Women Absent From Debates About Women's Health : Shots - Health News When leaders in Washington discuss the future of American health care, women are not always in the room. Here, eight women from around the country share their personal stories, fears and hopes.
NPR logo Often Missing From The Current Health Care Debate: Women's Voices

Often Missing From The Current Health Care Debate: Women's Voices

U.S. Sen. Susan Collins, R-Maine, and other female senators were excluded from the Senate leadership health task force this summer. Justin Sullivan/Getty Images hide caption

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Justin Sullivan/Getty Images

U.S. Sen. Susan Collins, R-Maine, and other female senators were excluded from the Senate leadership health task force this summer.

Justin Sullivan/Getty Images

Women have a lot at stake in the fight over the future of health care.

Not only do many depend on insurance coverage for maternity care and contraception, they are struck more often by autoimmune conditions, osteoporosis, breast cancer and depression. They are more likely to be poor and depend on Medicaid, and to live longer and depend on Medicare. And it commonly falls to them to plan health care and coverage for the whole family.

Yet in recent months, as leaders in Washington discussed the future of American health care, women were not always invited. To hammer out the Senate's initial version of a bill to replace Obamacare, Majority Leader Mitch McConnell appointed 12 colleagues, all male, to closed-door sessions – a fact that was not lost on female Senators. Some members of Congress say they don't see issues like childbirth as a male concern. Why, two GOP representatives wondered aloud during the House debate this spring, should men pay for maternity or prenatal coverage?

As the debate over health care continues, one of the challenges in addressing women's health concerns is that they have different priorities, depending on their stage in life. A 20-year-old may care more about how to get free contraception, while a 30-year-old may be more concerned about maternity coverage. Women in their 50s might be worried about access to mammograms, and those in their 60s may fear not being able to afford insurance before Medicare kicks in at 65.

To get a richer sense of women's varied viewpoints on health care, we asked several women around the country of different ages, backgrounds, and political views to share their thoughts and personal experiences.

Now retired, Patricia Loftman, 68, sits on the board of the American College of Nurse-Midwives and advocates for better care for minority women. Courtesy of Patricia Loftman hide caption

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Courtesy of Patricia Loftman

Now retired, Patricia Loftman, 68, sits on the board of the American College of Nurse-Midwives and advocates for better care for minority women.

Courtesy of Patricia Loftman

Patricia Loftman, 68, New York City

Loftman spent 30 years as a certified nurse-midwife at Harlem Hospital Center and remembers treating women coming in after having botched abortions.

Some didn't survive.

"It was a really bad time," Loftman says. "Women should not have to die just because they don't want to have a child."

When the Supreme Court ruled that women had a constitutional right to an abortion in 1973, Loftman remembers feeling relieved. Now she's angry and scared about the prospect of stricter controls. "Those of us who lived through it just cannot imagine going back," she says.

A mother and grandmother, Loftman also recalls clearly when the birth control pill became legal in the 1960s. She was in nursing school in upstate New York and glad to have another, more convenient option for contraception. Already, women were gaining more independence, and the Pill "just added to that sense of increased freedom and choice."

To her, conservatives' attack on Planned Parenthood, which has already closed many clinics in several states, is frustrating because the organization also provides primary and reproductive health care to many poor women who wouldn't be able to get it otherwise.

Now retired, Loftman sits on the board of the American College of Nurse-Midwives and advocates for better care for minority women. "There continues to be a dramatic racial and ethnic disparity in the outcome of pregnancy and health for African-American women and women of color," she says.

Terrisa Bukovinac, 36, serves as president of Pro-Life Future of San Francisco and participates in anti-abortion demonstrations. Courtesy of Terrisa Bukovinac hide caption

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Courtesy of Terrisa Bukovinac

Terrisa Bukovinac, 36, serves as president of Pro-Life Future of San Francisco and participates in anti-abortion demonstrations.

Courtesy of Terrisa Bukovinac

Terrisa Bukovinac, 36, San Francisco

Bukovinac calls herself a passionate pro-lifer. As president of Pro-Life Future of San Francisco, she participates in marches and protests to demonstrate her opposition to abortion.

