International Saving Lives volunteer Emma Wallis will be blogging over the next few weeks from Siteki, Swaziland. In the first of her dispatches, she writes about the general HIV situation in the country, and the daily problems of communication and persuasion which face doctors seeking to convince patients to test for HIV…
Introduction to the problem of HIV in Swaziland
During my first week working in a hospital in Swaziland I have come across many patients with HIV. It is estimated that 90% of inpatients in the hospital are HIV positive, and the average life expectancy is only 37 years. I have met many people with inspiring and emotional stories, and I will write about a few of these stories to illustrate what life is like in Swaziland for people living with HIV.
I should firstly set the scene: healthcare resources here are scarce compared with England, however the demand is great. People often present to the doctor with advanced disease which often can be treated. However in some case the treatment is not available in Swaziland and in these situations the patients often cannot afford to travel abroad. Consultations with the doctor and any investigations or treatment have to be paid for at the point of use; it is roughly £2 for a consultation. However, HIV clinics and treatment are free for patients, in the hope of improving the number of people testing for and being treated for the disease.
One interesting thing I have realised during my first week is that although HIV is worryingly common (it is estimated that 49% of 25-29 year old women have HIV), there is still a great stigma surrounding the disease. The following case report will illustrate the impact that the stigma of HIV has had on individuals.
The impact of stigma: A widow with 4 children, overcoming fear in the face of death
A lady presented to the clinic who had known she was HIV positive for some years but had experienced difficulty coming to terms with the diagnosis. Her husband had recently died – he was HIV positive and did not receive treatment, subsequently getting very ill and dying the month previous. This bereavement had made her realise the importance of treatment and today she came to the clinic, dressed head to toe in black, to face her fears and test for HIV. She had travelled over 80 km to attend the clinic. Thankfully she was clinically well, despite her default from medical care, and her only health complaint was post-herpes zoster neuralgia.
After blood tests she was told that her “blood soldiers” (aka her CD4 count) was less than 350 and that because of her herpes zoster infection it was advised for her to start ARV drugs. She was initiated on HAART, counselled on the importance of adherence (taking medication every day at the same time ), of taking the medication with food and only having protected sex (always using a condom). We also discussed if her children – 10, 14, 16 and 22 years old – knew their own status. When we discussed why she hadn’t attended the clinic earlier she said she had been too afraid: of being diagnosed as positive, of the acceptance of the disease in wider society; afraid of the treatments, afraid of financial costs of treatment, but mostly afraid of the stigma of being treated for HIV, of who would see her in the clinic and of the shame she would feel.
However, she then explained that she now thinks that those people, like herself, who refuse to admit their status and do not attend the clinic are “stupid”. Perhaps what she meant by this was that fear is blinding their common sense. Unfortunately it took her husband’s death to empower her to take action and save herself from the same fate. We also discussed how it was very important that she made sure that her children knew their status, so if necessary they too could receive treatment and prevent any more unnecessary bereavement in the family.
Travelling miles for treatment to avoid stigma at home
Another patient had requested the transfer of her own HIV care from her home town to a clinic over 80 km away. The reason she did not want to attend the clinic in her own town was simple: she was worried that other people would see her and know she was HIV positive. When we asked her, “You have to pay for the bus and it takes over an hour – why bother with this extra hassle?” The woman replied, “I do it for my husband.”
She then explained that her husband had not been tested for HIV and that, although he thinks he may have the infection, he does not want people to know they are an HIV positive couple. Although he has not yet been tested, his wife explained that he is in denial: she knows her status and they have been having unprotected sex regularly. In addition, he has recently become unwell. Despite these risks and recent illness, his wife explained that he refuses to go and get tested as he is scared of the stigma and refuses to accept the truth.
During the consultation it was explained to her that she is the only key to her family’s health: if her husband does not get tested he will become very ill and he will soon die. Straight talking here is something we must very much to abide by in order to get across the seriousness of the message. “Do you want your children to be orphans?” asked the doctor. “There are too many orphans in this world, do you want your children to be arranging your and your husband’s funeral?” This message was very direct, and hopefully hit home. The doctor then advised, “Go home make you husband a nice meal, make sure he is happy and satisfied before you talk to him about this problem. If you need to you must blackmail him – tell him you will tell his mother that you and him are HIV positive.”
The patient had told nobody about her diagnosis other than her husband and was extremely anxious about their reactions. Another important message the consultation communicated was the importance of protected sex with her husband even though they are both HIV positive. The doctor explained that the HIV virus can become resistant to the medication – this resistant virus can then be transferred by sex, and this causes increased difficultly in treating HIV. In Swaziland, there are limited antiretroviral drugs and so once a patient is resistant to the initial regime there are only a few more options available. Thereafter, if they become resistant again, there is are no further treatment options available and HIV will go on inevitably to damage their immune system, leading to increased risks of infection and cancers. These necessarily bald messages hopefully resonated with the patient and she will be returning to the clinic in a months’ time to review her treatment. Hopefully she will have persuaded her husband to come and get tested and commence treatment, too.
Apparently there are many similar problems in Swaziland; people are very cautious to keep their HIV status a secret, even if it means travelling further to clinics and putting their lives in danger. Perhaps one problem is that people don’t know about HIV and how it is transmitted, nor how it affects your health. Perhaps they are not aware that HIV treatment is available and free, and that this treatment can prevent the virus having an affect on the immune system – therefore dramatically prolonging life. In addition, the underlying stigma surrounding the disease is a great concern to people in Swaziland, despite the fact that nearly half the population suffer from the disease. There are many issues involved in this highly emotive and sensitive subject.
Over the next few weeks I hope to gain a better understanding of the reasons behind this stigma surrounding HIV, as well as understanding and reporting on other common HIV-related problems in Swaziland. To mention a few: why is the rate of HIV increasing in this country, what problems contribute to, and are the consequence of, patients not adhering to medication, and what issues surrounding malnutrition and treatment of HIV? I’ll write again soon…