Today, some of the greatest success stories in public health are unraveling.

This article was first published on Wednesday, February 26, 2020 in Kaiser Health News.

By Liz Szabo

For much of the 20th century, medical progress seemed limitless.

Antibiotics revolutionized the care of infections. Vaccines turned deadly childhood diseases into distant memories. Americans lived longer, healthier lives than their parents.

Yet today, some of the greatest success stories in public health are unraveling.

Even as the world struggles to control a mysterious new virus known as COVID-19, U.S. health officials are refighting battles they thought they had won, such as halting measles outbreaks, reducing deaths from heart disease and protecting young people from tobacco. These hard-fought victories are at risk as parents avoid vaccinating children, obesity rates climb, and vaping spreads like wildfire among teens.

Things looked promising for American health in 2014, when life expectancy hit 78.9 years. Then, life expectancy declined for three straight years — the longest sustained drop since the Spanish flu of 1918, which killed about 675,000 Americans and 50 million people worldwide, said Dr. Steven Woolf, a professor of family medicine and population health at Virginia Commonwealth University.

Although life expectancy inched up slightly in 2018, it hasn't yet regained the lost ground, according to the Centers for Disease Control and Prevention.

"These trends show we're going backwards," said Dr. Sadiya Khan, an assistant professor of cardiology and epidemiology at Northwestern University Feinberg School of Medicine.

While the reasons for the backsliding are complex, many public health problems could have been avoided, experts say, through stronger action by federal regulators and more attention to prevention.

"We've had an overwhelming investment in doctors and medicine," said Dr. Sandro Galea, dean of the Boston University School of Public Health. "We need to invest in prevention — safe housing, good schools, living wages, clean air and water."

The country has split into two states of health, often living side by side, but with vastly different life expectancies. Americans in the fittest neighborhoods are living longer and better — hoping to live to 100 and beyond — while residents of the sickest communities are dying from preventable causes decades earlier, which pulls down life expectancy overall.

Superbugs — resistant to even the strongest antibiotics — threaten to turn back the clock on the treatment of infectious diseases. Resistance occurs when bacteria and fungi evolve in ways that let them survive and flourish, in spite of treatment with the best available drugs. Each year, resistant organisms cause more than 2.8 million infections and kill more than 35,000 people in the U.S.

With deadly new types of bacteria and fungi ever emerging, Dr. Robert Redfield, the CDC director, said the world has entered a "post-antibiotic era." Half of all new gonorrhea infections, for example, are resistant to at least one type of antibiotic, and the CDC warns that "little now stands between us and untreatable gonorrhea."

That news comes as the CDC also reports a record number of combined cases of gonorrhea, syphilis and chlamydia, which were once so easily treated that they seemed like minor threats compared with HIV.

The United States has seen a resurgence of congenital syphilis, a scourge of the 19th century, which increases the risk of miscarriage, permanent disabilities and infant death. Although women and babies can be protected with early prenatal care, 1,306 newborns were born with congenital syphilis in 2018 and 94 of them died, according to the CDC.

Those numbers illustrate the "failure of American public health," said Dr. Cornelius "Neil" Clancy, a spokesperson for the Infectious Diseases Society of America. "It should be a global embarrassment."

The proliferation of resistant microbes has been fueled by overuse, by doctors who write unnecessary prescriptions as well as farmers who give the drugs to livestock, said Dr. William Schaffner, a professor of preventive medicine at Vanderbilt University Medical Center in Nashville, Tennessee.

Although new medications are urgently needed, drug companies are reluctant to develop antibiotics because of the financial risk, said Clancy, noting that two developers of antibiotics recently went out of business. The federal government needs to do more to make sure patients have access to effective treatments, he said. "The antibiotic market is on life support," Clancy said. "That shows the real perversion in how the health care system is set up."

A Slow Decline

A closer look at the data shows that American health was beginning to suffer 30 years ago. Increases in life expectancy slowed as manufacturing jobs moved overseas and factory towns deteriorated, Woolf said.

By the 1990s, life expectancy in the United States was falling behind that of other developed countries.

