LOBBYIST DOCUMENTS REVEAL HEALTH CARE INDUSTRY BATTLE PLAN AGAINST “MEDICARE FOR ALL”
by Lee Fang and Nick Surgey - The Intercept - November 20, 2018
Now that the midterms are finally over, the battle against “Medicare for All” that has been quietly waged throughout the year is poised to take center stage.
Internal strategy documents obtained by The Intercept and Documented reveal the strategy that private health care interests plan to use to influence Democratic Party messaging and stymie the momentum toward achieving universal health care coverage.
At least 48 incoming freshman lawmakers campaigned on enacting “Medicare for All” or similar efforts to expand access to Medicare. And over the last year, 123 incumbent House Democrats co-sponsored “Medicare for All” legislation — double the number who supported the same bill during the previous legislative session.
The growing popularity of “Medicare for All” in the House has made progressives optimistic that the Democratic Party will embrace ideas to expand government coverage options with minimal out-of-pocket costs for patients going into the 2020 election. But industry groups have watched the development with growing concern.
Over the summer, leading pharmaceutical, insurance, and hospital lobbyists formed the Partnership for America’s Health Care Future, an ad hoc alliance of private health interests, to curb support for expanding Medicare.
The campaign, according to one planning document, is designed to “change the conversation around Medicare for All,” then “minimize the potential for this option in health care from becoming part of a national political party’s platform in 2020.”
A slide from Partnership for America’s Health Care Future presentation.
Behind the scenes, the group attempted to sway candidates during the midterms, encouraging several of them to focus on shoring up the Affordable Care Act instead of supporting single-payer health care.
The documents show that Partnership representatives spoke to the staffs of Democratic Sens. Bill Nelson of Florida and Joe Donnelly of Indiana, and received confirmation that both senators would maintain their “moderate position.” When the team met with Rep.-elect Lori Trahan, D-Mass., she said that although she does not speak about the issue, she agreed that “language around single payer should be tempered.” (None of the three politicians’ offices provided responses to inquiries from The Intercept.)
In several competitive races, the Partnership pressed candidates to use industry-crafted talking points when speaking about health care. In one internal planning document circulated with health care lobbyists, the Partnership touted its influence over Danny O’Connor, the Columbus, Ohio-area Democrat who ran for the 12th Congressional District, claiming that O’Connor used Partnership talking points “in national news interviews.” (O’Connor’s campaign did not respond to a request for comment.)
Several of the candidates who agreed to embrace the Partnership’s messaging and policy ideas, including Donnelly and O’Connor, came up short on Election Day. A recount ending on November 18 confirmed that Nelson received fewer votes than Republican challenger Rick Scott. But soon after Election Day results came in, the Partnership went on the offensive, informing reporters that candidates who embraced “Medicare for All” had also lost, pointing to the defeat of progressives such as Kara Eastman in Nebraska. The group also relied on research from the business-friendly Democratic think tank Third Way to argue that victorious pro-“Medicare for All” candidates couldn’t attribute their success to having supported “Medicare for All” because few Democrats explicitly mentioned the policy in their campaign advertisements.
“’Medicare for All’ didn’t win,” said Joel Kopperud, the vice president of government affairs at the Council of Insurance Agents and Brokers, one of the industry groups backing the Partnership. “I don’t think that the Bernie Sanders $32 trillion solution that’s going to eviscerate the insurance for 156 million Americans is really something that’s going to be helpful to the party in critical states,” he added in an interview with The Intercept.
Kopperud represents insurance brokers who sell employer-based health insurance coverage. He noted that his organization has a vested interest in backing the Partnership. “Medicare for All,” as some envision the policy, would eventually eliminate the need for most health insurance plans — a death knell for companies represented by the CIAB.
Private health care lobbyists are confident that they can prevent any federal expansion of Medicare in Congress, given Republican control of the Senate and the White House. In the states, CIAB and other private health groups have easily defeated measures to develop single-payer proposals, such as the ColoradoCare ballot question in 2016.
