When I started my fertility journey, I expected a little inconvenience. I’d mentally prepared for progesterone and estrogen therapy, regular trips to the doctor’s office for hormone level checks, and disruptions to my work schedule. But I wasn’t worried about my chances of getting pregnant. Black women and infertility weren’t top of mind. My biggest fears involved my actual pregnancy. I’m a Black woman, and I’m well aware that we are three to four times more likely than white women to die of pregnancy-related complications, according to data from the Centers for Disease Control and Prevention (CDC).
My husband and I are lucky. In vitro fertilization (IVF), a medical procedure whereby an egg is fertilized by sperm outside the body and then transferred into the uterus, isn’t exactly affordable. The average cost for an IVF cycle in the United States is between $10,000 and $15,000 per cycle, but my home state has mandated fertility insurance coverage for three IVF rounds or three embryo transfers. This means that large insurance plans must provide these benefits (though there are caveats). It’s also worth mentioning that this coverage doesn’t typically include all fertility drugs and specialized testing. Still, we were grateful for any coverage, but after a few failed cycles I learned that the assisted baby-making process was more complicated than I expected.
IVF is one of the most successful forms of assisted reproductive technology, SELF previously reported, but it’s not an easy path. According to the Society for Assisted Reproductive Technology, the live birth rate for an IVF cycle is 55.6% for people under 35, 40.8% for people between 35 and 37 years old, and around 4.1% for those over 42.
What’s more, I realized that the process was as fraught and problematic for Black women as the rest of health care. Research published in Reproductive Biology and Endocrinology in 2020 analyzed 122,721 embryo cycles from 2014 to 2016, including 13,717 cycles from Black women and 109,004 cycles from white women. Researchers found that Black women who undergo fertility treatment have markedly worse outcomes than their white counterparts. We have a lower live birth rate for the initial cycle, independent of factors such as age, ovarian reserve, past miscarriages, or the number of embryos transferred.
The fertility industry, like much of health care, has a racial disparity problem. Why? Racism is part of the equation. There’s the general assumption—even among frontline doctors—that Black women are hyper-fertile, and this exacerbates the biases Black patients experience, Michael Thomas, M.D., chief of the Division of Reproductive Endocrinology and Infertility at the University of Cincinnati College of Medicine and head of the Diversity, Equity, and Inclusion Taskforce at the American Society for Reproductive Medicine, tells SELF. “[Black women] don’t get the same level of care that white women get.”
Below, you’ll find some of the information I wish I’d known about Black women and infertility before I started my IVF journey. While all of the knowledge in the world won’t erase the biases that exist among many health care providers, I hope that the following advice and resources can make this unnecessarily difficult process a bit easier to navigate.
When should Black women seek fertility treatments?
Age is a significant factor for anyone with ovaries—as we age, fertility declines at a faster rate. Black women often seek fertility treatment later than women of other races, David Seifer, M.D., a clinician at the Yale Fertility Clinic who has studied racial disparities in IVF treatment, tells SELF. While it’s hard to know precisely why Black women seek fertility treatment later, factors like access might contribute to the trend.
If access is possible and you’re under 35, you should explore fertility options after a year of trying to get pregnant, Dr. Seifer says, adding that if you’re 35 and older, you should explore your options after six months. “Do not procrastinate,” he says. “Do not hesitate.”
When you meet with a fertility specialist, they will perform an evaluation that might include checking for fibroids and other uterine growths such as polyps and dilated or blocked fallopian tubes, Dr. Seifer says. This leads us to another fertility factor: preexisting reproductive conditions. These are another reason you might consider seeking treatment as soon as you begin to suspect fertility issues. Black women tend to have higher rates of conditions that can impact fertility. This includes STIs (like chlamydia and gonorrhea) and fibroids. Fibroids are noncancerous growths that can impact fertility by obstructing the fallopian tubes, while untreated chlamydia and gonorrhea can cause something called pelvic inflammatory disease (PID), which can create blockages in your reproductive organs, the Mayo Clinic explains. So if you have irregular periods, regardless of age, you should check in with your ob-gyn.
“If one or more of these [conditions] are present, they may require attention before fertility treatment. This could delay IVF treatment,” Dr. Siefer says.
What should you look for in a reproductive endocrinologist?
If your knee-jerk reaction is to find a Black fertility doctor, you’re not misguided. For instance, a study published in the British Medical Journal in 2020 found that Black newborn babies were more likely to survive when cared for by Black doctors. And, given the horrific maternal mortality rates mentioned above, it’s no wonder that, during your fertility journey, you might want a Black endocrinologist. But if you’re struggling to find one, it’s not surprising. The Association of American Medical Colleges reports that Black people make up just 5% of doctors in the United States. And, depending on where you live, it may also be challenging to get care at a highly ranked fertility clinic with your doctor of choice.
When looking for the right provider, Dr. Thomas tells SELF that patients should talk to their ob-gyn to get a referral to a clinic or specialist. You can also look at Google reviews and visit sites such as ZocDoc to read other people’s experiences with specific doctors and clinics.
Even if you find a clinic with great reviews, it’s wise to consult with several providers to find one that you feel comfortable with (if possible). During the consultation, pay attention to how everyone is treating you. Are they giving you enough time? A standard initial fertility consult should be around 45 minutes. Are they listening to you? Do they seem to have some preconceptions about your experience?