The obesity epidemic, which began in the 1980s, is taking a toll on Americans in midlife, leading to diabetes and other chronic illnesses that deprive them of decades of life. Although novel drugs for cancer and other serious diseases give some patients additional months or even years, Khan said, "the gains we're making at the tail end of life cannot make up for what's happening in midlife."

Progress against overall heart disease has stalled since 2010. Deaths from heart failure — which can be caused by high blood pressure and blocked arteries around the heart — are rising among middle-aged people. Deaths from high blood pressure, which can lead to kidney failure, also have increased since 1999.

"It's not that we don't have good blood pressure drugs," Khan said. "But those drugs don't do any good if people don't have access to them."

Addicting A New Generation

While the United States never declared victory over alcohol or drug addiction, the country has made enormous progress against tobacco. Just a few years ago, anti-smoking activists were optimistic enough to talk about the "tobacco endgame."

Today, vaping has largely replaced smoking among teens, said Matthew Myers, president of the Campaign for Tobacco-Free Kids. Although cigarette use among high school students fell from 36% in 1997 to 5.8% today, studies show 31% of seniors used electronic cigarettes in the previous month.

FDA officials say they've taken "vigorous enforcement actions aimed at ensuring e-cigarettes and other tobacco products aren't being marketed or sold to kids." But Myers said FDA officials were slow to recognize the threat to children.

With more than 5 million teens using e-cigarettes, Myers said, "more kids are addicted to nicotine today than at any time in the past 20 years. If that trend isn't reversed rapidly and dynamically, it threatens to undermine 40 years of progress."

Ignoring Science

Where children live has long determined their risk of infectious disease. Around the world, children in the poorest countries often lack access to lifesaving vaccines.

Yet in the United States — where a federal program provides free vaccines — some of the lowest vaccination rates are in affluent communities, where some parents disregard the medical evidence that vaccinating kids is safe.

Studies show that vaccination rates are drastically lower in some private schools and "holistic kindergartens" than in public schools.

It could be argued that vaccines have been a victim of their own success.

Before the development of a vaccine in the 1960s, measles infected an estimated 4 million Americans a year, hospitalizing 48,000, causing brain inflammation in about 1,000 and killing 500, according to the CDC.

By 2000, measles cases had fallen to 86, and the United States declared that year that it had eliminated the routine spread of measles.

"Now, mothers say, 'I don't see any measles. Why do we have to keep vaccinating?'" Schaffner said. "When you don't fear the disease, it becomes very hard to value the vaccine."

Last year, a measles outbreak in New York communities with low vaccination rates spread to almost 1,300 people — the most in 25 years — and nearly cost the country its measles elimination status. "Measles is still out there," Schaffner said. "It is our obligation to understand how fragile our victory is."

Health-Wealth Disparities

To be sure, some aspects of American health are getting better.

Cancer death rates have fallen 27% in the past 25 years, according to the American Cancer Society. The teen birth rate is at an all-time low; teen pregnancy rates have dropped by half since 1991, according to the Department of Health and Human Services. And HIV, which was once a death sentence, can now be controlled with a single daily pill. With treatment, people with HIV can live into old age.

"It's important to highlight the enormous successes," Redfield said. "We're on the verge of ending the HIV epidemic in the U.S. in the next 10 years."

Yet the health gap has grown wider in recent years. Life expectancy in some regions of the country grew by four years from 2001 to 2014, while it shrank by two years in others, according to a 2016 study in JAMA.

The gap in life expectancy is strongly linked to income: The richest 1% of American men live 15 years longer than the poorest 1%; the richest women live 10 years longer than the poorest, according to the JAMA study.

"We're not going to erase that difference by telling people to eat right and exercise," said Dr. Richard Besser, CEO of the Robert Wood Johnson Foundation and former acting director of the CDC. "Personal choices are part of it. But the choices people make depend on the choices they're given. For far too many people, their choices are extremely limited."

The infant mortality rate of black babies is twice as high as that of white newborns, according to the Department of Health and Human Services. Babies born to well-educated, middle-class black mothers are more likely to die before their 1st birthday than babies born to poor white mothers with less than a high school education, according to a report from the Brookings Institution.

