How effective HIV care and treatment management helps sero-discordant couples and patients co-infected with HIV and TB
by Sanele Mvelase – Cross-site Facilitator: Health Promotion and Primrose Sithole - Special Project Co-ordinator: Zululand District
The Health Systems Trust (HST) has been receiving funding from the U.S. President's Emergency Plan for AIDS Relief (PEPFAR) since 2012. We work in partnership with the Department of Health in four districts in KwaZulu-Natal, where we provide technical assistance for TB and HIV programmes, and have placed supplemental staff in facilities to provide direct services to patients.
In the course of this work, we hear many stories from patients ‒ some motivating us to do more, some helping us improve our patient-centred approaches, and some that demonstrate the difference that our work makes in people's lives through PEPFAR's commitment to the dual pandemics of HIV and TB in South Africa.
This article touches on the stories of three patients who are partners in sero-discordant couples, and a patient with TB and HIV co-infection. These patients have shared their experiences with us in order to inspire others to seek treatment and dispel myths that contribute to the stigmatisation of people living with HIV. We also speak to the clinicians responsible for helping patients to remain on life-saving treatment.
Msizi Zikalala (not his real name) is from Zwelisha in Estcourt, a farming town in the uThukela District of KwaZulu-Natal, where he and his three siblings were raised by his mother. Now 32 years old, he is an informal vendor selling snacks, sweets and cigarettes at a local taxi-rank.
When his partner was pregnant, she was not feeling well and they decided to visit the Zwelisha Clinic, where they both consented to be tested for HIV. During the consultation, the healthcare worker asked them whether they would accept whatever the test results showed, even if their status was not the same; they agreed to accept the results and support each other as a couple.
"I know that there are other couples out there with other health conditions, like one partner has diabetes and the other does not," says Msizi. "Such couples do not give up on each other but continue with support and love for one another. It's the same with HIV, so I believe couples should support each other if one is HIV-positive and the other is not."
When the test results showed that Msizi's partner was HIV-positive and he was HIV-negative, the nurse assured them that the situation could be managed, and that many couples in a similar situation were healthy, happy and still in love.
Because they received their test results together, they spoke about their sero-discordant status immediately during the consultation. "My partner was emotional and crying," recalls Msizi. "I comforted her, and assured her that everything would be fine. I still love her and will not leave her. We are in this together and we will conquer. I believe that it's important to stay loyal to your partner and never allow anything to come between you. Another man might have moved on to another partner, only to find that that person is HIV-positive as well."
"The nurse offered me PrEP tablets (pre-exposure prophylaxis), which she explained would help to keep me HIV-negative, and my partner received antiretroviral therapy (ART)," says Msizi. "I have gone for repeat medication twice, and each time my vital signs are checked and I am re-tested for HIV."
To support each other on their treatment journey, the couple aligned their joint appointment dates, and ensured that they each receive the same number of months' medication supply, so that they return to the clinic together on the same day. The couple is grateful for the health services they receive. "The most important advice we were given was about me taking PrEP to stay healthy and HIV-negative, and my partner adhering to the treatment she needs," says Msizi.
Before learning about his negative HIV status, Msizi's greatest fear was his partner's reaction if his test result was HIV-positive. "Of course, now we wish that we were both HIV-negative, but the nurse helped me by explaining exactly what this diagnosis would mean, and the importance of accepting our results. She advised us on what we can do together to have a healthy life, and gave us leaflets containing more information."
Once diagnosed, Msizi committed to always being there for his partner so that if she falls pregnant again, she will have his support. "My partner had a miscarriage, and we don't have a child yet," he explains. "I hope to be a successful business man and run a proper tuck-shop so that we can build for our future."
Msizi's advice for other couples is to visit the clinic and be tested for HIV, so that they can receive either PrEP or ART, depending on their status, to stay healthy by taking treatment as required, and align their appointment dates to support each other.
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A 22-year-old woman, who lives with her mother and five-year-old daughter, sells fruit and vegetables at a local taxi-rank. When she had 'flu and breast tenderness, she asked her partner to accompany her to the clinic, where they were both tested for HIV and found to be HIV-negative. She also had a pregnancy test and was confirmed as expecting, so she enrolled in antenatal care.
The following month, the couple had a second HIV test; this time, she was HIV-positive and her partner tested negative. "I was scared that my partner would change and leave me, but he has been supportive and requested to take PrEP which was offered by our counsellor. I also did not understand what to do now that I was positive, but our counsellor explained HIV to me and the importance of adherence to treatment."
The nurse explained that she could still live a healthy life if she took her ART medication as required. "At first I could not remember everything we were told, since I was still confused about testing positive and my partner testing negative," says the patient. "We had been having unprotected sex for more than two years, and the nurse advised us that this can happen, which was a big lesson for us."
The patient made important life decisions after the couple's consultation. "I told myself that even though I will have to take treatment every day, I want to live a long life, grow my business and provide for my family. While I don't want to lose my partner, I also want to be independent, so I take my pills every day," she explains.
"We received proper counselling and support from the clinic, but we'd like the staff to create groups for people who have experienced the same thing ‒ people of our age group with whom we can speak freely," she says.
