Earlier testing could have saved mother with HIV

Mother and business owner Tonya Booker would have survived HIV if tested earlier, say her family and a group campaigning for universal testing.

The 48-year-old Aucklander's partner Ben Curnow said it was a form of discrimination against women that Tonya wasn't tested sooner for HIV, because the disease was considered mainly one of gay men and injecting drug users.

"I'm loath to point the finger ... There was a pattern of several people, specialists and everyone, it just went straight past their radar, something systemic that somehow meant that none of these people did the right thing," he said.

Tonya died in 2014. Now she is the face of a campaign by a women's HIV support group urging all women to "Take charge and take the test for HIV".

She died of a fungal lung infection eight days after HIV was detected in a blood test. It was the first time she was tested for HIV - human immunodeficiency virus - despite having suffered a succession of illnesses for more than 18 months.

"She had lots of symptoms of what we now know is late-stage AIDS," said Tonya's mother, Carolyn.

HIV can lead to immune deficiency AIDS illnesses such as Tonya's pneumonia, but with modern drug therapies, most patients live long-term with the virus.

Mrs Booker said that when Tonya was diagnosed, "because she ran her own business and was at the top end of the catering market you're not going to say to everyone, 'I've got HIV', because of the stigma.

We went with the fact Tonya had pneumonia and she was extremely sick". But the family have now chosen to publicise her HIV to support the Positive Women campaign aimed at avoiding similar cases of AIDS resulting from late HIV diagnosis.

"Anyone who is sick and presenting with unexplained symptoms needs to be offered an HIV test," said Positive Women coordinator Jane Bruning.

Mrs Booker said Tonya had been living overseas and was thought to have been infected with HIV during "a night of unprotected sex in Sydney.

She certainly wasn't promiscuous. She was unlucky". She returned to New Zealand around 2005, met Ben and they had a daughter, who is now aged 10.

In Tonya's descent into AIDS, blood tests showed a low immune system, she suffered severe nose bleeds, cancer was suspected and a tonsil removed but no cancer was found.

She lost weight, had terrible tummy pains and severe thrush in her mouth. Breathing difficulties became severe. A lung specialist detected hyperventilation syndrome and referred her to a physiotherapist who wanted her taken to hospital.

Tonya went to her GP, who sent her to Auckland City Hospital by ambulance. On her fifth day there, her HIV was at last detected. At first there were hopes she would survive, but she quickly went downhill and died.

Government guideline

The Health Ministry's recommendations on HIV, first published in 2007, target testing mainly at higher-risk groups, especially men who have sex with men, but they also urge tests also for anyone who has had unprotected sex and "prospective partners in a new sexual relationship".

A routine offer of HIV testing - the initial blood test costs $20 - during pregnancy was introduced from 2005.

Ms Bruning said HIV testing should be offered at the start of the patient diagnostic, even if just to eliminate the virus as a cause of symptoms. The ministry recommendations were very focussed on at-risk groups.

"The reality is, except for foreign health professionals who have had more exposure to HIV, generally New Zealand health professionals would not think to offer an HIV test [except] perhaps as a last resort."

Auckland Hospital infectious diseases staff writing in the NZ Medical Journal urged the ministry to follow the leading US public health agency and recommend universal testing.

Risk-based screening was "failing to provide an early diagnosis in many people with HIV infection", leaving them at risk of AIDS and their sexual partners at risk of acquiring HIV.

Views differ on whether universal HIV screening would save more money - mainly by lower treatment costs from reduced virus spread - than it would cost. However, an Auckland Hospital study last year found it could lead to "earlier diagnosis in 30 per cent of new diagnoses, at a median of 12 months earlier" and produce "potentially large long-term cost savings".

But the ministry said no changes are planned."The prevalence of HIV in New Zealand in the general population is very low.

The US Centres for Disease Control and Prevention recommends testing where HIV prevalence is greater than 0.1 per cent. New Zealand's prevalence is 0.06 per cent. Within women the HIV rate is lower still."

HIV testing
Health Ministry guideline especially targets higher-risk groups, such as gay men, for testing
But it also urges testing of anyone who has had unprotected sex or wants testing for other sexually-transmitted infections
Some say this is a risk-based approach that leads to higher rates of HIV spread and some cases progressing to AIDS
A women's group urges all women to seek HIV testing
Some infectious diseases doctors want testing offered to all adults and adolescents when they visit a doctor or hospital--

New HIV cases in 2014:
Male - 190
Female - 27
HIV-related deaths, 2013:
Male - 8
Female - 1
Sources: Otago University, Health Ministry--