In trying to improve American health, policymakers in recent years have focused largely on expanding access to medical care and encouraging healthy lifestyles. Today, many advocate taking a broader approach, calling for systemic change to lift families out of the poverty that erodes mental and physical health.

"So many of the changes in life expectancy are related to changes in opportunity," Besser said. "Economic opportunity and health go hand in hand."

Several policies have been shown to improve health.

Children who receive early childhood education, for example, have lower rates of obesity, child abuse and neglect, youth violence and emergency department visits, according to the CDC.

And earned income tax credits — which provide refunds to lower-income people — have been credited with keeping more families and children above the poverty line than any other federal, state or local program, according to the CDC. Among families who receive these tax credits, mothers have better mental health and babies have lower rates of infant mortality and weigh more at birth, a sign of health.

Improving a person's environment has the potential to help them far more than writing a prescription, said John Auerbach, president and CEO of the nonprofit Trust for America's Health.

"If we think we can treat our way out of this, we will never solve the problem," Auerbach said. "We need to look upstream at the underlying causes of poor health."

Liz Szabo: lszabo@kff.org, @LizSzabo

An analysis by Kaiser Health News and PolitiFact finds CMS Administrator Seema Verma's recent criticism of Medicaid "mostly false."

This article was first published on Friday, February 21, 2020 in Kaiser Health News.

By Phil Galewitz

The Trump administration's top Medicaid official has been increasingly critical of the entitlement program she has overseen for three years.

Seema Verma, administrator of the Centers for Medicare & Medicaid Services, has warned that the federal government and states need to better control spending and improve care to the 70 million people on Medicaid, the state-federal health insurance program for the low-income population. She supports changes to Medicaid that would give states the option to receive capped annual federal funding for some enrollees instead of open-ended payouts based on enrollment and health costs. This would be a departure from how the program has operated since it began in 1965.

In an early February speech to the American Medical Association, Verma noted how changes are needed because Medicaid is one of the top two biggest expenses for states, and its costs are expected to increase 500% by 2050.

"Yet, for all that spending, health outcomes today on Medicaid are mediocre and many patients have difficulty accessing care," she said.

Verma's sharp comments got us wondering if Medicaid recipients were as bad off as she said. So we asked CMS what evidence it has to back up her views.

A CMS spokesperson responded by pointing us to a CMS fact sheet comparing the health status of people on Medicaid to people with private insurance and Medicare. The fact sheet, among other things, showed 43% of Medicaid enrollees report their health as excellent or very good compared with 71% of people with private insurance, 14% on Medicare and 58% who were uninsured.

The spokesperson also pointed to a 2017 report by the Medicaid and CHIP Payment and Access Commission (MACPAC), a congressional advisory board, that noted: "Medicaid enrollees have more difficulty than low-income privately insured individuals in finding a doctor who accepts their insurance and making an appointment; Medicaid enrollees also have more difficulty finding a specialist physician who will treat them."

We opted to look at those issues separately.

What About Health Status?

Several national Medicaid experts said Verma is wrong to use health status as a proxy for whether Medicaid helps improve health for people. That's because to be eligible for Medicaid, people must fall into a low-income bracket, which can impact their health in many ways. For example, they may live in substandard housing or not get proper nutrition and exercise. In addition, lack of transportation or child care responsibilities can hamper their ability to visit doctors.

Benjamin Sommers, a health economist at Harvard University, said Verma's comparison of the health status of Medicaid recipients against people with Medicare or private insurance is invalid because the populations are so different and face varied health risks. "This wouldn't pass muster in a first-year statistics class," he said.

Death rates, for example, are higher among people in the Medicare program than those in private insurance or Medicaid, he said, but that's not a knock on Medicare. It's because Medicare primarily covers people 65 and older.

By definition, Medicaid covers the most vulnerable people in the community, from newborns to the disabled and the poor, said Rachel Nuzum, a vice president with the nonpartisan Commonwealth Fund. "The Medicaid population does not look like the privately insured population."

Joe Antos, a health economist with the conservative American Enterprise Institute, also agreed, saying he is leery of any studies or statements that evaluate Medicaid without adjusting for risk.

