Bills, Barriers and Bias: Women’s Health Care Stories Show Need for Action on Costs and Quality

By Amy Allina

Ofelia Sierra stood before a room of more than 120 people and told her story, first in Mixteco and then in English: “When I got sick a few months ago, I had a very high fever. I waited and waited, but finally I went to the emergency room. I felt like if I didn't speak the language well, I had no voice. They asked me why I had children if I didn't speak the language. They took my temperature and blood pressure, but didn't give me any medicine. Later I got a bill for $1,000 for that visit.”

Sierra was speaking at the April 1 Speakout for Action on Health Reform in New York City organized by Raising Women’s Voices for the Health Care We Need (RWV). That same night, 20-year-old Red Samaniengo also rose to tell a story familiar to many young women, about how a frightening and painful accident catapulted her into a financial crisis. “Like most students, my college health insurance doesn't cover me when I'm not in school,” she said. “Last summer, I went with friends to a lake, and I made a mistake. Everyone was jumping off high rocks into the water, but when I jumped I landed wrong, and the impact peeled the skin off of my legs. My friend’s parents took me to the emergency room, even though I kept telling them I couldn’t pay the bill. I said the same thing to the doctors and nurses who treated me, but they said I had to get taken care of. A month later I got a $7,000 medical bill. What am I supposed to do with that?”

Linking stories to solutions

Sierra and Samaniengo are two of the many women who came together for the first public RWV Speak- Out, one of many that will be held around the country this year to highlight women’s need for quality, affordable health care. The New York event opened with a welcoming performance by the InterChurch Center Gospel Choir, followed by a chorus of stories describing the frustration that women experience when dealing with the current health care system. Moderator Dr. Nancy Snyderman, NBC News’ Chief Medical Editor, directed responses from a panel of experts who described health policy changes that could address the unmet needs illustrated by the women’s stories.

On April 1st, almost every woman’s story demonstrated the devastating effects that the high cost of health care has on women and their families. Other important commonalities came through as well, including the profound need for higher-quality care that is provided in ways that are more respectful of the circumstances of women’s lives. Reacting to Sierra’s story, Deborah Reid, a policy expert at the National Health Law Program, described elements that contribute to quality health care. “We are talking about a conversation between patient and provider. With language and cultural barriers, there can be no meaningful communication, and therefore no quality care,” Reid explained.

Launched in New York, the RWV Speakout campaign is training and supporting local advocates and coalitions to organize similar events in communities around the country. From Wisconsin to Georgia to California to Illinois, these gatherings are attracting diverse participants who describe the wide scope of problems faced by women seeking health care for themselves and their families. The experiences recounted highlight the terrible personal consequences of the health care dilemmas faced by women, including:

• Worsening health conditions as uninsured and underinsured women avoid seeking help they can’t afford to pay for;
• Medical debt racked up when these women do seek care;
• Cultural biases and language barriers that undermine interactions between patients and clinicians; and
• Tragic miscarriages of justice when insurance companies use preposterous and callous policies to deny medically needed care to people in need, including infants born with disabilities, breast cancer patients, and pregnant women.

In Atlanta, RWV worked with the SisterSong Women of Color Reproductive Health Collective to bring a diverse group of women's organizations together to discuss health reform initiatives in the state and lay the groundwork for what participants described as a new phase of activism for health care for all. The Speakout was attended by local National Women's Health Network members as well as representatives from the Center for Black Women's Wellness, the Georgia Health Care Foundation, the National Council of Jewish Women’s Atlanta chapter, and the Feminist Women's Health Center. Participants spoke about the elements they view to be essential for real and meaningful health care reform, including midwifery care, comprehensive sexuality education, mental health services, and an expansion of the pool of primary care providers.

The Speakouts are fueling RWV’s efforts around health reform advocacy, coalition-building, and policy work. While the personal experiences shared among participants form the event’s heart, respondents from community health care institutions and policy-making bodies are also identifying themes among the stories and discussing the benefits of various solutions being considered by state legislatures and Congress. For example, in New York, Abby Drucker shared the story of her grand-niece, born with hearing loss that was deemed a “pre-existing condition” by her insurance company, which denied coverage for the services the baby needed to develop speech and learning skills. Expert respondent Lynn Paltrow, of National Advocates for Pregnant Women, pointed out the absurdity of the insurance industry’s operating practices and asked, “How can a newborn have a pre-existing condition?” Paltrow added, “We need a system that provides healthcare for everyone” instead of one that builds profits for insurance companies by using technicalities to avoid paying for medically necessary and appropriate care.

Mobilizing women for action on health reform

By generating a broad and diverse array of women’s perspectives on health care reform, the Speakouts expand policymakers’ and health reform advocates’ knowledge and understanding of the problems women face in the current system. They also forge new and stronger relationships between women’s health advocates and local health policymakers. And, perhaps most importantly, they help to build community-based advocacy networks and mobilize women to support comprehensive health care reform efforts.

When members of Congress returned to their home districts during the Spring recess, RWV activists in New York met with U.S. Representative Charlie Rangel, Chair of the Ways and Means Committee. The Committee will consider health reform legislation this year and Representative Rangel’s leadership will be critical to a successful health care reform effort. Lois, Uttley, co-founder of RWV and leader of Health Care for All New York, asked Representative Rangel how benefits packages will be determined under national health reform, noting that many groups are concerned about whether breast cancer treatment, chronic condition management, comprehensive reproductive health care, and other services will be addressed Mr. Rangel assured the group that “benefits will be determined by medical standards of care.”

As similar meetings take place in Congressional districts throughout the country, women’s health advocates are bringing their concerns directly to policymakers — like Representative Rangel — who have the power to make sure that women’s health needs will be addressed in health reform. Over the coming weeks and months, legislation will move forward and the RWV network will keep the drumbeat steady. You can be a part of this important initiative by contacting your Senators and Representative and urging them to stand firm and fight for solutions that will put an end to stories like the ones told by Samaniengo, Sierra, and far too many other women.

"We are using the power of women's real-life experiences to demonstrate the urgent need for change," said Byllye Avery, co-founder of RWV. “We want to keep up the pressure on lawmakers in Washington to get health reform done this year, and do it right!"

Read more about the RWV Speakout and get connected at the website, http://raisingwomensvoices.net. For photos and quotes from the Speakout, visit: http://raisingwomensvoices.net/RWV-WomensStories.html.

Amy Allina is the NWHN Program Director