“Are you any good at counselling, Doc?” asked the nurse at a community clinic.
“I’ve done a few courses in the past. I am not bad, but I can’t counsel in Nyanja,” I replied.
“That’s no problem, she can speak English.” Hmm, but well enough to understand the nuances of counselling? And I don’t have a deep familiarity with the local Kunda culture.
The nurse gave me no choice and beckoned a well-dressed young lady to approach me. “Counsel her. She’s HIV positive, refused Option B+ (being treated with anti-retroviral drugs in pregnancy and continuing after the birth), and would not let us treat or test her child.”
The clinic was at an end. She was one of the last mothers. We moved to a quiet place where we could not be overheard.
I began with “Hello, my name is Doctor Ian. How can I help you?”
“I don’t know if you can help me,” she replied. Touche.
“Do you know your HIV status?” I asked.
“They tested me at the antenatal clinic. They said I was positive.”
“Do you believe it?” I said.
“No, I feel so well. I don’t think the test was correct,” she said.
“When someone tests positive, the lab always does a second test to confirm the result. We are very sure that you are living with HIV.”
This was too confrontational. She stopped talking and looked down.
“Has your husband had a test?” I asked.
“No, the clinic tried to get him to come for counselling and testing but he refused,” she replied.
“So he knows that your test was reactive?”
“We both don’t believe it,” she said.
The mother was in total denial. She felt that her child was growing normally and had been breast fed despite advice to the contrary by the nursing staff.
I have been involved with a similar situation in the UK when one of my patients who had been taking anti-retroviral drugs stopped and became pregnant. The dilemma was balancing the rights of the unborn child to have potentially life-saving treatment with the rights of the mother to refuse medication. Eventually, the mother relented and restarted treatment, or the child would have been removed from her care soon after birth by a court order. Things are different in Zambia.
“OK,” I said, “If you don’t believe it, that is up to you. We cannot force you to take medication. But I am worried about the child.” I decided to take a different tack, emphasising the good, rather than the bad.
“Before we had anti-HIV drugs, we discovered that about a quarter of babies born to HIV positive mothers became infected. Another quarter became infected after birth from breastfeeding. So the chances are 50:50 that your child is not HIV positive.”
“If the child’s test was non-reactive, we could all breathe a sigh of relief,” I said. “I am sure that you would be very happy with that result.”
“Yes I would, but I don’t need to have my child tested,” she replied.
“No one is going to force you to do this,” I said. “But if it was my child, I would want to know if the child could benefit from life-saving treatment. You might think that it is best not to know, but how would you feel if the child gets sick and you could have prevented this?”
Again, this was too confrontational and heavy-handed. She dropped her gaze and disengaged. “I will bring the child to the health centre next week,” she said. We both knew that this would not happen.
“I can bring the test to the village at next month’s community clinic if you want,” I offered. She nodded and returned to her child. I looked at the child’s weight chart, which showed faltering growth. I noticed a strange rash on the child’s scalp. As I bade her goodbye, I thought that the odds were against the child.
Broadly speaking, infants infected at birth with HIV fall into three groups. One third succumb to opportunistic infections quickly, before the first birthday. Another third gradually become ill over several years, and the last third is incredibly resilient, remaining well for a decade or more.
The mother is in denial, but what could be in store for her if she faced the truth? Would her husband accuse her of infidelity, beat her up and then abandon her? Would her world fall apart?
This situation is not unique. A recent paper in the Journal of the International AIDS Society https://doi.org/10.1002/jia2.25220 analysed the experience of people in Swaziland who tested HIV positive and immediately started treatment in 2014, despite having no symptoms. Most patients accepted the diagnosis and treatment but “others doubted the accuracy of an HIV diagnosis and the need for treatment in the absence of symptoms or signs of ill health, with some experimenting with treatment‐taking as a means of seeking evidence of their need for treatment and its effect.”
UNAIDS reckons that we can control the global HIV epidemic in a few decades if we adopt their 90:90:90 strategy – 90% of people know their HIV status, 90% of those who are living with HIV are taking anti-retroviral drugs and 90% of those on treatment have no detectable virus in their blood. It all sounds so simple and logical. However, prior to late 2015 when “Treat All” was proposed, health workers would only treat the patient immediately if they were very unwell or their immune system was severely damaged. We would wait until their CD4 count dipped below 350, or even 500, before offering treatment. This approach allowed the patient time to come to terms with the diagnosis and see the need for treatment. “Treat All” and Option B+ approaches both offer treatment at the same time as the patient has been told the diagnosis – a double whammy.