COSATU SUBMISSION ON HIV/AIDS TREATMENT, CARE AND SUPPORT

Submitted to the Health Portfolio Committee on

10 May 2000

1. Introduction

COSATU welcomes the opportunity to participate in the hearings on HIV/AIDS treatment, care and support issues. It is commendable that the Health Portfolio Committee ("the Committee") has taken an initiative in hearing stakeholder views on these issues. It also significant that the Committee is taking an integrated approach to HIV/AIDS: COSATU shares the view of other stakeholders that a holistic response is required which incorporates awareness, prevention, care and support, dealing with discrimination and stigmatisation, treatment, and research towards a vaccine or cure. The resolution on HIV/AIDS from the COSATU Inaugural Central Committee states that "worldwide AIDS has become one of the biggest threats and a major social disaster facing the working class. COSATU therefore commits itself to fight this killer disease with the same vigour and determination that saw the defeat of apartheid."

It is unfortunate that we only became aware of these hearings this week, which has limited our capacity to present a detailed analysis of our unions' experience and programmes and of what further measures need to be taken in dealing with the crisis by all stakeholders. We would like the opportunity to make a more detailed presentation to the Committee at a later stage.

HIV/AIDS will have exponentially increasing effects on our economy, in terms of the loss of many of the most productive members of the workforce who are often providers for extended families. The provision of adequate treatment and care will also entail a massive financial commitment, which will have to be factored into economic decision-making.

Our submission today will therefore look at HIV/AIDS with reference to unions and progress which has been made within the Federation; issues of disclosure, discrimination, and stigmatisation; improving public health care; accessibility and affordability of treatment and medication; and the relationship to socio-economic conditions.

2. HIV/AIDS and trade unions

Although we know that the virus affects people across race, class and gender, it is also clear that the effects are more harmful to the poorer members of our society. Those who have less access to health, nutrition, electricity and running water are likely to suffer more than well-off people who can afford expensive treatment. Our patriarchal society also means women are more vulnerable to getting infected than men. Their low economic status, coupled with the high rate of rape in our country, means women are less able to protect themselves from infection, as well as being less likely to benefit from treatment. While anyone can of course contract HIV/AIDS, it thus has a class, racial, and gender character, both in terms of infection rates and in terms of survival and quality of life for people living with HIV/AIDS.

It is thus of particular concern for us as COSATU since our membership is drawn from the constituency most at risk. Published statistics of national infection rates would on the face of it suggest that we may have as many as several hundred thousand members who are living with the virus in their bodies. While these statistics are obviously unverified, it is clearly a crisis situation. Infected workers have experienced discrimination in their workplaces and communities, a lack of proper care even where treatment does exist, It is a matter of priority for us that the rate of new infections be drastically slowed down and that government takes the lead in ensuring adequate treatment and care for people living with HIV/AIDS, while simultaneously pursuing more long term solutions.

In terms of the Federation's response, Phase 1 of the current HIV/AIDS Programme of Action began in October 1999 with the setting up of a Co-ordinating Committee and the launching of an Awareness Campaign. COSATU has held a conference on HIV/AIDS and has developed a programme for our members to tackle this issue. There have also been regional workshops and the dissemination of information on HIV/AIDS to workplaces. We have already trained a number of shopstewards and also produced a manual for our members entitled "COSATU Campaign Against HIV/AIDS: A guide for Shopstewards", which we are also distributing today.

COSATU has also been centrally involved in the Pfizer campaign for the lowering of the cost of diflucan (fluconazole) for the treatment of opportunistic infections affecting AIDS sufferers. A co-ordinator has recently been appointed to spearhead the Federation's HIV/AIDS work. Our Central Executive Committee convening next week will be holding further discussions around HIV/AIDS prevention , treatment, and support; and towards the end of this month (26-27 May) a workshop is being held with our senior leadership on the issue. Appendices 1 and 2 indicate for members' reference one of the resolutions which COSATU has taken on HIV/AIDS, from our Inaugural Central Committee in June 1998, and the Declaration on HIV/AIDS from our Special Congress last year.

