Overcoming Stigma in the Shadow of HIV

Marama Pala was plunged into a living nightmare after she saw the face of a man who forced non-consensual sex on her splashed all over news coverage, after he was charged with the crime of intentionally spreading HIV. Pala’s nightmare exacerbated even further when her HIV-positive status caused her to become a social pariah, due to the deep stigmatization of the virus that permeates her homeland.

Pala, a 45-year-old New Zealand native, is currently an HIV activist, advocate, and executive director of the INA (Maori, Indigenous & South Pacific) HIV/AIDS Foundation. Pala has been living with HIV for more than 20 years.

Pala can pinpoint July 23, 1993, as her exact date of infection, because it was the first time she met Peter Mwai. During that night, they had non-consensual sex while she was asleep, and Pala believes this was when transmission occurred because she tore.

Pala would not find out her status until October of that year, when she saw Mwai’s face on the front page of a newspaper article revealing he was HIV-positive.

Mwai was a musician from Kenya who came to New Zealand on a visitor’s permit in 1990. Mwai became infamous as the first person in New Zealand to be convicted of intentionally spreading HIV. He was convicted of having unprotected sex with 5 women in total, of whom Pala and another woman became infected.

Mwai, who was sentenced to 7 years in prison, was released in 1998 and died from the disease shortly thereafter, according to The New Zealand Herald.

Leading up to her diagnosis, Pala experienced severe flu-like symptoms, with vomiting and diarrhea, but she would not receive treatment until several years later.

In the meantime, Pala underwent many changes in her life as a result of her HIV-positive status.

“I had to make many lifestyle changes,” Pala said. “I was involved in a high-profile court case, and I was employed by the justice department. I gave up my job and had 2 years of continuous sickness.

“I needed to change everything in my life, from fear of stigma and discrimination, media intrusion, and social judgement.”

It would not be until the fall of 1999 that Pala would first start treatment with 3TC and Indinavir. But due to adverse effects, she was switched to nevirapine/3TC until 2009, before settling on her current medication regimen of Truvada and nevirapine.

“Each medication had a range of side effects,” Pala said. “The first regimen, I had vomiting and diarrhea with severe dehydration. The second regimen, I had lipodystrody with body fat redistribution and hair loss. The final regimen seems to have minor numbness in extremities.”

Pala noted that with each of the regimens, she felt high fatigue, loss of concentration, and memory loss.

Although times are continuously changing, the stigma against HIV has yet to dissipate. Unfortunately, because Pala was in the public eye, she felt the stigma 10-fold.

“I experienced stigma many, many times,” Pala said. “Some from health professionals, paramedics, social workers, nurses, midwives, and doctors. I am indigenous, and I have had it from my own family and community quite severely.

“I’ve had employment affected and impacted by my HIV, losing jobs, positions, and confidence. I’ve become unemployable, unless it’s in the realm of HIV. I’ve lost partners and relationships. I’ve been refused treatment in hospitals after accidents, I’ve been put in isolation rooms. My neighborhood has rallied to hold meetings to have my family ejected from my street. I’ve been denied basic human rights time and time again.”

Pala’s HIV-positive status affects more than just herself, it also has had a negative impact on her family.

“My HIV-negative children have been discriminated and stigmatized by my status,” Pala said. “I’ve never had confidentiality and my status has always been public fodder.

“When I’m not working nationally and internationally, we live privately, borderline reclusively, due to the stigma and discrimination. My family are continuously receiving either negative or positive feedback regarding my disease.”

Despite living in a world with so much negativity regarding her status, Pala continues to persevere and remain positive by helping others living with HIV.

“I became an HIV activist and advocate,” Pala said. “I turned a negative into a positive. I have travelled the world many times, and been in positions to have a lot of influence on policies and practices that impact people living with HIV. This is a passion and it keeps me going.”

For individuals newly diagnosed with HIV, Pala advises them to stay hopeful and to understand that there are ways to manage the disease.

“It’s not a death sentence anymore,” Pala said. “There are people all over the world that can support you with your lifestyle changes, and any information that you need now. You’re not alone. If I can survive, so can you.”