Coping with AIDS in Kenya: do we care enough?Rosemarie Muganda-Onyando
Every weekend, Kenyans flock to their upcountry homes to attend funerals of relatives, colleagues or friends. If they stay in town they will most likely be attending a funeral meeting or wake. People are dying everywhere: there is so much death around. Although not all these deaths are AIDS related, the number of people dying from HIV/AIDS related complications such as TB and pneumonia has gone up drastically over the past few years. According to figures from the National AIDS and STD Control Programme (NASCOP), the true number of AIDS cases is not known: since 1984 there have been over 80,000 reported cases but it is understood that very many cases go unreported, perhaps as high a rate as 70 percent. The reasons for the underreporting include the fact that many affected people do not seek hospital admission; also some medical practitioners do not record a diagnosis of AIDS because of the stigma attached to it. Despite the magnitude of the HIV/AIDS problem, one of the saddest things is the glaring lack of support for both families and victims. Many health care facilities do not offer counselling services. Once patients are diagnosed as being HIV positive, the manner in which they are informed of their new status leaves a lot to be desired. In most cases other members of the family are not even told. While I understand that doctors cannot violate the doctor-patient privilege by divulging such information, I sincerely feel that in the case of AIDS, the family should be told, if only to help them cope and deal with it together. I say this because most people do not understand what it is like to live with AIDS or to live with someone who has it. The pain of watching someone die painfully, slowly, knowing that there is really nothing you can do to either alleviate the suffering or to end it altogether can only be understood by those who have gone through it personally. The hopelessness, the lack of support, the financial burdens that result from frequent hospitalisation, is very traumatic. Some people may never recover from the trauma. I remember walking into Kenyatta National Hospital to visit a patient a few years ago. In the next bed there was a patient who was so neglected there was left over food all over the place. Food would be brought to him and left there. One day he asked for some water and I went to get it for him. On reaching close to the bed, there was his observation chart with his HIV/AIDS status proclaimed on it for all to see. If this chart had said that the person had malaria, he would not have been treated the way he was, even by the medical staff. Immediately I began to understand why everyone had been treating him that way, behaving as if just being near him would infect them. While the level of stigmatisation is reducing, many people still associate the disease with promiscuity and blame the victim. But people do not always get AIDS because they are promiscuous. Once someone has AIDS how or where he or she acquired it should become irrelevant. I realise how easy it is to lay blame and to hold people responsible. But this causes bitterness that makes it impossible for us to help those living with AIDS to cope better with the calamity. These are some of the issues that need to be addressed during counselling sessions. Many people living with the disease or with people who are infected can tell you that while the stigma is not as bad as it used to be, it is still a big problem. In addition, there is the fact that many medical practitioners do not even discuss the medical and social implications of the condition with both patients and their families. Most people therefore do not know what to expect, or how to cope with it. The possibility of making voluntary counselling and testing sites available needs to be reviewed. This would make it possible for individuals to know their HIV status while receiving adequate counselling regarding treatment and prevention.. These sites could be private or public, but regulations will have to be put in place to check the reliability of the test kits and processes and to assure the confidentiality of those who are tested. There should be greater provision for both pre- and post-test counselling to make certain that the emotional and behavioural needs of the individual are addressed. There is need for a comprehensive prevention policy. This policy should not only address itself to seeking ways and means of preventing and reducing new infections, but must address the important issue of dealing with those already affected. This would include issues such as availability of drugs and support for victims and their families. Currently drugs such as the anti-virals are too expensive and are out of reach for many families. New drugs that can help alleviate the suffering of AIDS people should be made available as soon as they reach the market and should be affordable. The government should subsidise the cost of medication so that more people are able to buy them. Apart from that, many doctors can not explain or do not understand the full consequences of contracting the disease and are unable to explain them to both the patient and his family. In fact most doctors do not even want to try new treatments . I do not understand this but since very little is known about the virus many medical practitioners are probably just as ignorant as ordinary people. The need for counselling facilities is paramount. Due to the stigma that is attached to AIDS, many HIV infected individuals and their families try to conceal or even deny the existence of the condition. There is usually a lot of denial, anger, blame, guilt and shame by both the victims and their families. Many families suffer severe psychological trauma, which is made worse by the secrecy that surrounds it. Despite all this, there are people who¾as a result of counselling¾have responded courageously and are able to lead more meaningful lives. The importance of counselling cannot be over emphasised. While it is important to deal with AIDS as a policy issue, the most important change that needs to occur is behaviour change. Almost anyone who is sexually active in Kenya today can contract the HIV virus. This is not an alarmist statement: it is the reality, especially for people with multiple partners or whose partners have themselves several sexual partners. Certain practices that increase risk and vulnerability should be discouraged. However, equally important is the need for Kenyans to change their attitude towards AIDS sufferers and their families and show more compassion and understanding because this is a problem that can afflict everyone.
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