6
Saving Lives
Four of us squished into the back of a cab with coffees balanced precariously in our hands headed for Capitol Hill—me; Ashley Boyd, the then health care director of MomsRising; Felicia Willems, a volunteer at the time; and Felicia’s five-year-old son, Ethan. That day was March 23, 2012, the second anniversary of the passage of the Affordable Care Act (ACA). The law had been under constant attack since it passed. Our message that day to Congress in Washington, DC, was simple: We’re standing strong for the consumer protections we’ve won through the Affordable Care Act.
Felicia, Ethan, Ashley, and I were “taking the Hill” that day to deliver books of stories about how women from every state in the nation had benefited from the coverage and protections in the ACA. Some women shared their relief that because the ACA passed, they no longer had to worry about exceeding an annual or lifetime limit on coverage. Others expressed how grateful they were that they could now stay on their parents’ health care plans until they were twenty-six years old. And so many women wrote us to share how glad they were that just being a woman was no longer a preexisting condition.
We had tens of thousands of signatures on an open letter to Congress from women across the nation supporting the ACA. It’s not surprising that large numbers of women responded to protest the repeal of this critical legislation. After all, women make 80 percent of health care decisions—not just for themselves, but for their loved ones, too.1
Our heels clicking on the marble floors, the four of us visited office after office reminding members of Congress that women are paying attention to what they’re doing inside the Beltway bubble, that everyone gets sick, and that everyone should have a chance to get better. We walked so many miles on those hard marble floors that Ashley, Felicia, and I started trading shoes among us midway through the day so that we’d rotate where we were each getting blisters on our feet.
But we kept on.
The content we were delivering that day was important. We were holding pure political power in our hands and delivering it directly to elected leaders to help shape the direction of health care policy as we literally walked in each other’s shoes. Sometimes women think that the actions they take online, the petitions and open letters they sign, the experiences they share in glowing text boxes on their computers late at night, don’t make a difference. I’m here to tell you that you are more powerful than you think. I’ve been part of nearly countless deliveries like this to elected leaders at the local, state, and national levels on a wide variety of policies, and every single time I’ve been humbled to witness an incredible impact.
We saw that impact on March 23 as we delivered the long list of signatures along with a book of stories from women around the country about the positive, life-saving impact of the ACA to members of Congress. We didn’t stop there, though. We went on, in our now traded shoes, to share those stories later that day at a press conference alongside then House Minority Leader Nancy Pelosi, and then we hopped in another cab. This time our stop was the West Wing, where we worked on a joint Tweetchat with the White House (led by President Barack Obama at the time) to help spread the word even farther about why health care still needed to be protected.
Women helped hold the line that day—and on many days after that one. As of the writing of this book, there have been more than fifty attempts by Republicans in Congress to overturn the ACA, which covers tens of millions of people. Access to health care for tens of millions of people has been on the line more than fifty times during my tenure at MomsRising alone. But together with other organizations and the over 1 million members of MomsRising, we’ve held the line every time. That line is strengthened with each of us sharing our personal stories so leaders can better understand the true impact of the proposed policies on their desks. When thousands of women across the nation share their stories and experiences with elected leaders, it all adds up to a big impact.
Our personal stories hold more power than any pinstriped suited corporate lobbyist will ever hold. On March 23, 2012, Felicia and her son Ethan shared their story. At meeting after meeting, Felicia straightened her back, centered herself, and shared what happened in her life in 2006. Ethan was born with a serious medical condition and needed to start chemotherapy at six weeks old to treat a life-threatening tumor. Round-the-clock care was essential, so Felicia had to quit work to care for him, which meant she also lost her employer-sponsored health insurance and her income.
Ethan qualified for Medicaid, which saved his life.
But the trouble wasn’t over. Once Ethan was in remission and Felicia started to get back on her feet financially, she found out that she was uninsurable.
Felicia was one medical issue away from poverty, living without health care coverage while caring for a young child with a serious medical condition. Not being able to afford to go to the doctor is an untenable situation. Everyone should have a chance to get better when they get sick. But too often before the ACA, people missed out on the basic care they needed to be well, to contribute to our society, to thrive.
After the ACA went into effect that changed for the better—not just for Felicia but also for tens of millions of moms, dads, children, and single people too. Felicia’s family, like many others, was finally able to buy affordable health insurance coverage on the ACA marketplace, and she was able to buy it despite her preexisting condition. The ACA includes consumer protections so insurance companies can no longer discriminate based on preexisting conditions or put lifetime limits on care.
And while Felicia has since gained employer-sponsored coverage, her family still benefits immensely from the peace of mind knowing that the preexisting conditions she has—and the one that Ethan was born with—cannot prevent them from getting health insurance in the future.
