Doctors’ Notes: Pregnancy planning for HIV-positive patients

Republished from the Toronto Star's Doctors' Notes

When the human immunodeficiency virus (HIV) was identified more than 30 years ago, few people could imagine that those living with the virus could conceive healthy children. But thanks to progress and research, it’s now a reality.

In my work as an infectious diseases specialist, I am referred patients specifically to go over pregnancy and parenting planning in the context of HIV.

In Canada, the overall rate of HIV transmission from mother to baby is less than 0.5 per cent. That includes women who didn’t take therapy, became infected in pregnancy or were diagnosed late. Studies have shown that if a woman is on antiretroviral therapy and has a suppressed viral load before she becomes pregnant, the chance of her transmitting the virus to the baby is zero.

I’ve been practising HIV medicine since 2004, and very early on, my patients would tell me about their dreams of having their own babies and ask me what they should do. At that time, many were surprised to learn they could have healthy babies. Even some health-care providers were surprised to hear it.

About six years ago, I was part of a team that published the Canadian HIV Pregnancy Planning Guidelines, the first set of guidelines on the topic. Although these are geared toward health-care providers, they’re written in clear language so that anyone can read them.

There has been tremendous progress in understanding HIV transmission since then, so we updated the guidelines earlier this year.

Previously, if a woman was HIV positive and her male partner was HIV negative, doctors recommended they try home insemination, using a syringe to put the semen into the woman’s vagina as close to the cervix as possible. For an HIV-positive man and HIV-negative woman, a process called sperm washing — which can remove the HIV from the sperm — was recommended along with intrauterine insemination (IUI) at a fertility clinic.

Today, some of my patients are surprised — and excited — to learn of the evidence when it comes to natural conception. Evidence shows that couples with an HIV-positive partner who takes antiretroviral therapy and whose HIV has been fully suppressed for more than three months can have condomless sex without passing the virus to their HIV-negative partner or the baby.

About 95 per cent of the people I see who are trying to conceive choose this recommended option — that is, natural sex without a condom.

Despite the research showing that the risk of transmission is zero when the HIV-positive partner has well-established, fully-suppressed viral loads on antiretroviral therapy, some couples still feel more comfortable using sperm washing and IUI or home insemination; and the guidelines indicate that patient-informed decision-making and choice are essential.

Ultimately, people need to be given the best information available and the opportunity to make the decision that feels right for them.

Since HIV was identified more than three decades ago, huge advances have been made when it comes to its understanding and management. We know more than ever before, but, sadly, fear, stigma and misconceptions still exist.

Some people still see the illness as a plague or death sentence, but that’s far from the truth.

Although there’s still no cure, someone with the virus can live a long and healthy life.

These days, a person living with HIV is expected to live 50 to 60 years from their diagnosis — or only about five years less than the general population. Moreover, someone with the condition may even have a longer life expectancy than people with other chronic diseases like Type 2 diabetes or high blood pressure.

Not only have HIV treatments improved outcomes for people living with the virus, they’ve also become easier to manage. Earlier treatments often required people to take many medications and pills that caused many side effects like nausea, vomiting, diarrhea and headaches. Now, most people take a single-pill in combination antiretroviral therapy, with many fewer side effects.

Now that many of the considerations regarding HIV and conception, pregnancy and life expectancy have been clarified by research over the past couple of decades, my colleagues and I are working to normalize parenting for people living with HIV.

But there’s still more we can do to help people with HIV live to the fullest — including building their families.

My team and I have done a few studies that found only half of patients have been asked by their physicians or other care providers about their reproductive goals. I’d like to see this number increase.

In the guidelines, we encourage care providers to ask at the time of diagnosis and at least once a year after that, “What are your reproductive goals? Do you want to be a parent?” But, if you have HIV and you haven’t had this conversation with your doctor or nurse, don’t be shy to raise the subject.

It feels incredible to see patients fulfil their dreams of becoming parents — and a manageable condition doesn’t need to stand in the way.

Dr. Mona Loutfy is an infectious diseases specialist and a professor in the Department of Medicine, Division of Infectious Diseases at the University of Toronto’s Faculty of Medicine. She is also cross-appointed to the Institute of Health Policy, Management and Evaluation at the Dalla Lana School of Public Health. Doctors’ Notes is a weekly column by members of the U of T Faculty of Medicine.