‘You’re made to feel dirty’: Woman with HIV on struggle to get fertility treatment in Ireland

women’s healthcare

Ainy, who lives in Macroom Co Cork, said she never felt stigmatised over her status until she sought fertility assistance.

WHEN AINY AND Peter first started exploring fertility treatment options, they did not know that it was going to be more difficult for them than other couples to get help with starting a family, simply because Ainy is HIV positive.

 Ireland is seriously behind in offering fertility treatments to people with the virus, even if the virus is intransmissible and undetectable thanks to treatment – as is the case for Ainy. 

Now the couple are facing funding treatment abroad by themselves, without knowing if Peter’s sperm will be viable or not, because they cannot find a clinic that will run the tests needed, as the couple are not eligible for a full IVF package. 

Ainy, who is from the Canary Islands but has lived and worked in Cork for almost a decade, is a trained nurse, so she knew more about HIV than most people when she got her diagnosis.

One that day in April 2017, however, she still felt completely devastated, and in retrospect, she realises that the stigma surrounding HIV impacted her reaction at the time.

“I was seeing someone at the time, and they told me I should go to the doctor as they had a urinary tract infection, which I thought was odd. Then, I saw an ad on Facebook for the Chambers free testing event. I was waiting for my GP appointment, but I thought ‘It’s a sign from the universe, I’ll go and get the all clear’.

When Ainy walked out of the back of Chambers, an LGBT-themed bar in Cork city, she was in shock. She had tested positive for HIV, and she felt as though her world had been turned upside down.

“We aren’t in the eighties anymore, I knew it wasn’t a death sentence. I am a resilient and strong woman, but I couldn’t understand how this had happened to me – I’d been careful, I’d used protection, it was difficult to take in.

“I had never met a woman who had HIV before. I cried as much as I could. I had a beer with my friends. I was heartbroken, but I wasn’t going to let myself be that way for the rest of my life. Really, what scared me was, how was I going to meet someone? How could I explain this to them, and be accepted?” Ainy said.

By October of that year, Ainy’s HIV was undetectable and non transmissible thanks to antiretroviral drug treatment. She struggled with the fact that there is no community or group for women with HIV in Ireland, despite hundreds living with the virus.

In October, she met Peter. He did not care that she was HIV positive, and he admired her openness about it.

“I brought it up with him via text messages on a dating app before we met in person, I just asked, ‘How would you react if I told you something like this? When we met in person, I told him I had HIV, and he told me that he thought I was brave. We went for burgers, and had a connection right away,” Ainy said.

After getting married in 2019 in Innishannon, Co Cork, Ainy and Peter went to her HIV specialist doctor and asked if it would be safe for a baby if she were to get pregnant. They said it would be.

The couple were shocked then, when they found out that there is no public or private service in the Republic of Ireland that will work with HIV positive women.

In fact, Ireland is one of the worst countries in Europe for access to medically assisted reproduction for people who have HIV.

European legislation sets out that separate labs and storage facilities must be used for the handling of gametes (eggs and sperm) from people with chronic viral infection like HIV.

While many European countries do have multiple public and private labs that enable them to offer IVF and other treatments to couples where one or both partners are living with HIV, Ireland does not.

Belgium, Denmark, France, Germany, Austria, Israel, the UK, and the Netherlands are amongst the countries that do.

Iceland doesn’t, but it refers people to Denmark, and a trial is being carried out in Sweden, with a view of offering IVF and IUI treatments to people who are HIV positive.

Researchers have said that the need for separate labs – which is based on a theoretical risk of cross-contamination (US researchers have noted that there are no reports of this actually happening) – creates an economic disincentive for fertility clinics to treat HIV positive women.

“Some countries and clinics [do not]  have the capacity, funding or will to set up separate facilities,” the Swedish Ethical Review Authority noted in a review.

This is the position that Ireland is currently in – which leaves Ainy and hundreds of other women in her position in a very difficult situation if they want to pursue fertility treatments. 

In Ireland, 4,183 men were diagnosed with HIV between 2012 and 2022, alongside 1,342 women.

Heterosexual couples also face barriers accessing IVF and other treatments where the man has HIV. In general, HIV diagnosis has been on the rise in Ireland in recent years.

Researchers and medical professionals have said that people with HIV are being discriminated against when they are left without access to fertility treatments, and public funding that other women are entitled to in some countries.

That’s how Ainy feels too.

“I know there is a stigma around HIV, but I didn’t really feel that until I started getting in touch with fertility clinics and other services. You are made to feel dirty.

“It was difficult to even get tests done, in some clinics, these are part of a fertility package and we would be told, “No, we can’t do that test because it is part of the IVF package, and because you are HIV positive, we cannot go ahead with you”.

“I have already gone through all this with HIV, but to be made to feel that I cannot be a mother because of it, it made me feel bad. I have lived here and paid my taxes for years, why shouldn’t the same services be on offer to me as any other woman? It is ridiculous, and going through a fertility journey can be a stressful and emotional thing for any couple as it is,” Ainy said.

Eventually, through hormonal and gynecological testing, Ainy and Peter determined that the fertility issue was on his side.

Through initial testing, they discovered that they had trouble conceiving in the first year of trying because Peter was Asopermic, or as people say, “shooting blanks”. Further testing revealed that the 42-year-old has Cystic Fibrosis. He had been completely unaware that he was living with this condition his entire life.

“I don’t want to talk too much about what that was like for me, because this has been hardest for Ainy. It was scary at first, but we discovered that I have nonclassic cystic-fibrosis, with the only impact being on my reproductive system. The next step for us was for me to undergo testicular sperm extraction (TESE), to see if fertility treatments could work for us,” Peter said.

The couple hit another wall when they contacted clinics again in 2022 to try and book Peter in for extraction – which alone costs upwards of €1,100.

They were told once again that this would not be possible, due to Ainy’s diagnosis, and the couple’s ineligibility to pursue a full fertility package.

“It felt like they just wanted our money at that point. Like there was no one who was interested in helping us start a family. It was a low point for us,” Ainy said.

She also said that clinics in Ireland have agreed to meet with the couple and then later told them they were ineligible for their services. Ainy pointed out that though Hepatitis is also a viral infection, there is no requirement for separate labs to be used in the case of couples who live with that disease. 

Peter said it has been “hard” to watch his wife go through years of facing barriers. “She wants to be a mother, it’s deeply unfair that she isn’t getting the same chance.

“Without having all the testing done here first, it’s hard to know what treatment we should be booking abroad, and it’s very expensive,” he said.

The Department of Health and the HSE have brought in a new care pathway so that people who require advanced fertility treatments can receive funding.

The HSE told The Journal that three private providers are currently able to offer IUI to women who are HIV positive, if their partners are negative.

Readers like you are keeping these stories free for everyone…

A mix of advertising and supporting contributions helps keep paywalls away from valuable information like this article.

Over 5,000 readers like you have already stepped up and support us with a monthly payment or a once-off donation.