Infertility: Overcoming stigma in the Asian American community

Kai Eng April 26, 2017 0

Annie Kuo. • Courtesy Photo

Annie Kuo is an ambassador and family-building advocate with Resolve: The National Infertility Association. Kuo brought Resolve’s presence back to the Greater Seattle area and leads a monthly support group in Greenwood. She also brought The ART of Infertility, a free art exhibit detailing stories of those who have experienced infertility, from Michigan to Seattle Center’s International Pavilion this month.

On the occasion of National Infertility Awareness Week (April 23-29), the International Examiner connected with Kuo to discuss infertility and its stigma in the Asian American community, and ways to spread community awareness about this medical condition.

You can read more about Annie’s work in the Seattle infertility community here, and her secondary infertility story here.

International Examiner: How common is infertility in Seattle? Who does it affect?

Annie Kuo: Infertility is more common than one might think. According to the CDC and National Survey of Family Growth, infertility affects one in eight American couples. By other measures, including unmarried women and the current duration approach (how long people have been trying, even if they have not been medically diagnosed), this looks like one in six people! Infertility is an equal opportunity disease, meaning it strikes at random. The causes for infertility are shared equally between men and women, about one-third male factor, one-third female factor, with the remaining third a combination of factors or unexplained.

Over 150,000 people in Washington State are living with infertility. Seattle has a highly educated population, with many professionals waiting to establish careers and pursue higher education before starting families. I suspect that Seattle’s infertility profile is similar to that of other major cities with similar demographics and that there may be a higher incidence of age-related factors to infertility cases here. However, like any large city, there will be a range of reasons for infertility among the population.

When visiting from Thailand, my father observed that there are a lot of twins in Seattle. Of course, some people just have twins, but other reasons may be older women having twins in Seattle due to hyperovulation (older women sometimes release more than one egg) or twins resulting from fertility patients pursuing treatment. Fortunately, for the many people living with infertility in Seattle, we have a strong network of collaborative reproductive health professionals and family-building resources to support this population.

Only 15 states in the U.S. offer some type of insurance coverage for fertility treatment, but only eight states offer coverage for in vitro fertilization (IVF). Unfortunately, this does not include Washington State. I am part of an effort to advocate for change in Olympia and Washington, D.C.; however, it is a long road to reverse policy. Change will require more people asking for it and getting lawmakers’ attention on these issues of financial relief and greater access to care.

IE: How does infertility affect the Asian community?

Kuo: Research on infertility in the Asian community inside the United States is scarce, but research in Asian countries indicate that infertility does have a stigma and that culturally, few methods are considered acceptable for addressing the medical issue. Asian men and women are less likely to consent to be contacted for fertility research and generally seem less informed about fertility issues. Less than half of Asian people surveyed seemed to know that the chances of getting pregnant decline with age and are less likely to suspect a male factor. Recruiting Asian egg and sperm donors can be challenging because of cultural stigmas of “giving up” one’s bloodline for profit, which can be viewed negatively. I recall that a year ago, a local sperm bank only had one Indian donor in its catalog. In India, couples using gamete donation often keep this a secret to conceal their infertility, which is viewed negatively by society, and protect themselves from that social stigma, but also to maintain the perceived biological connection between themselves and the resulting child.

Some studies suggest that different ethnic groups respond differently to different medical treatments. For example, one study in Reproductive Bio Medicine Online suggested that Asian women undergoing ovarian stimulation, inseminations and IVF achieve significantly fewer pregnancies and live births as compared to Caucasian women. A follow-up study showed that Asian American women had almost one-third fewer pregnancies and live births than white women after IVF. Less eggs are produced by Asian women in fertility treatment than by white women, across all levels of a hormone that is a basic marker of ovarian reserve (egg supply).

Though difference in outcomes were clear, the reasons are still mysterious—which is frustrating. Through some research and consulting with local fertility professionals, I learned that genetics are a likely cause—some genetic diseases (such as Fragile X) are more common in certain races, which may impact fertility. I also learned that endometrial lining is thinner in Asian women compared to white women, which may affect the implantation of embryos. There is a high incidence of polycystic ovarian syndrome (known as PCOS) among South Asian women, leading to egg quality issues and potentially lower implantation rates. Endometriosis and systemic lupus (SLE) are more common in Asian women, and Asian women have more exposure to methyl Mercury and vitamin D deficiency, which are environmental factors that can impact fertility. Chronic hepatitis B infection also has a higher incidence in Asian women during fertility treatment (and after conception, Asian women incur a higher rate of gestational diabetes).

Another observation is that many nail technicians (the majority of whom are women of color, many of those being Vietnamese) are at high risk of exposure to harmful toxins and chemicals that are linked to reproductive harm, such as infertility, miscarriages, and cancer.

The warning here is that an Asian couple struggling to conceive should consult a fertility specialist sooner than later, and it may take longer for them to be successful through fertility treatment.

Unfortunately, lack of health coverage is a real phenomenon in the Asian American community. More than one in five Asian American women of child-bearing age (up to 44) is uninsured. I recently inquired about the handling of infertility referrals with [International Community Health Services (ICHS)], which offers affordable health care to many Asians in our community at a sliding scale. However, if a couple requires a referral to a fertility specialist, those visits and treatments are not offered on a sliding scale and would no longer be affordable. Even insured people in Washington State cannot benefit from any state-mandated coverage for fertility treatment; it currently doesn’t exist.

