Remembering Eve: The girl who changed the face of HIV in NZ

Eve van Grafhorst pictured with Paul Holmes. Photo: NZ Herald files
Eve van Grafhorst pictured with Paul Holmes. Photo: NZ Herald files
After being chased out of Australia, a young child with HIV was welcomed into New Zealand with open arms. This weekend that young girl, Eve van Grafhorst, would have turned 40. Katie Harris looks at how the plucky child changed Aotearoa forever.

Eve's mother, Gloria Carey, tears up when thinking about her.

Although her daughter's legacy now stretches far beyond our shores, before she became a darling of New Zealand, the family was "kicked out" of Australia.

"It was a pretty horrid experience, it was an unbelievable experience."

At just 28 weeks pregnant, Carey gave birth to Eve on July 17, 1982. While the premature baby fought for her life, she received several urgent blood transfusions at Sydney's Royal North Shore neonatal unit.

Although they kept her alive at the time, one of the transfusions also contained blood from someone with HIV.

"I don't have any animosity or anything towards that person, because nobody knew," UK-based Carey says.

The family didn't find out for years, assuming their daughter's small stature was due to her being premature, but when she was 3 years old, in 1985, they received the diagnosis.

Following the news, they continued on as usual, but issues arose when the family informed the manager of a preschool in Kincumber, New South Wales, where Eve was going to attend.

"It just blew up from there and they wanted to throw Eve out. Basically, they didn't want her to be there but I thought she had every right to be there.

"She was kicked out, she came back, she was kicked out."

The family hadn't expected the reaction and Carey says doctors who had previously told them the virus was not easily spread, refused to back them during the public outcry.

"They wouldn't support us at all."

When Eve's health issues became public it was "horrific", particularly for their older daughter, Dana, who endured "horrible, horrible things" at school, Carey says.

Eve van Grafhorst contracted HIV through a blood transfusion. Photo: Supplied via NZ Herald
Eve van Grafhorst contracted HIV through a blood transfusion. Photo: Supplied via NZ Herald
Eve, on the other hand, didn't really know anything was wrong other than that her family was upset and she was on TV.

"She didn't see the bad in anybody, it was us as a family who had to deal with it."

Public understanding of HIV/Aids at the time was low and stigma, discrimination and homophobia against those with the condition were common.

The situation soon attracted Australian media attention and through the family sharing their plight, the news quickly reached New Zealand shores.

Kiwi journalist Robert Stockdill launched an appeal in early 1986 to help raise funds for the family to relocate to New Zealand. A few months later, they made the shift.

Carey believed they had been bullied of Australia, and says they moved to New Zealand because they could no longer cope.

"Eve wasn't allowed in school, Dana was getting abused and bullied.

"When you've got the whole country that against you and there's only a handful of people who support you, it's very hard."

From the moment they stepped off the plane she says it was the "absolute total opposite" of Australia, in every way possible.

Spots at schools were offered from around Aotearoa, and they settled on a Rudolf Steiner school in Hawke's Bay, where Carey grew up.

Three meetings were held with parents prior to Eve's arrival at school, and while five decided to pull out their children, three of them came back.

"It was just nothing like it was in Australia . . . to this day I can't really explain it, it was just horrid, you wouldn't expect that from any human being."

As soon as Eve touched down in New Zealand she was looked after medically by Dr Richard Meech, who was then the Health Department (now the Ministry of Health) spokesperson on matters relating to HIV/Aids.

Eve as a baby. Photo: Supplied
Eve as a baby. Photo: Supplied
"We knew how it was transmitted, [but] we had huge gaps in our knowledge and understanding of the virus," he said.

"There was no medical intervention we had to treat Aids, as it was at that stage. Diagnosis of Aids was basically a death sentence. Ignorance was extreme."

When he was appointed to the job, Meech says tension was high as the Homosexual Law Reform Bill had just been passed.

Back then, he says advising on HIV/Aids meant they had to grapple with three issues people were "not comfortable" with: homosexuality, injecting drug users and sex workers.

"If we are going to deal with Aids in New Zealand, these are all issues that are right at the top of our agenda and although society is not comfortable with it, we have to be able to deal with this."

A letter written by Eve. Photo: Supplied
A letter written by Eve. Photo: Supplied
Before Eve, there had only been a handful of people with HIV/Aids here, the first being a young man who had been working in London and who died just a week or so after coming home.

The second case was treated in Hawke's Bay, where Meech was and still is based.

"We had him in and out of Napier Hospital as it was at that time, three or four times over the course of the year and the press was just absolutely adamant that they wanted a case from within New Zealand. And they would be hounding me every time this guy came into the hospital.

"We managed to keep the press at bay and we looked after this young man's needs and it was arising out of that, that I had contact with the Health Department right from the first admission of him to the hospital."

