HIV/AIDS: hearings

Meeting report

HEALTH PORTFOLIO COMMITTEE
10 May 2000
HIV/AIDS HEARINGS

Documents handed out
Glaxo Wellcome submission
Médecins Sans Frontières
COSATU's submission on AIDS Campaign
A guide for shop stewards on AIDS Campaign

SUMMARY
Glaxo Wellcome has made a preferential price offer through the State Tendering Authority to the South African government. A 75% reduction on world prices was offered. No response has been received to date although the offer has been open for a lengthy period. They stated that the price of AZT and its counterpart generics are nearly the same. It is a question of government accepting the various offers made and formulating a clear and decisive policy towards all the other contributing factors.

Treatment Action Campaign said that they did not want donations from companies such as Pfizer. They wanted sustainable price reductions for all relevant medication. There is still large-scale "treatment illiteracy". They advocated for transmission of treatment information throughout the country. Another concern is the callous and discriminatory treatment by health workers towards HIV patients and the basic lack of knowledge by health workers on how to treat and counsel people living with HIV/AIDS . TAC noted that most participants of clinical trials do not know what drug they are taking to cure which illness.

Médecins Sans Frontières noted the importance of competition in lowering drug prices. Competition through compulsory licensing and parallel importing has the ability to lower the prices of these drugs.

COSATU's submission looked at the union's programs to address the HIV/AIDS crisis. The issues of disclosure, discrimination and stigmatisation, improving public health care, the accessibility of treatment and medication and the relationship to socio-economic conditions were raised. The priorities of the union include slowing down the rates of infection, ensuring that government takes the lead in ensuring adequate treatment and care for AIDS sufferers and eliminating discrimination against infected workers. COSATU believes that job creation is a key element in improving the quality of life of sufferers and their families. They advocate a Basic Income Grant and improved social welfare to provide a subsistence income to sufferers and to ensure they are provided with treatment.

MINUTES
Glaxo Wellcome Pharmaceutical Company
Ms Vicki Ehrich, a director at Glaxo Wellcome, read their submission to the committee. She explained that Glaxo Wellcome is a pharmaceutical company, amongst the biggest in the world, involved with extensive research. The company has invested in South Africa employing a workforce of about 600 employees. It spends large amounts on HIV/AIDS research and is well known for the drug AZT. This drug is used in reducing the transmission of HIV from an expectant but infected mother to an unborn child. Glaxo Wellcome is committed to making drugs affordable to developing countries. Glaxo has made a preferential price offer through the State Tendering Authority to the South African government. A 75% reduction on world prices was offered. No response has been received to date. The offer has been open for a lengthy period. The constant focus on the price of AZT as the main issue hindering the halt of HIV/AIDS is confusing and misleading. This is not the primary issue. The price of AZT and its counterpart generics are nearly the same. It is a question of government accepting the various offers made and formulating a clear and decisive policy towards all the other contributing factors.

Company is presently working with UNICEF to help prevent vertical transmission and is a co-founder of the UNAIDS Access to Treatment pilot project in a number of developing countries.

Questions
Dr E E. Jassat (ANC) asked how the donation programme worked. Ms Ehrich explained that the donations programme works by a mechanism based on a country's commitment to the programme. The country's selection for preferential financing is based on this commitment. She however specified that the company is merely a partner in this and does not choose the countries for the programme themselves.

Another committee member asked in which areas of the country is the training of nurses being done. Ms Ehrich informed her that there are currently four trained nurses involved in the training of health workers and nurses, one of whom is in Kwa Zulu Natal and two in the Western Cape. This response led to a further enquiry on the effectiveness of these four in catering for the extensive need in the country. Ms Ehrich explained that these four reach out quite extensively but as to whether the extent covered is adequate is still a question to be answered.

Ms Ehrich was asked for her company's policies on clinical trials - were participants fully informed about everything including possible effects. Ms Ehrich explained that consent forms for clinical trials are available in English, Afrikaans and in one black South African language deemed applicable by the researcher. She pointed out that it is the researchers, not the company itself, who recruit the participants for the clinical trials.

