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Love to Loss and Hope: HIVs impact and the promise of treatment innovations

Upon her arrival at the clinic, Mai Tendai finds a line has already started to form. Among the crowd, she spots familiar faces, people who were part of her peer support group when she was newly diagnosed and just starting treatment. Their shared experiences creating an invisible bond. She also sees new faces, like a young mother holding her baby close, both seemingly petrified of the uncertain road ahead. She longs to extend a comforting hand, to whisper words of strength and hope in her ears. To tell her, 'I've walked this path, it's difficult, but you'll find your way. You'll be alright.'

Mai Tendai quietly takes her place in the line, awaiting her turn for registration. This involves getting her vital signs checked, something she appreciates, despite her unease about her increasing weight. She can't help but wonder if it is related to her medications. She remembers her prior struggle to maintain a healthy weight before her diagnosis.

Despite the long journey to the clinic she is happy to be there. She is fond of her clinic nurse, a kind and reassuring presence during each visit. However, today she will be seeing the doctor for her viral load test results. The doctor only comes every other week and his visits aren't as comforting. She’s noticed his perpetually hurried demeanor, his seemingly detached attitude towards her concerns, and his focus on the numbers. Numbers seem to dominate his day - the number of waiting patients, the tally of missing results he’s obliged to track down, and, of course, her own viral load count. Before her encounter with HIV, the term 'viral load' was a foreign concept, unknown and irrelevant to her daily life. Now, it has seamlessly woven itself into the fabric of her vocabulary, becoming an integral part of her routine language.

Mai Tendai often reflects on the way her life bifurcated into two distinct epochs: the era before HIV and the era after. These diverging timelines forced her to grow and adapt in ways she could never have foreseen.

In the 'before HIV' phase, she fell in love with Panashe who was a few years her senior in high school. He was handsome, intelligent and confident. Panashe was among the few in their school who had excelled at 'O Level' and secured a spot at a prestigious religious school for his 'A Levels'.

However, at the new school, he found himself to be a small fish in a big pond, surrounded by equally intelligent boys from across the province. No longer the favored student, Panashe was crushed by this new reality, he struggled and barely managed to scrape through his A Levels.

His grades were not high enough for entry into the nation's top universities, but Panashe was determined to succeed. He viewed his A level grades as a temporary setback. He hustled, dropping resumes wherever he could and eventually landed an administrative job in the city and further bolstered his career prospects by undertaking part-time studies in business administration.

Yet, throughout all this, his heart never strayed from Mai Tendai. He poured his love into heartfelt letters, sent her small gifts via the rural bus mail system. Each time she spotted the local Tenda Bus in the distance, her heart would dance with anticipation, hoping for another letter or package from Panashe.

Mai Tendai's 'O Level' results weren't quite as impressive, so after school, she slipped into the rhythm of rural life. Her dreams swirled around the day Panashe would propose, envisioning the family they would one day raise together.

Panashe wanted her to move to the city so they could be together, but his modest salary barely covered his rent for a single room in a small crowded township house. Not to mention the additional responsibility of saving for the 'roora', the traditional payment made to the bride’s family, and saving for a down payment for land to build a home. After four years of courtship, Panashe finally proposed, and Mai Tendai became his bride. But they decided she would stay in the village for now.

In the early days of their marriage, Mai Tendai cherished the end of each month when Panashe would return home laden with groceries and gifts. He would bring home kitchen essentials such as cooking oil, flour, salt, sugar, and pasteurized milk, but the delight that warmed her heart the most was her favorite indulgence - a Cadbury Mint chocolate bar. Her love for her husband was profound, and it tugged at her heartstrings each time she had to watch his bus recede into the dusty horizon as he returned to the city.

In the span of four years, they were blessed with three children, a son followed by twins. The task of raising the young ones, while rewarding, was undoubtedly taxing. Mai Tendai was grateful for the proximity of their village to her mother's and her husband's family, yet she found herself longing for the unity of her own family. Panashe and Mai Tendai’s shared moments, once brimming with affection and dreams of a future together, became more acrimonious. Disagreements became more frequent, and Panashe's visits started dwindling, occurring only every other month or during public holidays. The distance between them grew. He felt that she didn't recognize his toil and sacrifice, didn't understand the grueling city life and the constant struggle to make ends meet. Meanwhile, she felt increasingly alone, heavily dependent on income earned from the crops she grew in her garden and fields for the sustenance of their family. Her heart ached with the nagging fear that his love for her was waning.