Many of our affiliates, such as NEHAWU, SACTWU, and NUM, have comprehensive HIV/AIDS policies and programmes in their sectors. Examples of this are the HIV/AIDS focus weeks in provinces, information blitzing amongst our membership and communities, the training of peer educators within affiliates, condom distribution in workplaces and union offices, the negotiation of workplace policies to protect the rights of workers, and negotiation to re-instate the unfair dismissal of workers living with HIV/AIDS. However, there are huge challenges for us, as with any other stakeholder, in increasing our efforts both with respect to our membership and society at large.

3. Challenges in treatment, care, and support

3.1 Disclosure, stigmatisation, and discrimination

The lack of information around the disease has resulted in a stigma being attached to people living with HIV/AIDS. Many people are still not sure about how the disease is transmitted and their ignorance has led to fear. Because the perception is that the disease is easily passed on, many people would rather ostracize those they know to be positive than find out exactly what their own risks are. Those who publicly announce they are infected are then seen as a threat and a danger.

The tragic case of a KwaZulu-Natal woman, Gugu Dlamini, who was murdered after disclosing she was HIV positive is well known. There are numerous examples of people being beaten up for disclosing their positive status and even for being HIV/AIDS activists. This is an extremely worrying tendency as it discourages people from publicly declaring their status, often even discouraging people from being tested in the first place. We congratulate those people who have chosen to have themselves tested and to disclose their status.

However, there is not only ignorance of how the disease is transmitted. Few people are aware of how the disease develops and of treatments available to them. Also, many workers are still not aware of their rights in the workplace and unwittingly allow themselves to be discriminated against - either through being laid-off or through illegal testing. People are often tested, both by private companies and state hospitals, without their consent.

The current case of an applicant to SAA who was not employed on the basis of his HIV status has put this issue in the spotlight. In terms of relevant legislation, the Employment Equity Act prohibits direct or indirect unfair discrimination against an employee, in any employment policy or practice, on inter alia HIV status. It prohibits HIV testing of an employee unless such testing is determined to be justifiable by the Labour Court.

In terms of the Promotion of Equality and Prevention of Unfair Discrimination Act, although HIV/AIDS is currently not specifically listed amongst the prohibited grounds of discrimination, the Act stipulates that special consideration be given to its inclusion as a prohibited ground by the Minister. The Equality Review Committee is also mandated to, within one year, investigate and make necessary recommendations to the Minster in this respect. COSATU would urge that in view of the enormity of the crisis, HIV/AIDS indeed be included as a prohibited ground. Even in terms of the current situation, however, cases can still be brought to the courts in terms of unfair discrimination on the grounds of HIV/AIDS. In terms of the role of medical aids, the Medical Schemes Act prohibits discrimination on the basis of HIV status. There is, however, a need to assess the extent to which medical aids are providing adequate and affordable protection for people living with HIV/AIDS.

COSATU believes that it is of benefit to workers to discover their HIV/AIDS status. However, we support the prohibition contained in the Employment Equity Act, primarily because employers may abuse the information derived from their facilities to discriminate against employees. Public health institutions should play a major role in providing free access to testing, with appropriate pre- and post-test counseling.

We have already spoken about the stigma of HIV/AIDS and how this often results in people being ostracized from their communities. Many workers realise that disclosing their status will result in them being forced to cope with the disease on their own. Few employers have policies or programmes. This means that when a worker becomes sick or is dismissed from their employment because of their infection, they are sent home with very small pensions and no plan to care for them. Workers who come from rural areas have a particularly hard time, as ignorance about the disease, and therefore discrimination against sufferers, is often highest in those areas. Moreover, there are no facilities to care for these patients and community members often have to prioritise their own conditions, meaning there is no time to tend to the sick. Workers who develop AIDS are often literally sent home to die in poverty conditions. This is not peculiar to rural areas though. There are very few facilities in the cities to cope with AIDS patients, and the stigma still remains there, even amongst some health-care workers.