For a better mechanism to gauge health outcomes under Medicaid, experts point to dozens of studies that track what happened in states that chose in the past six years to pursue the Affordable Care Act's Medicaid expansion. The health law gave states the option to extend Medicaid to everyone with incomes up to 138% of the federal poverty level, or about $17,600 annually for an individual. Thirty-six states and the District of Columbia have adopted the expansion.

"Most research demonstrates that Medicaid expansion has improved access to care, utilization of services, the affordability of care, and financial security among the low-income population," concluded the Kaiser Family Foundation in summarizing findings from more than 300 studies. "Studies show improved self-reported health following expansion and an association between expansion and certain positive health outcomes." (Kaiser Health News is an editorially independent program of the foundation.)

Studies found the expansion of Medicaid led to lower mortality rates for people with heart disease and among end-stage renal disease patients initiating dialysis.

Researchers also reported that Medicaid expansion was associated with declines in the length of stay of hospitalized patients. One study found a link between expansion and declines in mechanical ventilation rates among patients hospitalized for various conditions.

Another recent study compared the health characteristics of low-income residents of Texas, which has not expanded Medicaid, and those of Arkansas and Kentucky, which did. It found that new Medicaid enrollees in the latter two states were 41 percentage points more likely to have a usual source of care and 23 percentage points more likely to say they were in excellent health than a comparable group of Texas residents.

Medicaid's benefits, though, affect far more than the millions of nondisabled adults who gained coverage as a result of the ACA. "Medicaid coverage was associated with a range of positive health behaviors and outcomes, including increased access to care; improved self-reported health status; higher rates of preventive health screenings; lower likelihood of delaying care because of costs; decreased hospital and emergency department utilization; and decreased infant, child, and adult mortality rates," according to a report issued this month by the nonpartisan Robert Wood Johnson Foundation.

Children — who make up nearly half of Medicaid enrollees — have also benefited from the coverage, studies find. Some studies report that Medicaid contributes to improved health outcomes, including reductions in avoidable hospitalizations and lower child mortality.

Research shows people on Medicaid are generally happy with the coverage.

A Commonwealth Fund survey found 90% of adults with Medicaid were satisfied or very satisfied with their coverage, a slightly higher percentage than those with employer coverage.

Accessible Care?

The evidence here is less emphatic.

A 2017 study published in JAMA Internal Medicine found 84% of Medicaid recipients felt they were able to get all the medical care they needed in the previous six months. Only 3% said they could not get care because of long wait times or because doctors would not accept their insurance.

Verma cites a 2017 MACPAC report that noted some people on Medicaid have issues accessing care. But that report also noted: "The body of work to date by MACPAC and others shows that Medicaid beneficiaries have much better access to care, and much higher health care utilization, than individuals without insurance, particularly when controlling for socioeconomic characteristics and health status." It also notes that "Medicaid beneficiaries also fare as well as or better than individuals with private insurance on some access measures."

The report said people with Medicaid are as likely as those with private insurance to have a usual source of care, a doctor visit each year and certain services such as a Pap test to detect cervical cancer.

"Medicaid is not great coverage, but it does open the door for health access to help people deal with medical problems before they become acute," Antos said.

On the negative side, the report said Medicaid recipients are more likely than privately insured patients to experience longer waiting times to see a doctor. They also are less likely to receive mammograms, colorectal tests and dental visits than the privately insured.

"Compared to having no insurance at all, having Medicaid improves access to care and improves health," said Rachel Garfield, a vice president at the Kaiser Family Foundation. "There is pretty strong evidence that Medicaid helps patients get the care they need."

Our Ruling

Verma said that "health outcomes today on Medicaid are mediocre and many patients have difficulty accessing care."

Numerous studies show people's health improves as a result of Medicaid coverage. This includes lower mortality rates, shorter hospital stays and more people likely to get cancer screenings.

While it's hard to specify what "many patients having difficulty accessing care" means, research does show that Medicaid enrollees generally say they have no trouble accessing care most of the time.

We rate the claim as Mostly False.

