Perspectives from the HIV+ community

G+ is a recently formed organisation with about 25 members, but perhaps the most visibly organised representative voice of people living with HIV/AIDS. Its founding is linked to the effort by one member, who is currently the Field Worker in Guyana for the Greater Involvement of People living with HIV/AIDS (GIPA), a Caribbean initiative with representatives in seven countries. Funds for the GIPA programme come from UN organisations in the region.

G+ is concerned that the government is not consulting people living with HIV/AIDS during the process of formulating decisions that will affect their lives. In particular, there seems to be an extreme degree of confusion about, and a lack of knowledge around, the Health Ministry designed antiretroviral (ARV) programme.

This lack of information is something that has clearly resulted from an absence of communication for which all constituencies must take responsibility.

Medical concerns

G+ was earlier concerned about the number of ARVs that the government was dispensing. However, they would now appear to be satisfied that the range of drugs being produced adequately meets the medical needs of people with AIDS. However, they are of the view that the GUM clinic's policy of only treating HIV+ patients with ARVs after contracting at least three opportunistic infections (OI) is limiting. Yet, they concede that this is the norm laid out in World Health Organisation (WHO) and Pan American Health Organisation (PAHO) guidelines for developing countries.

G+ argues that there are people who have contracted less than the three stipulated OIs, but need the ARVs anyway. While this could well be the case, depending on the patient's individual medical condition, Dr Ali at the GUM Clinic in Georgetown, argues that he does not follow the three OI rule; that he would individually examine every patient who came in and determine when to start ARV treatment depending on the health condition of the person.

Health Minister, Dr Leslie Ramsammy, echoes this point; he says that in general, the government health system uses a one OI rule to go on.

However, as G+ points out, this diagnosis of an HIV+ person's health is being done without a most crucial indicator - the CD4 test. Ramsammy and Ali both recognise that until CD4 testing in Guyana becomes a reality, the system cannot function as it should. Ramsammy is willing to commit to bringing in CD4 testing equipment (as mentioned in last week's article, in consultation with Brazil) in the "next several weeks."

A small, but important point, brought up by G+ is the fact that all New GPC ARVs look the same (they do; they are identical white pellets), which makes it difficult for the patient to differentiate when taking the pills in the case of a mix-up. At present, the only marking is on the containers the pills come in. Ramsammy states that he has been looking into the issue, and commits that he has asked for further production from New GPC to ensure that pills are differentiated and labelled.

G+ also argues that there needs to be better treatment of opportunistic infections themselves - in many cases, they say, patients are being prescribed standard over-the-counter medicines for such things as headaches, fevers and diarrhoea. Further, G+ is frustrated by the very limited scope of treatment on offer, due to the limited infrastructure of the health system in Guyana, and the lack of doctors who have been trained and sensitised to issues of HIV and AIDS, especially outside the capital.

To an extent, this complaint has its roots in the problems that besiege the public health system in Guyana generally. These are medical problems, not specifically HIV/AIDS issues. Yet, it makes them no less worthy of mention.

Ramsammy notes that like elsewhere - particularly, elsewhere in the developing world - the health system in Guyana operates with all the expected constraints:

a resource crunch, limited finances, within a system that offers little infrastructural support. "The public health system is never going to operate at the level of the private health system," he warns, "and we will never have enough staff to match the level of private medical service."

"Yet," Ramsammy says, "it is this public health system that will reach 90 per cent of the population." In terms of decentralisation of the HIV/AIDS diagnosis and treatment infrastructure, ARVs are now also dispensed from Suddie, Essequibo and New Amsterdam, Berbice. Doctors from West Demerara, Linden, Essequibo and Berbice have all received training in the protocol of HIV/AIDS management. Further, the Health Ministry will soon institute a cooperative arrangement with St Joseph's Mercy Hospital in Georgetown. Specified doctors will be allowed to dispense ARVs, and these drugs will be provided to the hospital - and therefore, to their patients - free of cost, as in the government health system. The Mercy Hospital doctors will further volunteer some time every week at the GUM Clinic, as part of this arrangement.

