The Constant Loneliness of Navigating Infertility as a Black Man

In my conversations with other Black men struggling to become biological parents, the message was clear: We do not talk about this sort of thing.

On the morning of November 25, 2020, I sat in a New York City fertility clinic, waiting to submit a deposit for a semen analysis. Recently, my wife and I had begun discussing the prospect of having children, but she insisted that I get tested due to what we had noticed was thin ejaculate. I obliged, landing me in a cold and quiet waiting room with Maury playing on a television in the corner. The place reminded me of when I would visit my grandmother in hospice. Nobody was there because of something good.  

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The most glaring detail of that day reflects one that has followed me my whole life: My name is Jared Wright, and I am 34 years old, six-foot-three, and weighed over 330 pounds at the time. I am a Black man, and I was the only person who looked like me in a room filled predominantly with white women. I felt completely alone. 

This would come to be the first of countless instances where I could not relate to anybody in the room about my diagnosis of male factor infertility. After receiving my diagnosis, it has been evident that, through no fault of their own, those close to me with whom I have shared this news with do not know what to say about low-sperm concentration or poor sperm motility. It’s been incredibly difficult to find reading material on how to handle infertility, let alone finding anything on supporting infertility in Black men or Black health care professionals who respect the hardships that come with the diagnosis. 

In a number of interactions I have had—along with other Black men like me—the message was clear: We do not talk about this sort of thing.

The problem with the lack of a dialogue is that it forces Black men into isolation, unable to communicate what they are going through with somebody who could relate with them. I never spoke to another Black man dealing with infertility until I worked on this story, and for each of them, the same was true. Due to the stigma around the issue, the men who spoke with me requested their first names be changed for privacy.

A White Man’s Disease

I never had reason to suspect anything was wrong. My first urologist said everything looked normal after a CAT scan. My wife still wanted me to have a semen analysis, which tests the amount of sperm in a man’s ejaculate. The test results contradicted my urologist’s assessment. My sperm count was so low that the amount of sperm that I have was undetectable by the analysis. I was diagnosed with non-obstructive azoospermia, which is the absence of and failure to produce sperm in my ejaculate. The condition is considered the most severe iteration of male infertility.

I had virtually no sperm in my ejaculate, and my initial urologist felt moving forward with me was beyond his purview. When I called the urologist to ask if he could refer me to anyone, I was told no. The phone connection went dead.

David, an educator from Georgia, has the same diagnosis of azoospermia as I did. He and his wife had been trying for a baby for over two years. After exhausting a number of options, his doctor suggested that he be examined for male infertility. After a semen analysis, only one motile, or moving, sperm was detected. The news was a shock to David’s system. 

“I was depressed; it was a life-changing moment,” David told VICE. “I had less testosterone than a man who was 70 or 80 years old.” The higher testosterone count someone has, the more optimal conditions there are to produce sperm. David felt his diagnosis changed the way he had to plan out his life, which can be difficult without the proper resources. David said he felt stonewalled when it came to seeking information on male infertility in Black men. “I had a lot of questions: ‘Who can I talk to?’ ‘What can I read?’ ‘Where can I get more information?’ [An answer] wasn’t available.” 

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This dearth of information eventually led David to think that maybe fertility issues weren’t something Black men dealt with at all. After all, the little literature he could find never explicitly mentioned how these issues might affect patients of color. “I feel like I have a white man’s disease,” David said. “I didn’t even know infertility for a man existed, let alone a Black man.”

It’s easy to see why David feels this way. When many think of infertility, they think of women, even though men contribute to half of all infertility cases—equal to roughly 10 percent of males who try to have a child with a female partner, according to the Cleveland Clinic. While men are mentioned on the Centers for Disease Control’s fertility webpage, most of the information is geared toward cisgender women. Excluded are other people who can get pregnant, such as non-binary people and transgender men.

Family planning websites like FertilityIQ often have actionable information on the front page that is specific to women, while men have to dig deeper into the website to find resources. In the United Kingdom, men who want their fertility examined under the country’s National Health Service (NHS) have to visit a gynecologist, not a urologist. 

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Resources specific to Black men are nearly nonexistent, making the subject even harder to talk about. There are less than 10 studies specifically looking at Black male infertility, and the top study on a cursory Google search is closer to a discussion group than actual research. Many infertility studies focusing on men have focus groups that are disproportionately white, if Black men are mentioned at all. 

