UGANDA: Nnalongo Nakabuye, "Taking the drugs without food is taking yourself to the grave"
Nnalongo Nakabuye: "For the last four months, I have not picked up any ARVs."
MUKONO, 11 December 2012 (IRIN) - In October, a report by the Uganda AIDS Commission revealed that the country’s fishing community - considered one of the groups most at risk of contracting HIV - had inadequate access to life-prolonging antiretroviral drugs (ARVs). As of June 2012, just 948 of 6,225 fisherfolk in need of ARVs were receiving the drugs.
Nnalongo [a Luganda title for the mother of twins] Nakabuye, a 35-year-old mother of three near Lake Victoria, has stopped her HIV treatment. Her husband has also stopped his treatment. They say the cessation is due to their inability to afford a decent diet.
Nakabuye, who is also sick with tuberculosis (TB), said that her CD4 count - a measure of immune strength - has dropped to dangerously low levels. Even so, she doesn't dare resume the ARVs because she experiences terrible side effects - including nausea and dizziness - when she takes the drugs on an empty stomach.
She told IRIN/PlusNews her story.
"For two years, I didn't know I was HIV-positive; all along I thought I was battling with TB. I used to frequently suffer from skin rashes, itching and a cough. I found out in 2010, when I agreed with my husband to go for an HIV test in a health clinic. The results showed we were both HIV-positive.
"It was not easy to accept the results. We couldn't believe it. In the early days, we were scared. But as counselling went on, we got a firm heart to fight the virus. We were referred for care and treatment at the health centre. We were started on Septrin [an antibiotic used to prevent infection before patients start HIV treatment] and later on ARVs.
"Then we had the money to pick up the drugs from the health clinic and buy food for taking the drugs. Our troubles and suffering were triggered after the government’s beach-management law enforcement officers confiscated and burned my husband's fishing nets as well as the boat. As low income earners, we couldn't afford to buy the recommended legal fishing gear.
"My husband became jobless. He couldn't get money for buying food, paying rent or picking up the ARVs. The landlord chased us away for failing to pay rent. We are accommodated in this single room by a good Samaritan; we are sharing it with our three children.
"Ssalango [a title for the father of twins] keeps struggling here and there, but things are not easy. He always comes out empty-handed.
"When I went for my last check-up on my CD4 count, they told me it has dropped to 70, which is below the required level [a normal CD4 count for an HIV-positive person is above 500]. They asked me why it has dropped so drastically. I explained to them why I am not taking the ARVs.
"For the last four months, I have not picked up any ARVs. But even if I got the drugs, I cannot swallow them because taking the drugs without food its taking yourself to the grave.
"I do not have the strength to swallow the ARVs because I was advised by the health officials during counselling that the drugs require good feeding. We get what [we have] to eat by chance. We survive on hand-outs from good Samaritans. These drugs are very strong. You can't take them without food. As for me, I eat one meal a day or even sleep hungry if we fail to get food.
"I can't risk my life. I would rather go slowly to my grave than take the drugs and go to the grave faster.
“The TB and malaria normally disturbs me a lot... I keep on coughing and coughing. Recently I nearly died of TB, but a local NGO helped me a lot. They gave me TB drugs and treated the malaria. At least I feel I am on the winning side.
"I have surrendered everything to God to determine my destiny. It's either survival or death.
"I have the energy, but I have failed to get… work. I dropped out of primary school. I have no land to cultivate. I can't get any casual labour. It seems people fear to give me a job because of my HIV status. I have no capital to start up my own business.
“I am also scared for my 13-year-old daughter. The possibility of her facing the trouble I am in is high. These men who are already infected keep making sexual advances to her. I am really worried... My daughter doesn't listen to me. She goes for sex with the fishermen at the landing site and comes back home late in the night. I do not have the energy to discipline her properly. She will get HIV and suffer like me."