Dr S Nkomo (committee chairperson) wanted to find out whether the participants of clinical trials continue to benefit once the clinical trial was over. He asked what happens to those participants that were already hooked on a particular type of drug at a time when the company wanted to withdraw from that trial. Ms Ehrich informed the committee that as long as the researcher dealing with that particular participant feels that there are clinical benefits from that drug, the clinical trial is continued for that participant. Withdrawal from a trial occurs in cases when there is proven need for change and in this case support towards a participant ends.

Ms M Njobe (ANC) asked whether some of the drugs used in the country such as the antiretrovirals could be imported from other sources at lower cost. What contribution is the company willing to make in terms of assistance in medical infrastructure development. Ms Ehrich responded that the South African government buys millions of rands worth of drugs through a very effective tender system, COMED. This system is highly effective in purchasing least-cost drugs. She went on to say that the company is very willing to be a role player in the country and as such has entered into social assistance initiatives.

Ms Mnumzana (ANC) enquired how education of the company's own staff members benefits victims. Ms Ehrich explained the company's staff is trained on home-based programmes with the view that they can in turn impart this knowledge to their peers.

Ms S Kalyan (DP) asked if there has been any indication that the South African government has accepted the price of AZT. Ms Ehrich responded that there has been no acknowledgement of the acceptance of the price from the government.

Dr Nkomo asked if the price at which AZT is sold in South Africa is affected by the dollar fluctuations. Ms Ehrich emphasised that the government would not adhere to such an agreement and is firm that the agreed-upon price be fixed for a period of at least a year so as to not let dollar fluctuations affect the drug's price.

Treatment Action Campaign (TAC)
Members from People Living With AIDS (PLWA) narrated to the committee the various unpleasant experiences they had encountered since becoming HIV positive. Accusations were made against the Department of Health for the bad services offered in the hospitals. The attitude of the health care workers was perceived to be callous, uninformed and disinterested in those patients presenting positive with HIV/AIDS.

One mother narrated her experience of losing a child to AIDS. She explained that the human rights of people living with AIDS should be at least the same as other patients. She informed the committee that she wanted to provide a voice for those who could not speak for themselves, the children, who have done nothing wrong. She lamented how taking her own child to Red Cross hospital seemed to have made things worse for her baby. Upon voluntarily informing the doctor of her child's HIV status, she was told to take the child home as there was nothing they could do for her despite her extremely high temperature. Her baby ended up dying with no treatment.

One man talked about the unfortunate treatment he received from his community He explained how health workers extended this type of treatment. He complained about the behaviour of health workers in a clinic near his home who upon realising he was HIV positive, told him to go home and not to talk to anyone. He stated that he has rights like everyone else and should be treated accordingly. He revealed that he has had resistant thrush for a while now and that he has learnt that a pharmaceutical company called Pfizer has the cure for this but at a price unaffordable to him especially since he is unemployed. He advocates for government assistance for people like himself who cannot afford the drugs.

Another female member who discovered her HIV status last year, revealed how health workers informed her that there was nowhere for her to get treatment. She narrated how she had to move from one clinic to another doctor in search of treatment, the latter of which gave her some vitamins and Panado and informed her that the other required drugs are too expensive for her. She complained about the ignorance of nurses in the clinics as they have failed to advise her on how and where to get treatment. As such, she strongly advocates for government education of Health Workers as well as urging pharmaceutical companies to reduce drug prices to levels which people like her can afford.

The fourth speaker informed the committee that she is currently undergoing a clinical trial. She pointed out that while governments are debating about drug prices, people are dying. She wondered why only certain people are chosen to be on the clinical trials whereas those who really need some form of help with the disease are actually dying. She mentioned instances in which some doctors may take a patient off a particular clinical trial citing unaffordability. She questioned why only a few people have access to the required drugs.

The final speaker from Grahamstown in the Eastern Cape complained that that province is doing very little for people with AIDS. She fell ill and was admitted to a clinic last September. A number of tests revealed her HIV status and was shortly after discharged without treatment. She finally came to Cape Town's Groote Schuur Hospital where she received the same type of dismissive treatment.

The TAC presenter explained to the committee that TAC is not funded by a drug company or by the government and as such is completely independent. They realise that the price of HIV/AIDS drugs is too high and as such they campaign for price reductions by pharmaceutical companies. She went on to explain that TAC believes that HIV expectant mothers should have their unborn children treated for the disease as it is every woman's right to give birth to a healthy baby. TAC members advocate for information openness, as it is believed that it can help reduce the extent of new infection.

