HIV doesn’t discriminate, but the way it’s tested can. The stereotype that associates the virus with gay men means New Zealand women aren’t taken seriously when requesting tests. This leaves some of them diagnosed much later, often when they’re already seriously unwell.
In 2009, Heather Sangster Smith began to notice her body deteriorate before her eyes. She saw her face break out in boils and her mouth fill up with ulcers. She battled with severe pain in her joints, chronic fatigue and started losing her hair. Her body was so run down she was forced to resign from her 30-year career as a teacher, thinking her symptoms were a sign of burnout.
For five years the mother-of-two visited countless doctors and specialists, searching for a diagnosis. But no one could tell her what was wrong. “I was so unwell I thought I was dying,” she tells me.
Heather’s condition became so serious that in 2014 she was admitted to hospital for shortness of breath. After a week of being poked and prodded for all kinds of tests, the doctors asked if they could test for HIV. “At first I was confused and laughed. I forgot about it straight away, it didn’t even worry me.”
Then the test came back positive.
“I was in absolute shock. I didn’t believe them. I remember saying, “no no no, you must have mixed up the blood”. I was in such denial.”
Heather’s shortness of breath was actually pneumocystis pneumonia (PCP), a common infection brought on by illnesses like HIV that attack the immune system.
It’s true that gay and bisexual men are most at risk of HIV, but between 2010-2018, 215 women were diagnosed in New Zealand. HIV is a virus that spreads when infected blood, genital fluids or breast milk enters into the bloodstream. This mainly occurs during unprotected sex, but can also happen when people share contaminated needles or a mother with HIV passes it to her child during pregnancy, birth or breastfeeding. There is no cure, but effective medication can make a person’s viral load undetectable, which means they can live a normal healthy life without transmitting it to others.
Our immune system is built up of CD4 cells, white blood cells that fight off illnesses. The average person will have 500-1500 cells. When a CD4 count drops below 200 from HIV, a person is diagnosed with AIDS. Heather had 0.1 of a CD4 cell left in her body.
“My immune system was basically dead,” she says.
Because of Heather’s late diagnosis, recovery was not easy. She stayed in the hospital for two months, unable to walk and suffering from HIV-related dementia, tremors from her medication, and the rapid loss of her eyesight. It took three years for her to feel well again, and she is still legally blind.
Heather thinks the stereotype that HIV is a “gay man's disease” got in the way of her being diagnosed sooner.
“I'm female, I was middle-aged, I had a husband and kids. I didn't fit the mould. So they didn’t think to test me. When I got a rash they sent me to a skin specialist, when I got an infection, they put me on antibiotics.”
Research from Otago University's AIDS epidemiology department showed 52 percent of women infected with HIV in New Zealand between 2010-2018 were diagnosed late, meaning their CD4 count was 350 or less. A late diagnosis can leave someone with permanent health implications and increases the chance of transmission. The research also found 88 percent of women with AIDS were diagnosed late, compared to 66 percent of men.
HIV is not the death sentence it was in the 1980s because testing and treatment have improved significantly. But it can be fatal for those that fall through the cracks. According to the AIDS Epidemiology Group, since June 2014 four women have died from HIV because they were diagnosed too late.
A spokesperson for the Ministry of Health assures me there is no difference in policy or funding for HIV testing by gender or sexuality. They say HIV may not be the first point of call for immune deficiency with women, but if “symptoms persist it would be expected to be considered, but it is up to the GP to use their professional judgment”.
Jane Bruning is the national coordinator of Positive Women, a government-funded organisation that supports women and families who are impacted by HIV. She tells me the late HIV diagnosis of women is a common issue because GPs don’t think to test women as they are less at risk than gay and bisexual men.
The ‘not-at-risk’ stereotype has become so cemented that Jane says women who request HIV tests are being told it’s unnecessary by their GP. Jane tells me she has heard this story time and time again in talking groups and discussions with the women she works with.
“One thing we found is that women will ask their GP for an HIV test and the doctor goes, ‘You don't need one of those. You are not at risk’. Some women have had to be insistent, and really push hard to actually get the test done.”
Jane describes this inequity in HIV testing as a form of “reverse stigma”. Despite other people also contracting the virus, gay men have unfairly born the brunt of HIV and AIDS stigma since the 1980s. Now, the connection we make between homosexuality and HIV is so ingrained it is putting other people in harm's way.
