HIV: The shame, stigma and progress

Half of Kiwi parents wouldn't want their child playing with an HIV-positive child. Ahead of the 30th World AIDS Day tomorrow, Max Towle asks how much attitudes have changed.

The memory is particularly vivid for Marguerite Donaldson because she was diagnosed on Valentine's Day. Twenty-nine years ago, in February, after a simple pregnancy blood test, she was told she had HIV.

She sat in a Christchurch Hospital room and was told by an infectious disease specialist that she had five years to live, while a counsellor demanded to know the names of men she'd had sex with in the past 10 years.

"At first, when my GP called me telling me I had to see him urgently, I immediately thought the worst - that I had lost my baby or I had cancer - I never for a second considered HIV. "Back then, it was just an item on the news."

As she tried to respond to the chaos in the hospital room, her thoughts lingered on her unborn child. She was told the baby would have HIV, and die early. "Who could take care of it when she died?" she was asked.

When pressed about her sexual partners, she responded with a couple of names. "There must be more than that," the counsellor said. "It was very cold and clinical and there was no compassion," Donaldson remembers.

Her then-partner was ill and his doctors were baffled. After her diagnosis, a test revealed he had AIDS. He had contracted the virus from a blood transfusion after a motorcycle accident. He died weeks after the diagnosis.

Donaldson had an abortion.

The next week she returned to work at a bookshop, but was dismissed after her manager accused her of theft. She was charged by police. During at an unfair dismissal hearing in the Employment Court, it emerged the manager had been told about Donaldson's HIV by his wife, who was a nurse at the abortion clinic. The charges were dropped, though because the Human Rights Act would not come into effect until the following year, Donaldson couldn't sue for discrimination.

She fretted over who to tell about her diagnosis. "Will they still be my friend? Will my family still love me?" she asked herself. The first friend she told took the news brilliantly. The next spat in her face.

She told her 15-year-old daughter, but decided to wait to tell her 11-year-old son. "The longer I left it, the harder it became to tell him. But it was because I was never sick from the virus - my blood count remained quite healthy," she says.

"When I did tell him a few years later he was quite hurt and I have regretted waiting so long."

Her family has never thought twice about her virus: "My grandkids know and are fine with it. I cut myself and they bandage me up."

Yet discrimination has never been a stranger. Donaldson was a dairy worker in the South Island during the 2000s, but often struggled to find employment. "The police were once called to remove me from a farm because the owners feared I was contaminating the milk. Another farm owner said I couldn't operate any machinery until I had a certificate from a GP saying I was safe to do so."

During visits to hospital, no one would treat her without gloves, even when taking her temperature. A doctor once assumed she was a drug addict because she was a heterosexual woman with HIV.

She no longer fears telling people. "I don't care about who knows. If someone wants to react badly, that's up to them. I tell people because that's what I want to do. I have nothing to be ashamed of. I've been made to feel ashamed for so long, but HIV doesn't define me anymore."

Several times she has encountered the specialist who gave her five years to live. "I never forget to give him a smile, as if to say: I'm still here, aren't I?"

Latest survey 'disappointing'

Despite better medication and treatment, and longer life expectancy, there's still a long way to go to improve the lives of people with HIV.

This week, the AIDS Foundations released troubling results from its latest survey.

It found 88 percent of New Zealanders would be uncomfortable having a sexual relationship with someone living with HIV. Almost half of respondents would be uncomfortable letting a child play with another living with HIV, and 38 percent wouldn't want a flatmate with HIV.

AIDS Foundation chief executive Jason Myers says the biggest misconceptions about HIV are about how it can be transmitted.

HIV is mainly spread via unprotected vaginal or anal sex. It may be spread via sharing needles or syringes with someone with HIV, and in extremely rare cases, transmission between wounds (both people would need to be bleeding profusely).

HIV cannot be transmitted by sharing a drinking glass, by kissing, or sharing a meal. For many people responding well to treatment, HIV may be undetectable on standard blood tests, meaning there's virtually no chance of transmitting the virus in any way.

"This survey is disappointing because it shows HIV is still not widely understood.

"The finding regarding many parents not wanting their child to play with another with HIV is particularly sad ... the Eve van Grafhorst case was so long ago."

In 1985, HIV-positive Australian toddler van Grafhorst, who had contracted the virus via a blood transfusion she received as a premature baby, was banned from her local daycare amid fears she would infect other children.

She was eventually let back in, but had to wear a face mask at all times, which still didn't satisfy all parents. Her family eventually left Australia and moved to Hastings.

Myers says education remains key: "HIV is a manageable health condition. There are many New Zealanders living happily with HIV."

Nevertheless, in the past 20 years new diagnoses have sharply risen. There were 63 new cases in 1997, 156 in 2007, and 197 last year. Men who have sex with men still make up the vast majority (89 percent). Five people were diagnosed with AIDS last year.

While Myers can't explain the rise, beyond theories involving modern dating apps and complacency due to better treatment options, he does know why people are still developing AIDS: "Any diagnoses we see today are usually because someone has decided to stop their treatment for HIV, or their diagnosis has just come too late."

A major development in HIV treatment is the preventative drug, PrEP. Pre-exposure Prophylaxis protects HIV-negative people from the virus. As of March, the drug has been funded by Pharmac, and anyone with a high risk of contracting HIV - for example, someone who has a lot of unprotected sex - can access it via a specialist. The drug costs less than $5 for a three-month supply.

'I was fully embraced by the people'

When Geoff Rua'ine told his mother in 1996 he had been diagnosed with HIV, she calmly told him they would get through it, together. He considers himself lucky: "I've had friends who have been completely disowned by their family and friends."

Rua'ine started speaking publicly about his illness three years later. During an event, he met a representative from Cook Islands Red Cross, who asked him if he wanted to visit his home country to talk about the virus. He immediately agreed.

In Rarotonga, he spoke in schools and at a hospital, and was on local television and radio.

"I was fully embraced by the people. They saw me as a Cook Islander, first and foremost. I shook people's hands and people hugged me. I didn't look sick or any different than anyone else."

He was the first Cook Islander to speak publicly about having HIV in the country. He remains a member of the Positive Speakers Bureau in New Zealand. "As a Cook Islander and Māori, I felt that by getting up and telling my story, I could change people's attitudes, particularly my own people."

Like Marguerite Donaldson, when he was initially told he had HIV, he struggled to grasp the news: "I assumed HIV led to AIDS and there was very little treatment and medication available. It was a very scary time."

"HIV was considered to be a terminal illness and pretty much a death sentence."

Yet knowledge about medication was improving, particularly antiretroviral combination therapy. "That year, we began hearing stories from overseas about people who were responding well to new treatments."

Antiretroviral combination therapy suppresses HIV infection, and dramatically increases life expectancy. Rua'ine's therapy has worked so well, his virus is undetectable. He says public funding of PrEP is a major step forward in reducing HIV diagnoses.

The virus has never seriously affected his health, but that's not to say it hasn't affected him. "There always comes a time when I have to disclose my status in romantic situations, and that's certainly the hardest part - that fear of rejection and how they're going to react," he says. "The virus has made my life more challenging, but that's more about other people's reaction."