Unlike the case of Mercy Hospital, the Health Ministry has also instituted a system where a select number of private doctors can have access to, and dispense, ARVs, but at cost. These doctors were part of a public-private training programme, and received certification. The way it works is this: the certified private doctor buys the ARVs as necessary from New GPC, and subsequently sells them to their customers, at the same cost (which is, US$400 a year, or roughly US$33 a month).

The problem, as stated by a member of G+, is that the system may not be perfect. It was claimed that there are "some doctors" who charge up to $15,000 (or US$75) a month for the treatment. While it is unclear as to exactly who these doctors are, and what the drugs they are selling are (New GPC drugs, or imported ARVs), it is clear that the widespread misinformation that exists in the field of AIDS medical management can be easily exploited by anyone who wants to.

The government system is clear. There is only one list of doctors specified to treat patients with HIV/AIDS. That list is available at any time from the Health Ministry (and will be subsequently published in this newspaper). The Health Minister is willing to publicly display a current, updated list of authorised doctors in the Health Ministry, at all times, accessible to anyone. Private doctors can charge a consultation fee according to the arrangement they have established with their patients. However, New GPC ARVs cannot be sold for more than US$400 per annum, by anyone, whether the company itself or private doctors, or middlemen. In the case of any violation of this principle, the Health Ministry will accept and investigate complaints from patients. Ramsammy would be willing to de-authorise any doctor found guilty of making illegitimate profits on New GPC supplied ARV drugs.

At the same time, it is clear - from unofficial reports from society at large - that a number of parallel streams of economy exist. There are reports of Euro-American ARVs being smuggled in, of doctors offering treatment that is beyond the scope of the Health Ministry initiative, and of richer Guyanese accessing medical health in New York City, or other foreign locations. Since the establishment of a regularised programme of treatment in April 2002, it seems that any Guyanese who opts for treatment outside what is being officially offered, is doing this at her/his own risk. Ramsammy urges people to try the government health system.

While it may not compare to the best private treatment available in the developed world, it exists, it is regulated, and it is free.

While it is always possible to seek recourse for strictly 'medical' issues, as G+ has in the past, what is more problematic is the fact that - as they rightly point out - there is simply not enough psycho-social help available to HIV+ people in Guyana. The government medical system is (understandably) over psycho-social help available to HIV+ people in Guyana. The government medical system is (understandably) overcrowded. Doctors there do not necessarily have the time to make their patients feel psychologically well with the problems they are undergoing.

Being HIV+ is a phenomenon that exerts considerable strain on the person; this strain is amplified (over other terminal illnesses such as cancer or heart disease) by the inability to comprehend the problem, owing to the newness of the virus itself, and the relative lack of established counselling and therapeutic procedures. The onus on society, G+ reinforces, is to join hands in providing this network of support.

The issue of human rights

A further complaint of G+ is the lack of privacy, and the lack of rights, in general, for the community of HIV+ people. At the GUM Clinic, it was alleged, there is a lack of discretion among nurses and support staff. It was also alleged that there are other violations - like people being tested without their knowledge. Ramsammy states that there has been an effort made to sensitise and train medical staff around the issues specific to HIV/AIDS, and that much more training is necessary. He is willing to commit to further reinforcing training principles, and/or looking at enforcing disciplinary measures against those who violate a patient's right to confidentiality.

However, G+ acknowledges that there is a level of privacy at the government dispensary, where ARVs are actually delivered to the patient. Their complaint is more at the level of society: that there is little being done at the level of family and law, to create a protection network for the HIV+ individual. They bemoan the fact that often an HIV+ person is defenceless, left without the security of family or job.

Intervention at the level of labour, is something that can most effectively be done by legislation. At present, a legal source states, there are two ways in which one can interpret labour rights in the current situation. According to English common law, which we have inherited, while unjust dismissal from the workforce (for reasons other than insubordination, fraud, etc) is not tolerated, a loophole allows the employer to terminate any employment, as long as adequate notice is given.