For now. Repeal of the ACA would be devastating to Felicia, to her family, and to tens of millions of other families. In total, more than 20 million people gained health insurance since ACA’s implementation, and 11 million people gained access to Medicaid, which was expanded in thirty-one states and the District of Columbia.
The ACA is vital. It includes consumer protections like young people being able to remain on their parents’ insurance plan until they reach twenty-six years old. Other protections include that insurers can’t deny coverage, charge higher premiums, or refuse to cover care related to those preexisting health conditions. Insurers are also prohibited from imposing lifetime or annual dollar limits on coverage.2 The ACA also expanded mental health and addiction coverage, including preventative services like depression screenings for adults and behavioral assessments for children, at no additional cost.3
But that’s not all. The ACA significantly transformed access to reproductive health care and women’s health care in general. The law forced insurers to cover maternity care and contraceptives. It prohibited insurance companies from charging women extra for gender-specific services and allowed many women to get contraceptives (as well as a variety of preventive services, like Pap smears and mammograms) at zero cost.4
Overwhelmingly, the ACA has benefited millions of women, saving dollars and lives. Because of that, it’s hard to believe that there are still human beings who don’t believe that every human being should have access to health care—and that some of these people are elected leaders. Frankly, it boggles my mind.
The fight over health care in recent years is a reality check on where we are now and where we need to be. In terms of health care, as we look ahead in this area, it’s absolutely clear where we need to be as women: marching toward quality health care and comprehensive coverage, including access to reproductive, mental, and dental care coverage. The ACA is far from perfect, but it’s a giant leap forward. As things stand now, the United States is the only industrialized nation in the world that doesn’t guarantee health care for all.5 So we still have some catching up to do.
There is urgency in our need to do that catching up. Lives are literally on the line. Access to health care is a human right, and that access should never be turned into a political football as too often happens in our nation. Needing health care is ingrained in our common humanity because everyone gets sick. It isn’t a weakness. It can, however, be a lifesaver, a money saver, and a way to strengthen our families and economy.
Being Alive Is a Preexisting Condition
I’ve needed health care. My daughter and son both struggled with health issues when they were young. Thankfully both are now healthy today because they had access to health care professionals. This is no small matter.
I’m sure you’ve needed health care, too. Everyone gets sick, ends up in the ER with an injury, or experiences a condition that requires medicine. That’s life. Being alive pretty much is a preexisting condition for needing health care at some point or another. And the fact that even with the ACA in place, 11.3 percent of the U.S. population is still in need of health care coverage is a big deal.6 We still have work to do.
Living without insurance makes life harder. George told me, “I grew up without insurance. Every time one of us was sick was a time of great worry, not just for our recovery but for the eternal question, ‘How are we going to pay for the doctor?’ My parents had to max out their credit cards, bills were paid late, and sometimes we had to make trips to the pawn shop.”
Lack of access to health care is an area where it’s easy to see the compounded impact of income and racial inequality. Twenty-one percent of Hispanic people were uninsured in 2015 (down from 26 percent in 2013), 17 percent of American Indian or Alaska Native people (down from 25 percent in 2013), while 12 percent of Black people (down from 17 percent in 2013), 8 percent of white people (down from 12 percent in 2013), and 7 percent of Asian people (down from 13 percent in 2013).7
In addition to income and racial inequality in health care access, there are also compounding impacts in the LGBTQ+ community. The uninsured rate for LGBTQ+ people was 11 percent in 2015 (down from 22 percent in 2013).8
There’s good news and bad news in these numbers. The good news: If you look closely at the numbers, the rate of people in every group who are uninsured fell fairly significantly between 2013 and 2015. That’s the ACA, which passed in 2010 under President Obama, at work. That’s lives saved.
The bad news: There’s still inequitable access to health care in our nation. Here again inequality costs lives. It’s at this point that I want to shout from the rooftops that health care is a right, not a privilege—and those who are denied that right too often pay with their lives.