Sources:

Email response from the Centers for Medicare & Medicaid Services, Feb. 12, 2020

Telephone interview with Aviva Aron-Dine, vice president for health policy, Center on Budget and Policy Priorities, Feb. 12, 2020

Telephone interview with Sara Rosenbaum, professor of health policy and law, George Washington University, Feb. 12, 2020

Telephone interview with Rachel Nuzum, a vice president with the nonpartisan Commonwealth Fund, Feb. 13, 2020

Telephone interview with Rachel Garfield, vice president, Kaiser Family Foundation, Feb. 12, 2020

Telephone interview with Benjamin Sommers, a health economist at Harvard University, Feb. 13, 2020

Telephone interview with Jay Antos, health economist, American Enterprise Institute, Feb. 18, 2020

Centers for Medicare & Medicaid Services, "Speech: Remarks by CMS Administrator Seema Verma at the American Medical Association National Advocacy Conference," Feb. 11, 2020

Centers for Medicare & Medicaid Services, "Medicaid Facts and Figures," Jan. 30, 2020

Medicaid and CHIP Payment and Access Commission, "Monitoring Access to Care in Medicaid," March 2017

The Commonwealth Fund, "What Do Americans Think About Their Health Coverage Ahead of the 2020 Election?" Sept. 26, 2019

Robert Wood Johnson Foundation, "Medicaid's Impact on Health Care Access, Outcomes and State Economies," Feb. 1, 2019

Kaiser Family Foundation, "The Effects of Medicaid Expansion Under the ACA," Aug. 15, 2019

JAMA Cardiology, "Association of Medicaid Expansion With Cardiovascular Mortality" June 5, 2019

JAMA, "Association of Medicaid Expansion With 1-Year Mortality Among Patients With End-Stage Renal Disease," Dec. 4, 2018

JAMA Surgery, "Association of Expanded Medicaid Coverage With Hospital Length of Stay After Injury," Oct. 1, 2017

Annals of American Thoracic Surgery, "Medicaid Expansion and Mechanical Ventilation in Asthma, Chronic Obstructive Pulmonary Disease, and Heart Failure," July 1, 2019

Health Affairs, "Three-Year Impacts Of The Affordable Care Act: Improved Medical Care And Health Among Low-Income Adults," June 2017

Kaiser Family Foundation, "Children's Health Coverage: The Role of Medicaid and CHIP and Issues for the Future" June 27, 2016

JAMA Internal Medicine, "A National Survey of Medicaid Beneficiaries' Experiences and Satisfaction With Health Care," September 2017

Phil Galewitz: pgalewitz@kff.org, @philgalewitz

A new analysis of transplant data finds that a startling number of lifesaving organs are lost or delayed after being shipped on commercial flights.

This article was first published on Monday, February 10, 2020 in Kaiser Health News.

By JoNel Aleccia

When a human heart was left behind by mistake on a Southwest Airlines plane in 2018, transplant officials downplayed the incident. They emphasized that the organ was used for valves and tissues, not to save the life of a waiting patient, so the delay was inconsequential.

"It got to us on time, so that was the most important thing," said Doug Wilson, an executive vice president for LifeNet Health, which runs the Seattle-area operation that processed the tissue.

That high-profile event was dismissed as an anomaly, but a new analysis of transplant data finds that a startling number of lifesaving organs are lost or delayed after being shipped on commercial flights, the delays often rendering them unusable.

In a nation where nearly 113,000 people are waiting for transplants, scores of organs — mostly kidneys — are discarded after they don't reach their destination in time.

Between 2014 and 2019, nearly 170 organs could not be transplanted and almost 370 endured "near misses," with delays of two hours or more, after transportation problems, according to an investigation by Kaiser Health News and Reveal from the Center for Investigative Reporting. The media organizations reviewed data from more than 8,800 organ and tissue shipments collected voluntarily and shared upon request by the United Network for Organ Sharing, or UNOS, the nonprofit government contractor that oversees the nation's transplant system. Twenty-two additional organs classified as transportation "failures" were ultimately able to be transplanted elsewhere.

Surgeons themselves often go to hospitals to collect and transport hearts, which survive only four to six hours out of the body. But kidneys and pancreases — which have longer shelf lives — often travel commercial, as cargo. As such, they can end up missing connecting flights or delayed like lost luggage. Worse still, they are typically tracked with a primitive system of phone calls and paper manifests, with no GPS or other electronic tracking required.

