Roadblocks Affecting Family Building for People of Color in the U.S.
Very rarely does an IVF waiting room full of patients represent the ethnic diversity found outside its doors. For a number of reasons, people of color are underrepresented. While the data about why is far from clear, it is known that people of color are less likely to be referred for appropriate care, seek care after longer periods of infertility or reproductive issues, are less likely to initiate treatment, and more likely to discontinue treatment prematurely. Further, for those who engage in treatment, their outcomes are statistically less successful than for white patients. The role of systemic racism, provider bias and decreased access to the most effective treatments, including prohibitive costs of fertility treatment, cannot be understated in this issue.
Everyone deserves the family of their dreams. To better understand the roadblocks, we met with a doctor and reproductive justice warrior, Tia Jackson-Bey, M.D. Dr. Jackson-Bey is a reproductive endocrinologist and infertility specialist at RMA of New York, and a member of the newly-formed ASRM Diversity, Equity, and Inclusion Taskforce.
YMM – What are the goals of the task force?
T J-B – “As you know, the American Society for Reproductive Medicine (ASRM) is a multidisciplinary organization, dedicated to the advancement of the science and practice of reproductive medicine. ASRM accomplishes its mission through the pursuit of excellence in education and research and advocacy on behalf of patients, physicians, and affiliated health care providers. To fulfill that mission, this task force was much needed.
Last year clearly showed a collective realization, reckoning, and revisiting of differences in how certain people in this country are treated, based on skin color, geographic location, and station in life. There are many different causes of inequality, and race can’t be ignored. Our field is not above this burden. In addition to the disparity of reproductive care for people of color, there is also a dearth of professionals of color in our field. So we needed to look at that inequality from a holistic perspective.
We meet several times a year and thought, what do we want to bring out of this taskforce? There are two main issues. One is that we don’t have enough people of color in our field or leadership positions.
A separate issue is that, unfortunately, there are often different medical outcomes, based on race, in reproductive technology. IVF is proven and does very well for most. Still, there is trouble accessing treatment, affordability, and getting patients of color in to see doctors. These are huge issues.
Different populations who receive the same treatment can have different outcomes, but why is that? It is our charge to understand why.”
YMM – Do you have any theories that help to explain the differences in IVF outcomes?
T J-B – “Referral patterns from gynecologists and general practitioners may play a large role. Infertility affects 1 in 8 couples, although that definition is currently being redefined to include LGBTQ+ individuals, singles, and other non-traditional types of hopeful parents.
As of now, those who can engage with reproductive medicine typically tend to be white, wealthy, college-educated women. This led us to investigate, is there bias within referral patterns? Are people of color not being referred to as much? Some studies prove this to be so.
If a doctor thinks you can’t afford IVF, they may not discuss this option with you, especially if you don’t have health insurance that covers the treatment. I’ve heard from patients that their gynecologists or general practitioners tell them to just keep trying. This means that patients who do find their way into IVF clinics do so later, sometimes years later. They lose valuable time which can translate into failed cycles or the need for more expensive treatments, such as egg donor IVF or gestational surrogacy.
There may also be issues around specific diagnoses. Fibroids are a common diagnosis in black women, but it is common in all women. It’s important to remember that not all fibroids are created equal, and not all women are aware of their fibroids. In black women, you see earlier onset and more symptomatic fibroids. This is true for black women around the world, not just African American women.”
YMM – You mentioned egg donation and surrogacy. Do people of color have more challenges around third party reproduction, such as finding donors?
T J-B - “Donors of color including Hispanic, mixed race, African American, South Asian/Indian, can all be very hard to come by. One of the things we’re looking at is, how do you recruit more donors of color? What should we be doing? Are we focusing on spaces where people of color are not found? How can we direct recruitment efforts to colleges that have a more diverse student body and potentially more donors of color? The lack of donors can create a daunting barrier for people of color who need a donor to have a child.”
YMM – COVID-19 has had a horrific impact on all of us, but most especially, certain minority groups. Are you hearing from patients that fear of COVID-19, or the COVID vaccine, is altering plans for family building? If so, how are you taking this on?
T J-B - “We know COVID hit minority communities particularly hard, both in terms of cases and in deaths. For anyone who studies the effect of social determinants of health or health disparities in the United States, this was not a surprise.
We know that some people will get very sick with COVID. This infection can affect the lungs, cardiovascular and renal systems, all of which are challenged in pregnancy. Which can make pregnancy during COVID feel risky. However, over the past year collectively we have cared for many women either pregnant or trying for pregnancy during the pandemic and we have learned a lot from this experience. The best thing is always to protect oneself from infection. That is the best defense for avoiding the negative outcomes of COVID.
Whether or not you should try to get pregnant during COVID is a personal decision. If you’re interested but fearful, engage your provider. My best advice is, if anyone is thinking about it, book a consultation. Start there. Also talk to your partner, family, or support system and weigh whether this is the best time for you personally. For many, they feel this is a better time to grow their family than before the pandemic, as there are now more flexible work-from-home options, more time spent at home with partners, and realization of what is most important to them in life. And for some, that is their family.
Well-run IVF clinics like RMA NY are doing everything possible to keep employees and patients safe. Appointment times are spaced out to avoid crowding in waiting rooms. There are also telemedicine options so that initial consultations and follow-ups can be done remotely, without needing to leave home. There is extensive screening with questionnaires and temperature checks. Social distancing in common spaces and patient rooms.
My biggest fear for patients of color is a delayed presentation for evaluation and treatment because delays in care can affect outcomes. Get started by booking an appointment, and let’s get the ball rolling to build the family of your dreams.”
Tia Jackson-Bey MD, MPH is a reproductive endocrinologist and infertility specialist, and board-certified obstetrician-gynecologist at RMA of New York’s Brooklyn office. Dr. Jackson-Bey’s professional interests include physician-patient education, IVF outcome improvement, global public health, and mentoring underrepresented college and medical students on careers in medicine. Dr. Jackson-Bey is passionate about reproductive justice and increasing access to fertility care for all.