Advancing Health Policy and Reproductive Rights: In Conversation with Dr. Mona Loutfy
Dr. Mona Loutfy is an infectious diseases specialist, clinician scientist and full professor here in the Department of Medicine. In 2017, she became a full professor within the department on the basis of excellence in research and creative professional activities. Dr. Loutfy is a staunch advocate. Her work has directly resulted in the advancement of health policy and reproductive rights as well as the delivery of care and health outcomes for individuals living with HIV.
In 2006, Mona founded the Women and HIV Research Program at Women’s College Hospital to carry out research with and for women living with HIV to combat stigma, health inequity and to optimize health care delivery and outcomes. At the time, there was a large gap in clinical knowledge surrounding fertility supports for individuals and couples with HIV. In the early 2000s medications that effectively managed HIV were still new and few Canadian fertility clinics would accept patients or couples with HIV. As a result of her research and advocacy, there are now approximately 15 fertility clinics across the country providing fertility services to individuals and couples with HIV.
In 2021, Dr. Loutfy was the recipient of the Department of Medicine’s Michael Gordon Award for Humanism in Medicine. Her work is done in partnership with and for the community. In her own words she says that “humanism in medicine is valuing lived experience as much as clinical knowledge.” We spoke with Mona to hear more about her research, her advocacy and her approach to patient care.
Can you tell me about what you were observing in the field at the beginning of your career that inspired you to move into your area of research and practice?
Great question. I completed my residency at the Wellesley Hospital in the early 90s at the peak of the HIV epidemic and saw the direct impact it was having on patients in the community – people were dying. There was the clinical and scientific side of the disease that was so interesting but also an incredibly stigmatizing public and social side to it. By the time I started my academic appointment in 2004, highly effective HIV treatments had been available for about eight years, meaning people with HIV could take 3 different medications and their virus would be suppressed, extending their life expectancy to almost that of the general population. HIV treatments were also found to completely prevent transmission to infants when a pregnant person took them prior to pregnancy – amazing!
When I started my practice, my patients with HIV wanted to get pregnant and parent children. So, I embraced the field of HIV and Reproductive Health. However, at the time, if a couple consisted of one HIV positive person and the other negative, they required counselling and support on how to conceive without transmitting the virus. In many cases, this involved sperm washing through a fertility clinic; however hardly any fertility clinics were accepting individuals with HIV as patients due to fears, concerns and the stigmatization of HIV.
You and your team have advanced transformative health policy. Can you tell me about how you see advocacy being inherent in your day-to-day work?
We wrote the first Canadian HIV Pregnancy Planning Guidelines published by the Society of Obstetricians and Gynecologists in 2012 and updated them in 2018. By then, we had several large studies showing that an individual with HIV taking effective antiretrovirals with a suppressed HIV viral load had a zero chance of transmitting the virus to their sexual partner, even when a condom wasn’t used. In the community, this is referred to as “U = U – undetectable equals untransmittable”. U=U has been endorsed by many scientists and key organizations like the CDC, UNAIDS, WHO and the Canadian government. This hugely impacted pregnancy planning counselling for individuals and couples with HIV as sexual partners could have intercourse without the use of a condom. Services like sperm washing were no longer needed for the purpose of preventing HIV transmission. It was a very exciting development.
However, services through fertility clinics for individuals and couples with HIV experiencing difficulties conceiving were still limited. Led in partnership with Dr. Heather Shapiro from Mount Sinai Fertility, my team helped write the “Managing and preventing blood-borne viral infection transmission in assisted reproduction: a Canadian Fertility and Andrology Society clinical practice guideline”. This guideline was critical in building knowledge capacity for fertility specialists treating patients with HIV. Specifically, it shared the critical fact that individuals with HIV who are taking effective HIV treatment with a suppressed viral load can be treated in a fertility clinic and the lab setting just as someone without HIV. In short, they are non-infectious which has huge implications for how their biologic samples can be handled and for HIV-related stigma.
You are a recipient of the Michael Gordon Award for Humanism in Medicine and in reading about your work I can see how centered your patients are in the work that you do. Can you tell me a bit more your approach to working with your patients?
I was so honoured to receive the Michael Gordon Award for Humanism. Dr. Gordon was known to be so empathetic and caring to his patients and practiced medicine from a person-centred approach far before others discussed such approaches. The word “humanism” means to see and work towards the vision that everyone is equal. The key to the humanistic work I have done is “to listen” – to listen to my patients and to the community. It has really been a bed-to-bench-to-policy approach. Patients back in the early 2000s would tell me how important becoming pregnant and parenting was to them – and so we did the research and led the accompanying policy work. In all the work we do, we partner with community members (i.e., people living with HIV) as equal research partners at all steps of research. This is known as community-based research which was central to the development of the Canadian HIV Pregnancy Planning Guidelines. It is often community members who will present on the guidelines or issues at hand, or we’ll give presentations together, in partnership between community and academia; I will rarely give a presentation in today’s world without co-partnering with a community member – as an example, check out my 2022 Mark Wainberg Lecture (2022 Mark Wainberg Lecture) Valuing lived experience as much as academic skill has been a big part of humanism to me. Working as partners with community members has made my research better and I have grown and learned so much from doing research in that way, with the aim to contribute to the wellbeing of people with HIV and to reduce HIV-related stigma.