3.2 Improving public health care

Whether it is justified or not, there is a clear perception that the public health service is inferior to private health care. This is related to issues of lack of privacy, conditions of state hospitals, and treatment of AIDS patients. Added to this is the lack of affordable treatment and the impersonal environment of state hospitals.

The prejudices against HIV positive people are not limited to ordinary members of the public. There are also those within the health care profession who are ignorant of the disease and how it is transmitted. There is a lack of education of health care workers around how to deal with those who are infected. Often they project their own fears onto the patient so that those who go for help end up being discriminated against and getting inferior treatment. Very often people are tested for infection without any counseling or support. This is not unique to public health care but is exacerbated by the poor conditions of those facilities and the attitude of overworked and underpaid public servants.

Many state hospitals are in very poor conditions. People have to wait hours to see a doctor and are unable to build up a close relationship with that doctor because in the next visit they may have to see a different doctor. There is a lack of privacy and sympathy in public health care facilities. There have been reported cases of health care workers publicly announcing the HIV status of patients. Often poor people will raise enough money to go to private clinics because privacy is a key issue in dealing with the disease.

COSATU has noted an intended shift in policy emphasis in caring for people living with HIV/AIDS towards home-based care. We recognise the advantages of such an approach, particularly in the context of limited financial resources. However, home-based care can never be a substitute for the expertise and resources of the public health system. An excessive reliance on home-based care would also make home carers - who are likely to be disproportionately women - economically inactive. There does need to be proper training of family members and communities to offer appropriate care, but this should be as a complement to the public health system.

COSATU would urge the government to ensure that appropriate training is given to health care workers on all issues related to HIV/AIDS, including how to care for patients infected with the disease. Specific HIV/AIDS treatment and support should also become a compulsory part of any medical training. It is crucial that health care workers are seen to be breaking the stigma surrounding the disease.

COSATU unions are keenly aware of the institutional and structural crisis facing public institutions such as the public health care system. The recent Service Delivery Conference resolved that public sector unions must take the lead in ensuring transformation of institutions to make them efficient and responsive to people's needs, in line with the values and principles outlines in section 195 of the Constitution. The contribution of unions needs to be located within a broader developmental framework, particularly one which frees up adequate resources for adequate treatment, care, and prevention.

3.3 Accessibility and affordability of medication and treatment

Persons with HIV disease or AIDS are confronted with exclusion from an equitable share of health resources...You violate a person's humanity by testing him or her for HIV without consent, or by improperly divulging information about his or her health status. But the deepest violation or another person's humanity is to deprive that person of the means to remain healthy, to fight off illness and to live - or die - in reasonable comfort and dignity...Discrimination in the allocation of resources is the most debilitating discrimination of all.

Mr. Justice Edwin Cameron, person living with HIV/AIDS

Few working class people can afford the exorbitant costs of HIV/AIDS medicines that can treat and prevent opportunistic infections caused by HIV/AIDS, or which fight the virus directly (anti-retro viral). The drug Fluconazole, which is a key drug in treating opportunistic diseases such as cyptococcal meningitis and systemic candidosis (thrush), is sold for R57.00 for a 200mg capsule in the public sector. Given that a daily dose of 400mg is required, this would cost close to R114 a day. The annual cost of this drug would be about R41 000. Few workers earn enough to cover these costs and therefore have no access to this drug.

It is clearly in the interest of big business to hold onto drug patents in order to protect and increase their profit margins. Multinational and transnational companies are well aware of the economic constraints of people in sub-Saharan Africa. They have, however, consistently refused to make the costs of HIV/AIDS drugs affordable to the poor. Sub-Saharan countries, especially South Africa, are characterised by huge income inequalities. This means that while the disease continues to spread at an alarming rate, the majority of South Africans cannot afford treatment.

It is surprising that despite such global concern about the rate of increase in infection in this area, but at the same time little is done to make treatment available and accessible to these countries. We believe there should be a strong call from governments of these regions to force drug companies to significantly lower their prices, or to support those countries who manufacture similar drugs for lower prices. For example, if South Africa was allowed to import the generic fluconazole from Thailand, the national cost of treating 10 000 patients of cryptococcal meningitis would decrease from R226 million to R14 million per year.