"Our preliminary goal is defunding Planned Parenthood," she says. "That is crucial to our mission."

As much as the organization touts itself as being a place where people get primary care and contraception, "abortion is their primary business model," Bukovinac says.

She said the vast majority of abortions are not justifiable and that she supports a woman's right to an abortion only in cases that threaten her life. "We are opposed to what we consider elective abortions," she says.

Bukovinac says she also tries to help women in crisis get financial assistance so they don't end their pregnancies just because they can't afford to have a baby. She supports women's access to health insurance and health care, both of which are costly for many. "Certainly, the more people who are covered, the better it is" for both the mother and baby.

Bukovinac herself is uninsured because she says the premiums cost more than she would typically pay for care. Self-employed, Bukovinac has a disorder that causes vertigo and ringing in the ear and spends about $300 per month on medication for that and for anxiety.

She doesn't know if the Affordable Care Act is to blame, but she said that before the law "I was able to afford health insurance and now I'm not."

Irma Castaneda, 49, says the bright side of becoming eligible for Medicaid was her family now faces fewer out-of-pocket expenses for health care. Courtesy of Irma Castaneda hide caption

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Courtesy of Irma Castaneda

Irma Castaneda, 49, says the bright side of becoming eligible for Medicaid was her family now faces fewer out-of-pocket expenses for health care.

Courtesy of Irma Castaneda

Irma Castaneda, 49, Huntington Beach, Calif.

Castaneda is a breast cancer survivor. She's been in remission for several years but still sees her oncologist annually and undergoes mammograms, ultrasounds, and blood tests.

The married mom of three, a teacher's aide to special education students, is worried that Republicans may make insurance more expensive for people like her with pre-existing conditions. "They could make our premiums go sky high," she says.

Her family previously purchased a plan on Covered California, the state's Obamacare exchange. But there was a high deductible, so she had to come up with a lot out-of-pocket money before insurance kicked in. "I was paying medical bills up the yin yang," she says. "I felt like I was paying so much for this crappy plan."

Then, about a year ago, Castaneda's husband got injured at work and the family's income dropped by half. Now they rely on Medicaid. At least now they have fewer out-of-pocket expenses for health care.

Whatever the coverage, Castaneda says, she needs high-quality health care. "God forbid I get sick again," she says. And she worries about her daughter, who is transgender and receives specialized physical and mental health care.

"Right now she is pretty lucky because there is coverage for her," Castaneda says. "With the Trump stuff, what's going to happen then?"

Celene Wong, 39, Boston

The choice was agonizing for Wong. A few months into her pregnancy, she and her husband learned that her fetus had chromosomal abnormalities. The baby would have had severe special needs, she said.

"We always said we couldn't handle that," Wong recalls. "We had to make a tough decision, and it is not a decision that most people ever have to face."

The couple terminated the pregnancy in January 2016, when she was about 18 weeks pregnant. "At the end of the day, everybody is going to go away except for your husband and you and this little baby," she says. "We did our research. We knew what we would've been getting into."

Wong, who works to improve the experience for patients at a local hospital, says she is fortunate to have been able to make the choice that was right for her family.

"If the [abortion] law changes, what is going to happen with that next generation?" she wonders.

Lorin Ditzler, 33, says concerns about insurance coverage could play a role as she and her husband decide whether to have a second child. Courtesy of Lorin Ditzler hide caption

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Courtesy of Lorin Ditzler

Lorin Ditzler, 33, says concerns about insurance coverage could play a role as she and her husband decide whether to have a second child.

Courtesy of Lorin Ditzler

Lorin Ditzler, 33, Des Moines, Iowa

Ditzler is frustrated that her insurance coverage may be a deciding factor in her family planning. She quit her job last year to take care of her 2-year-old son and was able to get on her husband's plan, which doesn't cover maternity care.

"To me it seems very obvious that our system isn't set up in a way to support giving birth and raising very small children," she says.

While maternity benefits are required under the Affordable Care Act, her husband's plan is grandfathered under the old rules, which is not uncommon among employers that offer coverage. Skirting maternity coverage might become more common if Republicans in Congress pass legislation allowing states to drop maternity coverage an "essential benefit."

