Improving the quality of life for terminal AIDS patients

"Treatment exists, but at unaffordable prices for most of the patients"
GUATEMALA, June 2000 - A dozen children between four and ten years old are playing in the garden of a humble house. It might be a school, if it were not for a couple of adults, visibly sick, lying down in the sun on the grass. Another woman carries a child in her arms. He is gaunt and shows clear signs of cerebral damage. In the corridor of the house, a picture and a short text are a reminder that little Miriam (name changed to protect her identity) died of AIDS a couple of months ago. Back on the grass, a clown is giving a circus performance and children are having a good time. At Hospicio San José every day tries to be party time, because life here is a race against adversity. Officially there are 3,500 people with AIDS in Guatemala. However, experts working in the fight against AIDS believe there are actually between 20,000 and 30,000 patients. Medecins Sans Frontieres (MSF) is working with terminal AIDS patients from the poorest social groups, trying to improve their quality of life. MSF is in charge of the medical activities in Hospicio San José, a private non-profit institution outside Guatemala City. The team carries out medical consultations, organises and manages the pharmacy and trains the local medical staff in identifying opportunistic diseases, as well as in sick bay procedures and bio-security policy. "We have also developed a reference network for specialised consultations," explained Marcelo Fernández, MSF doctor at Hospicio San José. "The Hospicio is small and we don't have these resources. At the same time, this allows us to be in touch and co-ordinated with the professionals working at the national AIDS programme." Hospicio San José offers psychological support for patients and their relatives as well as the institution's staff members. On one hand it is necessary to help the patient to get over the initial rejection to accept they suffer from AIDS, as well as the stigmatisation they experience in the Guatemalan society. On the other, death is present at all times and psychological and emotional preparation is needed to accept it as an irreversible fact. Around 80 patients receive medical assistance either through the hospital or with home visits. "Home visits allow as to make the follow-up and treatment of patients who have been discharged, as well as to identify the ones who comply with the admission criteria," continued Dr. Fernández. Unaffordable treatments Expensive, modern triple-therapy to treat AIDS patients is within the reach of few people in Guatemala. These anti-retrovirals cost between $US700 and $US1,000 per month, while the average monthly salary is $US120. "As a doctor, the most difficult part to accept is the fact that you know treatment exists, that it is available in Guatemala, but at unaffordable prices for most of the patients," said Dr. Fernández. In developed countries, a person without any AIDS treatment can develop AIDS between five and ten years after being infected by HIV. Treatment of opportunistic diseases and anti-retroviral drugs can improve both the quality of life and extend life expectancy. "In Guatemala, due to the population's chronic malnutrition and precarious living conditions, the disease develops in an average of 13 months after being diagnosed HIV positive," explained Dr. Fernandez. "The lack of access to costly treatments reduce the life expectancy to an average of two years after being diagnosed." In its attempt to improve these patients' quality of life, Hospicio San José is engaged in a struggle to provide them with anti-retroviral treatment. "MSF doesn't buy the open market anti-retrovirals because they are very expensive," said Dr. Fernández. "Therefore, through the Hospicio, we have to reach agreements with laboratories to buy them cheaper or to receive them as private donations. Treatment of children - and adults in charge of children - are prioritised to avoid, as much as possible, kids being left as orphans." Within the framework of the international campaign to improve the access to quality essential medicines, MSF is considering introducing general anti-retroviral treatment at Hospicio San José. "The aim is to look for possibilities of gaining entry to the generic drugs market, reducing considerably the treatment price," said Dr. Fernández. "The idea is to show that anti-retroviral treatment improves the patient's quality of life reducing hospitalisation costs. We also want to help the government to claim for the rights to generic drug supplies given by the international trade agreements." Even the necessary laboratory analyses, such as the CD4 recount (level of organic defences) and viral charge (plasmatic levels of the virus in the organism) are very expensive. "We have reached agreements with a private laboratory in the city of Antigua and some public hospitals to carry out these analysis free of charge or at reduced costs," continued Dr. Fernández. Prevention Generally speaking, the profile of a Guatemalan AIDS patient - male or female - is between 30 and 35 years old, with a low or very low social-educational level. Ninety percent of the diagnoses are symptomatic - this is when the disease is very developed and associated opportunistic diseases come up. There are only a few cases of AIDS being transmitted from mother to child or by blood transfusion. Sexually transmitted AIDS accounts for between 85?0% of the cases. "People know AIDS, but they ignore the transmission ways," explained Dr. Fernández. So prevention is very much part of the programme that MSF is developing in healthcare centres and schools in the Department of Quetzaltenango. It is a follow-up to the programme developed at an earlier stage in Guatemala City and it aims to support the local authorities in implementing the national AIDS strategy. "We have developed educational material to carry out awareness and training workshops for parents, pupils and teachers," said Dr. Olaf Valverde, Co-ordinator of Urban Projects. "On the other hand, we are developing a co-ordinating network between the authorities at the Ministry of Health, NGOs, healthcare centres and other organisations working on AIDS control programmes to define joint actions regarding the assistance of AIDS patients at departmental level." Activities include the training of local medical staff, donation of drugs and medical material to treat opportunistic diseases to healthcare centres, as well as direct medical consultations. AIDS law A law protecting the rights of AIDS patients and developing the institutional framework of the national AIDS programme was passed unanimously by the Guatemalan government last May. As well as allocating five million Quetzales (around $US700,000) every year, the law establishes the right to work, education and medical assistance for AIDS patients. "Thanks to this law, all AIDS patients will have the right to receive the drugs they need, including triple-therapies," explained Dr. Belén Pedrique, Medical Co-ordinator for MSF in Guatemala. "In terms of economic costs, the government faces a huge challenge, because only expensive commercial drugs are marketed in Guatemala. However, the law considers the possibility to import generic drugs in accordance with the international trade agreements. Within our international campaign to improve access to quality generic drugs, we will support the Ministry of Health in the search for generic drugs at affordable prices." Hospicio San José's file: - Starting date: July 1999 - Beneficiaries: 20 hospitalised, 60 in ambulatory care - International staff: 1 - National staff: 31 - Funding: 100% MSF private funds Prevention programme's file: - Starting date: June 1998 - International staff: 3 - National staff: 9 - Funding: 70% MSF private funds, 30% EU