The sound of silence

2009-07-07 13:52

Clem Sunter "Hello darkness my old friend. I've come to talk with you again." These are the opening lines of The Sound of Silence, a popular song of the 1960s by Simon and Garfunkel. The theme of the song is about the inability of people to communicate with one another.

As South Africans, we at times fall into this chasm - and no more so than in the field of HIV/Aids. I was having lunch the other day with a friend who has made a big difference in the fight against the virus. I asked him what the current statistics were. His response was: "Around 1 000 deaths a day, around 1 000 new infections a day, so we are holding steady at about five and a half million people infected in South Africa. The average lifespan of a South African has fallen to 47 years."

The last figure ties in with the registered death curve for each age group which is produced annually. Since the late 1990s, the curve has featured a growing hump in the 26 to 30 and 31 to 35 age categories. These are people who have been infected in their teens and early 20s and died 10 to 12 years later. Obviously, the availability of antiretroviral drugs will hopefully diminish this premature hump in the death curve by allowing those infected to live longer. But the roll-out is taking time.

Meanwhile, what is really concerning is the way we have come to accept these statistics as the norm. Think about it. We don't really talk about the causes of the epidemic because we don't like talking in public about sex which is the main cause of transmission. We throw insults, we make jokes, the media dutifully report progress in their middle pages but the tragedy - and it is a real tragedy - passes most citizens by. I remember talking to one young man in an Aids hospice a few years ago. He said: "It feels like I've got a huge weight on my chest. It gets heavier every day, so one day I will no longer be able to breathe." He died 24 hours later.

I've been to a children's hospice in Pietermaritzburg. It is a kindergarten for children infected from birth. The lady in charge described how the kids blossomed until the age of four or five and then gradually faded away. I've watched a film about a young girl of 17 both of whose parents have died of Aids. When interviewed, she said that she had given up school to look after her younger siblings. She gave them breakfast in the morning, saw them off to school, spent the day cleaning the house, washing their clothes, buying food and household necessities with whatever grants she could obtain, and then gave them dinner in the evening and saw them to bed. Imagine that: giving up your education, your chance to make it in life in order to take on the full responsibility of being a parent. She accepted gracefully the cards that fate had cruelly dealt her even though it wasn't her fault.

We recently witnessed the huge coverage given to the Air France Airbus that crashed into the Atlantic Ocean. Two hundred and twenty-eight people perished in that disaster. Putting our Aids statistics into perspective, the equivalent is four airliners full of mostly young South Africans plunging into the sea every day of every month of every year. And yet silence accompanies their death because they die individually and the majority are from deprived backgrounds.

We should be ashamed and we should do everything to break the sound of silence. We should talk openly about ways to change sexual behaviour to minimise transmission of the virus. We should get the advertising agencies involved since it is their speciality to change behaviour. We should encourage people to get themselves tested and if they test positive seek the appropriate medical treatment. We should focus on compliance with the pill regimen and the fact that even when you feel better you can't stop taking the pills.

Finally we should openly praise all those heroes and heroines who have dedicated their lives to caring for the victims of the epidemic. They deserve national medals for their bravery and compassion.

Send your comments to Clem

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Hopefully, because of this, you will be invited to conventions to speak on HIV/Aids instead of just scenario planning, Mr Sunter. I, for one, wouldn't mind listening to a speech on this subject from you and I know that it would make others sit up and listen too. The example of the 'plane crash is one I like to use as well, usually with regard to the statistics on murder in South Africa, which would translate to one of those 'planes with 200 people on board crashing every four days in South Africa.

I work in the health care industry. We spend copious amounts of money and resources attempting to educate people about HIV Aids. The lack of interest and "don't care" attitude displayed by the very people we are trying to educate is incredibly demotivating. It has got to the point where I couldn't care less about a twenty-something or older person who contracts HIV Aids through intercourse. Don't be fooled, they are educated but don't give a damn. I just feel incredibly sad for the innocents.

So many South Africans are not able to empathize with people in so-called disadvantaed communities because the latter are deemed as "uneducated, lazy, ignorant" members of the population waiting for handouts from government. Yet many who pass this kind of judgement have never even set foot in a township let alone done anything constructive out of their own pocket and with their own time to try and help. Our sexual behaviour is a symptom of a bigger problem. We are an aggressive, angry nation in many ways and A LOT of healing needs to take place to help change this. But turning every conversation into a topic around the corruption of a black government will not bring us anywhere(and this happens often just watch the comments as they evolve). Thank you for your point. Well said.

What an amazing artical. I was touched by it because I was tested positive 4 years ago at the age of 40. Unlike very many of those infected I have had a good quality of life, a good university education, parents and friends and lots of love.I am privaleged. It saddens me that attitudes to the desease have not changed- I DARE NOT TELL MY WORK!The stigma is still very much part of the problem. It saddens me that so many people take on such a huge responsibility (looking after sibblings)at such a young age.It seems our Social Security network has failed these people. I for one would be willing to increase my taxes if I new the money would truly go to those in need. God bless their souls and I hope they live to a good ripe old age. Amen

Our Maid was diagnosed with HIV 4 years ago and we had to pay for her medication for a period of six months (until she got on a scheme). It does not look good for her and we are sorting her out so that she does not have to work. The problem is that her family does not support her and if anything they make matters worse. For example we gave her specific food, which they ate while she was at work. The moral of the story is that we need to help and have a sense of urgency about it but families need to support each other first and not be thoughtless.

