* Names have been changed to protect individuals’ identities.