TAC acknowledges the importance of 'treatment literacy' but states that very little is being done to educate people on treatments such as the antiretrovirals and drugs for HIV related opportunistic illnesses. TAC members believe that whether people can afford treatment or not, they have the right to information on possible treatments and in so doing reduce the number of people that die from HIV as a result of ignorance of basic medicines such as those used to treat thrush. It is strongly believed that 'treatment literacy' can also help reduce the extent of HIV infection as well as ease things up for those people living with AIDS.

The presenter emphasised that TAC advocates for price reductions that the government can sustain. He recalled the PLWA conference last year, where most people agreed that they had received similar callous treatment at hospitals due to their HIV status. He explained that the cry is not for special treatment but merely equal treatment. He urged the Department of Health to make its drafted guidelines on treating opportunistic infections available since as soon as these are treated, the longer the HIV patients can live. The presenter urged drug companies for drug price reductions to affordable levels, especially AZT, which was justified by the fact that these companies have made billions of rands out of HIV patients' misery.

The TAC representatives raised the issues of parallel importing and compulsory licensing and it was argued that the government should use the patent act to bring forth compulsory licensing of drugs that cure opportunistic infections. The presenters also raised the issue of informed consent for clinical trials. It was discovered that amongst the participants at the PLWA conference last year, thirty people were on clinical trials out of which only one knew what treatment was being used to tackle which particular infection. This raised the question as to whether this is really informed consent. Finally, the costs to drug companies in developing a particular drug should not be classified information but be made available.

Questions
Ms Malumise (ANC) enquired what the feelings of TAC were towards the Pfizer donation. TAC responded that the donation was for a particular form of meningitis, which is not the most common problem, especially when compared to opportunistic infections such as thrush. As such, they feel that if Pfizer wants to give the drug fluconazole for free, it should do so for all opportunistic infections.

Ms Njobe (ANC) referred to TAC's great concern for the treatment of an unborn child (with an HIV infected pregnant woman) and wondered whether there are similar levels of concern for the expectant mother and what the benefits are to her, if any, of treating her unborn child. A presenter replied that there are benefits to the mother as she is giving birth to a healthy baby.

Dr S J Gous (NNP) recognised that there was much talk on lowering the price of the drugs and as such wanted some sort of definition of an affordable price considering that as demand for these drugs grow, the price must be able to break even for the pharmaceutical companies. One of the presenters answered by saying that price is a serious issue and affordable is not something that can be measured simply but could be researched by economists.

One committee member wanted to know whether the treatment in public hospitals is merely bad or is actually discriminatory towards HIV patients. A TAC presenter attributed the poor quality of treatment to either a lack of knowledge or insufficient manpower. He noted that the country spends much money on defence and hence suggested that more money should be spent on health with an emphasis on educating health workers.

The same committee member asked about TAC's feelings towards offering an HIV test to all clients attending clinics and that their results should be given to the client rather than only to the government. The TAC presenter agreed that this would be good but a lot of effort would have to be made to reassure clients that the results of the test would not lead to discriminatory treatment against them by health workers and the community at large.

When asked by another committee member what TAC felt about clinical trials as being a means by which HIV patients could access treatment, one presenter responded by saying TAC supports clinical trials as they are scientifically necessary and not that it lead to access.

Dr Jassat (ANC) commented on the donations programs by saying that through them South Africa is not asking for charity and does not want to be a beggar but that these large drug companies have invested and reaped so much from the country. As such, it would not be so bad to say that in times of crisis, give a little back to the country.

The TAC presenter, Mr Zackie Achmat, disagreed saying that TAC did not want donations from companies. They wanted sustainable price reductions for all relevant medication.

Médecins Sans Frontières
The presenter, Mr Toby Kasper, raised the issue of drug price and the effectiveness of competition in reducing these prices. The average price reduction of a particular drug over time with competition was 78.8 percent compared to 17.5 percent without it. He stated that compulsory licensing and parallel importing were ways of achieving competition. The presenter went on to look at the costs of research and development and compared these costs to that of sales. He stated that pharmaceutical companies should reveal their cost figures as without them, it would not be possible to assess whether the drug can be acquired at a lower cost or not. MSF's focus is to achieve price reductions on drugs so as to help prevent South Africa from losing a quarter of its workforce.

