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HIV/Aids battle: Big challenges still ahead

By Moloto Mothapo

The Treatment Action Campaign (TAC), COSATU and other civil society organisations have been campaigning for people who need HIV/AIDS drugs to have access to them. The TAC's court battle to force the government to provide these drugs was a climax of this titanic struggle.

TAC general secretary Mark Heywood tells The Shopsteward of other challenges facing his organisation, its relationship with COSATU and how to deal with the pandemic in South Africa.

What is your reaction to the cabinet's recent sudden turnaround on AIDS policy?

TAC has warmly welcomed the new position of the Cabinet, particularly those aspects that deal with the treatment of HIV infection and which recognize that treatment works and that the major barrier to making it available to South Africans is its price.

We are fully committed to HIV prevention but have always felt that prevention efforts will improve when there is an incentive for people to voluntarily test for HIV, learn their HIV status and change their behaviour. Access to treatment is that incentive. We have publicly said that there must now be unity behind this programme and the challenge facing COSATU, and the TAC particularly, is to get the Cabinet to move to the implementation of the new policy.
That is why a National Treatment Plan now becomes so important.

Government has been doubtful as to the efficacy of antiretroviral drugs (ARVs)?

There is no question about the efficacy of ARVs. They would not be registered in South Africa if they did not work. Indeed, the Medicines Control Council (MCC) can only register drugs if they are proven to be safe and effective. There has been a mountain of research on antiretroviral drugs, including Nevirapine, which proves conclusively that they work.

In industrialized countries, hospices for people with AIDS have been closed since the advent of ARVs. Recently, I visited Sweden and almost every person with HIV infection uses these drugs when they become clinically indicated. In Brazil 110,000 poor people use these medicines.

As with many medicines, they are difficult to take, particularly when they have to be taken every day for the rest of your life, even when you are well. Some people do suffer side effects - and in some cases these are very serious. But the challenge is to make people aware of what is involved in taking these medicines. What we should not be doing is stigmatising the medicines by claiming they are poisonous.

Recently comrade Sarah Hlalele, an active member of the TAC whom you described as a hero in the AIDS struggle, died, allegedly because of an intake of anti-AIDS drugs. How true is that?

Yes, it is true that Sarah Hlalele died on 14 April as a result of severe side effects caused by the ARVs she was taking. We have not tried to hide this. The problem with Sarah was that she lived in Sharpeville and the doctors treating her were based at Chris Hani Baragwanath. Sometimes it was difficult for her to travel for check-ups.

But, more importantly, Sarah became terribly upset by the way leaders like Peter Mokaba stigmatised the medicines she was taking. She did not want to believe that she was experiencing side effects and I think that she left it until too late before she tried to seek help.

The lesson that we must learn is that side effects can be managed but doctors and patients must be taught how. It is also important to remember that when Sarah started taking these medicines, she was already terribly ill with AIDS. In fact, when I first met her in July 2001, I felt that she would not live for more than a few weeks. The medicines definitely improved her health, but it may have been that her immune system was too badly damaged to cope.

What about speculation that this incident could impact badly on the government's full rollout of programmes to treat HIV/AIDS?

The issue of side effects should not impact badly on rolling out antiretroviral treatment. We have known about side effects for as long as we have known about these drugs but not all people suffer these side effects. The key things are patient and doctor education. I do think Sarah was a heroine and this is what she would have wanted us to learn from her death.

Some highly disturbing AIDS dissidents' documents have been circulated and there are dissidents' websites which are believed to have influenced government's stance on the issue of HIV/AIDS. How have you managed to defend the orthodox scientific view?

The TAC has tried very hard to defend the orthodox scientific view that HIV causes AIDS. Together with leaders from COSATU and people like Archbishop Ndungane, we have tried to make sure people continue to get accurate information, but it has not always been easy. HIV naturally causes denial in people. Nobody really wants to believe that they are infected with a life-threatening virus that may kill them.

So, when respected political leaders question the existence of this virus, their natural inclination is to want to believe what they hear. That is why this 'debate' has been so damaging. People start behaving again in a way that places themselves and others at risk. It will undoubtedly have caused people to be infected with HIV who might have been protected.

There is still a lot of education about HIV we all need to do, not just because of the dissidents but because people have a right to accurate information about an issue that is of such great importance. I think we must start ignoring the dissidents - they are really just a group of right-wing discredited scientists whose views lack scientific or medical support.

The 2001 government's court battle in defence of the Medicines Act, backed by COSATU, TAC and other organisations, showed a unity of purpose war. But after that victory that unity appeared to crumble?

The unity in the court battle against the Pharmaceutical Manufacturers' Association (PMA) had very important lessons. It showed that South Africa still has a great deal of moral authority in the world and that when we unite and stand up for something as simple as the right to affordable health care, the world will fall behind us.

It is a pity that the victory over the PMA was so quickly squandered, firstly by conflicts over treating people with AIDS in South Africa (such as over mother-to-child transmission) and secondly by a lack of urgency within government to bring this law into effect.

It is over a year since the PMA pulled out but the law has still not been promulgated. This means pharmaceutical companies can still profiteer from many essential medicines and that ordinary people continue to find medicines too expensive. The pharmaceutical companies must be laughing at us!

We hope the government will soon enact this law and will not give in to renewed behind-the-scenes pressure from these companies or from the United States and the European Union.

How do you think COSATU's backing of this AIDS medication battle contributed to the cause?

COSATU's firm position in the battle for treatment for people with HIV has been extremely important. This is an area where COSATU's leadership has been firm and unwavering. When we started the TAC at the end of 1998, it was a small and unknown campaign and therefore it was important that powerful established organisations like COSATU supported some of the key messages that we were trying to get across in society.