David spoke under anonymity because he didn’t want to become a spokesperson for Black male infertility. On one hand, he recognizes that more voices are needed to shed proper light on the subject, but on the other, he doesn’t want to be the one singled out to make it happen. “I just don’t want to be seen as different,” David said. “I don’t want people to feel sorry for me.”

The Burden of Stigma

During a car ride on a fall afternoon to LaGuardia Airport in Queens, New York with a male family member, I mentioned my wife’s and my first attempt at IVF, which culminated in an unsuccessful pregnancy. I asked him why he felt so few Black men have come forward about their fertility issues, but I wasn’t expecting any explanation I hadn’t heard before. He mentioned stereotypes and preconceived notions of male virility, and said there is a lot of shame in admitting infertility.

Regarding my own infertility, he was quick to dismiss the experiences my wife and I had been through. “I don’t even think this is true,” he said. When I informed him that at least five semen analyses said otherwise, he was unmoved: “Well, I’ll pay for another!”

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Ronald Anglade, a urologist at Georgia Urology and one of the few Black urologists in the country, said that getting Black men to talk about infertility with their peers can sometimes be unthinkable. Like my relative, he cited cultural stereotypes of Black men as a reason for the lack of dialogue. “I would say that infertility still sort of has a stigma attached to it, particularly for the male,” Anglade told VICE. “I think that men of color really feel that their virility or their ability to father children is very important.”

I am a Black man, and I was the only person who looked like me in a room filled predominantly with white women. I felt completely alone.

James, a 36-year-old who lives in North Carolina, has told some immediate family and friends about his infertility, but keeps close tabs on who knows, in case some people talk about him without his permission. He recently celebrated his 10th wedding anniversary with his wife, but they have not been able to conceive for three years as a result of the fact that he has no sperm in his semen whatsoever. Initially, he and his wife thought she might be unable to conceive and he was ready to be supportive, but when they found out the problems were on his end, he felt like he was the one dragging her down. 

James has found solace in sharing his journey with some immediate family and close friends, but still holds certain cards close to his vest. “My sister-in-law doesn’t know because her husband is not the most discreet person in the world,” he told VICE. “He’s kind of a busybody. He’s a good guy, but not the person you tell if you want things to be quiet.”

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James said that he has never had the opportunity to speak to another Black man with infertility, saying that he doesn’t even know where to look for them. Part of the problem, he suspected, is the lack of media representation taking male infertility as seriously as he would like. “I have never seen it represented in a way where it’s not used to be funny,” James said. “I actually think that would help quite a bit.”

James also said that most of the people he knows are Christian. If he told them, he said that many of his Christian friends, family, and acquaintances would say they are praying for him, but he admitted that difficulties with his fertility put his faith “not in the best place.”

“If you had asked me beforehand, I would have a very good answer for why your personal situation should not dictate what your faith looks like,” he said. “Now I kind of vacillate between wanting to be serious about my faith again to being more of a deist— where I believe there’s a God out there, but he’s clearly not involved.”

Financial Barriers to Treatment

I feel fortunate to live in a state with better fertility insurance than others in my position, coupled with an extended tenure in New York City government service with good insurance and exemplary fertility benefits. However, I still had to spend over $1,000 out of pocket for my semen analysis and more than $750 in co-pays for doctors’ visits, not to mention the thousands in costs billed to my insurance company.

For men who live in a state with weaker fertility benefits or little insurance coverage, the situation can be very different. Miles, who works in security and lives in Baton Rouge, Louisiana, was diagnosed with infertility when he was 38, a year after he got married. If he hadn’t gotten married and tried to have children, Miles said that he may have never learned about his fertility status. 

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I have terrible insurance,” he told VICE. “Even just going to see the urologists for testing or anything, we pay out of pocket. There’s no actual insurance coverage for [most fertility treatments] down here.”

Now 42, Miles is running against the clock in regards to the quality of his sperm. A 2019 study published in the journal Urology showed that semen concentration, volume, morphology, motility, and sperm count are all at their highest levels among men between the ages of 18 and 29 and sink lower with each subsequent decade of life. 

The problem with the lack of a dialogue is that it forces Black men into isolation, unable to communicate what they are going through with somebody who could relate with them.

Miles and his wife looked into trying in-vitro fertilization (IVF) as a possible surgical solution that would artificially inseminate his wife’s eggs with his sperm. The procedure has less success the older the woman involved is: The Society of Assisted Reproductive Technology found that one egg retrieval will eventually result in a live birth less than 30 percent of the time if the woman is over the age of 38. For access to this shrinking possibility of success, Miles has been quoted between $12,000 to $15,000 per treatment.