But the political calculus could be changing. Recent election gains by Democrats in state government could create new opportunities for proponents of expanded government-backed health care initiatives. Gov.-elect Gavin Newsom of California campaigned on single payer and is expected to have one of the largest Democratic supermajorities in recent memory in the legislature, though California has a notoriously complex state constitution that would likely require an amendment before any significant government plan could be created.
The growing momentum for “Medicare for All” could raise expectations for the next time Democrats are in full control of power in Washington, industry groups worry. They are already pressuring conservative-leaning caucuses in the House of Representatives, such as the Blue Dogs and New Democrats Coalition, to push back against insurgent progressives’ demands.
A slide from Partnership for America’s Health Care Future presentation.
Reframing the Debate
For industry opponents of expanded government health insurance, there are two main challenges. One is combatting growing public support for the idea. The other is shaping elite opinion within the Beltway.
Over the last two years, several opinion surveys show rising support for expanding Medicare. In March, the Kaiser Health Tracking Poll found that 59 percent of Americans support the idea, and by August, a poll conducted by Reuters-Ipsos found an astounding 70 percent of Americans support “Medicare for All,” including a majority of self-identified Republicans.
But the Partnership is quick to zero in on research that shows support for the idea drops precipitously when respondents are told that the plan would require ending employer-based coverage, tax increases, and increased government control.
The campaign has worked with advertising agencies to draw up a series of messages to convince select audiences. Several of the messages, categorized as “positive,” are dedicated to educating the public on more minimal reforms that do not include expanding Medicare. Other messages, categorized as “persuasion” and “aggressive,” are designed to instill fear about what could happen if “Medicare for All” passes.
In the coming weeks, the Partnership plans to ramp up a campaign designed to derail support for “Medicare for All.” The group, working with leading Democratic political consultants, will place issue advertisements to target audiences, partner with Beltway think tanks to release studies to raise concerns with the plan, and work to shape the public discourse through targeted advocacy in key congressional districts.
The Partnership has tapped consulting firms with deep ties to Democratic officials. Forbes-Tate, a lobbying firm founded by former officials in President Bill Clinton’s administration and conservative Democrats in Congress, is managing part of the Partnership coalition. Blue Engine Message & Media, a firm founded by former campaign aides to President Barack Obama, has handled the Partnership’s interactions with the media.
In one planning document circulated over the summer, the Partnership suggested a series of messages to wean Americans away from supporting single payer. The talking points emphasize that the current system provides “world-class care,” and that any move away from the Affordable Care Act would be “ripping apart our current system.”
The strategy exploits familiar themes that have long been used by business groups against new government health care programs, calling for allies to say lines such as “bureaucrats in DC have no understanding of a person’s medical situation and will be making decisions about your health care instead of doctors.”
The Partnership plans to form a speakers bureau of former Democratic elected officials who can leverage the media to make the case that expanding Medicare is bad politics and policy. The memo names former Democratic Majority Leader Tom Daschle, now a health insurance lobbyist at the law firm Baker Donelson, as one such potential surrogate.
The memo points to early success in shaping media coverage, citing several “earned media” columns such as one published in August by former Rep. Jill Long Thompson, D-Ind., which argues that Democrats should only focus on small reforms to the Affordable Care Act, and warns against wasting political capital on pursuing a “government-controlled health insurance system.” Thompson, now an associate professor at Indiana University Bloomington, did not respond to a request for comment.
Adam Gaffney, president-elect of Physicians for a National Health Program, a national coalition that advocates in favor of “Medicare for All,” said he is not surprised by the messaging.
“What we’re seeing is the wages of success: With single payer on the rise, it was only a matter of time before the insurance companies, big pharma, and other big-money groups came out swinging,” said Gaffney, who also serves as an instructor at Harvard Medical School.
“The smear of ‘socialized medicine’ has been used a thousand times and has lost its bite,” he added.
A slide from Partnership for America’s Health Care Future presentation.
Influencing the 2020 Democratic Field
“We’re all focused on 2020,” Lauren Crawford Shaver, a partner at Forbes-Tate who is helping to manage the Partnership campaign, recently told the National Association of Health Underwriters in a podcast produced by the group.