Questions
Ms Njobe (ANC) noted that Mr Kasper had said that the government had legal tools to deal with the provision of drugs at affordable prices. She stated that drug companies seem to lock these legal tools. The presenter replied that there are provisions to request for compulsory licensing.

Another committee member enquired as to why despite having the legal tools they have not been used up to now. Furthermore, what should be done in the interim as one cannot wait for the government to reduce prices.

Mr Kasper stated that they do not have to wait for court cases for price reductions. In the interim, they can aim at getting drugs to people to cure the opportunistic infections. He went on to state that if the government is going to commit to bringing down prices then the processes of building infrastructure and training doctors on how to provide antiretrovirals should begin as this requires time to complete. He also stated that from past experience it is evident that the government can save greatly through the use of generics.

COSATU
Ms Fiona Tregena gave a brief outline of COSATU's AIDS campaign but referred members to their written submission for a more detailed analysis (see document)

Conditions of Poverty and joblessness related to HIV/AIDS
Ms Tregena submitted that the effects of the virus are more harmful to the poorer members of society, who have less access to health care, nutrition and cannot afford adequate treatment. The priorities of the union include the slowing down of the rates of infection, ensuring that government takes the lead in ensuring adequate treatment and care for AIDS sufferers and eliminating discrimination against infected workers.

COSATU are currently in Phase 1 of their program which began in October 1999 when a Co-ordinating Committee was set up and an Awareness Campaign was launched. A Conference as well as regional workshops to inform members has been held. Shop stewards have been trained and a manual has been produced.

Challenges in treatment, care and support
Many workers are not aware of their rights in the workplace and may in ignorance allow acts of discrimination against them such as dismissal or illegal testing. Workers are often tested by private companies or state hospitals without consent. The current case of the applicant to SAA who was subjected to an illegal pre-employment test is a case in point.

The Employment Equity Act prohibits direct or indirect unfair discrimination, in any employment policy or practice, on HIV status. Testing of an employee is prohibited unless found to be justifiable by the Labour Court. The Promotion of Equality and Prevention of Unfair Discrimination Act stipulates that special consideration be given to HIV/AIDS as a prohibited ground by the Minister. When it becomes subject to review within a year, COSATU will recommend its inclusion. Although COSATU believes it is of benefit to members to know their HIV/AIDS status, they support the prohibition of testing in the EEA because they believe employers may use the information to discriminate against employees.

State hospitals are in poor condition and this adds to the perception that the public health service is inferior to private health care. COSATU has noted an intended shift in policy to home-based care for sufferers of HIV/AIDS. While they do recognise its advantages COSATU believes it can never be a substitute for the expertise and resources of the public health system. It also recognises the inherent danger that the main home-care givers will be women. This will leave them unable to work and economically inactive.

COSATU believes that the contribution of unions needs to be located within a broader developmental framework, one that frees adequate resources for adequate prevention, care and treatment.

COSATU realises that it is in the interest of big business to hold onto drug patents to protect and increase their profit margins. But this means that the majority of South Africans cannot afford treatment. The following recommendations are made:
-There should be a stronger call from governments in Sub-Saharan countries to force drug companies to significantly lower their prices.
-Governments should actively explore the possibility and effectiveness of importing generic medicines.
-COSATU supports the utilisation of compulsory licensing and parallel imports to improve affordability and accessibility to treatment.
-Substantial and consistent real per capita increases in health expenditure is needed for future health budgets. More resources should be targeted at HIV/AIDS work.

A cross-sectoral approach is needed to deal with the AIDS crisis, combining research on prevention and cure of the disease and addressing socioeconomic conditions. The poorer people live in harsh conditions, which makes it difficult to build up a strong immune system to fight the side effects of the drugs.
COSATU recommends:
-A comprehensive social security system that would ensure that those affected are given adequate care by the State.
-The introduction of a Basic Income Grant that would give people a minimum income to subsist on and improve the living conditions of sufferers and their families.
-Creating sustainable employment would be a key in improving people's quality of life.