We have a friend that also is in the medical field (tertiary education: MBCHB). She also said the indifference of her students is SHOCKING! Their attitude is: "We can't live without sex. Maybe we will get Aids, maybe not". Seems there is a generation that don't mind killing themselves.

I'm a primary school teacher who covers this topic every year with my pupils in a frank, but professional manner. I often wonder which faces will one day have to deal with the issues of the disease...I pray constantly for a cure...in the mean time I do my best to educate the youth I come into touch with.

Wonderful artical Clem and so true.
When I see the panic and reaction to the Swine Flu my reaction is 'What about AIDS'
Having cared for many HIV/AIDS children and adults for the last 7 years I was pleased when the ARV's became available through the clinics. However over the last 2 years I have become frustrated. The ineffeciency & bureaucracy causes delays of up to 6 months for a patient to receive the drugs...in some cases the patient dies whilst awaiting blood results or training and the drugs. This to my mind is criminal as a private patient can start treatment within a week or two. The lack of support to those members of the families caring for the orphans is also a disgrace...I have 2 children who lost their mother 4 months ago and who will be placed in my foster care eventually...4 months to get a Full birth certificate...2 months to get a court date...3 months to get the grant which is back dated to the court date, not to when caring started....in my case I can afford to care for them while I wait but what about the Gogo's out there who can barely afford to care for their famlilies before they take on the orphans.
If everyone just helped one or two affected families what a difference it would make..

I have worked on the mines for nearly all of my 46 year life. Methinks your statistics are overstated. At the last mine i worked at, with a workforce of 1950, between them and thier family members, often months with 0 AIDS related deaths. Crime, Malaria, TB, Motor vehicle accidents and alcohol account for many many more deaths.

I have spoken to someone in the insurance industry in one of the big banks. They get funaral benefit claims daily of 400 young people who have died from aids. Counting only working day (Not Saturdays) it gives you more or less 8800 people per month at ONE of the banks selling funaral benefits.

Four years ago I didn't know anyone with AIDS. Since then I know many people who have died of AIDS or are HIV positive. I don't think we will ever get on top of this disease unless a cure is found. No amount of education will even slow down the spread of AIDS. My maid of 50 something was diagnosed with HIV about four years ago. She was desperately ill and very nearly died. She is now on ARV's, which really do work, and she gets from one of the hospitals that treat HIV. Although it is for free (or very nearly) her CT4 count had to reach a ridiculously low 200 before she had access to them. Maybe the health dept were hoping she would die first. After all the counselling her daughter of 29 went through with her mother, and watching her mother get so ill we thought she wouldn't pull through, she has now too been diagnosed with HIV. People I work with have died of this disease before they would get help because they were so scared of dying of AIDS, and yet our behaviour ( human behaviour) does not change. It's hard to ask the man or woman of your dreams for their blood test results before you start a relationship. Really it's like a bucket of ice water being dumped on you. But that's the reality. How many of us who started relationships from lets say the mid '80's have requested 'the test' before starting anything. I didn't and I don't know anyone who has.

@Sharon: 'The lack of interest and "don't care" attitude displayed by the very people we are trying to educate is incredibly demotivating."...and leading towards a "no care" attitude because being left with no other option. How long can one continue to beat the drums while no one is listening? Why "should we be ashamed", while the "silence" has been broken for years. The reference to "plane loads" of people is touching but people who board planes do expect to reach their destinations. People who willingly and knowingly board the AIDS plane do know their destination, despite the warnings from Sharon and many of her colleagues. They also know that producing off spring will lead to more misery for the innocent who were not given the choice of not boarding the plane. The question is why the millions pumped into the Aids awareness campaigns do not seem to have the desired effect. Are those millions somehow disappearing into the Aids gravy train? Maybe people, like Sharon, could be asked for suggestions on what to do different, what could make an impact on those who "cannot be educated"? Should society go back to the practices of some hundred years ago and isolate HIV sufferers from society as we did with leprosy sufferers? Would fear for such isolation do the trick?

It is true that there is a numbness about HIV. The stats are so overwhelming that it clouds the reality of numbers. I am an HIV buddy to a friend. The stigma is what makes it different from any other terminal illness. Awareness? Plenty! Can it happen to me? No way! HIV always belong to THEM (whatever group you choose). Well, it belongs to US - it is crippling every aspect of RSA's society. But then, we are preaching to the converted most of the time. Good article, but the people who read this care already....

We have much more than 5 million HIv infected people in SA...and that is really scarry.....statistics say that it is one in three and at UCT it is 60 percent ( from a reputable source).....is it too late to stop it?

I appreciate Clem's approach to the reduction of infections. Too often we get the message to use condoms, but not enough people are saying that sexual behaviour needs to become more responsible to really see an end to the HIV/Aids epidemic.