The terms of reference of these hearings raised the question as to how the state can ensure that costs of medicines are lowered and that people with HIV/AIDS receive adequate treatment. COSATU tables the following recommendations in this regard:

* Multinational and transnational corporations

Government should take a leading role in the campaign to force big drug companies to lower their prices. This campaign is located within our struggle to build a more humane and equal society where we can realise the goal of giving a better life to all. We should reject all attempts to strengthen the position of the rich and increase profits at the expense of lives. Government must continue to take a firm stand on highlighting the immorality of expensive drugs to treat this epidemic, and mobilising countries of the South to demand the necessary changes in the international trade regime.

* Generic medicines

Government should actively explore the possibility and effectiveness of importing generic medicines. There are numerous examples (such as the one of fluconazole mentioned above) of the cost saving advantages of generic drugs. This would allow us to treat far more people than we are currently able to.

* Voluntary licenses, compulsory licenses and parallel imports

It is clear that we cannot wait for drug companies to develop the political will to make treatment drugs available at affordable levels. Government must urgently consider granting voluntary licenses to companies which could either import or manufacture these drugs locally at massively reduced costs. COSATU supports the utilisation of compulsory licensing and parallel imports to improve the affordability and accessibility of treatment for people living with HIV/AIDS.

* Increased health expenditure

Given the proportions of the crisis, the current health budget and those projected for the next three years are clearly inadequate. Over the past three years, expenditure on health has only grown by less than 1% after inflation, and this year's budget will see marginal or no real increase in health expenditure depending on what inflation rate materialises. In per capita terms, this obviously amounts to cuts in real health spending given population growth rates.

The fact that a chunk of last year's health budget and of the HIV/AIDS budget itself were not spent is highly problematic, but simply cutting the budget would not be the solution. COSATU believes that substantial and consistent real per capita increases in health expenditure are needed for the foreseeable future, and specifically that more resources should be targeted at HIV/AIDS work. The Committee has a key role to play in monitoring this expenditure to ensure that it is well spent and that the objectives are indeed met.

Treatment will indeed be costly, even with the co-operation of the pharmaceutical industry or access to relatively cheap drugs. To deny people living with HIV/AIDS access to treatment because of financial constraints, however, would be to condemn them to a miserable death when there could still have over a decade of productive life.

Even from a purely economic point of view, both the exponential nature of HIV infections and the astronomical costs of treatment and care in relation to prevention motivate for the rationality of higher spending in the current time period. Put simply, the money spent on changing the conduct of one individual in a way that avoids them contracting HIV is miniscule in comparison to treating and caring for that individual at a later stage, not to mention the other people who could be directly or indirectly affected by the same individual. This is an economic rationale for investing now in HIV/AIDS prevention rather than waiting for the crisis to grow in dimensions.

3.4 Socio-economic conditions

While drugs are an important part in coping with the infection and preventing and treating opportunistic diseases, it is well known that healthy life-styles serve to boost the immune system and build strong bodies which will help to resist infections. However, given the massive poverty and unemployment in our country this is very often not an option for working class people. The poor are forced to live in very harsh conditions. Many have no access to electricity and running water. They are forced to use coal stoves and walk long distances to collect water. Their diets are often poor, lacking in the vitamins and nutrients essential to building up their immune systems. Their conditions force them to continue working, whether in the formal or informal sector. This also makes it difficult for them to cope with the sometimes extremely unpleasant side-effects of HIV/AIDS drugs, even where these are available to them.

This suggests that a cross-sectoral approach is needed to deal with the crisis, combining preventative and curative approaches and also uplifting socio-economic conditions. As part of this, there is a need for a comprehensive social security system which would ensure those infected by the disease are given adequate care provided by the state. This system must include adequate training of health care providers and a campaign to end discrimination and stigmatisation of people living with HIV/AIDS. An important aspect of this would be the introduction of a Basic Income Grant which would give people at least a minimum resource flow to subsist on, and somewhat improve the conditions of people living with HIV/AIDS and their families.

