I was 7 years old when I lost my aunt. Prior to her death there was a rumor going around in the family that she was HIV positive. Most of these rumors were stigmatizing because everyone looked at an HIV victim as if they were dying tomorrow. In the mid 90s the term HIV/AIDS was not popular. People preferred to use the local word “siliimu” which means slim. The term siliimu was used because of the way HIV turned victims into walking skeletons – literally.
But I guess the stigmatization was not as humiliating as the pain the patients went through in their final days of life. Many would be bed ridden for days/ months. Some (un)lucky ones would even stay ill on their death beds for years.
Before my aunt died she was ill for very many weeks. At the time all HIV patients received counseling services and a very specific kind of yellow corn flour from TASO. Apparently the yellow corn flour was rich in nutrients to help victims live longer. Patients also got some medications such as Septrine and painkillers. At the time the ARVs were not accessible/ available.
In the beginning people welcomed TASO and the HIV patients were willing to go for services because TASO promised all patients confidentiality. This did not last long, people started spreading rumors “did you know, I found this person at TASO, they must be HIV positive”.
Like many other patients my aunt lived in denial. She never agreed to an HIV test even though my mom persuaded her to test saying that this is the only way she would get medication.
There was little knowledge and information about HIV, people knew that HIV had no cure and they knew that a patient would develop diarrhea, grow slim and eventually die. Not much was known about how its spreads, how to take care of patients extra. So mere suspecting that one is HIV positive meant that they would be stigmatized for the rest of their life.
The Baganda have an interesting culture where some one would public declare the cause of death at your funeral. When an HIV patient died normally small talks would go around during the funeral – “he/she died of siliimu”.
When I was 10 years old I lost my most favorite teacher ever. Her death was rather unusual, she was ill for only 2 or 3 days. She died of a headache but rumor had it that she had AIDS.
Eventually there were dozens of death recorded and all were attributed to HIV. Some of these deaths were very painful to my family and I because the people were very close to us.
Today, HIV/AIDS continues to spread and kill thousands in Uganda. The stigma has significantly reduced. I think the stigma has reduced because access to ARVs has improved in the country, which means that people living with HIV/AIDS can live longer.
On November 3rd the Prime Minister of Uganda Amama Mbabazi cited increased access to antiretroviral (ARV) drugs as one of the causes for disheartening complacency that has seen a spike in new HIV infections countrywide.
When the Prime Minister makes such remarks I wonder whether the government’s commitment to “Get to Zero” (zero new infections, zero discrimination and zero AIDS-related death) still stands. Mbabazi might have a point but his statement is rather demeaning to the many HIV/AIDS patients and stakeholders who are making sure that patients get access to the much needed ARVs.
One the major weaknesses in the fight against HIV/AIDS is government failure to integrate sexual and reproductive health education into the national syllabi right from primary to advanced levels of education. There is a lot of secrecy when it comes to sex. Many young boys and girls who are sexually active resort to local tabloids. Newspapers, television and Internet for those who have access to educate themselves about sex and reproductive health.
But what does this mean for many rural youth who drop out of school, don’t have access to this information? Well, of course this means that they are more vulnerable to HIV/AIDS. For me this feels like we are taking 1-step forward and 2 steps backward in the fight against HIV.
Uganda was once a champion on the African continent in the fight against HIV. Today, statistics show that many African countries are dealing with the epidemic much better than us. What happened? Perhaps our leaders got so excited because their initial efforts registered a lot of success and since they became complacent?
Is this a time to play the blame game? Perhaps NOT! That’s why I am not going to talk about the woes in the maternal health sector and government’s failure to prioritize health in the national budget.
Tomorrow is the International World AIDS Day. For me this day brings back a lot of painful memories but most importantly it reminds me that “Getting to Zero” is a shared responsibility. It is going to require (renewed) commitment, less blaming and more doing. And I hope that our government will actually champion this struggle and make it a priority.