A society is judged by the way it treats its children—and history will judge us harshly for this. Most Americans know that already. Most Americans are appalled and ashamed. We are better than this. And we must make right the wrongs that this administration has committed in our name.
Seven
EVERY BODY
How are you adjusting?” I asked.
“So far so good,” Maya replied. “But we haven’t had a winter yet.”
It was 2008, and Maya was visiting from New York, where she had recently taken a job as vice president of democracy, rights, and justice at the Ford Foundation. We had lived in different cities before, but for many years our homes were never more than a short car ride away from each other. Now she was almost three thousand miles away. I was adjusting, too.
We were in a restaurant, waiting for our mother, who had asked us to meet her for lunch. All three of us were excited to be back in the same city, even for a brief time. We’d come a long way from the Berkeley flatlands, but we were still Shyamala and the girls.
“The foundation is doing amazing things,” she said. “And I’m going to be—”
Maya stopped talking midsentence. She was looking over my shoulder. I turned around. Our mother had just walked in. Mommy—the least vain person I knew—looked like she was ready for a photo shoot. She was dressed in bright silk, clearly wearing makeup (which she never did), her hair professionally blown out. My sister and I exchanged a glance.
“What’s going on?” I mouthed to Maya as our mother approached our table. She raised an eyebrow and shrugged. She was just as confused as I was.
We hugged and greeted one another, and our mother sat down. A waiter brought us a basket of bread. We reviewed our menus and ordered our food, making lighthearted conversation.
And then my mother took a deep breath and reached out to us both across the table.
“I’ve been diagnosed with colon cancer,” she said.
Cancer. My mother. Please, no.
I know that many of you can relate to the emotions I felt in that moment. Even just reflecting back on it now, it fills me with anxiety and dread. It was one of the worst days of my life.
And the hard truth of life is that every one of us will go through an experience like this sooner or later, whether it is coming to terms with a loved one’s mortal illness or experiencing our own. As my mother herself understood so well from a lifetime of looking at cancer cells under the microscope, no matter who we are or where we are from, our bodies are essentially the same. They work the same way—and they break down the same way, too. No one gets a pass. At some point, nearly all of us will face a prognosis that requires profound interaction with the health care system.
So much comes with this realization: pain, worry, depression, fear. And it is all made worse by the fact that America’s health care system is broken. The United States spends more on health care than any other advanced economy, but we don’t see better outcomes in exchange. Incredibly, in many parts of the country, life expectancy is actually shrinking, and when it comes to maternal mortality, the United States is one of only thirteen countries where rates have gotten worse over the past twenty-five years. Meanwhile, working families are overwhelmed by medical bills, which are one of America’s leading causes of personal bankruptcy.
I want to be clear that I have tremendous respect for the women and men in the medical profession. For so many of them, the call to medicine stems from a deep desire to help others—from helping a baby come into the world to extending the time that person has on earth. But in our nation’s approach to health care, we’ve created a bizarre dichotomy: we are simultaneously home to the most sophisticated medical institutions in the world and to structural dysfunction that deprives millions of Americans of equal access to health care, a basic human right.
Unlike many other wealthy nations, the United States does not provide universal health care for our citizens. Instead, Americans need some form of private health insurance to cover the costs of their care, unless they are senior citizens, severely disabled, or lower income, making them eligible for Medicare or Medicaid. Generally speaking, private insurance is employer based, and the breadth and depth of coverage varies, as does the portion of the insurance premium that the employee is expected to pay. For years, those premiums have been going up—and doing so much faster than wages. A system where access to health care depends on how much you make has created enormous disparities. A 2016 study found a ten-year gap in life expectancy in America between the most affluent women and the poorest. That means that being poor reduces your life expectancy more than a lifetime of smoking cigarettes.
The Affordable Care Act (ACA), aka Obamacare, went a long way toward making health insurance more accessible and affordable, offering tax credits to those who can’t cover their premiums and expanding Medicaid to cover millions of people. But after it passed, Republican leaders made it an intense partisan issue and worked to sabotage, strip, and subvert it; indeed, the Senate leader openly declared that it should be repealed “root and branch.” Their arguments ranged from comparing the Affordable Care Act to colonial taxation by King George III to suggesting that the president might somehow, someday decree that the government would pay for only one baby to be born in a hospital per family. But for all their posturing and falsehoods, the GOP hadn’t bothered to devise a serious alternative. They were playing politics with people’s lives—and they still are.
There have been more than a hundred lawsuits challenging the ACA since its passage. Republican governors blocked seventeen states from expanding Medicaid, leaving millions in places like Florida, Texas, Missouri, and Maine without affordable coverage. In numerous states, Republican lawmakers have passed laws restricting the ability of health care officials to help people enroll in insurance plans, despite a law that provides funding for that explicit purpose.
