- Email: [email protected]
Access to treatment for HIV in developing countries; statement from international seminar on access to treatment for HIV in developing countries, London, June 5 and 6, 1998
CONSENSUS STATEMENT
Consensus statement
Access to treatment for HIV in developing countries; statement from international seminar on access to treatment for HIV in developing countries, London, June 5 and 6, 1998
UK NGO AIDS Consortium Working Group on Access to Treatment for HIV in Developing Countries Compared with those in industrialised countries, people in developing countries have little access to treatment for HIV infection, or for many other diseases including cancer, tuberculosis, and malaria. Although attention has been paid to areas such as provision of essential drugs, strengthening of infrastructures and service delivery, human rights, and appropriate health technologies, great inequalities remain. The HIV epidemic has highlighted these differences, because technological advances and the response of people infected with HIV have enabled the sharing of experiences across regions and brought the contrast into focus. Non-governmental organisations (NGOs) have an important role in the contribution to the debate on the difference in access to treatment for HIV infection between developing and industrialised countries. The UK NGO AIDS Consortium, which was started in 1986, is a group of UK-based NGOs working in developing countries. A recent Consortium initiative was a series of workshops on access to treatment held in 1997, which culminated in an international seminar in June, 1998. The aim of this initiative was to contribute to new ways of thinking and to identify key questions and issues, which included social justice, safe and sustainable treatment for HIV infection, and involvement of people living with HIV infection or AIDS. The seminar was attended by 84 people from 26 countries, about 30% of whom were from Africa, Asia, and Latin America. Representatives attended from NGOs, churches, support groups, and networks of people living with HIV infection or AIDS, academics, health professionals, UN agencies, and governments. The range of issues discussed included lessons from cancer and tuberculosis treatment in developing countries, the reality of care in Ethiopia and Uganda, approaches to access through constitutional rights in Latin America, and the meaning of hospice care and palliative treatment. The main points were drawn into a consensus statement in a plenary session with all participants. A summary follows.
Inequality of treatment It is unacceptable for anyone to suffer or die from lack of access to adequate or appropriate treatment and care. We are therefore committed to reduce inequalities in the availability of treatment and care for people with HIV infection. Discussion of antiretroviral therapy and access to treatment highlights the increasing inequality between and within developing and industrialised countries. People with HIV infection or AIDS must play an Lancet 1998; 352: 1379–80 Correspondence to: Dr Mick Matthews, AIDS Consortium, Fenner Brockway House, 37/39 Great Guildford Street, London SE1 0ES, UK
THE LANCET • Vol 352 • October 24, 1998
integral part in the design, development, and implementation of all policies and programmes that relate to their treatment and care. Care is a comprehensive package that includes support, psychosocial care, and treatment for individuals, families, and communities to improve quality of life. Community participation is an essential part of this comprehensive package. Treatment includes preventive, curative, and palliative interventions and effective, traditional, or complementary health care. Drug therapy is one element of treatment. Drugs in this context include those used for prevention and in primary care, palliative drugs, antiretrovirals, and any others necessary for treatment.
Treatment at primary care level Improving the quality and access to primary health care is a fundamental first step to reduce inequalities. The principle of equitable access to treatment is crucial. Equitable access means that treatments that are available for other people must also be available to people with HIV infection. Decisions and policies about making treatments available for the first time in any particular country should be considered carefully within the context of national health policy and capacity. Everybody has a right to relief from pain and other distressing symptoms. Palliative care needs wider application in the HIV infection and AIDS context. Health professionals should be trained in palliative care, and affordable drugs for pain control, including oral morphine, should be available.
Antiretroviral therapy Antiretrovirals are used in most countries; but their use is often inappropriate. Governments and NGOs have the responsibility to recognise this reality. When considering antiretrovirals for interruption of vertical transmission, other issues should also be considered. Sexually transmitted diseases need to be treated comprehensively. Antenatal care, safe childbirth, and postnatal care for mother and child should be available. 1379
CONSENSUS STATEMENT
Opportunistic infections in women, including those who are pregnant, should be treated. Transmission to women, including those who are pregnant, needs to be prevented. Blood supply should be safe and transfusions should be used appropriately in postnatal women and newborn children.
AIDS, people affected by HIV and AIDS, and community-based organisations) have a responsibility to respect and coordinate their work in line with national and international policies, but to advocate change when policies are inconsistent, inadequate, or detrimental. These organisations should be included in the development of national policies.
