LIVING OR DYING WITH AIDS

A 52-year-old man with AIDS was warded at the Port-of-Spain General Hospital in May last year. In 1997, he became aware that he was HIV positive. At the time of his hospitalisation, he was showing signs of deteriorating health — sores about his body, swelling in his face and groin. He had lost so much weight that he was reduced to skin and bones. During the three days he spent at PoSGH, medical personnel refused to touch him. He was left alone without being cleaned or the adult diapers he had to wear changed. He was not even given a drink of water. His family had to attend to his needs. “He did not even have a sheet to cover himself,” said his daughter-in-law. Although diagnosed with pneumonia, he was placed near a window. His bed was not screened so his condition was visible to everyone passing in the corridor.

When his family asked what they could do to ease his pain all the nurses could advise was “to make him comfortable.” They knew he would die, but not with the added suffering of the insensitivity from health personnel. It is said that HIV has exposed the best and worst in human beings. Health workers have the same fears about HIV/AIDS as the rest of society. Some health workers have not allowed fear to make them shirk their duty, others have succumbed. The public expects education and training to make health workers “know better” and be more understanding, but HIV has shown otherwise. An HIV positive woman in her early 20s thinks disciplinary action should be taken against medical personnel who stigmatise and discriminate (S&D). “They have to realise we are people too and they have to take normal health care precautions when dealing with patients. There are people on wards who do not even know their HIV status.” Christine (not her real name) said health workers should put themselves in the shoes of HIV positive people. “Many of them feel they can’t get it. They need to be less judgmental.”

The Health Ministry is aware that health workers are practising S&D. At the launch of TTPost/Caribbean Epidemiology Centre stamps to commemorate World AIDS Day, Health Minister John Rahael said hospitals, and health centres were the institutions where people expect to get care and support but “sometimes it is the first place where people experience HIV/AIDS related stigma and discrimination.” Rahael said people with HIV/AIDS should not receive a lower standard of medical care. He said there should be no isolation, name tagging or other methods of identifying someone as HIV positive. “There should be no breaches of confidentiality, negative attitudes of staff, use of negative verbal and body language by our health care workers. There should be no shunting of patients between wards, doctors or hospitals.” The Health Ministry has been tackling S&D with education of its personnel. “When you have special treatment centres and a lot of staff are not exposed to these patients when they do meet a case they deal with it with stigma and discrimination,” said Dr Ian Popplewell, principal medical officer (Epidemiology) at the Ministry of Health. He said religious beliefs and upbringing also play a part in the attitudes of health workers. The Ministry has received assistance with training programmes conducted by the Pan American Health Organisation and John Hopkins International Education programme.

The Caribbean Epidemiology Centre has been dealing with S&D “before the rest of the world,” said Cheryl O’Neil, communication advisor for the  Caribbean Epidemiology Centre (CAREC), Special Programme on Sexually Transmitted Infections. CAREC had done its research with health care providers in St Lucia and found a major barrier to them giving the best possible care to People Living with HIV/AIDS (PLWHAs) were the fears of their families that they could be infected. Values and attitudes also influence health care workers. O’Neil said there should be an established policy on the job to let health care providers know that it is unacceptable to practise discrimination against PLWHAs. Although policies may exist in different forms, she said everyone should be aware of them. “For a policy to help anyone, people have to know about it, be committed to it and have sanctions when people do not adhere, or else it is no use.”

Health workers must also have the materials necessary to protect themselves from occupational exposure. “Once you are engaging in any invasive procedure you treat everyone as HIV positive and put a barrier between yourself and the patient’s body fluids.” O’Neil said by having a sensitised (that they should not discriminate) and knowledgeable (knowing if they practise universal precautions they are less likely to be exposed) workforce will create the right environment for PLWHAs in the health care setting. CAREC conducted sensitisation training for health care workers in 2000. It explored the ideas, feelings and beliefs of professional and informal care givers. The workshop also focused on concerns and issues which may impact on the delivery of quality care to PLWHAs and provided an opportunity to share information about current local news with respect to HIV/AIDS. O’Neil said S&D not only hurt the person it is directed against but all who are sexually active. She  said fear of S&D is the only thing preventing thousands of people from coming forward and getting tested.

She said it is a public health benefit when a health facility is “welcoming.” PLWHAs feel comfortable enough to return for follow-up treatment and stick to their prescribed medication. “This has the effect of reducing the viral load — the number of HIV copies in the blood, it reduces transmitability, that is the ability to transmit the virus to someone with whom they are having sex.” The benefit to society is that PLWHAs who take their medication, keep good nutrition habits and have a positive attitude function as productive members of society, earning incomes and not being a burden on the State. “They stay away from hospitals and there is less strain on the public purse. There are all kinds of economic and social benefits, and you just have happier people.” Head of the SPSTI, Dr Bilali Camara, said refresher training took place this year for health workers and care givers who participated in 2000, and next year for participants in 2001. “The idea is to get the process moving so once they are trained they will not fall back.”

The sessions attempted to deal with S&D on various levels. People whose religious beliefs may cause them to stigmatise men who have sex with men or commercial sex workers were reminded that “all of us are God’s children and we should not discriminate.” HIV is given a “face” when they hear first-hand accounts from PLWHAs about the suffering they experience “and how it drives the issue underground.” Health care workers are asked to put their responsibility first and are reminded that they are being paid to provide a service. Dr Camara believed that those who went through the process have been “converted.” He said they understand that they have a responsibility to carry out, and cannot discriminate against human beings. They also learn that discrimination can have adverse social and economic impact. Health workers also have a manual to work with in the “Clinical Management of People Living with HIV/AIDS.” It has been updated and new topics have been included because of advances in treatment and increased knowledge about the disease.

Major changes have been made in the section dealing with antiretroviral therapy and mother to child transmission. Dr Camara said a great deal of time was spent on coming up with medications for first, second and third line treatment to minimise the possibility of drug resistance. New sections have been included on malaria and HIV/AIDS and dengue and HIV/AIDS; oral medicine HIV and dentistry; mental health and HIV/AIDS. He said S&D in the Caribbean is a “serious challenge” since other factors are also at work —skin colour, class etc. Dr Camara said Caribbean leaders in sports, politics, the church and culture must become more involved. “All of them should be able to identify with the issue and help.” He said regional leaders are still too much in the background and should do more than talk about HIV and give money at a distance. Continued in tomo-rrow’s Newsday.