The creation of quality and sustainable employment would be a key component of improving people's quality of life, reducing their likelihood of contracting HIV as well as enhancing the capacity of sufferers to cope with the disease or of family members and communities to support people living with disease. A comprehensive strategy for dealing with HIV/AIDS thus must have job retention and creation as one of its planks.

4. Conclusions

COSATU believes HIV/AIDS is one of the most important political issues facing our society today. Our struggle was about qualitatively changing the lives of people. This must be based on the vision of creating a caring society where all citizens can exercise their constitutional rights to health, housing, safety, and a clean environment. We need to eradicate the scourge of poverty and unemployment which is undermining this vision. We need to make sure the poorest of the poor are given access to adequate services and basic rights such as nutrition and shelter.

Part of this struggle is about changing the way we treat those who are poor or sick. We are committed to building a caring society where we ensure that we look after our people. At the same time however, we need to empower people to be able to take care of themselves. We cannot afford to perpetuate a society based on massive inequalities. We believe the government has a great challenge ahead of it in ensuring that access to life-saving treatment, a humane and caring society and education and information are all part of peoples' daily lives.

Of course there needs to be an ongoing interrogation of the validity of mainstream international opinion with respect to HIV/AIDS, as with any other aspect of policy, and the efficacy of current approaches. In pursuing these debates, however, we need to reinforce the progress which is gradually being made, particularly in terms of people's awareness of the cause of the disease changing people's sexual behaviour. COSATU believes that considerable progress has been made by both government and civil society in raising awareness of HIV/AIDS and how to prevent it amongst the masses of South Africans. As discussed above, ignorance and prejudice remain, but the link finally seems to be getting through that people can avoid HIV/AIDS through responsible sexual practice. We need to ensure that in the way we handle current debates, without glossing over critical issues, that we do not undermine this crucial message.

We believe that COSATU together with NGOs and CBOs involved in the HIV/AIDS issue have a crucial role to play in fighting HIV/AIDS. There are powerful vested interests which will have to be confronted in this, notably multinational pharmaceutical companies, and we need maximum solidarity in overcoming these obstacles. COSATU, government, and various other stakeholders have a common interest in turning the tide of HIV/AIDS, and we should be in the trenches together in taking a holistic approach to prevention, treatment, and care.

Appendix 1: Resolution on HIV/AIDS from Inaugural COSATU Central Committee, 22-25 June 1998

1. Worldwide AIDS has become one of the biggest threats and a major social disaster facing the working class. COSATU therefore commits itself to fight this killer disease with the same vigour and determination that saw the defeat of apartheid. There is a dire need for education on AIDS awareness, including:

* What is it?

* How is it transmitted?

* How to avoid it?

* Consequences thereof?

2. Government should intensify its HIV / AIDS awareness programmes, including an intensification of the fight to end discrimination against those who become HIV positive.

3. Unions must embark on a campaign to compliment government's initiatives.

4. There should be an intensification of joint programmes with employers to provide information and advise to all workers in all institutions and especially in the rural areas.

5. There must be time off for education programmes.

6. Existing resources of NGOs must be used.

7. Government must provide funds and resources, including the establishment of government hospices and the counseling of care givers.

8. There must be joint programmes between management and shop stewards or workers.

9. Unions must campaign for insurance companies to fund education programmes on HIV and AIDS. There should be no discrimination by insurance companies against AIDS sufferers. There should be no undue increase in costs of benefits due to non-discrimination.

10. Organise sex education for all.

11. Hold consultative meetings with stakeholders on education programmes in schools.

12. ABET centres must be used to disseminate information.

13. Government should subsidise the costs of medicines to assist the poor.

14. Research must be intensified for an HIV / AIDS cure.

15. Government policy should ensure that medical companies do not profit from HIV / AIDS.

16. There should not be discrimination against people/workers who have contracted HIV / AIDS.

17. There should not be HIV / AIDS tests for purposes of employment.

18. Proper provisions relating to core schemes, medical aid, provident fund and insurance schemes to take care of AIDS sufferers must be established.