Death rates are another window into the impact of compounded inequalities. Life expectancy data from the Centers for Disease Control and the Kaiser Family Foundation show that Black people have the lowest life expectancy in our nation, 76 years, followed by a life expectancy of 76.9 among Native Americans and 79 years for white people. Hispanic people have the highest life expectancy in our nation, 82 years.9
Yes, you read that right. And, no, that isn’t a typo. Hispanic people as a group have the lowest access to health insurance coverage, but the highest life expectancy. The CDC report that was released along with this data shares that there are several possible reasons for this: “People who migrate, particularly immigrants, are often very healthy; people who weren’t born in the U.S. but live here often go to their place of birth when seriously ill; and, importantly, the family structure, lifestyle, behaviors and social networks in the Hispanic community may counter the negative effects of a lower socioeconomic status and minority status.”10
Racism in Our Health Care System Must Be Addressed
Our nation’s enduring legacy of systematic racism against Black people in particular has deep roots in virtually every sector of society—including health and life expectancy. And the fact is that most of these health disparities are rooted in health problems that are easily preventable and treatable, like diabetes and heart disease, the latter of which is not only the leading cause of death in the United States but also is a leading contributor to racial disparities in life expectancy.11 As of 2014, death rate among Black people was 1.2 times higher than among white people. Though the death rate among white people has recently gone up and made news, the overall death rates in the Black community still remain 17 percent higher than those of whites.12 These disparities in health and life expectancy aren’t a coincidence: A study from as recent as 2016 showed that a shocking number of medical professionals polled hold wildly racist views about their Black patients, such as the false beliefs that Black people feel less pain than whites and that their blood coagulates faster—resulting in lack of proper treatment and care.13 This is ridiculous, harmful, and wrong.
It’s time to make sure that our health policies and practitioners are lifting every person in every community.
Medicaid Is a Lifesaver for Many Women and Children
We need to double down to move access to health care forward, not backward. Health care access must be expanded, not restricted. But don’t worry—there is hope. We have a superpowered health care policy that hardly ever gets the spotlight, makes the news, or ends up in late night comedy sketch in our toolbox: Medicaid. And it’s constantly at risk of being defunded. As of the writing of this book, 39 percent of all children in the United States receive health care coverage through Medicaid. Remember Ethan, Felicia’s son, from the beginning of the chapter? He qualified for Medicaid and had his life-threatening tumor treated as a result. In some states the number of children who would have no health care coverage were it not for Medicaid is extremely high. In Maine, it’s 47 percent of all children; in Arkansas, 47 percent; and in Arizona, 46 percent. And in our nation’s capital, where Congressional leaders regularly play political football with health care, a full 49 percent of all children living in Washington, DC, receive life-saving health care only because of Medicaid.14
Stephanie’s daughter was born with schizencephaly, cerebral palsy, and epilepsy. She is legally blind, is nonverbal, uses a wheelchair, and has a feeding tube. Her medications, feeding supplies, and medical equipment and supplies cost thousands of dollars every month. Her feeding supplies alone cost almost $2,000, of which private insurance only covers a small portion. If Stephanie’s daughter loses coverage and Medicaid is cut, she will die.
In total over 70 million people are covered by Medicaid, including 10 million people with disabilities.15 Medicaid is lifting up families, empowering them to be able to work while caring for children with disabilities or elderly parents, allowing people who were priced out of access to health care to finally get the medical treatment they need to keep them healthy and productive, and boosting our bottom line as a nation. Medicaid is critical for women and families and to our economy.
Medicaid also plays a crucial role in helping ensure our nation’s aging population receives the care and dignity that they deserve later in life, covering over 70 percent of nursing home patients.16 Marilyn shared, “I do not know what my family would have done without Medicaid when my mother was institutionalized with Alzheimer’s disease. We private-paid for three years, and when she was broke, having spent everything she worked a lifetime for to sit wasting away in a nursing home, Medicaid picked up the tab for the last five years. What on earth would have happened to her without that support?”
Medicaid also covers nearly half of all births in the United States, making sure new moms and their babies get the care that they need.17 Kelley told me, “Without Medicaid, I wouldn’t have been able to afford the birth of my daughter, or her health issues early in life. As someone who has always struggled with poverty, as well as everyone I know being impoverished, we rely on Medicaid for the most basic of medical care. Being unable to treat a simple infection or get a checkup for your child is something no one should deal with, especially in America.”
The impact of cutting Medicaid would be particularly severe for families, women of color, people with disabilities, and women who live in rural areas. In fact, Medicaid has long played an even larger role in providing health coverage and paying for care in rural areas than in urban areas. Nearly 1.7 million rural Americans have newly gained coverage through the Medicaid expansion, many of them women. According to the Center on Budget and Policy Priorities, “in [Medicaid] expansion states overall, rural residents make up a larger share of expansion enrollees than they do of these states’ combined population. The Medicaid expansion has also become a critical financial lifeline sustaining rural hospitals.”18
There’s a key point that needs to be made about how ACA has benefited people living in rural parts of our country and what has been happening in politics. In at least eight of the states in which Medicaid expanded under the ACA, more than one-third of the people who benefited from that expansion live in rural areas. Yet six of these states awarded their electoral votes to Donald Trump. In fact, almost twice as many rural voters supported Trump (62 percent) compared to Hillary Clinton (34 percent). It’s now clear that many people voted against their own interests when it comes to health care.