You should be able to talk to your doctor about everything (including embarrassing things) because your history and situation inform the proper diagnosis. IVF isn’t the only fertility treatment option available. For instance, if your doctor determines you have ovulation problems, they may send you home with medicine or injectable hormones to help you ovulate. Depending on your diagnosis, other possible treatment plans may include removing fibroids or scar tissue, such as those experienced by women with endometriosis, to open up the fallopian tubes.
It takes a lot of work, time, and possibly money to find the right reproductive endocrinologist, but these are the surest ways to find a suitable match.
How do you navigate the financial aspect of fertility treatment?
As we mentioned, IVF is prohibitively expensive for a lot of people. As of August 2020, 19 states had fertility insurance coverage laws, and 13 of those laws include IVF coverage. Ten states have fertility preservation laws for medically induced infertility, according to the National Infertility Association. There’s evidence to suggest that expanding state mandates for coverage could reduce racial disparities in fertility treatment outcomes. Dr. Seifer and his team of researchers at Yale found that Black women had higher cumulative live birth rates from IVF in coverage-mandated states than in states without mandated fertility coverage.
Even if you live in a state with mandated fertility coverage, there can be many unforeseen costs, like doctor’s visits and laboratory co-pays, embryo freezing, and expenses related to conditions that may surface during treatment. Your doctor might also suggest services, like embryo testing, where a few cells from a fertilized egg are examined for genetic abnormalities before being transferred into the uterus. Many of these services aren’t covered by insurance and often require more cash than a patient might have.
There’s also a lack of information on resources to help pay for IVF treatments. For instance, not many people know that some employers, like Starbucks and Proctor and Gamble, will pay for several rounds of fertility treatment, the New York Times says. If you haven’t already, check with your H.R. department or insurance to see what’s available to you.
Additionally, communities like Fertility for Colored Girls provide education, awareness, and encouragement to Black people and other people of color experiencing infertility. Some groups might help equip you with financial support for fertility treatment and other related resources. The Cade Foundation provides educational programs about different pathways to parenthood throughout the nation. They also have grants to help families with the costs of adoption and fertility treatment.
What does self-advocacy look like throughout the process?
It bears repeating: You should not have to fight for your own life and dignity while trying to get pregnant. But, in a catastrophically unjust system, it’s wise to “be conversant with the fertility treatment process,” Dr. Thomas says. “When you know more about the subject, you’re more likely to see warning signs and to better advocate for yourself when things don’t feel right.” Some warning signs include receiving blame for failures during treatment, an inaccessible doctor, and an aggressive push for specific treatments beyond the standard care.
Even though things might be moving quickly, feel free to speak up and express concerns throughout the process. “If you don’t understand anything, don’t be afraid to ask, no matter how silly you think the question might be,” Dr. Thomas says. He says helpful questions can include, “What should I expect between now and my next appointment?” “What does this thing in my blood work report mean?” “Are there lower hormone protocols that would work for me?” “Do I need that additional out-of-pocket procedure to improve my chances?” “What’s the science behind it?”
If your doctor is unreceptive to questions or makes you feel uncomfortable, you don’t have to stay with a specific provider or practice, Dr. Thomas says. “Get a second opinion or see a different doctor. This is really critical to your success,” he adds.
How do you account for your mental well-being?
One of the things that I didn’t consider was how much my mental well-being would take a hit during fertility treatment. I was an over-optimistic patient, bringing my can-do approach to a process I had no control over. My loss and grief through each failed cycle were magnified by a deep feeling of failure—in my culture, no amount of success meant anything if a woman couldn’t conceive.
As it turns out, infertility can cause significant anxiety and emotional stress. As SELF previously reported, a 2017 study published in Human Reproduction discovered that 41% of the 416 women surveyed dealt with depression alongside their infertility. This emotional stress may be particularly acute in Black families like mine, where the shame and stigma of infertility may be more prevalent. Getting pregnant can be challenging, even with assisted reproductive technology, and multiple failed IVF cycles can cause deep feelings of loss, grief, and shame. And, of course, the hormones you take during treatment may also alter your mood and reduce your sex drive.
“At any point during a woman’s reproductive cycle, including fertility treatment, a woman goes through enormous amounts of changes, and it takes a long time to wrap one’s mind around the challenges that accompany [them],” Shelly Cohen, M.D., a reproductive psychiatrist who practices in New York and Los Angeles, tells SELF. “Therapy should ideally be integrated with all care, but because of our medical system, where everything is siloed, patients should try to find the mental health care they need,” she adds.
Some fertility clinics have a mental health practitioner placed within the practice, but they are rare. Couples seeing doctors within university-affiliated hospitals may also have access to fellows and therapists from reproductive psychology/psychiatry programs. There are places, like the Seleni Institute, which specialize in psychotherapy for couples and families experiencing infertility. Numerous groups provide support, including the earlier mentioned Fertility for Colored Girls.
Thinking through all of this can be daunting, and examining it as a Black person can be downright exhausting. I know. Although the health care system consistently lets Black women down, organizations like the American Society for Reproductive Medicine are exploring ways to tackle the racial disparities in IVF and other fertility treatments. The fertility journey isn’t easy, but it’s manageable. With the right information, early treatment, a caring medical team, and emotional support, it’s a path that may lead to the joy of an expanded family.
Related:
- Infertility Rates Are Higher Among Black Women—So Why Do We Feel So Alone?
- ‘It Feels Like Another Loss’: What It’s Like to Pause Fertility Treatments Because of Coronavirus
- The Cost of Infertility: This Is How Real People Pay for IVF