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Second National Conference
For People Living With HIV/AIDS
8-10 MARCH 2000 DURBAN
INVOLVEMENT OF PEOPLE LIVING WITH HIV/AIDS -
HOW TO MAKE IT MORE MEANINGFUL
Mr Justice Edwin Cameron
Acting Justice of the Constitutional Court of South Africa
1. It is a great pleasure and an honour to be here tonight.A gathering of 250 people openly living with HIV/AIDS is important for all South Africans who are living with HIV/AIDS.There are perhaps as many as four or five million South Africans who have HIV or AIDS.The vast majority of them are undiagnosed.They do not know that they have the virus in their bodies.Some of them are already falling ill.They do not know that it is AIDS.And even if they do know or suspect what it is, they and their families feel a dread reluctance to give the disease its name.
2.That is why this conference is so important.In an epidemic of the unseen and the silent, those of us who are here today, openly living with HIV/AIDS, must be the voices and the faces of this epidemic.Those of us here tonight differ in who we are, where we come from, in our race, in our culture, in our gender, in our sexual orientation, in our jobs, our commitments, our political views.But what we have in common is more powerful than all of this.We have in common three things:
2.1We are open, in different degrees, about the fact that we are living with a potentially deathly virus in our bodies.
2.2Although some of are richer, better connected and more mobile than others, all of us here tonight are relatively empowered.The fact that we have received the transport and the subsistence necessary for us to be here means that we are better off than most of the people in this country who are living with HIV/AIDS.In an epidemic of the poor and the powerless, we 250 are the most empowered; and that places significant duties on us.
2.3Most important of all, what those of us here have in common is our commitment to fighting this epidemic.We would not be here if we did not think that in some way we could and should do something to make a difference to HIV/AIDS in our country.
3.What practical contribution we can make will differ according to each of our circumstances.There are lawyers here, teachers, activists, social workers, young people, old people, poor people and rich people.Each in our own spheres, in our own way, we can change the way this country sees and reacts to the epidemic.That is why this Second National Conference of PWAs is so significant.It gives us an opportunity to gain strength from each other, to gather ideas from each other, and to unite our determination and commitment in finding answers to the problems that AIDS poses.
4.The same I think can be said of the Minister.The fact that she is here indicates her concern for the problem, and her willingness to engage in debate about the best possible action to take.It also indicates her commitment to using her power as a Minister to find constructive solutions.Her commitment is important, since as a Minister in Government, she has access to more power than anyone else who is here.Government has committed itself to a partnership against AIDS.That partnership is vital.And to succeed, it must be a real partnership.Partnership requires mutual trust, sharing, respect, and cooperation.Without these qualities, no partnership can work.
5. But even though Government is one of the partners against AIDS, it is undoubtedly the most important partner.Government has power.Government has resources.Government has connections.Government has influence.These are resources which can be powerfully employed in this epidemic to make an impact on this epidemic.
6.We know that Governmental power can be powerfully used to change the course of an epidemic.We also know that Governmental power can be mis-applied to create confusion and to dis-empower people in the epidemic.In the first five years of the democratic Governments response to AIDS, there were many such mistakes.Sarafina was one such mistake.Virodene was a second mistake.And Minister Zumas commitment to making AIDS notifiable - when the circumstances for notification to be a helpful policy in the epidemic in South Africa simply do not exist - was a third mistake.
7.When Minister Tshabalala Msimang took over as Health Minister in June 1999, there were high hopes that a fresh approach, fresh energy and fresh ideas would bring more successto governmental action against AIDS.
8.But, Minister, I must tell you truthfully that so far these hopes have been disappointed.You are part of a government that in many respects is an inspiration to Africa and the world.This government demonstrates commitment and energy in ways that make many of us proud to be South Africans.It is committed to fighting crime.It is committed to ending racism and gender discrimination.It is committed to providing housing and jobs and clean water and safe towns and townships for our people.President Thabo Mbeki has gone into the world and into the rest of Africa to express the ideals of democracy and accountability and freedom of expression as values which are important to Africa and which are capable of realisation on our continent.This Government has managed the economy so as to pay off a huge portion of the national debt that the apartheid government had left us all in 1994.After nearly six years we seem to be at the point where our economy can grow, and where there will be more jobs, more money and more opportunity for everyone.
9.And yet despite all this, it simply does not seem that the government can begin to get it right on AIDS.Amongst many people living with HIV/AIDS there is considerable grief and confusion about the governments policies.I refer to four instances.
9.1This morning media reports indicated that a report to Parliament had disclosed that up to 40% of the funds allocated to the Department of Health for spending on AIDS had not been utilised.The Minister has explained that in fact 32% of the funds in question have been allocated, although not spent.This is nevertheless a disturbing state of affairs.Lives are stake in this epidemic.We are told that funding constraints limit the power of Government to intervene, and to assist non-governmental organisations efforts.How then can it be possible that public funds, specifically allocated to AIDS, are not usefully spent?The need is there.Why were these funds not used to meet it?