Two weeks ago we had a Health Day at work & were given the oppertunity to get tested for HIV/AIDS as well as cholesterol, blood pressure etc. I also got tested and was the last person for the day to see the nurse. This nurse had the task of informing me of the virus, testing me for it and then giving councelling, should I test positive. The shocking thing was that he had this massive responsibility, yet he was wearing no gloves when he did the fingerprick to get a sample of my blood!!! He got my blood on his fingers so I asked him why he's not wearing gloves. He said that he can't work well with gloves. I asked him if he's not worried about getting the blood of 30-odd people on his hands every day and his response was that 'you can only get the virus this way if you have small cuts on your hands'!!! I was shocked and told him that you get small cracks around your fingernails during winter and he replied that he doesn't. I couldn't believe it. And HE's there to educate ME?! She shocking part is that he probably already has the virus and was putting ME at risk!

Eye opening column, thank you. My view is that we are concentrating more on teaching those that are “disadvantaged” (which is good) but we should also be educating primarily students in universities, young adults entering employment (middle class) because these are the people communities look up to, they listen to these individuals because they think they “educated and rich”… We must then we encourage this group of people to care enough to put in their time and hopefully money educating the “disadvantaged”

@ Benzo....magnificent reply to the bleeding hearts. It all comes down to choice in the end. I very much echo your dispassionate analysis, and the futility of continuing to throw money and resources at the problem if the very victims don't care. If they don't care, should we?

You do realise in this country that docters DO NOT ATTRIBUTE ANY DEATH TO AIDS. You will not find a death certificate with "Cause of Death" being AIDS / HIV Positive...the doctors instead write drug resistant influenza, drug resistant tuberculosis and my all time favourite, drug resistant pneumonia. Or more easily put without any proof required, influenza, tuberculosis and pneumonia... Until the medical profession stops sweeping this under the carpet, no-one will bother to change their attitude or way of living. If someone knew of the 5 people that have died in their family of AIDS instead of influenza, maybe they would change their attitude. Thank you Clem, good article.

JW and Coop! You are both so ignorant it is unreal. The sad fact is that many others hold your views. To reiterate: it DOES NOT matter where HIV came from. We still need to deal with it. And another note, people do not die from AIDS. It is opportunistic infections such as TB, pneumonia, influenza, etc, that cause deaths in people who are HIV positive, who have AIDS. AIDS does not kill. Ignorance does. My ignorance nearly killed me over seven years ago, when I collapsed from multiple organ infection because I was HIV positive and did not know it. Today, thanks to ARVs, a fantastic support system, and a very healthy attitude, I am alive and healthy. Please go visit any state hospital and observe the fear, misery and defeatist attitudes. And this is only from the staff, imagine how those infected must feel. We need to stop wasting resources on prevention. The number of deaths give the general population the idea that death after infection is inevitable. Which explains the refusal to modify behaviour. We need to concentrate on the infected. It is very simple: ARVs, combined with good nutrition (read staple foods, not Woolies fare), with rest, is all that is needed to win this fight. I know: Been there, done that!!! Am now 42, infected for over 11 years, healthy and happy.

With so many challenges facing our nation and continent, how do we prioritise where resources should be channeled? HIV, Poverty, Starvation, Crime . . . Make a difference in your area of direct influence, be that communication, caring, etc. Look after yourself well enough to enable giving something back to your neighbor in need.

An amazingly touching and yet sharp as an arrow article Clem. Thank you. I am always saddened at the lack of knowledge about HIV and even more by the urban myths surrounding this illness. The media tries to "fight" these in soapies, and some medical coloumns aid in informing the public, but articles like these would do far more because they bring reality to our hearts when comparing the tragedy to airplane crashes and even the 9/11 Disaster. We can each help to reduce these awful statistics by speaking out... let our voices be heard.

To @Coop: HIV-related disease is listed as the ninth leading cause of death. Your first statement is obviously untrue, thus negating the rest of your comment.
To Mark: I don't think that name-calling and insulting other posters is constructive or a valid contribution. You seem to make a lot of assumptions about me based on my single sentence. But I stand by what I wrote: lets focus on the preventable causes of unnatural death in southern Africa - tuberculosis, influenza, pneumonia and other infections relating to malnutrition and poverty.

great stuff. while we might have the occasional media update on aids too many people still believe that aids and stds happen outside over there. as a general rule, the conversation about safe sex and testing is not one that happens between new parters. i dealt with this in a previous column and was sorry to see that more people weren't discussing WHY they don't practise safe sex. WHY they don't talk about it. we know what we SHOULD be doing. the question is why we aren't.

Coop the issue is that HIV has no cure. It may be true that Influenza and TB are bigger killers but you will probably find as stated above that many people who have died of these also had HIV. HIV attacks the immune system leaving you open to other diseases that would usually be curable with the right medication. The tradedy for me is the fact that teeagers with their "invincible" attitude to life really don't consider the consequences despite the education. Perhaps it should be compulsory for kids in school to do some work experience in an AIDS clinic, it may change their minds about their risky behaviour.

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