Shaver, a former top staffer for the Hillary Clinton presidential campaign, explained to the group that she is working to peel support away from the “Medicare for All” bill sponsored by Sen. Bernie Sanders, I-Vt. The Sanders bill is currently sponsored by several rumored 2020 Democratic presidential candidates, including Sens. Elizabeth Warren, D-Mass.; Kamala Harris, D-Calif.; and Kirsten Gillibrand, D-N.Y.
“The No. 1 thing we need to focus on is that there are a lot of likely candidates that currently support the Senate bill,” said Shaver. “We need to make sure we educate the public, we educate both parties, and we educate all the campaigns about both the policy and political challenges.”
Shaver encouraged health care companies concerned about the growing popularity of “Medicare for All” to mobilize opposition among clients, customers, and employees. Industry groups will likely have workers or customers residing in key districts who can be tapped to influence wavering lawmakers on Capitol Hill.
The Partnership plans to “take stories of how these proposals would directly impact your clients and the constituents of the policymakers who are voting for or against these proposals,” Shaver said.
The Partnership strategy echoes the health insurance industry’s campaign to shape the 2008 presidential primary. At that time, the health insurance lobby group known as America’s Health Insurance Plans, or AHIP, tapped the consulting firm APCO to develop an effort to label any government-run insurance option as an existential threat to Democratic political goals. The initiative emerged from a plan to minimize the impact of Michael Moore’s documentary “Sicko,” which was deeply critical of the American health care system.
The campaign involved planting studies with think tanks, mobilizing pundits on television, and sponsoring YouTube videos on “the horrors of government-run systems,” among other publicity tactics. The APCO-crafted blitz leaned on right-wing voices such as Fox News pundit John Stossel, conservative think tanks like the American Enterprise Institute, and centrist Democratic groups such as the Democratic Leadership Council, a now-defunct group associated with the Third Way. The 2008 campaign adopted a two-pronged strategy: position private health insurance as the only positive solution to America’s health care woes and “disqualify government-run health care as a politically viable solution.”
Now, the same lobby groups are involved in a similar effort. AHIP, the insurance trade group behind the 2008 plan, is also a sponsor of the Partnership’s 2020 campaign, along with the Federation of American Hospitals, Pharmaceutical Research and Manufacturers of America, the Blue Cross Blue Shield Association, the Biotechnology Innovation Organization, and the American Medical Association.
The View From Here: Health costs headed for a crisis
by Greg Kesich - Portland Press Herald - November 18, 2018
When 'the lucky ones' pay more each year for insurance that covers less, something's got to give.
So, I guess I’m supposed to have a crystal ball now. That’s what the health insurance rep told us last week at one of the company’s annual open enrollment meetings.
The trick to picking the right health insurance plan, he explained, is to start by looking at the premium to see what fits in your budget. But before signing up for the one with the lowest sticker price, you’re supposed to “take out your crystal ball” to determine how much health care you and your family might need in the coming year.
That way, you’ll know if you can save a little money with the high-deductible/low-premium plan, or shell out for richer coverage with a more expensive policy.
Here we go again. Another year, another health insurance information session, another season of frustration.
NOT A CLAIRVOYANT
I don’t blame the insurance rep – he didn’t design a system that requires me to be clairvoyant. But I shouldn’t have to be. And I don’t need a crystal ball to know there’s going to be more frustration in the year ahead as I find out what’s covered and what isn’t.
Every provider has a different price for every payer, and the difference between a no-cost test and a $1,000 bill is a little piece of code typed in by someone who probably can’t tell me how much I’ll have to pay.
I’m supposed to shop like a good consumer for services even though I don’t know how much they cost and, in many cases, I wouldn’t be in a position to walk away if I didn’t like the price.
I keep trying to tell myself that I’m one of the lucky ones because I have insurance through work.
When we debate health care policy, most of the focus is rightly on the people who don’t have coverage, like low-income people who don’t qualify for Medicaid, or self-employed people who can’t afford insurance because they make a little too much for an Obamacare subsidy.