Ditzler looked into switching to an Obamacare plan that they could buy through the exchange, but the rates were much higher than what she pays now.

If she goes back to work, she could get on a better insurance plan that covers maternity care. But that makes little sense to her. "I would go back to a full-time job so I could have a second child, but if I do that, it will be less appealing and less feasible to have a second child because I'd be working full time."

Ashley Bennett, 34, says she voted for Trump in the 2016 election because he was the anti-abortion candidate. Courtesy of Ashley Bennett hide caption

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Courtesy of Ashley Bennett

Ashley Bennett, 34, says she voted for Trump in the 2016 election because he was the anti-abortion candidate.

Courtesy of Ashley Bennett

Ashley Bennett, 34, Spartanburg, S.C.

Bennett describes herself as devoutly Christian. She is grateful that she was able to plan her family the way she wanted, with the help of birth control. She had her daughter at 22 and her son two years later.

"I felt free to make that choice, which I think is an awesome thing," she says. She's advised her 12-year-old daughter to wait for sex until marriage but has also been open with her about birth control within the context of marriage.

But she draws the line at abortion. "I just feel like we're playing God. If that conception happens, then I feel like it was meant to be."

Bennett had apprehensions about Trump but voted for him because he was the anti-abortion candidate. "That was the deciding factor for me, [more than] him yelling about how he's going to build a wall."

For her, opposition to abortion must be coupled with support for babies once they are born. She supports adoption and is planning to become a foster parent.

She also is concerned about the mental and physical well-being of young women. Bennett teaches seventh-grade math and coaches the school's cheerleading and dance teams.

She watches the girls take dozens of photos of themselves to get the perfect shot, then add filters to add makeup or slim them down.

"There's going to be an aftermath that we haven't even thought about," she says. "I worry we're going to have more and more kids suffering from depression, eating disorders and even suicide because of the effects of the social media."

Maya Guillén says she worries Republican efforts to defund Planned Parenthood could prevent young girls, especially those in predominantly Hispanic communities like hers, from getting access to contraceptives. Courtesy of Maya Guillén hide caption

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Courtesy of Maya Guillén

Maya Guillén says she worries Republican efforts to defund Planned Parenthood could prevent young girls, especially those in predominantly Hispanic communities like hers, from getting access to contraceptives.

Courtesy of Maya Guillén

Maya Guillén, 24, El Paso, Texas

When Guillén was growing up, her family spent years without health insurance. They crossed the border into Juárez, Mexico, for dental care, doctor appointments, and optometry visits.

Guillén is now on her parents' insurance plan under a provision of the Affordable Care Act that allows children to stay on until they turn 26. She's been disheartened by Republicans' proposed changes to contraception and abortion coverage, she says.

In high school, Guillén received abstinence-only sex education. She watched her friends get pregnant before they graduated.

When it came time to consider sex, she thought she'd be able to count on Planned Parenthood, but the clinic in El Paso closed, as have 20 other women's health clinics in Texas. She worries that if Republicans defund Planned Parenthood, more young girls, especially those in predominantly Hispanic communities like hers, will not be able to get contraceptives.

Jaimie Kelton, 39, poses with her wife and their daughter. Courtesy of Suzanne Fiore hide caption

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Courtesy of Suzanne Fiore

Jaimie Kelton, 39, poses with her wife and their daughter.

Courtesy of Suzanne Fiore

Jaimie Kelton, 39, New York City

When Jaimie Kelton's wife gave birth to their baby 3½ years ago, she thought the country was finally becoming more open-minded toward gays and lesbians.

"Now I am coming to realize that we are the bubble and they are the majority and that's really scary," says Kelton, now pregnant with her second child.

Kelton says it seems as though Republicans have launched a war against women in general, with reproductive rights and maternity care at risk.

"It is crazy to think that most of the people making these laws are men," she said. "Why do they feel the need to take away health care rights from women?"

This story was produced by Kaiser Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. Gold can be reached @JennyAGold on Twitter and Gorman @AnnaGorman.