Access to Treatment for HIV in Developing Countries

International Seminar on Access to Treatment for HIV in Developing Countries
5-6 June 1998 London, UK

Making choices for treatment

Dr. Hilary Curtis, Executive Director
British Medical Association Foundation for AIDS
London, UK

Introduction
Quality of health care means more than availability of drugs and technology. I will speak briefly about what we mean by quality from a UK perspective, in order to introduce some issues which would need to be addressed in any initiative aimed at achieving a comparable quality of care in a developing country. Some of what I will say may sound simplistic, but it is not easy to see how similar provision could be replicated in a places where there is minimal existing health service infrastructure.

I would like to make it clear that I am not suggesting that the UK model is the only way of delivering high quality treatment. It is merely an illustrative example with which I am at least partially familiar. The particular areas of quality of care I would like to address are:

Service organisation to make specialist expertise accessible.
Education - not just formal - to enable health professionals to prescribe correctly and to advise their patients.
Education, information and support to enable people with HIV to make informed decisions about starting treatment and to use it effectively, including the major issue of compliance.

In terms of service organisation, in the UK primary care doctors (general practitioners) do not ordinarily prescribe anti-HIV treatments or complex investigations such as viral load or CD4 tests. In fact, an increasing thrust of quality development is to look on HIV services as a tertiary, and not merely secondary speciality. It should be borne in mind, moreover, that the secondary tier in the UK - the district general hospital - is already more complex than in many developing countries. Tertiary specialisation, does, however, create issues about accessibility of care for people near where they live, even in a densely populated country with good transport networks such as the UK. Hence one approach to quality development is to strengthen networks and linkages so to share advice, expertise and service provision between major specialist centres and more local units. This is very much a live issue in the UK right now.

This organisation is important for two reasons: provision of technical services, e.g. viral load and CD4 tests (which are more complex than most tests done routinely in the majority of health laboratories); and ensuring that health professionals caring for people with HIV do not work in isolation but are grouped in multidisciplinary teams whose members can advise and learn from each other. Mutual education and communication between teams at different centres is facilitated through advisory links, shared clinical audit arrangements, and courses and conferences such as those organised by the society of health professionals specialising in HIV/AIDS (BHIVA) which also, for example, develops clinical guidelines. Finally, although health professionals in the UK are under a variety of pressures, there is no direct personal profit motive for them to work beyond their competence.

These arrangements differ dramatically from developing country settings where people with HIV may only have access to, say, a primary health worker in a fairly isolated rural unit or a private practitioner working independently. Such practitioners are often not only isolated, but also have a strong financial incentive to sell treatment to people who can afford it, even if the practitioner has insufficient expertise to prescribe or advise patients correctly.

Typically, a team in the UK is led by a senior specialist whose role includes direct patient care, but also and most importantly acting as a channel and resource for knowledge and expertise via:

Formal/informal teaching of junior doctors and other staff.
Sharing and assessing new knowledge via conferences and journals (including secondary/review journals).
Networking, policy and clinical guideline development.
Advising colleagues in own department or other smaller departments who provide the bulk of direct care.
Directing research.

The team would also include multidisciplinary input includes, e.g.:

Access to virologists/pathologists (not necessarily in every centre, but accessible) able to interpret and advise on patient monitoring and choice of specialised tests.
Pharmacist to monitor and check prescribing, manage drug supplies/stock control, and educate patients.
Other specialists e.g. thoracic, gastroenterology to advise on specific HIV-related problems/opportunistic illnesses.

Turning to education for people with HIV to enable them to make informed decisions about starting and using treatment, if we think for a moment about combination anti-retroviral therapy, there are some really complex issues to be covered:

Purpose of maintenance therapy when not ill, e.g. meaning of viral load & CD4.
Viral resistance and reasons why compliance important.
Impact of pill schedule and long-term compliance on daily life, including possible stigma of being seen to take medication.
Side effects and drug interactions.
Comparative benefits of early/delayed treatment, and different regimens.
Depth of uncertainty pervading scientific research, lack of data on long-term outcomes.

Without understanding of these issues, people are unlikely to be able to adhere to long term therapy, and poor adherence raises potentially serious problems of drug resistance as well as wasteful and ineffective use of the drugs.

It is important to realise that we have a real head-start in the UK in enabling people with HIV to understand these issues, because most have been to secondary as well as primary school and have access to the means of communication including telephones, mass media, and in some cases even computers. Most people in the UK already have some grasp of scientific thinking about disease, and even some idea, however inaccurate, about what a virus might be. They are also familiar with the concepts of chronic illness and of maintenance or preventive therapy - e.g. from knowing someone who is on antihypertensives or insulin etc.

Without these starting points it is hard to see how people could even make use of specific information and education about HIV/AIDS, such as:

Authoritative treatment information produced by community organisations with medical input, e.g. NAM publications.
Sources of support such as helplines to advise on treatment problems.

Finally, a note of reality. Theoretical universal access to sophisticated medical treatment in UK has not achieved equity in quality of care.

Compared with gay men, African people with HIV in the UK are likely to be diagnosed late, when already seriously ill, leading to poorer health experience. This is probably because we have not addressed these quality issues as effectively for Africans as for gay men, e.g. there has been relatively slow progress in community-based education for this group, and with honourable exceptions health professionals have less understanding of the African communities' cultures.

I hope that this presentation has given some food for thought. Of course, you may be saying to yourself, "Yes, but, we don't need all of that to achieve a quality of care which is acceptable, even if the standards are not quite the same as in the UK". If you are thinking that, I would ask you to consider, which bits do you think can be dispensed with? Should developing countries aim to provide a more restricted range of treatments, delivered to a high quality within the limits of the health and educational infrastructure available, or should the goal be access to a full range of treatments even if these are liable to be prescribed and used incorrectly?

Discussion:
Dr. Curtis noted that she did not address the important role of nurses, especially in quality assurance teams where nurses or and pharmacists did most of the work.

The example of Brazil was provided as a country where ARVs are provided even though the quality of treatments and the standards are not at the high levels seen in the UK. As a result, in 1997, it was found that mortality from HIV/AIDS had decreased by 30%. However, it would be a long time before Brazil would achieve the high levels of quality seen in the UK.

Dr. Curtis questioned whether the benefits would only be short-term and whether the decrease would be sustainable in view of mis-prescribing and poor compliance. On the question of standards, she pointed out that even in a country like the UK equity for treatment has not yet been achieved.

In developing countries, such as Uganda, training and information given to patients and physicians is lacking. The participants of the seminar were cautioned about rushing in to give appropriate drugs and instead preferred a holistic approach to provide training and information with the drugs as a complete package.

Dr. Curtis noted the importance of integrating infrastructure, education , and quality issues together with drug accessibility. If one is addressed without the other, we are not going to get the benefits we seek. In terms of information needs in the community context, this should be provided in accordance with the educational level of the people one is working with.