I’m not one of the people who has to go to the emergency room for a toothache and gets painkillers, antibiotics and advice to see a dentist that I can’t afford. I don’t have to skip the tests my doctor orders or leave my prescriptions unfilled.
Like about half the people in the country, I have insurance through my employer, which means that I get left out of the discussion about health care reform because I’m supposed to be OK. But I would like to go on record to say that I am not OK, and I don’t think I’m the only one.
Health care costs are expected to grow by 5.5 percent next year, faster than the gross domestic product and twice as fast as wages. Workplace insurance coverage pays roughly $1.4 trillion of the nation’s annual $3.3 trillion health care bill.
The cost of private health insurance has tripled since 1990, also easily outpacing wages.
According to an annual study by the Kaiser Family Foundation, the full cost of the average individual plan in 2018 was $6,896, and $19,616 for a family. Most of that is paid by employers, but the average worker is responsible for about $1,100 a year for single coverage and $5,500 for a family plan.
Meanwhile, the amount that these people have to pay out of pocket before they can use their increasingly expensive insurance – the deductible – has also skyrocketed. Average deductibles have climbed 212 percent in the last decade, from just under $600 a year to more than $1,500. So, if you find that you are paying more of your stagnant wages for health insurance that doesn’t cover as much as it used to, you are not alone.
TIME FOR A CHANGE
These trends are what makes universal health care proposals like Medicare for All more politically palatable all the time.
Every other developed country manages to cover everyone at a lower cost with better results than we do in the United States. We waste billions on complexity that masquerades as choice. People say that government can’t be trusted to deliver health care, but I don’t hear a lot of seniors on Medicare pining for the days when they had private insurance.
Here’s my question for policymakers: Is what we’re doing now really the plan? Are we really expecting that most people will be able to pay more money every year for insurance that covers less, and requires them to blow through their savings when they get sick? And are we going to keep telling these people that since they have insurance they are “the lucky ones?”
Because I may not have a crystal ball, but I’m willing to predict that this plan isn’t going to work much longer.
Democrats, Don’t Procrastinate on America’s Health
by Harold Pollack - NYT - November 17, 2018
In nearly 800 days, a Democratic president and Congress may take office.
This is not as far away as it sounds. If Democrats want the chance to pass health reforms that will build on the Affordable Care Act and fix its defects, they need to start planning now.
The Democrats’ House victories in the midterms are an important step in that direction. Medicaid will expand in Idaho, Nebraska and Utah, thanks to ballot initiatives, and could expand in Kansas, Maine and Wisconsin, thanks to those states’ new Democratic governors-elect. Although Republicans picked up Senate seats, the 2020 and 2022 Senate maps still allow the possibility of a workable Democratic majority. Democrats must be ready. The process of writing the A.C.A. began years before it passed. Democratic legislators, activists and policy experts should be talking right now about how to build on it.
We already know a few things about what workable and worthy legislation will look like. First, it will be a straight Democratic bill. As Republicans did in 2017 on health care and taxes, Democrats will proceed unilaterally. Unlike Republicans, Democrats should put in the hard work to create a smart bill they actually intend to pass, one that commands broad public support.
Many Americans would prefer greater bipartisanship. So would I. But Democrats tried that, and look what happened. The A.C.A. was a good-faith effort to create a fiscally disciplined, ideologically moderate, market-based path to near-universal coverage. Max Baucus and other Democratic senators spent months fruitlessly negotiating with Republicans, who, it is obvious in retrospect, were cynically stalling. Republicans’ scorched-earth opposition to President Barack Obama and health care reform — not to mention the Trump presidency — have weakened the possibility that Democrats will do the same next time around.
The bill should go beyond simply fixing the A.C.A., though much certainly needs fixing. The insurance marketplaces are a godsend for 12 million people, particularly those with low incomes or chronic illnesses. Yet in many ways, the marketplaces proved disappointing. Middle-class families face high premiums and punishing out-of-pocket costs.
