Uganda leads way in innovative HIV/AIDS treatment.

244 Bulletin of the World Health Organization | April 2005, 83 (4) News Uganda leads way in innovative HIV/AIDS treatment In focus Public health officials and doctors in sub-Saharan Africa say innovative approaches to treating AIDS in poor settings have so far been successful on a small scale. Can these efforts be expanded to provide antiretroviral therapy (ART) on a massive scale? Uganda is one of the sub-Saharan countries that has led the way in the treatment scale-up. But while the country is expected to reach the 50% treatment target, scaling up to provide ART treatment for every Ugandan who needs it will be a major challenge. Building on years of AIDS awareness and prevention programmes, Uganda has almost completed training of health staff in all of its 56 districts to deliver a simplified version of chronic HIV/AIDS care — that includes ART — to people living with HIV/AIDS. So far, just over one-third of pa- tients in Uganda who need antiretro- viral (ARV) drugs were receiving them at the end of December 2004 and the proportion is expected to reach 50% by July. This might appear low, but it is one of the highest proportions in Africa. According to the ‘3 by 5’ progress report released by WHO in January, 72% of people in Africa who need ARVs were still not getting them at the end of last year. Botswana was the only African country that had reached the 50% target level by that time, the report said. Many public health experts believe that the main obstacle to the ‘3 by 5’ campaign, which aims to scale-up de- livery of ART to at least three million people in poor countries by the end of 2005, is the severe and growing short- age of health workers. In an editorial on page 243 of this issue, Lincoln Chen, Director of the Global Equity Initiative, Harvard Uni- versity, calls on governments for urgent action to address this shortage. Govern- ment officials from many countries gathered in Abuja, Nigeria last Decem- ber conceded that the shortage of health workers in Africa threatened to derail development goals on the continent (Bulletin Vol. 83. No. 1, pp. 5–6). In Uganda, officials say there are enough staff to treat the 42 000 patients currently on ARV drugs, but that more human resources and more drugs are needed to scale this up to the remaining 58 000 in need of treatment too. Of those 42 000, three-quarters are paying for ARV medicines out of their own pockets, while a quarter get the drugs free from the Ugandan Government and donor projects. Rosette Mutambi, coordinator of the Uganda Coalition for Access to Essential Medicines, argued that more should be done to make free and partly-subsidized ARV drugs more widely available. Mutambi said she feared emphasizing the short- age of health workers could slow down funding for ARV drugs in Africa. “The issue of human resources is not a prob- lem at the moment, but it may be in future,” Mutambi told the Bulletin. Dr Elizabeth Madraa, Manager of Uganda’s AIDS Control Programme, said that the workforce shortage was already a constraint and that this was largely due to the ‘brain drain’ of doctors and nurses. She said Uganda’s medical schools and nursing colleges do not produce enough doctors and nurses, and that there is a lack of public funds to recruit adequate numbers of health workers. “We keep training and they go to NGOs (nongovernmental organiza- tions) or abroad where they can get better money, then we have to train We keep training and they go to NGOs or abroad where they can get better money, then we have to train [more people] again. Dr Elizabeth Madraa, Manager of Uganda’s AIDS Control Programme. HIV-positive patients being trained in Uganda’s Hoima district in 2004. W HO /M . J en se n “We train patients to educate and evaluate health workers in the counselling aspects of training. This is important because treatment is a two-way process.” Dr Abdikamal Alisalad, HIV/AIDS team leader at WHO’s country office in the Ugandan capital Kampala. 245Bulletin of the World Health Organization | April 2005, 83 (4) News [more people] again,” said Madraa, who organizes and oversees ART training for health workers across Uganda. In order to overcome the finan- cial and staffing constraints, Uganda has adopted what Madraa called an “innovative” approach to treating HIV/AIDS patients. Uganda is the first sub-Saharan country to roll-out ART on a national level taking this innovative approach. Ethiopia, the Eastern Cape region of South Africa, Swaziland and Zambia have also started training health workers to provide HIV/AIDS chronic health care using this simplified approach (see graph). If successful, Uganda’s ART roll-out could serve as a model for other low-income countries. In contrast, Botswana is providing HIV/AIDS chronic care taking a similar ap- proach to European and North American coun- tries which can be much more costly in terms of human resources and medicines. In contrast, the idea of the simpli- fied approach to providing chronic HIV/AIDS care i s to train nurses to per- form some of the tasks of doctors and lay health workers and community workers to carry out some of the nurses’ work. Under these simplified treatment guidelines, patients are prescribed com- bination pills rather than several differ- ent