Living with AIDS
By Leigh Barrett / Perspective Publications
An extraordinary life, lived ordinarily.
It was her laugh that caught me. The clear, joyous, uninhibited peel that rung out unexpectedly, belying her life of odds stacked against odds. A 21-year old woman, studying to pass matric so she can enter nursing school she can’t afford in an effort to make life better for herself, her family, and her 2-year old son, living financially insecure in a home too small for the 8 people her police constable mother now supports on a single salary in Mfuleni Township, a relic of apartheid and an obstacle to advancement, too far from anywhere to realistically find employment or accessibility to a better life.
And she’s HIV positive. With Tuberculosis.
In a country — and a world — more than capable of dealing a death blow to HIV transmission, but lacking the political will to do so Rose* contracted HIV as a teenager, nursing an uncle and his children who were HIV positive, without the benefit of training or knowledge beyond basic hygiene.
She tells me, “I felt afraid because I wanted to know where I got it. I didn’t sleep with a boyfriend. I found out in 2010, when I was 15. I was shocked and didn’t feel comfortable, so I only went to the clinic in 2011 and got the treatment. Now, I feel happy — I don’t have stress that someone will see me there. I don’t care about others, I care about my life.”
And yet, Rose still insisted on anonymity for this piece, because very few people know she has HIV. The stigma, prejudice, and discrimination that accompanies having the disease is still prevalent. With roughly one in eight people living with HIV and with limited access to health care, the consequences can range from a denial of healthcare to a loss of employment, and depression or a sense of worthlessness.
Undermining people with HIV has a dire impact on the spread of the disease: denying care, whether it’s from professionals, or their community, creates a sense of shame that pushes the person into denial. And that is the most dangerous place to be. South Africa alone is seeing over 300,000 new cases each year, and around 200,000 South Africans dying from AIDS-related diseases. 48% of the 7 million people living with HIV are on antiretroviral treatments.
By comparison, USA, with 1,2 million HIV-positive people (less than 40% on antiretroviral treatment) is seeing close to 50,000 new HIV cases each year, and the UK around 6,000 new cases, adding to nearly 104,000 people with HIV, 91% of whom are on antiretrovirals. (Source: Avert.org)
The stigma attaches itself for a variety of reasons:
For many years, HIV was automatically associated with death. AIDS was the logical conclusion, and nobody recovered. With the advancement of drugs, that is no longer the case, and while infected people are able to live long and relatively healthy lives, they still face that fear.
There is an irrational response to those who have HIV, with still too many viewing them as promiscuous, or homosexual, or with a lifestyle that doesn’t fit the adopted biblical ideal.
And so, denial and secrecy remain the chosen course for the person, undermining the ability to stop the transmission of the disease.
When someone famous says something that is a fundamental, known, truth, it gets headlines, and that was the case when Charlize Theron, speaking at the 21st International Aids Conference, said, “I think it’s time we face the truth about the unjust world we live in…. We have every tool we need to prevent the spread of HIV….The real reason we haven’t beaten the epidemic boils down to one simple fact: We value some lives more than others.”
In the 1980’s, when the world started to learn about HIV and AIDS and it was still considered a “gay disease”, Health Ministers from numerous African countries absolutely denied even the existence of homosexuality in their country. Driving gay relationships, as well as prostitution, into the shadows, resulted in an epidemic.
While some countries have slowly come around to reality, there is still a resistance to the acknowledgment of homosexual behavior (despite it being quite acceptable prior to the arrival of Christian missionaries on the continent), with still too many countries making human relationships punishable by death.
Healthcare workers like Rose can be victims or perpetrators. Many in rural areas do not have access to professional care, so do their best for family members stricken with AIDS-related illnesses. Their lack of access to hygiene, or simple ignorance about the ways in which HIV can be transmitted, has led to the spreading of the disease. As low as that risk can be, for someone like Rose, it’s hard to explain to people that she is neither promiscuous, a drug user, nor a prostitute.
And, if one cannot trust a professional healthcare worker to keep your status confidential, especially in small communities where everyone knows each other, there is valid reason to keep one’s condition secret — or not get tested at all.
In 2014, Rose discovered she had Tuberculosis. “Why me?” was her first obvious question. “What did I do? And then, I found out that TB is all around. The mothers I was helping at the clinic already had TB, and I didn’t know.”
Across South Africa, Tuberculosis is the main driver of HIV. An airborne disease, TB affects HIV/AIDS patients, as well as smokers, more often than any other illness. According to the WHO (2011), 13% of all people with TB also have HIV, and with the high HIV rates in sub-Saharan Africa, this is particularly serious. TB is one of the main side effects of poverty: overcrowding, unsanitary conditions, resource-poor communities, with limited access to healthcare — all elements that are commonly found in the townships of South Africa. Co-infection means that regardless of which came first, TB or HIV, each disease encourages the progress of the other.
“We cannot win the battle against AIDS if we do not also fight TB. TB is too often a death sentence for people with AIDS. It does not have to be this way. We have known how to cure TB for more than 50 years. What we have lacked is the will and the resources to quickly diagnose people with TB and get them the treatment they need.” Nelson Mandela July 15, 2004
“Your hair is so clean”, she said quietly, as if more to herself than to me. Her talents for hairdressing are one way Rose makes money to provide for the household of dependents. Visiting the local HIV health clinic where she receives, and often provides, counselling there are poems on the walls, written by young residents who are now faced with a lifetime of medication, and their struggle to face down the odds of living in poor conditions, is as daunting to them as it sounds.