IE: Why is there a stigma/shame surrounding infertility and how could it prevent people from speaking out?

Kuo: Studies have shown that Asian/Asian American women actually delay seeing a fertility specialist, compared to other ethnic groups, and appear to struggle with their infertility for much longer periods of times before seeking professional medical help. Asians in the U.S. may hesitate to discuss sexual issues or bodily functioning even with a medical professional, because these are culturally taboo discussion topics. They may think diagnostic tests are too invasive or prefer talking with a family member for advice rather than a medical professional.

I think there is a shame element in this—“saving face” is very important in Asian culture. Embarrassment at being “different” or feeling like a failure for being unable to fulfill a societal expectation or the basic reproductive function can be part of this stigma around infertility.

The stigma is likely linked to the fact that many Asian cultures place great significance on marriage and parenthood. Also, certain Asian communities are highly patriarchal in nature, so there may be more resistance to pursuing fertility treatment since women may not be expected to make decisions or be independent. In some cultures, religious restrictions (for example, among Catholics in the Filipino or Vietnamese communities) may also play a role.

IE: How does the art exhibit speak to/represent infertility and healing?

Kuo: The act of creation can be very healing and comforting to someone who is not able to conceive. The founder, Elizabeth Walker, said that she needed something tangible to represent her journey with infertility. To create something and share one’s passage through a life crisis can be a very healing process. The ART of Infertility, which is a play on words for “assisted reproductive technologies,” is a space for expression of many of the emotions experienced during the struggle of infertility. This includes pain, frustration, grief, confusion, numbness, and isolation. Healing does come from sharing your story. Ten Seattle artists contributed to the artwork in this exhibit, which includes pieces from the nearly 200 items in the permanent collection. The local contributions include poetry, mixed media, photography, painting, a graphic novel, and more. The ART of IF hopes to encourage people to engage in art around infertility by offering a free public art workshop on blackout poetry during closing weekend, the afternoon of April 29 at the gallery.

I met Elizabeth and the co-director, Maria Novotny, during Infertility Advocacy Day in Washington, D.C. They invited me to the art exhibit and workshop the next day and I was watching my friend’s husband look around very intentionally at the exhibit. He wasn’t the type of guy who would attend an infertility support group, but I realized he was finding support and feeling less isolated in that moment. He was finding community in that exhibit by witnessing other people’s stories which confirmed and validated his own experiences. This observation is what clinched my wanting to bring the exhibit to Seattle. Although I host Resolve support groups in Seattle, I know a support group is not everyone’s cup of tea—maybe some introverts, for example, would prefer to find solace and community by going to an art gallery or movie. Artistic mediums often confirm the universality of what many of us experience, and that can be huge in helping us feel less alone.

Besides the half-Japanese Maya Grobel-Moskin, whose film One More Shot with her husband, Noah Moskin, opened The ART of IF exhibit in Seattle, other Asian American artists involved in the Seattle exhibit include a Chinese Canadian man, Nathan Chan, who has pursued single fatherhood by surrogacy, and myself, a Thai American.

IE: What resources are available for people in the Asian American community struggling with infertility?

Kuo: I am not aware of any specific infertility resources for the Asian American community except for the 11 Resolve monthly support groups offered in Western Washington. We are free, drop-in groups, organized in different geographic areas and by special interests such as secondary infertility, third party reproduction, and pregnancy and parenting after infertility. People can find groups, resources, and information at resolve.org. Another good family-building resource is path2parenthood.org.

How can people seeking to contribute to infertility awareness help?

Kuo: Talking about it just might be the thing that helps the most. Social media is a great platform to reach many people. The more we talk about infertility, the less stigma and shame there will be around it, which is why it’s incredibly helpful when celebrities open up and share how infertility has affected them. By encouraging open conversation with friends and family, people might be encouraged to seek help sooner. I’ve seen more and more people on my Facebook feed talking openly about their struggles with infertility, and you wouldn’t believe the number of people who open up about their own experiences in the comment section. It helps people to feel like they aren’t alone; that people in their own social circle have struggled as well. I also think that empowering people by equipping them with knowledge can help. It is important to share knowledge and provide resources that everyone can understand, not just scientists and doctors.

IE: Anything else you’d like to let our readers know about?

Kuo: Infertility Advocacy Day is each year in Washington, D.C. This year Resolve and the American Society for Reproductive Medicine are co-hosting Advocacy Day on May 18th to bring the most people together in the history of this event to talk to Congress about issues facing Americans trying to build their families. I will be there this year as Training Chair, meaning I’m responsible for equipping the advocates with tools and information for the meetings with their lawmakers. We have a tiny team from Washington State and we’d love to grow. California is sending a dozen advocates! If people cannot go, they can help by writing a letter to their senators and House reps asking for increased access to family-building options and financial relief. More information about Advocacy Day is at resolve.org/advocacyday.

The ART of Infertility exhibit will be displayed at the Art/Not Terminal Gallery in the Seattle Center International Pavilion until 4:00 p.m. on April 30. The public art workshop on blackout poetry will be held April 29 from 2:00 p.m. to 5:00 p.m. at the gallery; admission is free. For more information, go to artofinfertility.org and to register for the workshop, go to bit.ly/blackout_SEA.

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