We saw the impact of this in 2017, when many of the people who originally voted for Trump because they wanted to “kill Obamacare” later learned more about the ACA policy, thankfully did a 180-degree change on their stance, and rose up against the health care repeal efforts. Ultimately the majority of people in all fifty states opposed the main repeal bill for the ACA in 2017, even in states that voted for Trump.19
Unfortunately, there’s often a tremendous amount of racism and sexism in how we think and talk about health care and government safety net programs like Medicaid, as a country and particularly among those who vote conservatively. The racist mythology about who uses government programs is contradicted by the facts: Among whites, 42 percent are covered by Medicaid—more than Hispanics (31 percent) and twice the rate of African Americans, only 19 percent of whom have Medicaid coverage.20
The Good News
It cannot be forgotten that the voices of women and moms are a major reason why our nation was able to get the health care access expansion and consumer protections under President Obama in the first place.
One of my favorite moments of political engagement was when, in 2009, hundreds of thousands of members of MomsRising across the country signed an open letter urging every member of Congress to pass the ACA, shared personal stories about needing health care for their families, and volunteers even decorated hundreds of clean baby diapers with flowers and colorful designs that had this central message: Our current health care system stinks. We need a change!
The decorated, clean, cheerful diapers were delivered to every member of Congress, along with the stories and signatures on the open letter, to show that women and families across the nation were closely following the health care debate. Our mission? To show members of Congress that even if their constituents couldn’t be there in Washington, DC, we were paying attention at home and had a strong opinion: It’s time to pass health care!
At MomsRising we work to find ways for women’s voices to be heard and seen in innovative and powerful ways. For instance, to advocate for health care, we’ve also delivered Apple-o-Grams (“An apple a day doesn’t actually keep the doctor away: We need health care”) and passed out superhero capes to senators, asking them to be “superheroes for our family’s health,” and much more.
This approach works for three reasons. First, the women who volunteer with MomsRising are busy and often don’t have time to advocate in person, so delivering a physical item that someone made is a way for them to “be there” without being there in person. Second, the media often love to cover campaigns like this, so we’re able to educate the public and leaders at the same time. And third, humor is a powerful and effective strategic tactic on its own. Studies of the brain using MRIs show that when people are in a partisan mindset—and many policies in our nation are still unfortunately locked in partisan mindsets—then it’s very hard to move someone out of that emotional nonlogical partisan thinking to a different perspective using logic. But one thing that can open up people’s minds to think in a new way is humor. So, seeing toddlers running down the halls of Congress in superhero costumes really lightens up the mood and allows us entry into offices that we might normally be turned away from and to get past the partisan barriers to have real conversation about solutions.
And our approach is working—as of the writing of this book, efforts to repeal the ACA simply haven’t worked. That’s because people, primarily women and moms, raised their voices, signed letters, shared their personal experiences with members of Congress, made hundreds of thousands of phone calls, and spoke up. Women, moms, people, have been going in to meet with their members of Congress in their local districts and in Washington, DC. I’ve been there, too. Many times over. It’s a beautiful thing to see—democracy in action.
One particularly powerful moment in that fight, led primarily by women like Anita Cameron, Stephanie Woodward, and Colleen Flanagan, was the summer of ADAPT in 2017. Hundreds of people with different types of disabilities put their health on the line to save health care by protesting in the halls of Congress. Rebecca Cokley, senior fellow for disability policy at the Center for American Progress, recalls: “While the media portrayed them as vulnerable victims of police brutality, anyone who knows ADAPT knows that this is the very kind of civil disobedience they’ve trained for.… Their actions were powerful, in the risk to their own health, in their intent to gather media attention to their cause, and their ability to reframe the debate.”
Watching how people are empowered when they work on health care policy has been beyond inspiring. Just being a part of the effort to save, protect, and expand health care coverage has had a transformative impact on more women than I can count—finding, using, and raising their voices, and then using that newfound power to bring forward the voices of other women.
Donna Norton, executive deputy director of MomsRising, who leads our health care campaigns, said, “It’s amazing to see how many of us have come forward and found our voices and then come through to speak with leaders when it comes to lifting up families’ health care needs.”
We need to continue to fulfill that role every time there is pressure to roll back health care coverage and other policies that lift women, families, and our economy.
We can’t let up.
We’re going to have to win on health care again and again until everyone in our nation has access to health care and access is no longer under threat. I’m in for that. I hope you are, too.