In 2017, the first executive order from the new administration ordered federal agencies to “exercise all authority and discretion available to them to waive, defer, grant exemptions from, or delay the implementation of any provision or requirement of the [Affordable Care] Act that would impose a fiscal burden.” The administration halted ACA cost-sharing payments that would have provided more affordable health insurance for middle-class families and individuals and even canceled an advertising campaign to alert people about the 2017 open enrollment period, going so far as to pull ads that were already fully paid for. The result of these efforts has been deep uncertainty and instability in the insurance markets, which has resulted in soaring premiums, forcing people all over the country to give up their health insurance altogether.
And this was on top of the efforts of congressional Republicans to fully repeal the ACA—more than fifty times. In July 2017, their push to end Obamacare was thwarted by just three votes—but they will surely try again. Repealing the ACA would result in tens of millions of people losing their health insurance. It would allow insurance companies to reinstate lifetime limits, driving countless Americans into bankruptcy, and permit insurance companies to once again deny coverage based on preexisting conditions, from asthma to high blood pressure, diabetes to cancer. We all remember what that was like. We know we can’t go back.
In early 2011, just after I was elected attorney general of California, I went in to see my dentist for a checkup. The dental hygienist, Chrystal, and I knew each other from past visits, and it had been awhile since I’d seen her. Chrystal asked me how I’d been. I told her I’d been elected. I asked her how she’d been. She told me she was pregnant. It was great news.
As a dental hygienist, she was working for a few different dentists but wasn’t considered a full-time employee of any of them. This was before the ACA was in place, so Chrystal was on private insurance with only basic coverage—just enough to cover her annual exams. When Chrystal found out she was pregnant, she went to her insurance company to apply for prenatal coverage.
But she was denied. They told her she had a preexisting condition.
I was alarmed. “You okay? What’s wrong?” I asked. “What’s the preexisting condition?” And she told me it was that she was pregnant. That was why the insurer had turned her down. When she applied to another health care company for insurance, again she was denied. Why? Preexisting condition. What was it? She was pregnant. I couldn’t believe what I was hearing.
This young woman was forced to go into her sixth month of pregnancy before she received a sonogram. Thankfully, there was a free clinic in San Francisco where she could get her prenatal care. Thank God Chrystal had a strong and beautiful baby named Jaxxen and they’re both doing well today.
But think about that for a minute. This is the world we could return to if they abolish the ACA: women denied health care coverage for perpetuating the species. Let’s remember the words of Mark Twain: “What, sir, would the people of the earth be without women? They would be scarce, sir, almighty scarce.”
The Affordable Care Act provided a lot of relief. But there are still structural realities that make health care too costly for working families. As anyone who’s been to the doctor knows, in addition to premiums, there are also deductibles and co-payments for prescription drugs and health care services to worry about, which could end up costing thousands of dollars out of pocket.
Compared with people in other wealthy countries, Americans face extraordinarily high prescription drug prices. In 2016, for example, the same dose of Crestor, a medication that treats high cholesterol, cost 62 percent more in the United States than just across the border in Canada. This disparity exists with drug after drug. Fifty-eight percent of Americans take prescription drugs; one in four take four or more; and among those currently taking prescription drugs, one in four find their medications difficult to afford.
Why are Americans paying so much more for the medicines we need? Because, unlike many other advanced countries, the U.S. government doesn’t negotiate prices on prescription drugs. When a government is purchasing medicines in bulk, it can negotiate a better price and pass those cost savings to consumers—much like the cost savings you enjoy at a wholesale grocery like Costco. But the current U.S. health care system doesn’t allow for such deal making.
Medicare, which covers about fifty-five million people, could have incredible bargaining power to drive significantly lower prescription prices through negotiation. But lawmakers from both parties, at the behest of the pharmaceutical lobby, have prohibited Medicare from doing so. Individual health insurance plans are allowed to negotiate, but with their relatively small numbers of enrollees, they have little leverage to make a dent in prices.
The alternative to negotiating lower prices ourselves is to import cheaper drugs from countries that do. Imagine, for example, that you need Crestor. What if you could buy it from Canada at a significant discount? One of my very first votes in Congress would have enabled just that by allowing Americans to purchase drugs from our northern neighbor. The amendment I voted for earned significant bipartisan support, but the powerful pharmaceutical lobby helped kill it in its tracks.
Pharmaceutical companies have wielded influence over Congress for years, and their power is intensifying. A report by Citizens for Responsibility and Ethics in Washington (CREW) found 153 companies and organizations lobbying in the area of drug pricing in 2017, a number that had quadrupled over the previous five years. In 2016, fearing that Congress might actually do something to get drug prices under control, PhRMA, the trade association that represents the largest drugmakers, increased its membership dues by 50 percent so it could raise $100 million more with which to fight. It should come as no surprise that over the past decade, pharmaceutical companies have spent about $2.5 billion on lobbying. Imagine the new drug trials they could have funded instead.