9.2The Special Advisor the Minister of Health, Doctor Ian Roberts, recently announced that the Government would establish an International Panel of Experts whose function it would be to re-assess the various aspects of AIDS science.Many experts and activists interpreted the announcement as an indication that the government endorses the Duesberg hypothesis that HIV is not the determinativecause of AIDS.Such an approach would be calamitous, both locally and internationally.The Minister later repudiated her Special Advisors statement.She re-affirmed that the established scientific and epidemiological evidence on HIV/AIDS is regarded as conclusive, and that the epidemic is the most serious health challenge to Southern Africa.These clarifications are commendable.But what was the Ministers Advisor doing announcing the committee in a way that gave rise to rampant disquiet about its remit?The Advisors handling of the issue appears to have been misjudged and extremely damaging.
9.3The Ministers Special Advisor once again placed himself in the media spotlight recently when reports quoted him as saying that, even if anti-retroviral medication was made available to mothers giving birth, there was nothing to suggest that in impoverished rural areas, saving the life of the child would affect mortality statistics later on.Dr Roberts quoted statement and I sincerely hope it was a misquote created an extremely unfortunate impression.It could suggest that advisors within governmenthold the brutal and cynical view that it is not worth spending money on saving babies from AIDS because they will die soon anyway.That anyone in a position of influence within government could hold this view is too momentus to contemplate.Every human life in this epidemic is individually precious.Every South African deserves to be protected from exposure to the virus.Every South African is entitled to the prospect of a dignified, fulfilled and healthy life.Cynical attempts to justify withholding treatments on the basis that AIDS orphans will die any way, or that the country cannot afford to care for healthy AIDS orphans if their parents have died of AIDS, can form no part of justified and moral decision making in our country.
9.4That brings me to the fourth, and final matter for concern about current government policy.It concerns the provision of anti-retroviral medication to pregnant mothers and their infants.It is correct, as has been emphasised, that there are many questions in the AIDS epidemic that are still unanswered.There are many things that we do not know about the virus, about the human body, and about human society and human behaviour in it.Nevertheless, there are many things that we have in fact learnt about AIDS, and about ourselves in how we respond to AIDS.Since 1994, very detailed and careful scientific and medical studies have been done on how to reduce the risk that a mother with HIV will transmit it to her baby during or after birth.The overwhelming scientific consensus is that effective anti-retroviral medication can be made available in a developing country to reduce transmission.Every month in our country, approximately five thousand babies are born with HIV.Medicines exist that, now, can reduce this figure by half.Economists have done detailed studies that show that this medication can be made available cheaply and affordably.Their studies have also shown that, from a purely economic point of view, it is better to save young babies from getting HIV than to let them fall sick and die of AIDS, and that intervention will save the country money.In brutal terms, it is cheaper to have a healthy orphan than a sick, dying orphan.
So overwhelming is the medical, scientific and economic consensus on these points, that many people find it almost impossible to understand why our Government is still delaying the immediate implementation of programs to prevent mother to child transmission of HIV.
10.This fourth and last issue I have raised is one of particular importance to all of us who are living with HIV/AIDS.Why is it of such importance to all of us even to those of us who are not women, who are not children, and who are not parents?This is for a number of reasons.
10.1First, we live with the virus in our bodies.I have been living with this virus for 15 years.More than two years ago, I fell seriously ill.I had four of the symptoms of full blown AIDS.I was very sick indeed, with PCP in both my lungs.I hadoesophageal thrush.I had lost enormous weight.The virus was raging throughout my body.Yet, two and a half years later, I am more fit, more healthy and more vigorous than I ever have been in my life.Why is this?It is because of the blessings of modern medicine and of modern medical care.I take three medications twice a day.Not only do I feel fit and healthy, but I work long hours, seven days a week in activities that engage me with many wonderful and exciting issues.
This medication is available to me only because I can afford it.It costs nearly R4 000 per month.Yet the medication is not expensive to produce.It is expensive because of international drug pricing, patent laws and the research and development considerations advanced by the drug companies.To me it is a shameful situation that purely because I can afford it, I should be alive tonight and speaking to you, when other people have died in the last two and a half years, and more still are dying now.It is shameful that I should be healthy tonight and here with you thousands of others without medication are already sick.
The medication issue is of importance to every single one of us here tonight.If this epidemic is about life and death, and if medication can save lives, then the most important issue in this epidemic is finding ways to give everyone access to medication and to adequate health care.
That is why I say that the mother to child transmission issue is a matter of vital importance for us all.If government commits itself to helping pregnant mothers, it will throw a beam of hope onto the entire epidemic.It will throw a beam of light onto all our lives.If babies can be protected from exposure to HIV by giving medicine to their mothers, then all of us can hope that progressive implementation of an accessible drugs programme will save many more lives in South Africa and in our continent as a whole.
