By Tapiwanashe Kujinga, Member, AfroCAB.

Any thoughts of antiretroviral therapy brings me back to the early years of the century where an HIV diagnosis struck fear in any person. Progression to AIDS was equal to certain death. Those were the days when we frequented the cemetery and buried many good friends, the cause of death was always discussed in whispers. To mask the stigma of AIDS, we used new language, “he was sick”, and then everyone knew that it was AIDS. In this gloom, antiretroviral therapy (ART) came like a miracle in a time of death, like a meteor in a dark sky, an oasis of life in the vast Sahara. Even though we could not pronounce the phrase, we nevertheless marvelled at its life-saving qualities.

But it was not all fun and games, I remember wincing at the size of the didanosine tablet that my foster daughter had to take daily, and was secretly grateful that it was not me who had to swallow it. Of course, she immediately reacted with a skin rash and was switched to a new combination – nevirapine, lamivudine and stavudine. This meant two tablets per day and sweet relief from the six tablets she had to take previously, including the humongous didanosine. While she thrived on that combination, some of my friends did not. One, a pretty and prim lass, suddenly lost her petite figure and her neck and shoulders grew to grotesque proportions. Overnight she changed into a different person physically, although still sweet inside. My aunt complained of a continuous burning sensations on the soles of her feet until I advised her to stop taking Stavudine. But this was a time when ART was more precious than diamonds – the nurses would tell you to grin, bear the side effects and thank your lucky stars that you were still alive. It was a narrow choice between ART or certain death, anything else, including deformed bodies and peripheral neuropathy, should be tolerated and considered to be a small price to pay for staying alive.

Somewhere along the line we found our voices as activists and demanded an end to drugs that caused damage to people’s bodies in a world that was awash with better alternatives. We demanded that Stavudine go, together with its lipodystrophy, peripheral neuropathy, lactic acidosis and the rest of it. And we won that battle. But the war goes on.

And so today I am spending the day in this room full of young people and adolescents living with HIV. Full of energy, intelligent, inquisitive. There is never a dull moment with this crowd. I am constantly reminded of my own daughter who could have been one of them, but she had had enough of the ART and quietly defaulted. By the time I came to her help it was too late. It has been nearly six years since we buried her on a cold windswept hillside, but I still cannot believe that she is gone. And so we discuss the importance of advocating for better ARVs with this young crowd. They tell of nasty side effects with their current regimens. Any question asking about side effects elicit hands furiously raised in demand for the microphone. They complain of the dizziness induced by efavirenz. Another one tells of vivid dreams and a vivacious girl chips in with her experience with nightmares. Another guy says he can hardly get a full night sleep, but it is his colleague who comes in with a different complaint. He started to develop girlish boobs. Yes, there they are peeking from under his oversized T-shirt as well developed as those of a nubile girl. Gynaecomastia, I tell them, the scientific name of the condition, and I leave them to practice the correct spelling.

We talk of ARVs that will stop the high rate of teenage default. The spectre of death is not enough to stop their peers from defaulting on the lifesaving pills. Some cannot stand the size of them which makes swallowing a harrowing experience and some dread the side effects. And so we discuss dolutegravir, one of the new kids on the ARV block. The youngsters sit at the edges of their chairs as I roll off the pros – smaller compound, more robust, higher barrier to resistance, better tolerability, and the list goes on. I tell them of other pipeline drugs such as cabotegravir and rilpivirine which will free them from the daily pills. They want these drugs now, they say. We talk of how they can get it. Advocate for it, we tell them. It will not come to you on a silver platter.

And so they go away, still taking their current ARVs, but dreaming of better ones with less side effects and determined to get access to them.

Through the Medicines Patent Pool’s licence with ViiV Healthcare, low-cost, quality-assured generic dolutegravir and combinations containing dolutegravir are becoming available in a large number of low- and middle-income countries.