Common law clearly does not provide the level of protection required for HIV+ people who may be unfairly discriminated against in the workplace. However, Article 149 of the Guyana Constitution relating to human rights could be just the site for such a change, according to the same legal source. The proposed amendment of 2001 - which was eventually jettisoned by various religious groups - sought to add the terms "disability" and "sexual orientation" to the list of conditions under which discrimination would not be legally tolerated. While both are of some importance to further protect the rights of the HIV+ community (as a proportion of HIV+ people in Guyana include those who identify as gay men, like elsewhere in the world), the term 'disability' is what is usually interpreted in other constitutions (like, for instance, South Africa's), to include disability relating to disease, such as AIDS.

South Africa's constitution is pointed out as an example of how legal reform in Guyana (with reference to this particular issue) might want to head. Further legal changes in South Africa went on to specifically protect the rights of the HIV+ community. The recently enacted Employment Equity Act (EEA), which aimed to rectify the legacies of apartheid, by ensuring, through affirmative action, the equitable representation of blacks, women, and people with disabilities in the workplace, also protected against unfair discrimination on the grounds of "HIV status."

G+ has worked occasionally with the Guyana Human Rights Association on the issue of legal reform. However, they report that not much has been accomplished. While the proposed amendment of Article 149 was passed in Parliament early last year in 2001, strong objections from religious groups (on the sexual orientation clause, and not the disability clause) caused its assent to be delayed. Since six months have passed, that proposed amendment and its parliamentary consent have now lapsed. The process needs to be started all over again if it is to be ever enacted as law.

A Guyanese problem

At present, there are no Indian members of G+. That, perhaps, is an indication of the acute stigma that people living with HIV/AIDS face, especially within closely integrated communities. It is not surprising then, that a remark often heard in political and societal circles is that AIDS is an 'African disease.'

It is not. Ramsammy states that the racial break up of people with HIV/AIDS in Guyana is a roughly equal split. What he does see is perhaps a greater reluctance within the Indian community to reveal HIV status. Familial and societal pressures, he says, often force people into hiding as long as they can.

Apart from delaying testing and medication, sometimes even families take it into their hands to hide the fact from the outside world.

At G+, a member talks of how she has often been called into Indian homes to provide personal counselling. Later, she says, she reads that some of these people have died of causes always attributed to a disease other than AIDS. Much of the stigma and the shame - which exists to some extent in all communities - can be lifted by openly discussing the disease, and its associated problems. However, Ramsammy notes that it is perhaps the rural locations of many Indian families, and their close-knit community structure, that prevents full or open disclosure.

Reality confirms that HIV/AIDS is a Guyanese problem, and not at all restricted to one community. Most activists working around the issue concede that a lot needs to be done to liberate certain aspects of thinking around HIV infection in Indian communities at large.

Funders and activists

The UN Theme Group for HIV/AIDS in Guyana is the country level initiative that works for the goals of the UNAIDS programme (which is sponsored by six UN agencies). The current chair of the programme is Dr Sree Gururaja, the Assistant Representative for UNICEF in Guyana. Shawn Wilson is the Focal Point for HIV/AIDS in the UNAIDS programme, and Olufemi Olugbemi is Consultant to UNICEF on HIV/AIDS and the Youth.

Gururaja has been instrumental in providing a platform for HIV+ representation from Guyana. She has encouraged and facilitated the interaction of HIV+ Guyanese at international conferences, and helped activism in general within this neglected area. Gururaja's concerns with Guyana's battle against HIV/AIDS filter down to some key points. She notes, that the "strengthening of capacities" is essential to the progress of medical treatment of HIV/AIDS, and without a stronger programme, without a better, more enabled National AIDS Programme Secretariat (NAPS) the efforts to stem the problem will not fructify. With regards to the expansion of the ARV treatment infrastructure, she cautions that the private medical system must be monitored carefully.The funds available from the UN go to NGOs of a wide-ranging nature. Yet, a point strongly made by Olugbemi and Wilson, is that wide-ranging nature. Yet, a point strongly made by Olugbemi and Wilson, is that not enough proposals of a diverse nature are coming in. Mentioning a recent glut of proposals from NGOs, Olugbemi cites only one that has integrated a condom distribution programme within its focus. The UN Theme group on HIV/AIDS is interested in furthering a multi-pronged strategy, and would particularly like to see proposals coming in from under-represented, or neglected areas of work in HIV/AIDS.