10.2So the issue is important because it shows that the supposed opposition between prevention and treatment is illusory.By treating we also prevent.And by preventing through treatment we give all people affected by the epidemic hope.And when hope returns to this epidemic the ignorance, fear and hatred will begin to subside.So, by showing hope through treatment, we will also address the stigma that surrounds this disease.
10.3Finally the issue is important because it is a profound test of the governments moral commitment in this epidemic.Tonight I am talking not as a lawyer or as a judge.I am talking as a person living with this virus in my body, who knows what it is like to feel deathly sick and to fear death.I also know what it is like to recover and to start feeling strong and hopeful and optimistic again, to begin to love and enjoy friendship again.The governments response on mother-to-child transmission of HIV raises too many problems for it to give any of us reason to feel hope.
11.I am not a medical expert.I am not a scientist or a doctor.But if we are to give people with HIV/AIDS greater involvement in this epidemic, then we must all have a voice.In considering our governments response to the epidemic, I can do no better than quote someone who, unlike like me, is not a white man, but a black woman.She is also a doctor and a medical expert, and one of the leading intellectuals on our continent.She is Professor Mamphela Ramphele, Vice Chancellor of the University of Cape Town.On 1 December 1999 speaking at a graduation ceremony at the University of the Witwatersrand, she said that public policy in South Africa showed a lack of respect for a scientific base for health care planning.She stated that there was a subtle but visible ani-intellectualism seeping into the body politic which discounts the value that experts can, and do, add to human development.What she called the bitter fruits of this anti-intellectualism were most tragically evident in HIV/AIDS.She said that no coherent management strategy [has] yet [been] developed by the Government.This failure, she stated, results not from lack expertise in South Africa, but in its disregard by those in Government, with tragic consequences.Professor Ramphele concluded that the present government position on AIDS was nothing short of irresponsibility, for which history will judge it severely.
12.These are profound and scorching words.But as a person living with AIDS, I cannot but endorsethem.We have a crisis in our country.It is all around us.When I got out of the plane this evening at Durban Airport, of the first ten people I saw, two already have HIV or AIDS.It is in our bodies.There is too much at stake for intellectual dilly-dallying.There are too many lives, too much happiness, too much human prosperity at stake for flirtation with dangerous and wayward theories.
13.We have a wonderful country.Ten years after the release of Nelson Mandela, we have a Government, an economy, a political system and a constitution which is the pride of the world.We need to set ourselves right on AIDS.We can start with pregnant mothers.We can intervene to save their lives and the lives of the children of our country.A constructive, effective intervention here will give us all respect and hope and confidence.It will give us the belief that we are beginning to tackle this epidemic in a sensible and respectful and progressive manner.It will give our country the moral authority to tackle the drug companies.It will give us the international stature to say to them AIDS is a particular crisis in Africa that necessitates crisis measure, that demands special accommodations in drug pricing and patent applications.
14.Professor Rampheles criticism should not be taken amiss.It was intended as an plea to the Government.It provides us all with a challenge.AIDS threatens our lives.Our countrys handling of this crisis threatens its moral authority in the world.So devastating can this epidemic be, that the deaths and illness and economic ravages of AIDS can threaten our national peace and the constitution itself.
15.These are matters that lie very close to our hearts as people who live with the virus in our blood and in our bodies.We are at the epicentre of this crisis because, though affects everyone, it affects us most.We have most to loose if AIDS is not handled properly.We have most to gain if it is.
16.Let us therefore unite with each other in a way that will bring about change in this epidemic.Let us unite to demand rational, constructive and scientifically based action from our Government.Let us join Professor Rampheles plea to the Government to base itself on informed and responsible scientific opinion in implementing treatment options, first for mothers and their infants, and then for all persons with AIDS and HIV.
17.We look forward in just more than three months to the start of the 13th International Conference on AIDS in this city.It is the first time that the conference is being held in a developing country, or in Africa.Our country has shown the world so much.It has shown the world the moral stature of a Mandela who emerged from 27 years in prison to lead us into our first nationhood.It has shown the goodwill and generosity of an oppressed nation that has forgiven its oppressors and included them in its vision of the future.We have shown the world that economic planning and industrial success can produce a model economy on the African continent.We have shown the world in our constitution that we aspire as South Africans to treat each other with dignity and respect and with equality in the fullest and most substantive sense of the word.In our constitution we aspire to the highest values expressed anywhere in any constitution, and in our daily lives we are beginning to show that we as South Africans can live up to these aspirations.
18.AIDS has called us to
many challenges of the last two decades.As a nation the epidemic
still calls us to our highest challenge.As people living with HIV
and AIDS, let us be at the centre of the call for moral in the
Mail & Guardian Editorial, February 11, 2000 (volume 16, no 6).
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