Discussion
Mr Neil Coleman, Co-ordinator of COSATU's Parliamentary Office, cautioned members that COSATU is not an expert on AIDS and that they had not had sufficient notice of the meeting to investigate the impact of the program on different sectors and different members.

Dr Rabinowitz (IFP) suggested that employers institute an obligatory program of testing at the workplace and enforce non-discrimination directives. She suggested this would be an incentive for workers to be tested and they could be encouraged to get legal and dietary advice.

Mr Coleman said that such a program might help combat stigmatisation but the reality is that there is a culture of abuse in the workplace. He responded to the announcement, made moments before, that SAA had admitted that they had unfairly discriminated against the applicant through their use of pre-employment testing and said that although this case may have been settled there are many ways to discriminate. This hurdle must be overcome but in the meantime COSATU is not in favour of workplace testing.

Dr Rabinowitz acknowledged that the budget had decreased but said things were so complex it would not help to throw money at the problem. She added that health was the most socialist arm of government, was COSATU proposing that they adopt even more socialist tactics? Mr Coleman agreed that nothing would be solved by throwing money at the problem but emphasised that nothing can be achieved without resources.

Ms Njobe (ANC) asked whether COSATU has looked at the budgets of other government Departments and whether they have HIV awareness programs. Ms Tregena agreed that the Departments' budgets should be looked at but most resources would still have to come from the Health Department. In terms of other social service budgets an analysis showed that there was a need for substantive, real per capita increases.

Ms. Njobe (ANC) asked whether COSATU has any programs to assist people who are not necessarily employees, especially the uneducated in rural areas who have no access to information. Mr Coleman said all organisations of civil society should be galvanised into this process.

Ms Madumise (ANC) referred to the recent donation of Diflucan by Pfizer to treat streptococcal meningitis and asked whether the treatment of thrush could be included in that package. Mr Coleman thought it would be a great advantage if Pfizer extended their donation of Diflucan to the treatment of thrush.

Ms Madumise (ANC) asked how involved they are in the Batho Pele initiative [for public servants to improve their level of service to people]? Mr Coleman said he could not claim that all members are adhering to Batho Pele. The media often runs down public servants although some do good work. A recent Business Day survey showed that the majority of South Africans are happy with service they receive from public servants. Ms Mpolokeng, recently appointed to the HIV Health and Safety Desk in Gauteng, added that there was a need to train health care workers on AIDS and pre- and post test counselling to pregnant women especially.

Ms Madumise (ANC) asked whether they have any programs geared to boost workers' lifestyles. Mr Coleman assured members that COSATU was geared towards improving wages but were also consciously going beyond this - to influence policies that would improve people's lifestyles.

Ms Marshoff (ANC) asked to what extent the National Union of Mineworkers (NUM) shop stewards have been involved in the AIDS program. She commented that National Health and Allied Worker's Union (NEHAWU) do not participate much in taking up social issues. Mr Coleman thought this comment was unfair. He referred to the AIDS train, which NEHAWU had launched some years ago and added, that its members are involved in training programs. NUM has a health and safety officer who could provide more detail on their partnership.

Ms Marshoff suggested that members could pay towards treatment. Would this be a feasible option? Ms Tregenna said that workers and employers could contribute to a social health insurance and possibly even to the fiscus but it is rather more a question of lowering costs.

Ms Marshoff (ANC) asked what their response was to speculation that Glaxo-Wellcome was pulling out of SA. Mr Coleman said that COSATU were opposed to capital flight, which would include shifting a primary listing to abroad or leaving altogether. The negative consequences it had are usually compounded where the company in question, like Glaxo, supplies public needs.

Dr Jassat (ANC) asked whether the income grant they were proposing would be part of the disability grant, in which case would the Department of Welfare be able to cope? Ms Tregenna said that the Basic Income Grant they were advocating had been discussed at the Presidential Job Summit. It would entail a minimum monthly grant being made available to South Africans. It would be a lifeline for people to subsist on and could be used to improve employability. COSATU has studied such a system in detail and believes it could be self-financed or be financed by an injection from the fiscus. People with a high income, for instance, could pay back the grant through taxes and this would not necessarily be a drain on the fiscus.

The public hearings were concluded.