Miles doesn’t have the insurance he needs to cover the cost and is considering a job that could give him better benefits. With the potential of improved benefits, however, comes a much higher risk to his quality of life.   

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“In the Gulf, we have a lot of manufacturing plants, and they have pretty much any type of chemical you could think of,” Miles said. “The health insurance would be great, pay would be great, but the hazards are pretty dangerous. Almost anything in those manufacturing plants is a risk that can kill you.” 

According to Neel Parekh, a urologist at the Cleveland Clinic, cost is a barrier to entry for adequate fertility care for patients. Average costs vary from state to state, and there are not many stable, fixed prices in this space, and the fact that fertility treatment costs are impossible to gauge is a problem in and of itself, especially for people who may not be able to afford it.

“Fertility care that we provide is pretty expensive, and it’s very frustrating but oftentimes isn’t covered by insurance,” he told VICE. “That’s a barrier for not only people of color, but a lot of patients that I see.”

This is the situation Miles finds himself in. Insurers are not required by Louisiana state law to provide coverage for fertility drugs, IVF, or any additional assisted reproductive techniques, according to RESOLVE, a national infertility support group. Insurers in David and James’ home states of Georgia and North Carolina do not have any fertility laws whatsoever. Just 11 states have laws requiring insurers to cover IVF treatments in their health care plans.

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Joseph Alukal, a urologist at New York-Presbyterian Columbia University Irving Medical Center, told VICE that some of his colleagues have begun examining the specific burden on patients of color regarding access and cost of fertility coverage. In the meantime, Akukal said that patient advocacy groups are trying to remind physicians how personal this problem is for those struggling—and how unaffordable examining one’s fertility can be.

“How can you say to one group of people, ‘Unless you have enough money in your pocket, you can’t have a kid?’” Alukal asked. “Without any question, if you were a person of color in most places in the United States, you are less likely to have fertility coverage through your insurance.” 

The Path Forward

David, James, Miles, and I all want to be biological fathers, and we all fear that insurmountable odds will prevent us from accomplishing our goal. 

Miles is still looking for a job that will offer the fertility benefits needed to cover the high cost of corrective surgery. James is reluctant to pay out of pocket for procedures like IVF that have low rates of success and has halted his attempt at having a child. My insurance has allowed me to receive prescriptions of Clomid and Anastrozole to increase my hormone levels to make conditions more optimal for a sperm extraction for IVF. 

When many think of infertility, they think of women, even though men contribute to half of all infertility cases—equal to roughly 10 percent of males who try to have a child with a female partner.

David and his wife have opted to adopt, but still hope that conceiving on their own will one day be possible. Regardless, he wants more Black men to speak up on the issue so that people can see the need for help and resources. 

“I would definitely love for African American male infertility to be a topic of discussion, and for there to be light brought to the issue,” he said. “Just being able to Google and see something like, ‘15 percent of African-American men have this condition’—to see this statistic or something, to know that I'm not alone.” 

One drawback of more men not coming forward is that it slows the possibility of collecting data that is needed to properly address the condition. But experts said further research on infertility may be difficult to come by, as there seem to be fewer new doctors interested in the field. A 2021 investigation in JAMA Network projects that the number of urologists in the United States were expected to shrink from 23.8 urologists per 100,000 people to 15.8, echoing earlier studies predicting the decline of urologists

That lack of representation may exacerbate a systemic problem. “People of color often have less resources around fertility health,” Khaled Kteily, CEO of the male fertility company Legacy, told VICE. “How many studies have we all seen about Black folks’ pain in the hospital is not taken as seriously? I suspect the same is true in the fertility world.”  

Many Black men suffering from infertility, like the four of us, continue to feel lost and alone. If more Black men speak up about their experiences, the less it will feel like we're members of a club most men don’t want to join. But what would make that kind of open communication feel more possible—and what would practically be most helpful to men like us who can't find answers or support about infertility—would be structural change. The health care system needs to provide better resources that meet and recognize Black men's unique needs in trying to conceive. 

In the meantime, my wife and I don't have the luxury of waiting for guidance, either interpersonally or medically. All we can do is continue fighting to have a child who looks like us, whatever it takes us to find our own way to parenthood.

Tagged:

RACISM, Black, fertility, infertility, american health care system, black men, bills and health, health care system

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