These efforts have also helped prop up a system by which pharmaceutical companies can quash competition from generic brands, preventing more affordable versions of a medication from reaching the market for years. And in the meantime, they continue to raise prices without any compunction.
Take pharmaceutical manufacturer Mylan. Mylan raised the price of the EpiPen—a lifesaving treatment for anaphylactic shock—by nearly 500 percent over seven years. Between October 2013 and April 2014, the company increased the price of Pravastatin, a statin that helps reduce cholesterol and prevent heart disease, by 573 percent. During that same period, Mylan jacked the price of Albuterol, a common treatment for asthma, from $11 to $434. You don’t need to be a prosecutor to see something wrong with a 4,000 percent price hike.
Prescription medicines are not luxury goods. Quite the opposite. We don’t want to need them! No one aspires to be allergic to peanuts, or to suffer from heart disease or asthma. I’ll always remember the terror I felt when Meena had a childhood asthma attack so bad that Maya had to call 911. It’s heartless and wrong for companies to make a fortune by exploiting the fact that their customers literally cannot live without their products.
At the same time that pharmaceutical companies are dramatically raising their prices, they are also cutting down on the amount they spend on research and development of new drug treatments. In January 2018, for example, Pfizer announced that it would no longer participate in neuroscience research, meaning an end to its work on Alzheimer’s disease and Parkinson’s disease, which together affect tens of millions of people around the world.
Too many of our fellow Americans are getting crushed under the weight of high drug prices—having to choose between taking the medications they need and buying other essentials like food. And that’s not to mention the financial peril they face if they go to the emergency room.
Over the course of six months, Vox investigated more than 1,400 emergency room bills and found a series of troubling anecdotes about patients blindsided by outrageous fees. In one example, parents brought their baby to the ER after he fell and hit his head. There wasn’t any blood, but the parents were worried, so they had an ambulance take him to the hospital. The doctors determined that the baby was fine. He was given a bottle of formula and discharged less than four hours after he’d arrived. When the bill came, the parents found out they owed the hospital nearly $19,000. In another case, a woman broke her ankle and had emergency surgery. Despite the fact that she had medical coverage, her insurance company decided that the hospital had charged too much money. Instead of paying in full, they passed $31,250 in fees on to her. In still another case, a patient in a motorcycle accident actually confirmed on the phone, before going into surgery, that the hospital he’d been taken to was in his insurance company’s network. But the surgeon who operated on him wasn’t. As a result, he was expected to pay $7,294.
And what if you are one of the more than forty-three million Americans who require mental health care at some point during the year? Even if you have insurance, it is extremely difficult to find mental health care providers who will take it. Almost half of psychiatrists don’t take insurance. On the whole, mental health care providers have no incentive to sign a contract to join an insurance company’s network because they are reimbursed at such low rates. As a result, if you need mental health treatment, you are likely to have to go out of network. And because continuous care is incredibly expensive, people tend to forgo it altogether. Depression is increasing in the United States, especially among young people. But more and more, it’s only people who can pay out of pocket who can access the care they need.
The problem with mental health care isn’t just cost. It’s also a general lack of qualified providers. According to the Department of Health and Human Services, the United States will need to add 10,000 mental health care providers by 2025 just to meet the expected demand. And when you focus on the problem on a regional level, the challenge is even greater. Alabama has only 1 mental health professional for every 1,260 people; Texas, just 1 per every 1,070 people; West Virginia, 1 per every 950 people. A report from New American Economy found that ro
ughly 60 percent of America’s counties lack a single psychiatrist. In rural counties, home to 27 million people, there are only 590 psychiatrists—that’s 1 for every 45,762 people.
Even in Maine, the state with the best access to mental health care, 41.4 percent of adults with mental illness do not receive treatment. Think about that for a minute. Imagine if, in your hometown, four out of every ten broken legs went unaddressed, four out of every ten infections went untreated, four out of every ten heart attacks were ignored. We would say, “That’s unacceptable!”—and rightly so. It’s just as unacceptable that mental illness goes unaddressed, untreated, and ignored.
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• • •
My mother’s cancer treatment acquired a grim kind of routine. During the day, I would take her to the hospital for chemotherapy. We’d see many of the same people every time—men and women of all different ages, hooked up to a machine that was infusing their bodies with the toxic drugs they hoped would save their lives. It took on a strange familiarity, an abnormal sense of normalcy. If I had to, I’d drop her off and pick her up when chemo was done, but I preferred to wait and keep her company, and she preferred it, too.
Sometimes the chemo would steal her appetite. Other times she was hungry, and I would get her buttery croissants that she loved from a bakery nearby. More than once, she had to be admitted to the hospital with complications, and I remember a lot of hard days and nights under those fluorescent lights. When my mother was asleep, I would walk down the long corridors, glancing into the rooms as I passed. Sometimes people would look up. Sometimes they wouldn’t. And all too often, they were lying there alone. I left that experience convinced that no one should have to face a hospital stay without support—and that many do.
The Truths We Hold Page 18