Issues common to all countries Different approaches to HIV/AIDS are needed in different settings, however, many issues are common to all settings. People living with HIV infection or AIDS, health and social workers (including traditional healers and complementary practitioners), the family, the community, and political and religious leaders need adequate information, education, and training in several key areas. These areas are palliative care, which includes psychosocial care and counselling, sexually transmitted diseases and prevention strategies, opportunistic infections, and antiretroviral therapy. Adequate infrastructure to deliver care safely is needed, but the lack of infrastructure should not be used as an excuse not to advocate better care and treatment. Home-based care, primary care, and a functioning secondary level care should be supported. Access to care needs to be monitored and outcomes need to be evaluated. A better understanding of the roles of different actors (eg, political, activist, and commercial) concerned with access to care is important, so that they work together and avoid the negative effects of uncoordinated action or prejudice, whether it is based on HIV infection per se or on other grounds such as sexual orientation, ethnic origin, colour, displacement, or route of infection. It is necessary to recognise the different roles of international and national NGOs, civil society organisations, people infected with HIV, and those affected by HIV. All have different standpoints in relation to the care of people with HIV infection or AIDS, the identification and addressing of barriers to care in resource-poor settings, and the effect of structural adjustment programmes and unpayable debt on access to appropriate care. These different stand-points need to be understood and valued. National governments have a responsibility to develop, disseminate, and implement national policies that relate to access to care and treatments and rational drug use. Civil society organisations (including national and international NGOs, people with HIV infection or
1380
Conclusion Several important issues emerged. The “developing world” is often referred to as one entity, but there are differences in resources and infrastructure, which the approach to provision of treatment must reflect. In some countries in Latin America the combination of a strong economy, political will, and a relatively low level of HIV prevalence means that antiretroviral drugs can currently be provided. In contrast, in many sub-Saharan African countries, even the supply of HIV-testing reagents and essential drugs cannot always be sustained. The need for treatment of severe pain for people with HIV infection or AIDS needs to be recognised—25% require strong pain control at some point. Antiretrovirals have implications beyond the immediate medical effects. For example, the use of antiretrovirals for prevention of mother-to-child transmission raises complex issues about breastfeeding and the choices open to mothers in different circumstances. Much research in this field is yet to be done. Inequality is still great, but there are areas where effective changes are feasible, such as improvement of palliative care focusing on quality of life, and reduction of mother-to-child transmission. Contemplation of the gulf between regions often leads to either despair at the vastness of the task or empty rhetoric. A better solution is to identify and implement achievable change in specific contexts. UK NGO AIDS Consortium Working Group on Access to Treatment for HIV in Developing Countries Hilary Curtis (BMA Foundation for AIDS); Helen Elsey (ACTIONAID); Carolyn Green (formerly ECHO International); John Howson (CAFOD); Siân Long (Healthlink Worldwide; formerly AHRTAG); Sue Lucas, Mick Matthews, Siobhan Wilson (UK NGO AIDS Consortium); Jeffrey O’Malley (International HIV/AIDS Alliance); Philippa Saunders (Essential Drugs Project).
Acknowledgments We thank UNDP, UNAIDS, and WHO for financial support for the seminars. The interim report on a series of five preliminary seminars can be found at the BMA Foundation for AIDS website: http://www.BMAIDS.demon.co.uk/ukaidscon/accrpt.htm.
THE LANCET • Vol 352 • October 24, 1998
Consensus statement
Access to treatment for HIV in developing countries; statement from international seminar on access to treatment for HIV in developing countries, London, June 5 and 6, 1998
UK NGO AIDS Consortium Working Group on Access to Treatment for HIV in Developing Countries Compared with those in industrialised countries, people in developing countries have little access to treatment for HIV infection, or for many other diseases including cancer, tuberculosis, and malaria. Although attention has been paid to areas such as provision of essential drugs, strengthening of infrastructures and service delivery, human rights, and appropriate health technologies, great inequalities remain. The HIV epidemic has highlighted these differences, because technological advances and the response of people infected with HIV have enabled the sharing of experiences across regions and brought the contrast into focus. Non-governmental organisations (NGOs) have an important role in the contribution to the debate on the difference in access to treatment for HIV infection between developing and industrialised countries. The UK NGO AIDS Consortium, which was started in 1986, is a group of UK-based NGOs working in developing countries. A recent Consortium initiative was a series of workshops on access to treatment held in 1997, which culminated in an international seminar in June, 1998. The aim of this initiative was to contribute to new ways of thinking and to identify key questions and issues, which included social justice, safe and sustainable treatment for HIV infection, and involvement of people living with HIV infection or AIDS. The seminar was attended by 84 people from 26 countries, about 30% of whom were from Africa, Asia, and Latin America. Representatives attended from NGOs, churches, support groups, and networks of people living with HIV infection or AIDS, academics, health professionals, UN agencies, and governments. The range of issues discussed included lessons from cancer and tuberculosis treatment in developing countries, the reality of care in Ethiopia and Uganda, approaches to access through constitutional rights in Latin America, and the meaning of hospice care and palliative treatment. The main points were drawn into a consensus statement in a plenary session with all participants. A summary follows.
Inequality of treatment It is unacceptable for anyone to suffer or die from lack of access to adequate or appropriate treatment and care. We are therefore committed to reduce inequalities in the availability of treatment and care for people with HIV infection. Discussion of antiretroviral therapy and access to treatment highlights the increasing inequality between and within developing and industrialised countries. People with HIV infection or AIDS must play an Lancet 1998; 352: 1379–80 Correspondence to: Dr Mick Matthews, AIDS Consortium, Fenner Brockway House, 37/39 Great Guildford Street, London SE1 0ES, UK
THE LANCET • Vol 352 • October 24, 1998
integral part in the design, development, and implementation of all policies and programmes that relate to their treatment and care. Care is a comprehensive package that includes support, psychosocial care, and treatment for individuals, families, and communities to improve quality of life. Community participation is an essential part of this comprehensive package. Treatment includes preventive, curative, and palliative interventions and effective, traditional, or complementary health care. Drug therapy is one element of treatment. Drugs in this context include those used for prevention and in primary care, palliative drugs, antiretrovirals, and any others necessary for treatment.