“When doctors say ‘you don't fit the risk group,’ they disincentive women from being tested. But what is this risk group? There may be a higher risk group for some, but everyone is at risk,” Jane insists.
In 2018, 178 people were diagnosed with HIV in New Zealand. Of these, 111 were men who had sex with men. A further 27 people were infected through heterosexual contact (18 men and 9 women). And the remainder were reported to be intravenous drug use (1), an infant born with HIV (1) and unknown reasons (38).
Despite HIV being more prevalent amoung gay and bisexual men in New Zealand, these figures show that heterosexual men and women are not immune. It’s also worth noting that 18.8 million women are estimated to have HIV across the globe - that’s 52 percent of all adults living with HIV. It is far from a gay man’s disease.
In New Zealand, there has been a great effort to encourage gay and bisexual men to get tested, like the flamboyant ads by Ending HIV and free testing stations at the Big Gay Out. But because these campaigns don’t target me as a straight woman, HIV isn’t something I’ve ever been concerned about. Chlamydia and gonorrhea, yes. But HIV, not really.
Since being sexually active I have made a conscious effort to visit my doctor for an STI check with every new partner (more or less). But I have never had my blood taken for sexual health, which means I have never been offered or insisted on having an HIV test - mainly because I didn't realise I could be at risk. But after learning about HIV and the potential disparity in testing, I wanted to know what would happen if I did.
So last week I visited my regular GP, not far from my home in Grey Lynn. When the bubbly young doctor asks me what I’m there for I simply say, “I would like an STI check, please.” She beams at me and hurries over to a drawer bursting with swabs and test tube-shaped containers. “This one tests for chlamydia. This one is for gonorrhea. We might as well do a swab for cervical cancer while you’re here too. Where are we with your HPV shots?”
As she organises the tests on her desk I notice that HIV isn’t one of them. I let her finish the well-rehearsed monologue before asking “can I get a test for HIV too?”
“Absolutely!” she replies. “But I have to warn you, we charge for blood tests here, but you can get them for free at sexual health clinics. It’s up to you.”
Despite HIV tests being free for all eligible people (including all New Zealand citizens and residents), GPs in Auckland are not funded to take blood, which means they can charge the patient for this process. But hospitals, sexual health clinics and the pathology service provider Labtests do receive funding from the Auckland District Health Board for blood tests, so you will always be able to get a completely free test there. This is why GPs will often refer you onto these places.
Barbara Stevens is the CEO of Auckland PHO, one of five Primary Health Organisations that make up the Auckland District Health Board. She tells me that it's up to the individual GP to decide what or if they charge to take blood, “so the cost does vary, there is nothing concrete or consistent about it.”
“It depends on where they are. If they are in an area of vulnerability and poverty it would be very rare for GPs to charge patients to take blood. But in other areas like Remuera and Epsom you would find that GP would do that.”
If the GP thinks the patient is unlikely to go to a funded clinic on their own they may also take the blood then and there for free while they can, she says.
The charge for blood tests also varies on where you are in the country. For example, in the Greater Wellington Region the taking of blood for HIV tests at GPs is always free because they are funded under a contract with Wellington SCL.
Another reason HIV tests might not be offered by default is they’re more hassle than other STI checks. Instead of a one-time swab or urine sample, they involve two seperate blood tests taken three months apart. This is because it can take six weeks to three months for evidence of the virus to show, but if both tests come back negative this will almost always mean you do not have HIV.
I was relieved to hear that unlike the doctors Jane tells me about, mine was more than willing to test me for HIV. But it was clear to me that if I hadn’t asked for one, I wouldn’t have got one. I couldn’t help but think if I was a man who was open with his GP about being gay (like I am about being straight), would this be the case?
I did learn one thing from my little experiment: we as individuals need to educate ourselves about sexual health, because the responsibility isn’t just on doctors.
This is why Heather has teamed up with Positive Women for their campaign “Women can get HIV too.” They hope to educate women about the risk, and urge them to “take charge and take the test.”
Part of their campaign also involves reaching out to nurses and GPs and encouraging them to make HIV testing part of the regular diagnostic process.
“If someone's been coming in for weeks, and you can't figure out what is wrong, just give them an HIV test. It isn’t expensive and it'll either eliminate that option or you’ll catch the problem early on,” Jane explains.
Hannah* (not her real name) was in her 20s when she contracted HIV while living overseas in a high risk country. After discussing with her long-term partner that they were both HIV negative, they decided to start having unprotected sex. Right before getting on a plane back to New Zealand, she became violently ill. Doctors treated her for scarlet fever and also malaria, giving her all kinds of vitamins, pills and injections.