Into this whirlwind came Eve.

Meech, who retired in 2009, says her experience changed the image that had previously been presented overseas of Aids, often showing graphic pictures of people with the illness.

He recalls images of a grim reaper being the predominant visual in Australia, and heartbreaking photographs of young men disfigured by the virus.

Meech says he takes his hat off to broadcaster Paul Holmes, who continued to present Eve's story on his 7pm show.

"I think [it] helped remove a lot of that tension the public perception had on Aids.

"Holmes kept bringing this out to people, so there was this emerging hope, so there wasn't this equivalent of the fear and revolution that I could see in other countries overseas. And it was because of all of that we were able to move way beyond Eve herself, the injecting drug territory, and even into the [sex worker] territory."

Prior to Holmes' death in 2013, the broadcaster said his work with Eve was the most memorable story he'd covered.

Meech says for a long time the public image of HIV/Aids in New Zealand was of Eve, a "selfless little child" going around the place doing things.

"If you were on a flight with Eve she would be handing out the lollies like any other kid."

Carey too says Eve was the "human face" of HIV/Aids in New Zealand and helped people see that the illness did not discriminate.

Though only a child, Eve gave talks at schools, educating people about HIV/Aids and why they shouldn't be afraid.

One memory still stuck in Carey's mind is a time Eve participated in a "hug-a-thon" in Hawke's Bay.

"There were people there that openly said to Eve that they were scared to give her a hug, but she would just hold her arms out and say you can't catch Aids from me.

"She was an old soul with a little body and so much wisdom."

Eve had a strong effect on Meech too, both professionally and personally.

"Eve would have been the first person in the country to have trialled at least three antiretroviral agents; because of the position I was in I was able to liaise directly with the pharmaceutical companies."

As she was well-known, he says the organisations went the "extra-mile" to bring the medications into New Zealand.

Policy-wise, Meech says her situation made the public perception soften, which therefore allowed them to push through related harm-reduction initiatives like the needle exchange, which at the time was controversial.

As well as this, they were able to meet with political parties and convince them not to make HIV a political issue.

"I believe, it was because [of] the calming effect the image of Eve had on the public perception of Aids.

"I think New Zealand does actually owe a great deal to this child."

On a personal level, even today, recalling his final visit to Eve's home still makes his heart melt.

"Just as I was going out the door, thinking I will never see this child alive again, a little voice from the bed '[coughs] Dr Meech, I love you'."

Eve's story also touched people around the globe, including Princess Diana, who sent her a birthday gift one year. In the documentary All About Eve, the child fondly speaks of meeting Elton John, Jason Gunn and Helen Clark.

Positive Women, a support organisation for women and families affected by HIV, national co-ordinator Jane Bruning told the Herald on Sunday that Eve's experience reached so many hearts because it showed HIV could affect anybody, including children.

"I don't think it stopped people feeling discriminatory to injecting drug users or gay men, but I think it just did a mental shift. People suddenly thought this is not what we thought. It just opened the doors to a mind shift."

People, she says, viewed Eve as sort of an "innocent victim", and while it shouldn't have mattered whether someone contracted the virus via sexual intercourse or a blood transfusion, it did.

"Because she was a child, it had a greater impact, but it didn't just make an impact for children, it made an impact for everybody."

Although Bruning warns the discrimination persists today, Eve's life created a "huge shift" in attitudes about people with HIV in New Zealand.

Still, stigma remains the largest barrier to their work, despite medical advances making those with HIV on medication not contagious.

"When you tell someone they have cancer, you're not afraid of what the reaction is going to be. When you tell someone they've got HIV, you never know what's going to come back to you."

Not long after Eve's family came to New Zealand, her father made the decision to move back to Australia.

Sometime later Carey met Peter Richmond, who became "the best" stepfather to Dana and Eve and with whom Gloria went on to have three more children.

"Eve absolutely cherished her brothers and sisters and she also met her nephew before she passed away, Timothy, Dana's first-born."

Although every year of Eve's life was a blessing, "especially being told she would not live past 5", the year she died, 1993, aged 11, was "extremely heartbreaking" as Carey knew her daughter was battling through each day, but never complained once.

Right until the end Eve gave her all, planning her own funeral, including the fabric and colour of her coffin, the service, the music and all her classroom and friends were involved.

"She wanted to come home and have all her friends and family to be with her before the funeral because she said, they will all support each other and us during our grief."

In quiet moments when she would give Eve massages, tears of sadness welled in Carey's eyes, wishing she had a magic want to make her well and free of HIV/Aids.

"We cried and cuddled together always. Eve my beautiful brave child passed away in my arms. And Peter, Dana, Karl, Charlotte, William and Timothy were all there too, beside her and holding, touching her when she passed and received her Angel wings.

"Our precious Angel Eve."