Finding a Voice for Those Dealing with Infertility

from the editor:

Patients Rising is all about patients. Part of how we are showing this is by featuring more articles built around the people we serve. We spoke to Laura about infertility, then both told her story and built up information around her story. We hope you like this new theme. Okay, here’s Surabhi…

Laura L. is an experienced nurse specializing in a role that helps patients with complex medical or social needs navigate our complex healthcare system while simultaneously pursuing her Master of Science in Nursing Leadership. You’d think that for someone like Laura, who’s immersed neck-deep in healthcare, personal healthcare would be a breeze, right? Wrong!

For the past few years, Laura and her husband have struggled to cope with infertility—a diagnosis that is “often overlooked and takes on many names.” Her own experiences made her realize that infertility is disregarded as a serious medical condition, and that only those who are financially secure can access treatments to grow a family. 

“Infertility is isolating, frustrating, expensive and gaslighting occurs from not only medical providers but also friends and family,” Laura said in a conversation with Patients Rising, adding that her lived experience inspired her to share her story on behalf of others facing similar challenges.

see more of Laura’s story in our feature of her on Instagram

We Don’t Talk About Infertility

Having children is often thought of as a ‘given’ for most would-be parents and there is a great omnidirectional social pressure to have children. So, when couples have difficulty conceiving, it’s often not spoken about openly. “There is a definite shame associated with infertility,” Laura said, “and it’s why so many women stay quiet about it.”

Many people think in vitro fertilization, commonly referred to as IVF, is what fertility treatment looks like. To many women, Laura included, it can look different. “I was diagnosed with polycystic ovarian syndrome (PCOS), though I wasn’t the typical case. Typical signs of PCOS include rapid weight gain and hair growth in unexpected places—a reflection of elevated testosterone levels.”

PCOS causes irregular menstrual periods that can lead to fertility issues. PCOS also increases insulin levels, which in turn can trigger androgens (such as testosterone) that can interfere with the normal functioning of ovaries. 

The hormonal imbalance that Laura was experiencing caused her fatigue, exhaustion, and a decline in her emotional health. When she shared this with her primary care physician (PCP), she was prescribed antidepressants, which Laura was strongly against. 

Her condition did not improve despite being toggled between her PCP, her obstetrician, and her reproductive endocrinologist. It wasn’t until Laura paid out of pocket for a nurse practitioner (NP) with reproductive health experience that the underlying problem was identified: hypothyroidism and was Vitamin D deficiency. Once she started receiving treatment for these conditions, Laura saw an abatement of her depression. Reenergized, she found balance in her life again.

“My doctors were not willing to look at me holistically.” Laura explained. “They just wanted to focus on treating symptoms rather than understanding their cause.”

Cost, Coverage, and Advocacy for Fertility Treatment

Laura paid the NP she was seeing out-of-pocket, but the cost was modest, especially considering the good level of care she received. But for a lot of individuals, there are significant economic barriers to fertility care: insurance either does not cover fertility diagnosis or care or excludes IVF. IVF alone can cost in the thousands for a single cycle, which can be a stretch for family budgets. Patients often end up paying out of pocket. That is over and above their cost sharing for necessary medications and doctor’s fees.

However, grassroots campaigns by advocates have led to state-mandated coverage rules for fertility care. So, if you live in one of the 20 states that have passed fertility insurance coverage laws, approach your insurance company for details. Fourteen states had laws in place for IVF coverage as of June 2022.

A lack of insurance coverage for fertility treatments, coupled with poor physician support and poor care coordination clearly indicate that infertility is not treated like other disorders. Because of this, Laura feels compelled to get involved in advocacy to change that reality. She hasn’t spoken with a legislator yet, or shown support for a particular bill in Congress, but now that she is interested and ready, Patients Rising Now is ready to support her advocacy efforts. 

Additional Resources:

Do you want to share your story about infertility? Here are some ways you can do it:

CREATE AN AUDIO CLIP that can be featured on our podcast

MAKE A SHORT SOCIAL POST that we can on our social media channels

TELL YOUR LONGER STORY on the Patients Rising Stories platform – no word limits, use your images, get a URL to share wherever you wish

Or you can answer a few questions about infertility here.

Surabhi Dangi-Garimella, Ph.D. is a biologist who provides writing and strategic support to non-profit groups via her consultancy, SDG AdvoHealth, LLC.

Surabhi on LinkedIn

Surabhi Dangi Garamella

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