"My advice to others is that when you test HIV-positive, you must take your treatment and have one partner. If you test negative, you should take PrEP and use condoms to protect your partner. You can live a healthy life if you take your treatment, and it is easy if your partner is supportive. We even request the same dates for our clinic appointments, and also for blood collection."
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At Pongola Fixed Clinic in Zululand, a 17-year-old HIV-positive patient describes her experience as a partner in a sero-discordant couple.
"I have one child and am not working, as I'm still at school doing Grade 11. When I became pregnant, I tested positive for HIV. For a month, I could not tell my partner about my diagnosis. Then one day, when we were fighting over his many girlfriends, I told him that I was HIV-positive and that I thought it was his mistake. We then both went to the clinic and when his test was negative, he was put on PrEP."
This patient's greatest fear was that she would be visibly ill and that people in her community would judge her and stigmatise her for being HIV-positive. "Then the counsellor assisted me by telling me that if I take my medication properly, the virus will be supressed and neither my partner nor my unborn child will be infected with HIV. The counsellor explained that I have to love my medication, exercise regularly, eat healthily and protect myself with a condom when I'm with my partner."
"My goal is to take my medication and practise safe sex so that I won't infect my child and I can live a long, healthy life. I've learnt that when you are still sexually active, protection is very important. My advice to others is that even if you are young and HIV-positive, treatment will keep you healthy, and if you are HIV-negative, you can still protect yourself by using PrEP."
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A clinician describes how a sero-discordant couple is counselled to inform the pair fully about their diagnosis and allay any fears:
"As clinicians, we counsel a discordant couple by firstly explaining what it means to be in a relationship with a discordant partner. They can both live a healthy and happy life without the fear of infecting one another if the HIV-positive partner takes ART as instructed, because an undetectable viral load means that the virus is untransmittable. The HIV-negative partner should use PrEP. The couple can join a support group for discordant couples, and should they have questions about the guidance, they have access to the clinic via phone at any time."
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Mlungisi Zakwe (not his real name) is 55 years old. He has three sons from his late first wife, and now lives with his second wife but they have no children.
"I used to work at an industrial firm around Durban," says Mlungisi. "I stopped working when my first wife got sick to come and take care of her and she died. My two sons are working and the last one is looking for a job."
He decided to have an HIV test because he believes that it is important to know yourself as a person.
"I learnt about my TB infection about a month ago," explains Mlungisi. "I was working in Dundee and fell ill, coughing a lot. I lost my appetite and couldn't eat or sleep at night, sweating and feeling cold at the same time. I was weak, couldn't walk properly, and couldn't carry on with my duties at work, so I was sent away to seek medical attention. I consulted two different doctors and both told me I was well – but I was feeling sick."
He then decided to visit his local clinic where they took a sputum test and discovered that had TB infection. "They explained what this meant and the importance of starting TB treatment immediately, as I was very ill. After starting the treatment, I was able to sleep."
Mlungisi says that he'd like to write to the newspaper about the care he has received from the clinic.
"Without that help, I wouldn't be alive today as I saw that my days were numbered. At first, I was concerned to know that I have two diseases inside me – HIV and TB – but then I was happy to find out exactly what was wrong, as the doctors I'd seen previously could not help me. The nurse was kind and explained both conditions to me, advising me on what the treatment journey involves. Now I understand that I can fight both diseases with the medication I'm given."
Mlungisi's greatest challenge in managing his treatment adherence was dealing with side-effects of the medication, especially during the first two weeks of TB treatment. "At first, I was not able to walk or be active in the yard. But when I go for return visits to the clinic, a health worker takes my vital signs and the nurse discusses my treatment experience with me, helping me to deal with the side-effects and re-assuring me that I will be fine. She also gave me a leaflet to refer to for more information, but I am also welcome to go to the clinic for any reason, even if it's to ask for more guidance. I know now that I should not procrastinate in seeking medical attention."
Mlungisi's wife has been very supportive, taking two weeks' leave to look after him when he first started to take his medication. "It was not easy," he recalls. "I don't know how I can thank her for everything she's done for me."
His advice to others who suspect that they may have TB is that they should visit the nearest clinic without delay. "Using myself as an example, the clinic will do proper screening and tests," he says.
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A healthcare provider describes the challenges faced by TB patients, especially those who are co-infected with HIV, and the clinician's role in supporting them through their treatment:
The pill burden is demanding, as co-infected patients have to take numerous tablets at the same time, and side-effects (especially those arising from TB treatment) affect their adherence.
Patients have to attend multiple appointments if their TB and HIV visit dates are not aligned (this happens mostly in the first month of TB treatment).
Most patients, particularly men, adhere to TB treatment but interrupt ART once they have completed their TB medication. By using campaigns such as MINA and peer education, we are working to improve adherence rates in men.
Offering treatment literacy and advanced adherence counselling, including a personalised adherence plan and careful management of side-effects, is of great help to such patients, as is ongoing counselling and psychosocial support during every visit.
Disclosure to loved ones can also affect adherence, so on initiation of treatment, we link these patients with a Community Health Worker for home visits and support, and we encourage them to join support groups for easy communication and peer support.