It wouldn’t be hard to change this. Similar structures work well in Western Europe. The Urban Institute’s Linda Blumberg and John Holahan have proposed an excellent and economical set of improvements, including providing more generous subsidies to middle-class families and to people with high out-of-pocket costs. If our political system worked properly, such fixes would already have been made. But Republicans in Washington see greater advantage in undermining and disparaging the marketplaces than in bolstering them.
Millions of Americans — many of whom don’t consider themselves particularly liberal — want more radical change. Republicans’ efforts to bring down the A.C.A. ended up solidifying the public consensus behind it, behind Medicaid and behind the idea that every American deserves affordable, effective health coverage. Among Republican voters, large majorities favor greater federal health care spending. As we saw in the midterms, Medicaid expansion is popular even in deep Trump country.
One thing we won’t see: a leap to a single-payer system. Many Democrats have embraced Medicare for All. I’m sympathetic to that. A single-payer health system would be more functional, more economical and fairer than what we have. America may someday have a single-payer system, but we won’t get there in a single bill that phases out private health insurance, rewires our byzantine health care delivery and finance systems and markedly cuts payments to hospitals and other providers.
Although a single-payer system would reduce overall health spending, it would require major tax increases as we moved private expenditures onto the federal tab. There is zero chance that any Congress taking office in 2021 would do all that — let alone that Democrats could do all that alone within the parliamentary confines of what would probably be a razor-thin party-line vote in the budget reconciliation process.
So what can Democrats do, when tweaking the Affordable Care Act is insufficient, and when leaping to Medicare for All is unrealistic?
Here’s one strong approach: Medicare Available to All. Three Senate bills introduced by Democrats would allow people to buy into Medicare or Medicaid, while maintaining a private insurance market. Millions of Americans want these public options, because they are fed up with private insurance. This is especially true in rural areas, and in uncompetitive markets with exorbitant marketplace plans.
Private experts propose other worthy plans. Paul Starr’s “Midlife Medicare” would expand the program to otherwise-uninsured Americans over age 50. Jacob Hacker’s “Medicare Part E” would be available to everyone, including within the menu of employer-sponsored coverage.
The Center for American Progress’s “Medicare Extra for All” provides another ambitious model, which would improve public and private coverage without requiring huge new federal tax revenues or smashing the private insurance system. Medicare Extra would be free to those with incomes below 150 percent of the federal poverty line. That’s about $31,000 for a family of three. In one stroke, this would insure millions of Americans who were shut out when their state rejected Medicaid expansion. Premiums and patient cost-sharing would gradually rise with income, but would be capped at an affordable level for everyone.
Employers could provide Medicare Extra for their workers alongside their private offerings. Compared with single-payer, these plans appear reasonable and realistic. By providing competition and better options for near-retirees and those with costly conditions, such an approach could also improve private marketplace coverage. It would include valuable disability components, too.
Whatever Democrats decide to do, they should start now, anticipating everything from the Congressional Budget Office’s deficit projections to the Senate parliamentarian’s reconciliation rules. Anyone who doubts the difficulty of this work might ponder Republicans’ rushed A.C.A. repeal effort, whose design was so shoddy that it alienated every patient and provider constituency around.
Much of the work that produced Obamacare was done well before President Obama took office. Between 2006 and 2009, groups like the Service Employees International Union and grass-roots activists began laying the groundwork for the A.C.A.’s passage. Activists, legislators, congressional staff members and constituency groups quietly met in forums such as Ted Kennedy’s “workhorse group” to make difficult political and policy decisions. Had a different Democrat been elected president, EdwardsCare or ClintonCare would have strongly resembled the A.C.A.
The next round will be different. Given all that’s happened, Democrats have an angrier, more partisan edge than they did then. The Democratic Party is also more unambiguously progressive. Ten years ago, conservative Democrats insisted on protracted negotiations and opposed the public option. For better and worse, these bridge figures are almost all gone. Progressive voters will be demanding a single-payer bill, and will be disappointed when they don’t get it. They are entitled to a feasible alternative they can genuinely be proud of.
Democrats must combine an ambitious progressive vision with sound policy and political realism. Their first opportunity, January 2021, is little more than two years away. There’s no time to waste.