After she recovered she got on a plane home, but had trouble breathing. “It felt like a sharp stitch or something,” she tells me. She decided to see a women's health clinic in New Zealand and told them about her symptoms and asked to be tested for “everything, just in case”. They took swabs for gonorrhea and chlamydia, but said no to HIV.
Hannah carried on but her lungs began to hurt so she got her chest scanned. She was told that her kidney had enlarged, but because she had malaria it wasn’t seen as anything major. It wasn’t until she saw her travel doctor that they went through her risk factors and decided to test for HIV, telling Hannah “let’s just tick this box to rule it out.”
Hannah believes if she hadn't gone to her travel doctor, she too “would have fallen through the cracks.” Now 43, Hannah is part of the positive speakers bureau and helps educate GPs around New Zealand about HIV. She tells me about some severely under-resourced GPs in the Wairarapa, who admit that HIV testing doesn’t really occur to them, even for gay and bisexual men. “It’s not on their radar at all,” she says.
Hannah’s question for GPs and individuals is simple. “Why wouldn't you? Why wouldn't you tick that box to rule it out?” During her research she found some doctors, as well as patients, feel uncomfortable about bringing up HIV. This is why she hopes HIV will eventually become just another test you take on a regular basis. It doesn’t need to be a loaded discussion, just a quick question so we can “tick the box”.
“It should be mandatory, really,” says Dr. Cleone Armstrong. The only time women are strongly recommended to get an HIV test is when they are pregnant. But Cleone says “this isn’t enough.”
Cleone is a GP based in Auckland who has practiced in Herne Bay Medical Centre and Waitakere Hospital Emergency Department. She tells me half of her business is giving her patients smear tests, swabs and other STI checks.
“In my practice, when women ask for an STI test, in their minds they are thinking swabs. I will always offer them the blood test as well. But a lot of people say no, and tell me they aren’t interested in it.”
These blood tests can check for a range of viruses, not only HIV but hepatitis B and C and syphilis as well. Cleone says only one or two women ask her specifically for an HIV test each year.
“I can see how women would fall through the cracks because it is not something that we push on people really. And maybe we should.”
When I tell Cleone about the stories I’ve heard of GPs telling women they don’t need an HIV test because they are “not at risk”, at first she doesn’t believe me.
“I am really surprised at that. That is appalling. I honestly can’t imagine why someone would say, ‘No, you don’t need to do that’. That makes a mockery of screening.”
Cleone admits HIV awareness has dropped off in recent years because it’s no longer an epidemic. “It has definitely fallen under the radar. I haven’t been to a conference about HIV in a really long time.”
Because HIV is such a stigmatised topic, doctors could feel some kind of “embarrassment”, says Cleone, and may just wait for the patient to ask them first. No one can be screened secretly - health professionals must have verbal consent from a patient before they can run an HIV test.
“In some ways, it is partly the patient's responsibility too. We assume that if a patient has put themself at risk, they will tell us,” says Cleone. “It is a two-way street.”
But in saying this, in many HIV cases and like Heather’s story, people often don’t know they are at risk or even that they are infected. HIV can present itself like a bad flu or cold, or sometimes there aren’t any symptoms at all. The New Zealand AIDS Foundation predicts that up to 500 New Zealanders are living with HIV but don’t know it.
This is why Heather, Jane, Hannah and Cleone advocate for routine HIV testing for everyone. And we should too.
Want to get tested? Here’s where you can go:
- Positive Women and Body Positive offer free tests to anyone, including non-New Zealand residents, in Auckland. You can ask for a “rapid HIV test” and have your results within 20 minutes. Check out some drop-in clinics here.
- New Zealand Aids Foundation provide a free drop-in clinic for HIV and syphilis testing every Wednesday and Saturday in Auckland and Wellington and every Wednesday in Christchurch. You can find the nearest testing centre or order a home test by answering a few quick questions.
- While you are at your regular GP you can also ask for an HIV test there. GPs can charge a fee for sexual health consultations (usually around $15). They may also charge for the taking of blood (anywhere between $15-$25), or they will refer you to the closest funded clinic like Labtests or the nearest sexual health clinic where it will be completely free.
- Or you can drop into any sexual health clinic for a free test - no GP referral needed. Family Planning have clinics located throughout New Zealand.