HIV Stigma – a new form of dying

Alex was the first person I ever watched die, which was odd and unexpected, because in my mind he was a survivor. He became infected with HIV in the early 80’s, when there was absolutely no hope of living with HIV for very long and there was only certainty of a horrible death, often apart from friends and family.

But somehow Alex did survive, first with no treatment and then with the few initial drugs that became available, and finally with more sophisticated treatments that could kick back the virus in the body and extend life indefinitely.

So Alex, like many long term survivors had to shift from preparing to die to figuring out what they would do next. Alex decided to go back to Indonesia, his birthplace, and start a business, buy a house and try and put the struggle of the preceding decade behind him.

And yet, eight years later, Alex died in a top private hospital in central Jakarta. The odd thing is Alex did not die because he had HIV or AIDS, he died of a fungal infection in his kidney that went untreated because the medical team in the hospital refused to treat him.

HIV did not kill Alex but the stigma of HIV did. This is not just something found in one central Jakarta hospital but an issue that is pervasive across Asia. The 2011 People living with HIV Stigma Indexfrom UNAIDSshowed that discrimination in the health sector was the most common form of discrimination experienced by people with HIV. More than half of the people surveyed noted that they had been denied care at some point or treated differently than other patients. In some cases, as with Alex, patients ended up dying because providers simply denied them admission or admitted them and just ignored them.

Most of the issues related to stigma and discrimination in health settings are linked to the provision of general medical care rather than HIV specific treatment, and it is clear that people with HIV who are living longer because of AIDS drugs now need medical care for other things that may or may not be HIV related, and this is often when they face the most difficulty.

To understand these issues better the ILO carried out research in hospitals in four countries in the region; China, India, Sri Lanka and Thailand ¹.

China provides an interesting example of what has worked so well with HIV programmes and what still needs to be improved. In 2004, China launched one of the most ambitious and generous free HIV treatment programmes in the world. People with HIV have access to top quality HIV treatment in every province, with additional support for children’s education and cash transfers for poorer families. Treatment is provided through infectious disease hospitals by trained doctors and nurses. The challenges in China occur, however, when people with HIV try to access treatment in general hospitals rather than hospitals designated to treat HIV.

The ILO research showed that people with HIV were consistently denied medical treatment for a range of conditions that were not HIV related, such as child birth, heart conditions, eye disease and even broken bones. More than 77 per cent of people with HIV surveyed in the country noted that they had been denied medical treatment at some point in their lives.

Similar results were found from surveys in India, Sri Lanka and Thailand . The studies showed two primary factors that give rise to discriminatory practices: negative attitudes towards people with HIV and lack of consistent occupational health and safety measures. In most cases knowledge about HIV is adequate but attitudes associated with HIV - particularly related to homosexuality, sex work and drug use - often lead to discriminatory treatment towards people with HIV. In addition, OSH procedures to protect health workers from occupational infections caused by needle pricks and handling HIV-infected blood were not consistently available. Specific issues included a lack of sufficient, quality, rubber gloves and other protective equipment, and preventive treatment for those exposed to HIV to stop it from progressing.

Practical measures for reducing discriminatory practices in healthcare workplaces can be found in global guidelines and training materials produced jointly by the ILO, UNAIDS and the World Health Organization ². The first step is to train healthcare workers, including on discrimination and issues related to drug use and homosexuality. Second, it is equally important to ensure that measures to protect health workers against HIV infection and other blood-borne viruses such as Hepatitis B and C, are taken consistently. Finally it is essential that health workers exposed to HIV during their work receive employment protection, health care and disability support in ways that are consistent with other occupational diseases.

Working in partnership with employers, trade unions and the health and labour sectors, these global guidelines can be applied in health workplaces in this region, and ultimately, the ill treatment and senseless deaths of people with HIV can come to an end.

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Article prepared with support from Alexandra Pavli, Programme Associate on HIV and Migration, ILO Regional Office for Asia and the Pacific

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¹ Thailand research is ongoing
² Guidelines on health services and HIV/AIDS, ILO and WHO, 2005
  A Guidance Note on improving health workers’ access to HIV and TB prevention, treatment, care and support services, ILO, WHO, UNAIDS, 2010