19. Campaign against the discrimination and loss of benefits suffered by HIV workers. This should be negotiated at national level and put to NEDLAC.

20. We must struggle to see to it that the SADC Code on HIV / AIDS and Employment is implemented in Southern Africa.

21. Public Works Programmes be prioritised on communities that are hard hit by the AIDS epidemic, as one of the attempts to counteract ravaging of local economies.

22. Investment arms of trade unions should apportion a specific percentage of their annual income for the AIDS programme to be embarked upon.

23. Government and private sector must develop, promote and fund comprehensive, all inclusive research into finding a cure for AIDS.

24. Traditional healers must be allowed to participate on an equal basis in the search for a cure for AIDS.

25. Adopt code of good practice and popularise and implement it. Shopstewards must monitor progress of the resolution taken.

Appendix 2: Declaration on HIV / AIDS Adopted by COSATU Special Congress, 20 August 1999

This Special Congress of COSATU notes the relentless advance of HIV and AIDS since the 1997 Congress. 3,5 million people in South are infected with the Human Immuno-deficiency Virus (HIV). Life expectancy in South Africa will reduce to 40-45 over the next ten years and health care costs will be beyond the capacity of survivors to pay for. It is now clear that publicity and condom distribution, though important, are not enough. This requires a new approach and strategy, based on a partnership between government and civil society in which the organised working class should play a leading role.

Against this background, Congress adopts the following:

1. HIV / AIDS to be declared a national emergency by the government.

2. COSATU will run a systematic education programme both on prevention and to raise awareness amongst COSATU members of the information about HIV / AIDS treatment and care.

3. COSATU will develop and distribute information and training packs for shop-stewards and union leaders which include guidance on giving positive assistance to workers living with HIV / AIDS affected by discrimination.

4. It will develop, with the assistance of specialist AIDS organisations, counseling and other services to union members and staff.

5. COSATU will engage Bargaining councils on the issue of funds and to ensure that Sector Education and Training Authorities are linking education and the issue of HIV / AIDS.

6. COSATU will continue to work with the Treatment Action Campaign to campaign:

* in support of the government's progressive legislation on medicines;

* against multinational pharmaceutical companies which make huge profits on medicines;

* for COSATU's existing policy on accessible primary health care and basic needs such as clean water, critical in prolonging the life of people living with HIV / AIDS.

7. COSATU will fight to ensure that the Minimum Benefits under the Medical Schemes Act provide affordable and effective treatment benefits for people with HIV / AIDS.

8. COSATU will continue to work in the most vulnerable sections of the working class such as transport workers, migrant workers, and workers in the single sex hostels should be intensified.

9. We re-affirm the Exco decision that, as part of fighting the silence of those who are living with HIV / AIDS, COSATU will encourage its leadership and members to voluntarily take HIV / AIDS test and break the silence. A new culture of openness will be encouraged, including encouraging parents to talk openly to their children, friends, and relatives about this epidemic and the need to use condoms.

10. COSATU will campaign for provision of a supportive environment for workers and people living with HIV / AIDS. It will support the rights of people living with HIV / AIDS to confidentiality.

11. COSATU will continue to fight against discrimination based on any unfair grounds, including HIV / AIDS status. In this regard, COSATU will make a submission to the Equality Legislation, and call for the improvement of the Employment Equity Act to protect the rights of people living with HIV / AIDS.

12. A more detailed COSATU policy must be developed, to be tabled at the next central committee meeting. Such a policy must also relate to the bigger question imposed by the epidemic given our poor social security net. COSATU must carry out a study on the socio-economic impact the epidemic will have on the country. This should be linked to issue of affordability and availability of drugs such as AZT that prolong the life of those carrying the disease.

13. For this programme to succeed, COSATU must invest both human and material resources. The Health and Safety unit of the federation, must co-ordinate the programme.