America Is Blaming Pregnant Women for Their Own Deaths
What is it like to face dying during childbirth in the richest country in the world in the 21st century?
by Kim Brooks - NYT - November 16, 2018
Thea was 35 years old and 40 weeks pregnant when she went to her doctor for her final prenatal appointment. She was in good shape, didn’t smoke and had received regular prenatal care, though she wasn’t thrilled with the obstetrics practice she’d chosen in Chicago. The doctors were “more interested in protocols than people,” she said.
On that day, she was surprised to learn that her amniotic fluid was low, though the baby’s vital signs remained strong. The doctor informed Thea that she’d need to be induced right away. Thea questioned this directive, asking about the success rates for induction and whether she should consider a cesarean section instead. The doctor said she had no choice. She then asked if she could go home to get her overnight bag. She was told, she said, that if she left she could be “arrested for endangering the life of a child.”
Thea asked that I refer to her only by her first name because the details of her story are so personal. She also cautioned that “in trauma, memory can be fragmented and skewed.” But over a decade later, she remembers this confrontation with her doctor as the moment it became clear to her that in becoming a mother, she was no longer seen as a person: “I really felt like I was a piece of meat, like I was not being considered in this. It was all about the baby.”
I’ve been thinking lately about the remarkable ways in which American women continue to be devalued and disempowered through the prism of motherhood, even as we insist on the pre-eminence of mothers’ status. Alabama voters have just approved a constitutional amendment recognizing “fetal personhood,” a measure that could be used to further curtail the rights of pregnant women in favor of the safety of fetuses.
Seventy years ago, Simone de Beauvoir wrote that pregnancy can be both “an enrichment and a mutilation”; the mother “feels as vast as the world, but this very richness annihilates her — she has the impression of not being anything else.”
For experts studying the United States’ maternal mortality and injury rates — which are estimated to far surpass those in other developed countries — and for women in labor, the failure to treat mothers as people is neither antiquated nor dystopian, but absolutely pressing.
In September, USA Today published a major investigation into recent efforts to curb maternal death rates. A number of states have assigned panels of experts to review what went wrong in cases where mothers die. This sounds promising. Unfortunately, it hasn’t worked — rates have continued to rise — and the reason is hard to fathom.
“At least 30 states have avoided scrutinizing medical care provided to mothers who died, or they haven’t been studying deaths at all,” the newspaper said. “Instead, many state committees emphasized lifestyle choices and societal ills in their reports on maternal deaths. They weighed in on women smoking too much or getting too fat or on their failure to seek prenatal medical care.” Mothers, it seems, in addition to being held solely responsible for every facet of their child’s well-being, are also being held responsible for their own deaths.
Talk about blaming the victims.
According to USA Today, when asked about their decision not to scrutinize medical care, some doctors on the panels said they didn’t have the resources, and that hospitals don’t like to (and aren’t required to) hand over their dead patients’ charts. Lawmakers claimed that it wasn’t the job of the state to meddle with doctors’ decisions. And state officials argued that it was more important to focus on broader issues surrounding maternal health than on what may have gone wrong in specific women’s cases.
But it is hard to imagine some other scenario in which patients are dying in hospitals from complications of routine procedures — appendectomies, say — and instead of studying the care the patients received leading up to their deaths, review panels focus on the patients’ lifestyles in the year before their procedure.
The problem isn’t that we don’t know how to make childbirth safer. Stephanie Teleki, who leads the maternity care portfolio at the California Health Care Foundation, put it this way in an interview: “Women know what they want when it comes to labor and delivery, and it turns out the things they want (midwives, doulas, fewer unnecessary interventions and cesarean sections) are less expensive and produce better outcomes.” The problem is not that pregnant women are uneducated or uninformed; the problem is that those in charge aren’t listening to them.
I wanted to know what it is like to experience this — to face one’s death during childbirth in the richest country in the world in the second decade of the 21st century. Obviously, I couldn’t talk to women who had died in childbirth. So I spoke to women who had almost died. That’s what led me to Thea.