Unbeknownst to Mai Tendai, Panashe's heart had strayed. He found companionship in a 21 year old woman, who was drawn not only to his dreams and confidence, but also his prospects. Unlike the other township boys, Panashe seemed destined for greater things. He too had fallen for her, finding in her a relief from domestic squabbles and a break from the constant pressure to transform dreams into reality. She was a source of fun, and fun was what he craved. Tragically, they were both unaware that she was HIV positive. A prior relationship with a much older man had been a means to finance her high school education and provide her with pocket money, had saddled her with HIV. In a tragic twist of fate, she would unknowingly transmit the virus to Panashe, who would subsequently pass it on to Mai Tendai.

Panashe had concealed his extramarital affair for years, and when he discovered he had HIV, stigma and shame prevented him from confiding in Mai Tendai. Consequently, he became more detached from her, rarely visiting their rural home to avoid the inevitable disclosure. Tragically, by the time he told her the truth, Mai Tendai had already contracted the virus. The years of stigma and shame had led him to delay seeking care and eventually only started treatment after he had been diagnosed with advanced HIV disease and TB. He hated taking the medications and had allowed herbalists and religious charlatans to periodically sway him away from taking the medications prescribed at the clinic. This inconsistent adherence to his medication regimen had led to his development of drug resistance.

His local HIV clinic had exhausted all options to manage his virus, and he was referred to a specialist hospital. Initially on a simple regimen of a single daily pill, he was now prescribed multiple medications to counter the resistant virus. Yet, the pills came with side effects that ranged from chronic upset stomach to nausea, vomiting, and diarrhea. Suspecting one of the pills was the culprit, he would randomly stop taking them, which further compounded his health and resistance issues. His deteriorating health and constant sick leaves resulted in him losing his job. The young girlfriend, seeing the harsh reality of the path ahead, swiftly exited their relationship.

Panashe returned to the village, jobless, giftless, and a newfound burden to Mai Tendai. She had yearned for a united family, but not under these circumstances. It was during this time that the terms "viral load" and "drug resistance" entered her vocabulary. These words spelled the end for Panashe. For Mai Tendai, she understood their meaning in a different light - keeping her viral load undetectable was pivotal to her health and her family's wellbeing.

The past three decades have witnessed remarkable advancements in HIV treatment, dramatically reshaping the global health landscape. The advantage of once a day regimens such as Atripla or the generics sold in Africa such as Tenolam-E were transformative. They simplified care and decentralized care from specialist centers to peripheral clinics and health centers. The development of drugs to novel targets such as Integrase and capsid viral proteins holds promise for orthogonal targets for combination therapies and longer acting regimens. Research and pharmaceutical innovations have resulted in a new generation of antiretroviral drugs that are more potent, easier to tolerate, and less likely to induce drug resistance.

While Mai Tendai nervously anticipates her viral load test results, she finds comfort in her diligent adherence to her medications. A few years back, she was transitioned to the TLD regimen, containing an integrase inhibitor, following a shift in the National program's preferred first line therapy. She had heard of its superiority over her previous Efavirenz regimen, and fortunately, it has served her well without any issues. Her optimism fuels her belief that she'll evade the debilitating trajectory of drug resistance that marred the end of her husband's life.

However, she firmly maintains that it was not the disease itself, but the accompanying shame, stigma, and shattered dreams that brought about her husband's end. She doesn't dwell in dreams, yet her pragmatic nature houses a steady flame of hope — a hope that the progress in HIV treatment will eventually eradicate not only the specter of drug resistance from her life but also bestow the gift of a cure within the lifetime of her youngest child.

She dreams of a life that extends beyond longevity and health, one that is unburdened by the daily reminder of HIV infection and the story of its cruel introduction into their lives. The memories of her husband, once tinted with the warm hues of their pre-HIV era, now lay overshadowed by the oppressive darkness of his battle with drug resistance. She patiently waits her turn in the line and hopes that the word ‘undetectable’ will be written in bold in her HIV viral load results slip.

Post by Tariro Makadzange. Tariro is an infectious disease physician, viral immunologist, and the founder of CRMG/Mutala, organizations dedicated to advancing clinical research, clinical trials, and discovery research in Africa. While the story of Mai Tendai is a work of fiction, it closely mirrors the poignant realities faced by many of the patients I have had the privilege of caring for throughout my years as an HIV provider.

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