They are specifically interested in receiving more proposals that would focus on: - Urban slums, ghettoes, or low-income areas

- Men having sex with men (MSMs)

- Mining, or other transient communities

- Indian communities in the country

- Amerindian communities in the interior

- Children who are orphaned by AIDS Olugbemi talks of the numerous practical problems that exist with intervention in the face of HIV/AIDS. With diverse cross-cultural experience, from Nigeria and the Caribbean, he is able to offer best practices from other regions as example.

With condoms, for example, Olugbemi talks of how difficult it may be, in small communities to be actually able to buy them. In some places, customers pretend to box (using the metaphor of boxing gloves) in order to convey to the shopkeeper that they want condoms, especially when someone else they know is in the shop. The price of condoms is another sticky issue. Free condoms may be undervalued. Expensive condoms, on the other hand, may be a deterrent to safe sex. In his experience from Africa, he talks of a situation of getting a population used to condoms, by plying them with massive quantities of free condoms until they get used to using them. At that point, he says, it would be possible to charge a small fee. Yet, he cautions that in some parts of the Guyanese interior, in mining camps, condoms can cost as much as $200, and in this situation, the pricing could lead to dangerous consequences.

It is important, Wilson and Olugbemi emphasise, to listen to the demands of the 'consumer.' For instance, condoms should be made available to interested people when they need it. Most sexual activity tends to occur at night. For sex workers, particularly, who would tend to almost only work at night, the timings of the GUM Clinic (one of the points from which free condoms may be picked up) are a problem. Most men who are users of condoms prefer a brand called 'Rough Riders,' - this is what feedback indicates. It would be important to gauge the effectiveness of the freely distributed government condoms against this brand. And finally, they say, that it wouldn't hurt to innovate as far as condoms go - and in keeping up with what is available privately in the market - try and create a product that is actually enjoyed, appreciated, and therefore, used.

In another corner of Georgetown, a group called Artistes in Direct Support are practising a play they are soon to perform. Desiree Edghill and Andre Sobryan founded this organisation as far back as 1992, and since then, Sobryan has passed away.

Edghill talks of the pioneering work that she and her community of artistes have been doing in the area of HIV/AIDS education through theatre for the last decade, the first eight years being without any outside funding. "People used to ask us to come to their communities," she says, "and they would take us there, give us a place to stay, and bring us back." In 2000, the organisation received funding from USAID, under its Guyana HIV/AIDS/STI Youth Project.

In 1992, they performed a small play in the National Cultural Centre; twenty-five people sat in the audience, when the capacity of the auditorium was 2000. The performers were laughed at. In 2001, they had a sold-out show on World AIDS day - and had to extend their performances to a further two shows, including one at Le Meridien Pegasus Hotel, which was a fundraiser. The progress and achievement of groups such as Artistes in Direct Support then, almost directly mirrors the change in the collective attitude of the people of Guyana, towards HIV/AIDS.

Theatre, says Edghill, is an entertaining way to convey messages that otherwise might be lost, especially on an entertainment-soaked youth. Their message varies, but remains consistent within the broad parameters of encouraging a diverse range of options to battle AIDS and prevent HIV infection. They firmly advocate a multi-pronged strategy of ABCD - Abstain, Be faithful, if you can't, then use a Condom, and ensure that you are Drug free.

Starting out with the lesson of 'choices' - that is, what you do affects what might happen to you - they have moved with the times, emphasising a different issue each year. This year, the focus is on stigma and discrimination. Their work is widely popular, and thoroughly enjoyed by youth all over the country.

They stress that they are not a Georgetown-centric organisation: they have worked with diverse communities all over the country, and will soon embark on a nationwide tour of all the regions.

Some of their recent successes have included performing plays for an audience organised by the Muslim League - they put up two shows, one for men and one for women. In that sense, Edghill says, her goal is to try and work with all kinds of communities, and therefore, all kinds of viewpoints.

Towards that, they have had training sessions by Bonita Harris (who has worked in the area for many years).