There's Something About Jabu

The following story is a true story, though names have been changed during the writing process.

I don't think anyone would wish to have their obituary read as cause of death - "Death by Bureaucracy" - but that is precisely the reason why countless people in South Africa have met and will meet their end in the years to come.

Everyone knows that HIV/AIDS is an unforgiving, indifferent, treatable though incurable disease. With the knowledge we have amassed over the past 20 - 30 years researching the disease, it has become quite manageable, and people are able to live much longer and healthier lives if they have access to the information, medical attention, and drugs that they need.

The SA govt., to put it plainly, is overwhelmed. They have problems from A to Z ranging from high crime rates across the country, massive unemployment, land redistribution, race issues, affirmative action, poverty issues, lack of infrastructure and resources in rural parts of the country, energy and electrical issues, a broken education system... the list goes on and on. Add to the top of that list is the fact that according to one study, as of 2006, over 6 million people out of a population of 46 million, had been documented as being HIV positive, with over 1000 more people being infected every day. And that's just the information gathered by those who have been tested, not including the countless number of people who are HIV positive but have not gotten tested.

I don't wish to get into a full length essay about American misconceptions about the disease here, and what is learned by actually living amongst the people of SA, but please know that the issue of HIV/AIDS goes infinitely deeper than many of us can imagine. Myself included. Everyday it seems I learn about a different aspect of the disease and/or the culture surrounding me that brings me closer to understanding the depth of the issue, but still no closer to having any sort of solid approach to addressing it.

One thing that I have realized is that the disease takes on entirely new dimensions in one's mind when you personally know someone with it. The idea morphs again when you see that person progressing into the later stages of AIDS.

Here at site, only two adults and one infant have passed away in the last few months due to HIV/AIDS. That's a relatively small number of deaths, but then again, the community consists of only about 200 people. Others within the community, old, young, and middle-aged, are positive, though no one ever talks about it, and they continue on with their lives as if there is nothing wrong with them.

We recently had a young 21 year old woman come back to the farm here where she was raised along with the 15 - 20 other orphans that have come thru this home over the years. Jabu has had two children already - one 5 years old, one just about a year old. Both children have different fathers. The reason Jabu returned to the farm after many years of being absent, was because she was HIV positive, and has progressed into much later stages of AIDS. Now she is unable to walk without extreme pain, she has virtually no energy, she runs a constant high fever, and upon a recent visit to a doctor, was diagnosed with tuberculosis. Her CD4 count as measured few weeks ago, was 240.

Jabu, as mentioned before, was raised as an orphan. Though a few attempts had been made to get her proper identification documents such as a birth certificate and ID book, to this day she is waiting for her ID number, along with millions of other South Africans.

We would like very much to get Jabu on ARV drugs, which the government does supply at most local clinics. However, to receive ARVs, your CD4 count must be below 200, and you must have proof that you are a South African citizen, in the form of either a birth certificate or and ID book. Jabu meets neither of these criteria. However, any way you look at it, it is obvious that she is in desperate need of ARV treatment. Though her CD4 count was above 200, she has already progressed to the later stages of the disease, so technically, she is eligible to receive them. But govt. clinics will not give out ARVs to people without proper documentation.

Facing this dilemma, we called for some outside help. Jen has been a friend of the family here for many years, and is currently working for an NGO in Jo'burg that is very involved with issues surrounding orphans and HIV/AIDS. Jen confirmed that technically, Jabu is eligible for ARVs. She told us that because she knows the family and Jabu quite well, she would make a personal trip out here to see if she could help.

I went with Jen early one morning to the Dept. of Home Affairs at the local municipality to check on the status of Jabu's application for an ID. The people at Home Affairs all confirmed that it was "stuck" in Pretoria as of 2 weeks ago, and could tell us no more. The computer systems had recently been switched over which caused delays in the processing, and the employees did not know how to investigate as to why the application was "stuck". We asked when it might be resolved and we might have a more definitive answer. They responded it might be about a month before it was ready. Of course, TIA (This is Africa) so one month could mean anything. We asked in vain if there was any way to speed the process up, and received the expected answer of "no". We explained the situation, that our friend was very sick with HIV, and needed ARV treatment but couldn't get it because she had no ID. They were sorry, but they couldn't do anything.

So here is the case of a legitimate South African citizen, raised as an orphan, who has lived in rural South Africa for the entirety of her life, who now is essentially being told that her life is being weighed against the government's willingness to free its hands of the red tape binding them together. The government, by making no exceptions to their rules, are saying that they would rather keep their hands tied as so, as opposed to risking giving out life saving medication to someone who might not be a legitimate citizen of this country.

That, dear readers, is called Death By Bureaucracy.

Our only chance at getting Jabu ARV treatment is to take her to a private clinic (which we cannot readily or sustainably afford) or to take her to an NGO site where they can give out ARVs to those in need for free. We found only one NGO clinic that was within driving range which we could take Jabu to.

After an hour and a half drive, we arrived at the clinic where the doctor looked at Jabu, diagnosed her with TB, gave her medication, and instructed those of us with her to make sure she returns within a few days for further examination, followed by visits once a month. They are unable to give out ARVs until her TB is under control.

Now the issue is transport back and forth for Jabu and her "treatment partner" who is supposed to make sure she understands what the doctor is telling her, and to make sure she is taking her medication as scheduled. Transport is expensive (doubly so when including the treatment partner's transport expenses) and notoriously unreliable out here where we live. (I once waited over 2 hours on the road for a ride only 40 km away – the ride then took 1 1/2 hours to complete due to the poor condition of the vehicle) We are making a plan to solve this issue, but it will prove to be more difficult than should be.

Part 2 of this story "Jabu's Choice" will follow in a separate post.