After 36 hours of pitocin, a drug that induces labor, and three hours of pushing, Thearequired a cesarean because the baby had turned sideways. Prolonged exposure to pitocin can increase the risk of postpartum hemorrhaging. And that’s what happened a few minutes after her daughter was delivered. Thea bled for three hours, while she got intravenous drugs to promote clotting and signed forms in case she ended up needing an emergency hysterectomy.
“They kept telling me how healthy the baby was,” she told me, “but that only made me more terrified that now I might die.” She spent a week in the hospital.
“They did save me in the end,” she says, “but after they almost killed me.”
When Serena Williams spoke out about the medical emergency she endured after the birth of her child last year, and the psychological trauma she suffered as a result, she began a long-overdue debate on America’s abysmal rates of maternal death and injury, as well as the ways that women of color bear the brunt of subpar care.
African-American women are nearly 3.5 times more likely than white women to die from pregnancy-related conditions. “Women are not being listened to,” Dr. Teleki told me. “But black women are the least listened to and it’s costing them their lives at a much higher rate.”
Ms. Williams’s story offered a personal glimpse into an epidemic of preventable deaths that has long been ignored in this country.
In 2000, United Nations member states issued a Millennium Development Goal of, by 2015, cutting the 1990 maternal death ratio by 75 percent. Through a large-scale international effort, maternal mortality was reduced by 43 percent worldwide during that period, and by almost 50 percent in developed countries. Meanwhile, the rates of American women dying from pregnancy rose.
Marian MacDorman, a research professor at the University of Maryland, told me that the United States was barely involved in the United Nations effort. “Nothing was being done, partly because nobody knew what was going on,” she said. “The data we had was bad, and people weren’t studying the data.”
It wasn’t until 2003 that states started adding a pregnancy check box to death certificates, and some didn’t do so until the past two years. “This created a data mess where nobody could figure out what the national trends were,” she said. She described this as “a huge missed opportunity for intervention in conjunction with the Millennium Development Goal.” At the same time, “the National Center for Health Statistics, which is the government agency responsible for publishing maternal mortality data, completely stopped publishing it.”
The only exception in the United States was California, where, in 2006, the Stanford University School of Medicine worked with the state to create the California Maternal Quality Care Collaborative. The initiative developed “quality improvement tool kits” that doctors and hospitals could download. They included detailed instructions about best practices for various preventable complications that can arise during or after pregnancy, like hemorrhaging and pre-eclampsia.
This sounds simplistic, but it had a powerful effect. “What you have to understand,” Dr. MacDorman explained, “is that these emergencies are horrible and they happen too often, but still, they’re not common. An O.B. might easily go a year without encountering such an emergency.”
As a result of this initiative, between 2006 and 2013, California saw a 55 percent decrease in the maternal mortality rate, from 16.9 to 7.3 deaths for every 100,000 live births. During that same period, according to The Washington Post, the national rate increased — from an estimated 13.3 to 22 deaths in 100,000.
These numbers, disturbing as they are, don’t account for the far greater number of women who are injured during delivery or suffer the trauma of near-death experiences. For many, this trauma can last a lifetime.
Claire, who also asked that I use only her first name, was 38 weeks into her fourth pregnancy in 1992 when she went into the hospital certain she was in active labor. She protested when the doctor decided that the baby wasn’t full-term and gave shots to halt the labor. A few weeks later the baby’s head descended and Claire returned to the hospital, but the baby was now so big that she labored unsuccessfully for 24 hours before undergoing an emergency C-section.
This is how she described her experience: “They gave me an epidural and asked me if I could feel the knife and I said, ‘Yes, I can,’ and they didn’t believe me. They said that’s impossible. But I kept saying, ‘No, I can feel it.’” Then her blood pressure dropped. “I hear my husband say, ‘Look at her blood pressure.’ And the doctor said, ‘Oh, that must be a malfunction of the machine.’ Then I hear, ‘Oh, my God, she’s going into shock,’” she explained. “At one point I heard them say, ‘We’re going to lose her, we’re going to lose the baby’.”