medicines to be taken twice a day. Madraa said that as long as a doctor diagnoses a patient or endorses the diagnosis of a nurse, and as long as the doctor writes the prescription, the counselling and supervision of drug intake can be done by other people. She said the idea was also to en- courage home-based and community- based ARV delivery to ease congestion in health facilities. If complications arise, the nurses and others refer pa- tients to a doctor or a health facility. “If you can make a good diagnosis, the counselling is good and the patient adheres to the drugs, I don’t see how the level of qualification can be a problem,” Madraa told the Bulletin. “Unless we do things differ- ently to address the human resource capacity gap, we shall never deliver even the basic health-care services, let alone ART,” Madraa said. In Uganda, more community workers need to be trained to counsel patients, ensure they are adhering to ARV treatment and to send them to hospital if there are complications or severe side-effects. Adherence is a vital component of ART because HIV/ AIDS patients are expected to take their medicine every day for the rest of their lives. This approach, called Integrated Management of Adult and Adoles- cent Illness (IMAI), has been inspired by successes in Latin America, the former Soviet Union and Africa, where lay health workers who are often relatives, friends or other community volunteers have been trained to help treat tuberculosis patients in poor settings. IMAI is a health services delivery model characterized by simpli- fied guidelines and training material. It is based on full involvement of nurses, lay health workers and — in the case of HIV/AIDS chronic care — HIV-posi- tive patients who help to train health workers. WHO and its partners are plan- ning new research into whether services If you can make a good diagnosis, the counselling is good and the patient adheres to the drugs, I don’t see how the level of qualification can be a problem. Dr Elizabeth Madraa, Manager of Uganda’s AIDS Control Programme. provided by nurses are comparable with the same services provided by doctors. If the studies provide favourable results, clinical officers and nurses may even be allowed to prescribe ARVs, currently the preserve of doctors. The research will also try to establish whether clinical signs alone — and as an alternative to laboratory tests — are enough to decide when to start or change ART. Currently laboratory tests are a requirement for making these decisions in certain settings. Dr Abdikamal Alisalad, HIV/ AIDS team leader at WHO’s country office in the Ugandan capital Kam- pala, said that the HIV/AIDS clinical team consists of: doctors, clinical of- ficers, nurses, counsellors and labora- tory technicians and that each has an important role to play in the delivery of ARVs. Shifting some of these tasks to others can solve health workforce constraints. He noted that another innovative aspect of this approach is training HIV-positive volunteers as ‘expert patients’ who, in turn, help to evaluate and drill professional health workers. “We train patients to educate and evaluate health workers in the counselling aspects of training,” Alisalad told the Bulletin, adding: “This is important because treatment is a two-way process”. O Charles Wendo, Kampala Bar chart shows how Uganda and other countries have adopted the Integrated Management of Adult and Adolescent Illness (IMAI) approach to providing chronic HIV/AIDS care. The chart shows the number of health-care workers, facilitators and HIV-positive patients, known as ‘expert patients’ or People Living with HIV/AIDS (PLHA), who have been trained from June 2004 to March 2005 to deliver simplified antiretroviral therapy (ART). T World Health Organization "3 by 5" Target http://www.who.int/3by5 http://www.who.int/hiv IMAI in countriesI AI in countries 50 100 150 250 650 Uganda Swaziland Eastern Cape RSA Ethiopia Massive training 200 300 350 Zambia Health care providers/facilitators Expert patient trainers Numbers of Health Care Providers/Facilitators and PLHA trained W HO 246 Bulletin of the World Health Organization | April 2005, 83 (4) News Disabled often among the ‘poorest of poor’ An Oscar-winning Spanish film about a quadriplegic may raise awareness about disability, but much more is needed to galvanize international efforts to support people with disabilities, 80% of whom live in poor countries “My first group came from the United States. When I met them at the airport I was stunned — there were three people in wheelchairs,” Yelena Popova, a Moscow tourist guide, still raises her eyebrows in amazement as she remem- bers her experience eight years ago. “I thought to myself: ‘God, I don’t think I have seen that many people in wheelchairs in Moscow in my entire life. What am I going to do with them?’ Yelena is a young, well-educated and liberal-minded person. Her bewil- derment at the fact that disabled people go on tourist trips just like anyone else is a stark reminder of the contrast in at- titudes towards people with disabilities in developed and developing countries. Some 600 million people in the world experience disabilities of various kinds and the vast majority, or 80%, of them live in low-income countries, according to WHO. More often than not they are among the poorest of the poor, forced to spend their lives struggling to survive in a world where finding food and shelter is a challenge. Their functional limitations lead to social exclusion, unequal rights and limited opportunities. Despite collective and private ef- forts to prevent disability, the number of disabled people on the planet is on the rise, boosted by malnutrition, non-infectious and congenital diseases, war injuries, HIV/AIDS, chronic conditions, substance abuse and envi- ronmental damage. Population growth and life-prolonging medical advances also account for much of the increase. People with mobility-related im- pairments are usually the most visible among the disabled but many activists believe that mental health conditions are by far the most likely to lead to social exclusion. “These people need help most,” said Tatyana Kirillova, a disability activ- ist in the central Russian city of Vol- gograd and herself the mother of two children with severe mobility-related and mental impairments. “Doctors put a big cross on them right from the start. Maternity nurses go out of their way to convince mothers to give up babies if they have Down syndrome.” While the trend in wealthier countries is towards more commu- nity-based care, many low-income states still try to lock up people with disabilities at home or in specialized institutions and these people are often regarded as second-class citizens who can hardly hope for more than to be the passive recipients of aid. The Russian Federation, a middle- income country riding the tide of mas- sive oil revenues, is just one example of how far many societies still have to go to match their good intentions to ease the plight of the disabled with deeds. The country has a first-rate dis- ability law guaranteeing social security assistance to people with disabilities as well as unrestricted access to public transportation, government buildings, sports activities and a free education. In reality, for a person in a wheel- chair even leaving the house often proves a daunting task, as most older buildings in Russian cities and towns either have no lift or their lifts are too narrow for a wheelchair. In a recent case that ended in court, activists had to mount a full- scale legal battle to secure permission for a five-year-old girl with Down syndrome in a town near Moscow to be accepted into a nursery. According to official figures, of some 650 000 disabled children in the Russian Federation only about 185 000 receive general or special education. Over 70% of disabled children in the country receive little or no formal education. The situation is similar in most low and middle-income countries. To address the lack of services for the disabled, the United Nations has launched an offensive to galvanize gov- ernments and grass roots into action. In 1993, the General Assembly adopted the UN Standard Rules on the Equalization of Opportunities for Persons with Disabilities. The rules, written from a human rights perspec- tive, offer guidelines on how countries can create more equitable conditions for people with disabilities. Although not compulsory, they implied that states should take a strong moral and political commitment to take action. “The rules have contributed enormously to the development of legislation and to the confirmation and strengthening of disabled people’s organizations (DPOs),” Dr Federico Montero, Disability and Rehabilitation Coordinator with WHO in Geneva, told the Bulletin. “These elements have also played a key role in promot- ing and improving participation and inclusion of persons with disabilities in many societal activities.” Number one on the rules list is raising awareness. Last February the campaign received a surprise high-profile boost when the US Academy awarded its Oscar for the best foreign film to The Sea Inside, the story of a quadriplegic Spanish activist fighting for the right to die after 30 years of immobility. The film’s success is certain to bring the disability issue to the forefront of public debate. That debate may in turn help the United Nations implement its second key strategy for promoting the rights of the disabled, community- based rehabilitation (CBR). At the heart of CBR lies the notion that disabled people should achieve their rights within rather than outside their communities and societies. Over the years CBR has evolved from a medical model to a more holis- tic one, putting a major emphasis on human rights and inclusion. Though much work still needs to be done to ensure CBR’s success, studies so far in- dicate that it has already had a positive impact on the lives of those involved. CBR programmes have helped people with disabilities to become more visible and shown that they can con- tribute to family and community life. They have also had a positive impact on the self-reliance of many children and adults with disabilities, especially through training in daily living skills. As one CBR programme par- ticipant in Africa said: “Previously, I felt very inferior but after I joined the CBR programme … I have been able to overcome that feeling … I can now assess myself with others and say that I can perform certain activities and tasks better than the able-bodied.” O Andrei Shukshin, Moscow