Treatment at primary care level Improving the quality and access to primary health care is a fundamental first step to reduce inequalities. The principle of equitable access to treatment is crucial. Equitable access means that treatments that are available for other people must also be available to people with HIV infection. Decisions and policies about making treatments available for the first time in any particular country should be considered carefully within the context of national health policy and capacity. Everybody has a right to relief from pain and other distressing symptoms. Palliative care needs wider application in the HIV infection and AIDS context. Health professionals should be trained in palliative care, and affordable drugs for pain control, including oral morphine, should be available.
Antiretroviral therapy Antiretrovirals are used in most countries; but their use is often inappropriate. Governments and NGOs have the responsibility to recognise this reality. When considering antiretrovirals for interruption of vertical transmission, other issues should also be considered. Sexually transmitted diseases need to be treated comprehensively. Antenatal care, safe childbirth, and postnatal care for mother and child should be available. 1379
CONSENSUS STATEMENT
Opportunistic infections in women, including those who are pregnant, should be treated. Transmission to women, including those who are pregnant, needs to be prevented. Blood supply should be safe and transfusions should be used appropriately in postnatal women and newborn children.
AIDS, people affected by HIV and AIDS, and community-based organisations) have a responsibility to respect and coordinate their work in line with national and international policies, but to advocate change when policies are inconsistent, inadequate, or detrimental. These organisations should be included in the development of national policies.
Issues common to all countries Different approaches to HIV/AIDS are needed in different settings, however, many issues are common to all settings. People living with HIV infection or AIDS, health and social workers (including traditional healers and complementary practitioners), the family, the community, and political and religious leaders need adequate information, education, and training in several key areas. These areas are palliative care, which includes psychosocial care and counselling, sexually transmitted diseases and prevention strategies, opportunistic infections, and antiretroviral therapy. Adequate infrastructure to deliver care safely is needed, but the lack of infrastructure should not be used as an excuse not to advocate better care and treatment. Home-based care, primary care, and a functioning secondary level care should be supported. Access to care needs to be monitored and outcomes need to be evaluated. A better understanding of the roles of different actors (eg, political, activist, and commercial) concerned with access to care is important, so that they work together and avoid the negative effects of uncoordinated action or prejudice, whether it is based on HIV infection per se or on other grounds such as sexual orientation, ethnic origin, colour, displacement, or route of infection. It is necessary to recognise the different roles of international and national NGOs, civil society organisations, people infected with HIV, and those affected by HIV. All have different standpoints in relation to the care of people with HIV infection or AIDS, the identification and addressing of barriers to care in resource-poor settings, and the effect of structural adjustment programmes and unpayable debt on access to appropriate care. These different stand-points need to be understood and valued. National governments have a responsibility to develop, disseminate, and implement national policies that relate to access to care and treatments and rational drug use. Civil society organisations (including national and international NGOs, people with HIV infection or
1380
Conclusion Several important issues emerged. The “developing world” is often referred to as one entity, but there are differences in resources and infrastructure, which the approach to provision of treatment must reflect. In some countries in Latin America the combination of a strong economy, political will, and a relatively low level of HIV prevalence means that antiretroviral drugs can currently be provided. In contrast, in many sub-Saharan African countries, even the supply of HIV-testing reagents and essential drugs cannot always be sustained. The need for treatment of severe pain for people with HIV infection or AIDS needs to be recognised—25% require strong pain control at some point. Antiretrovirals have implications beyond the immediate medical effects. For example, the use of antiretrovirals for prevention of mother-to-child transmission raises complex issues about breastfeeding and the choices open to mothers in different circumstances. Much research in this field is yet to be done. Inequality is still great, but there are areas where effective changes are feasible, such as improvement of palliative care focusing on quality of life, and reduction of mother-to-child transmission. Contemplation of the gulf between regions often leads to either despair at the vastness of the task or empty rhetoric. A better solution is to identify and implement achievable change in specific contexts. UK NGO AIDS Consortium Working Group on Access to Treatment for HIV in Developing Countries Hilary Curtis (BMA Foundation for AIDS); Helen Elsey (ACTIONAID); Carolyn Green (formerly ECHO International); John Howson (CAFOD); Siân Long (Healthlink Worldwide; formerly AHRTAG); Sue Lucas, Mick Matthews, Siobhan Wilson (UK NGO AIDS Consortium); Jeffrey O’Malley (International HIV/AIDS Alliance); Philippa Saunders (Essential Drugs Project).
Acknowledgments We thank UNDP, UNAIDS, and WHO for financial support for the seminars. The interim report on a series of five preliminary seminars can be found at the BMA Foundation for AIDS website: http://www.BMAIDS.demon.co.uk/ukaidscon/accrpt.htm.
THE LANCET • Vol 352 • October 24, 1998