Claire still remembers it as one of the most terrifying experiences of her life. “I never completely got over it,” she told me. “I have a daughter now who’s pregnant. I’d like to just be happy about it but I can’t be.”
Thea’s daughter is now 13. She decided not to tell her how terrible the experience of her birth was, for fear she won’t want to have kids herself.
There was another reason, though, she told me, in a follow-up email to our conversation: “I didn’t want my daughter to know that the joy of her birth was mixed with trauma and the fear of my own death.” She still finds herself feeling guilty for that fear, for “caring about myself and my mortality.” This, she wrote, “speaks to the way I, and probably many other women, was dehumanized and demeaned during the delivery,” and told that “our babies are much more important than we are.”
“I was invested in maintaining that narrative as a way to love her,” Thea wrote.
DATA-DRIVEN MEDICINE WILL HELP PEOPLE — BUT CAN IT DO SO EQUALLY?
by Zeynep Zufekci - NYT - November 15, 2018
The promise of data-driven medicine is clear. Using the latest analytical techniques can lead to better health outcomes and — over time as data technology inevitably becomes cheaper and more widely available — help many more people. But as medicine moves from the kind of clinical practice that has informed centuries of treatment to the data-driven practices that have already transformed commerce, finance and the media, it will also find itself facing some of the same social challenges. In particular, big-data technology might seem like a social neutralizer or even a leveling force, but it can have a way of increasing divisions.
One hint at why this is comes from what communications theorists describe as a knowledge gap. Basically, people who already have better information are also better at getting more information, even if that information is in theory universal and available to all. We see this again and again in different fields. In my own research on schools and computers, for example, I often encounter students doing advanced and creative “technology” activities on the computers in well-off schools, and students doing rote learning and typing on the computers in poorer ones. That division means that later on, when the kids face a putatively even playing field, some will know better than others how to get ahead. Privileged kids get more resources not simply because they (or the schools) can afford to pay for them but because their parents are better equipped to advocate for their acceptance into gifted and talented programs, or to academically support them better through tutoring, attention and encouragement — harder tasks for a poor or single parent. There is also the effect of expectations and a lifetime of socialization: If you experience life as unfair, you are probably less likely to demand better when you encounter more injustice.
There is a great lesson here as we anticipate the rise of data-driven diagnostic and intervention techniques in health care. It’s not that new methods won’t help people; it’s that they will increase health inequality — not just among those who can afford it and those who cannot, but among those who can undertake the research and take advantage of the new techniques and those who cannot.
Further, these new data-driven medical techniques could lead to more discrimination. If there are no legal restrictions, for example, what’s to stop companies from trying to hire people who have fine-tuned their sleep patterns with biofeedback, who have better exercise outcomes thanks to genomic analyses or are less likely to develop cancer in the long run?
Legislators are not unaware of these problems. In 2008, the United States passed a landmark law called the Genetic Information Nondiscrimination Act, which bars companies from hiring, firing or promoting workers based on genetic-test results — or requiring such tests — and insurance companies from requiring or using such tests to decide coverage. But legislative protections are easily reversible. In fact, last year Republican lawmakers introduced a bill that would carve out several significant exceptions to the law.
It may seem perverse to worry about inequality when we are talking about something that can improve so many lives, but a society isn’t held together by making wonderful things available to just a few rich people. This isn’t an argument for holding back improvements in health care. It is an argument instead that we must focus on equitable outcomes for all of us: how to make sure that access to new forms of health care is fair and evenly distributed; how to make sure that we guard against new forms of discrimination that can emerge from all this data; and how we avoid a corporate-driven version of these shifts, in which health outcomes are mobilized not for our happiness and our well-being but to squeeze another hour or two from us at work.
Considering that the United States is alone among developed nations in its refusal to recognize health care as a fundamental right, it’s even more crucial to recognize that inequality risks poisoning the fruits of American medical ingenuity. The right measure for successful health care isn’t about the maximum possible for a few but the average for everyone, the median for a society and the minimum opportunities available to even those with the fewest resources and privileges. That’s not just fairness. That’s what a healthy society looks like.
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