Even as TAC has grown, the relationship with COSATU has remained invaluable. COSATU is also important because it is deeply rooted in poor people and communities. These are the people who most need to know about HIV prevention and treatment. But I still think COSATU has a long way to go if it is to really impact on the behaviour of its membership. Commitment at a leadership level is not enough.

The COSATU Central Executive Committee recently invited you to provide it with information on HIV/AIDS. In your briefing you mentioned other challenges in the battle against the pandemic - can you summarise them?

I think the key challenges in the anti-AIDS battle are:

To get the Cabinet to implement the government's new programme and to accept the idea of a National Treatment Plan;
To organise a mass campaign supporting voluntary counselling and testing;
To use COSATU's leadership in society to advocate for men in particular to change their sexual behaviour and respect the rights of their wives and partners when it comes to safer sex. Gender inequality in sexual relationships is a big cause of HIV infection, particularly in women. COSATU can help to change this.

I still do not think there is enough openness about being infected with HIV in COSATU. I do not know any leader in COSATU or its affiliates who offers leadership as a trade union leader with HIV or AIDS.
Of course, there are many other challenges because HIV is linked to many of the problems in our society. The battle to control HIV must be linked to strategies that rapidly lift people out of poverty and improve their lives and the control that they have over their lives.

TAC recently offered to work closely with the government to implement last year's court ruling. How are you going to that and what can be expected?

The TAC has a lot of support amongst both doctors and nurses, as well as within communities. We could help government with training of health workers about MTCT programmes and training of counsellors but also with campaigns to destigmatise HIV. We have spoken to senior government officials saying that we want to help with these but we have not had a positive response so far, but we will keep trying.

You seem to agree with view that AIDS vaccine research is not getting necessary financial backing from world pharmaceutical firms - could there be a reason for this?

We think the reason for the lack of investment by the private sector in vaccine research is that, just as with many other medicines, unless there is a profitable market, companies are not prepared to put up any money. This is the problem with capitalism when you come to health care. The development of new medicines, including vaccines, must be much more of a public responsibility and not left to companies whose main aim is to make money.

For example, there is a lot of research to show that almost allnew investment into medicines is going into lifestyle diseases which mostly affect people in rich counties, such as hypertension and erectile dysfunction. Viagra is one of the world's blockbuster drugs - not drugs for TB or illnesses of the poor! There is a lot more research being done into HIV vaccines but charities and governments are mostly driving it.

Can you expand on the court battle that the TAC is intending to stage against pharmaceutical companies?

The TAC wants to put pressure again on companies to reduce prices, particularly on ARVs. At the moment, we are working on a complaint against several multinational companies that we intend to file with the Competition Commission, which alleges that the companies are abusing their patents, which give them market exclusivity for up to 20 years, to excessively price medicines.

The result is that medicines become too expensive even in the private sector, but are totally unaffordable for the public sector.

It is quite a complicated case and a lot of research has to be done to show that the companies are actually abusing their dominant positions. This means we need accurate facts and figures of the costs of developing medicines, the costs of their components, their actual prices in South Africa and other countries and the profits the companies make.
But we know we are right and the case will soon begin. We will let you know more about it once it has started. We do not want to give the game away to the pharmaceutical companies in advance!

COSATU CEC's position paper on HIV/AIDS pledged to work hand-in-glove with TAC on campaigns that include awareness, prevention, care, treatment and fight against discrimination. How critical does the TAC view these campaigns?

The epidemic is so big that every organisation with a constituency needs to be trying to influence the behaviour of its followers. TAC does not claim to have the monopoly over campaigns on treatment or prevention. We are just trying to catalyse awareness and a change of policy so that there are proper plans to save the lives of people who have HIV. One challenge for COSATU, however, must be to make sure that the affiliates are driving proper campaigns. We know that some workers, such as miners and truck drivers, are especially at risk.

Researchers have predicted a disturbing number of deaths due to AIDS over the next 20 years. Could your vigorous campaigns change the current trend and impact on the predicted figures?

It is important to recognise that campaigns can be successful. If we were serious enough, we could drastically cut the number of new HIV infections from tomorrow. If we were willing to spend enough money on peoples' lives, we could also cut the number of predicted deaths.
It is important to remember that many of the statistics we quote about the future are based upon projections. Projections can change when there is an effective intervention.

What do you think needs to be done to control and treat HIV/AIDS in the workplace, especially in the context of shocking recent statistics of close to 90 percent infection among mine workers in the Welkom mine?

A great deal needs to be done to control and treat HIV in the workplace. Big business has been warned about the impact of HIV for many years and has had the resources to implement education and prevention programmes - but have resisted this. Instead, they try to reduce the impact by things like pre-employment testing, cutting benefits and dismissing workers with HIV.

Now there needs to be unity between employers and trade unions in the interests of productivity and employment, but also obviously in the interests of individual workers and their families who may have HIV. The workplace is a place where there could be a big impact on preventing HIV, but we must also look at treatment.

The NUM, for example, really should be campaigning against the decision of the Chamber of Mines, Anglo American particularly, not to continue with their treatment programme, including antiretrovirals for mine workers. In the workplace, just as in society generally, treatment means a range of approaches that includes access to testing, treating opportunistic infections and the use of ARVs.

Perhaps there should be a summit between business and labour to agree a common protocol on this. Perhaps it is an issue that COSATU could raise at the Millennium Labour Council?

Lastly, are allegations that TAC gets funding from pharmaceutical companies true?

The TAC states in its constitution that it will not accept money from pharmaceutical companies and we are true to our constitution, so much so that we terminated one funding contract because we felt the donor, the European Network of Positive People, had too close a relationship with pharmaceutical companies.
As we have said many times, our books are open, our audits are fully up to date and all income and expenditure is being properly accounted for. We want to keep our independence and that is why we do not take pharmaceutical company money.