Self-stigma: A silent killer of people living with HIV/AIDS

“I used to pass in a short cut from my home to the hospital to seek medical treatment as if I was a thief. I was afraid of neighbors knowing that I was going to get my ARVs and whenever I found a person I knew at the health facility, I would run away before she or he [saw] me getting drugs.” These are the words of Kagumba Ssalongo Mulinda from Kiwongozi village in Luwero district.

The 56 year-old says that he almost died because of self-stigma. It is for this reason that Mulinda formed the Both Foundation in Luwero district to fight self-stigma among the people living with HIV/AIDS.

“I thought I was protecting myself [from] being exposed about my HIV sero-status, not knowing that I was digging my own grave” he said.

He said that he was hiding from his immediate family while he was on treatment, making adherence to drugs impossible, until he could no longer sustain the game of hide and seek any more.

“I want to tell other people living with HIV that when the virus has entered your body and blood, there is nothing much you can do to change your status but you can change your mindset and disclose it and stick to your drugs. If you don’t, you will die. Remember that being HIV positive is not the end of the world. There is more life after getting [infected] with HIV. We have to fight to the end, if we don’t, the virus is not joking, it will destroy us,” he told Key Correspondents.

He suspects that he got the virus in late 1980s and by the time he tested HIV positive 15 years ago, he had a CD4 count of 33, which has improved to a count of 720 as a result of drug adherence.

Mulinda appealed to non-government organization to financially support community based organizations in order to continue the fight against HIV.

“We are still on the frontline fighting with the enemy, we need strong support to win the war,” he adds.

As Mulinda is still struggling to fight stigma, Youth Counselor and Peer Educator Catherine Namakula is not shocked that Uganda’s HIV prevalence rate has risen from 6.3 percent in 2005 to 7.3 in 2012. Namakula has no kind words for people for who are spreading the virus, knowing that they are infected.

“Most people you see driving posh cars are just looking good [on the] outside but rotten [on the] inside and are on drugs,” she said bitterly.

She advised the youth to be very careful and avoid cross generation sexual network which she said will reduce on the new cases of HIV infection.

Namakula also criticized witchdoctors and food supplement marketers who are misleading people that they have a cure for HIV.

“I have tried to sensitize people to test for HIV and sometimes I get a shock when someone goes to a witchdoctor saying that she or he has been bewitched. We are also facing a huge challenge from people who are marketing food supplements. They go telling people living with HIV/AIDS that the food supplements cure the virus. This has led to some people stopping taking ARVs and opting for food supplement which is very dangerous to their health,” she said.

Umar Kalemani the Luwero HIV Focal Person expressed his concerned over the growing number of people seeking second line treatment which he attributed to the failure to adhere to first line treatment and becoming drug resistant.

“Many people are going for a second line treatment which is very expensive and rare in our health centers. This comes as a result of people’s failure to adhere to first line drug [treatment],” he said.

Moses Kirigwajjo, the Programs Officer of Uganda National Health Consumers Organization said that in Luwero stigma has reduced because of sensitization work and many people are coming to get treatment freely.

However the health in charge of Luwero Health Center IV, Dr Edward Ssegawa, said that the number has grown from 25 people daily to 200.

“We use used to get 25 people on ARTs clinic day but we now received 200 clients seeking HIV services,” he said.