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For almost ten years, I’ve been running from my high genetic risk of breast cancer.
The knowledge of my genetic risk of breast cancer has been hanging over my head since I was 18, and as I age, I worry how much time I have left to reduce my risk. My mother, my aunt, my grandmother, and my great-grandmother are a few of the women on my mom’s side of the family who had breast cancer. Some of them died from it; my mom survived breast cancer, but in 2012 she died of a rare type of cancer linked to ovarian cancer. She was only 50.
Effective preventive care exists for both breast and ovarian cancer. Two surgeries, for example, can greatly reduce risk: A preventive double mastectomy, which removes all the breast tissue, can reduce the risk of developing breast cancer by 90 to 95 percent for people with a BRCA gene mutation; an oophorectomy, which removes one or both of the ovaries, can greatly reduce breast cancer risk if performed before menopause, and also reduce the risk of ovarian cancer.
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But in order to access preventive surgeries, most insurance plans require patients first undergo genetic counseling and genetic testing to confirm their cancer risk. This web of barriers can keep many people from accessing preventive care altogether—including me.
In February, I had plans to take the first steps toward protecting myself when my doctor referred me to a genetic counselor (the nearest one was an hour away from where I live in North Carolina). But then the COVID-19 pandemic hit, and my ten-year process was put on hold again.
Delaying health care during the pandemic
Whether due to fears about contracting the virus or because of states’ restrictions on “nonessential” health care, I’m not the only one who has delayed reproductive care in the last few months. A survey in May conducted by the Guttmacher Institute found that 1 in 3 women said “because of the pandemic, they had to delay or cancel visiting a health care provider” for sexual and reproductive health services, or that they had trouble getting their birth control.
Laura Lindberg, Guttmacher’s lead researcher on the survey, told Rewire.News that experts are worried about the immediate impact of being unable to get birth control, like unplanned pregnancies, as well as the future impact of delaying reproductive care. People who miss or delay face-to-face appointments are going to miss Pap smears, STI screenings, and mammograms, for example.
“Down the road, the question is, are there [more] untreated STIs? Could that lead to higher rates of cervical cancer? What do missed HPV vaccinations mean?” Lindberg said.
Barriers to care, and the resulting risks of future health problems, aren’t shared equally by all people. Guttmacher found that barriers created by the pandemic disproportionately affected women of color and queer women: 38 percent of Black women and 45 percent of Hispanic women reported delaying or canceling a visit, compared to 29 percent of white women. And 46 percent of queer women reported delaying care compared to 31 percent of straight women.
“The COVID-19 pandemic has not only compounded racial inequities in reproductive care, but we need to remember, it’s also compounding social inequity through who gets to work from home, who’s losing their jobs, and whose jobs aren’t going to come back immediately as the stay-at-home orders were lifted,” Lindberg said.
Women are more likely than men to have lost their jobs during the pandemic, with women of color experiencing the most job losses. Many of the newly unemployed lost their health insurance, which means that even once the pandemic is over, they might not be able to afford the care they delayed. Twenty-seven percent of women reported that “because of the pandemic, they worry more than they used to about their ability to afford or obtain a contraceptive method,” according to Guttmacher.
Impacts on health-care access are just unfolding
Though I haven’t lost my marketplace health insurance, I did lose my part-time job, which comprised the bulk of my income. My insurance has a nearly $8,000 deductible and high co-pays, so I can’t afford much additional health care.
The cost of care, combined with providers seeing fewer patients, means the amount of care I need is piling up. In addition to delaying preventive care for my breast cancer risk, I couldn’t have my intrauterine device (IUD) removed in June at the end of its five-year lifespan. I am also overdue for my annual Pap smear and breast exam. The first available appointment my gynecologist has is in September—an example of the backlog many providers are facing due to people delaying medical care.
But Lindberg said there are options and policies that would help mitigate barriers. For example, the use of telemedicine is helping people access care that doesn’t have to be delivered in person. Guttmacher found that “among women using the pill, 24 percent reported that, because of the pandemic, they had switched to a telemedicine appointment” to have their prescription refilled. But even then, access to telemedicine services isn’t equal. For months, telemedicine abortion care during the pandemic was in regulatory limbo, but on Monday, a ruling by a federal judge offered a glimmer of hope.
Lindberg said the pandemic has also highlighted the flaws with employer-based health insurance. “We can see how that system leaves people vulnerable to not being able to get their health-care needs met as the labor market becomes unstable,” she said. “There’s good evidence that states which expanded Medicaid have done a better job of being able to provide health care to lower-income individuals.”
The domestic “gag rule,” which prevents clinics that receive Title X federal family planning funds from talking about or referring patients for abortion, also impedes people’s ability to get affordable care during or after the pandemic, Lindberg said. The gag rule forced hundreds of reproductive health-care clinics to give up their Title X funding, which could affect how many lower-income patients they’re able to serve.
“We think there’s likely to be an increased demand for publicly funded reproductive health-care services, such as those provided by Title X,” Lindberg said. “However, the Title X system has been decimated by policies of the Trump administration coming into the pandemic and may not have the capacity to take on the demand for new patients.”
The impact of the coronavirus pandemic on health-care access is just unfolding, she said, “and we have months and months ahead of us with challenges that we need policies to help address.”
My anxiety about my breast cancer risk increases as more time passes, but North Carolina’s COVID-19 cases are still rising, forcing me to delay preventive care I’ve already put off for a decade and other health care. Every time I think about these repeated delays, I remember brushing my mom’s hair when I was 8 years old. She was so exhausted by chemotherapy treatments for her breast cancer that she couldn’t brush her own hair. She wasn’t even 40 years old.
I’ve done my best to jump through what feels like a nonstop obstacle course to save my own life. The pandemic has only added to that, for me and so many others, and it’s unclear just how far-reaching the public health impacts will be.