Transplant surgeons around the country, irate and distressed, told KHN they have lost the chance to transplant otherwise usable kidneys because of logistics.

"We've had organs that are left on airplanes, organs that arrive at an airport and then can't get taken off the aircraft in a timely fashion and spend an extra two or three or four hours waiting for somebody to get them," said Dr. David Axelrod, a transplant surgeon at the University of Iowa.

One contributing factor is the lack of a national system to transfer organs from one region to another because they match a distant patient in need.

Instead, the U.S. relies on a patchwork of 58 nonprofit organizations called organ procurement organizations, or OPOs, to collect the organs from hospitals and package them. Teams from the OPOs monitor surgeries to remove organs from donors and then make sure the organs are properly boxed and labeled for shipping and delivery.

From there, however, the OPOs often rely on commercial couriers and airlines, which are not formally held accountable for any ensuing problems. If an airline forgets to put a kidney on a plane or a courier misses a flight because he got lost or stuck in traffic, there is no consequence, said Ginny McBride, executive director of OurLegacy, an OPO in Orlando, Florida.

In an era when consumers can precisely monitor a FedEx package or a DoorDash dinner delivery, there are no requirements to track shipments of organs in real time — or to assess how many may be damaged or lost in transit.

"If Amazon can figure out when your paper towels and your dog food is going to arrive within 20 to 30 minutes, it certainly should be reasonable that we ought to track lifesaving organs, which are in chronic shortage," Axelrod said.

For years, organs were distributed locally and regionally first, a system that resulted in wide disparities in organ waiting times across the country. In recent years, UNOS officials and the transplant community, with federal urging, have been working, organ by organ, to restructure how it's done.

Amid those ongoing efforts to allocate organs more fairly — and, recently, a Trump administration effort to overhaul kidney care — the waste of some of these precious resources donated by good Samaritans has been overlooked. Last year, an average of nine people a day died while waiting for a new kidney.

Donor families and waiting patients may never know what's happened to an organ provided by a loved one or why a surgery is canceled at the last minute.

"We have been unaware of how many kidneys have been waylaid," said McBride, of the Orlando procurement agency. "That's not a number that's been transparent to us."

But, she added, she's aware of the risk: "I say a prayer and hold my breath every time a kidney leaves our office."

46 Minutes To Spare

In October, a kidney en route from McBride's OPO in Florida to a patient in North Carolina missed its connection in Atlanta. The box was prominently marked as a human organ and displayed a phone number to call. Apparently unaware of the urgency, a Delta cargo worker merely set it aside for a later flight.

The waiting transplant surgeon in Greensboro, North Carolina, "was having a fit," said Kim Young, the OurLegacy organ recovery coordinator. If the kidney didn't get to the hospital by 7 a.m., he wouldn't be able to use it. Both the risk of organ failure and the chance of death increase with every hour a kidney is out of the body.

McBride had to decide whether to charter a plane at a cost of $15,000 — or to find a courier to drive the kidney through the night. She settled on the road trip, and the organ arrived at 6:14 a.m. — with just 46 minutes to spare.

Four months later, the transplant appears to have been a success, McBride said.

Delta Air Lines officials declined repeated requests to comment on its organ transport service or the specific incident McBride described.

Several domestic airlines, including Delta, United, American, Southwest and Alaska, provide special cargo services for organs with priority boarding, handling and monitoring. They all declined to comment on organ transportation.

The traveling public may not realize it, but thousands of transplant organs — mostly kidneys, but some pancreases — fly on commercial flights each year. Roger Brown, who runs the Organ Center at UNOS, estimates that as many as 10 organs for transplant are on the move this way every day.

UNOS handles about 1,800 of these organ and tissue shipments a year, of which 1,400 are kidneys. That's a fraction of the nearly 40,000 organs transplanted in the U.S. last year, including more than 23,000 kidneys. About 1 in every 6 transplanted kidneys is shipped nationally, UNOS figures show.

Most of the time, the organs get where they're going without incident, Brown said.

"We're never going to get rid of flight delays. We're never going to get rid of human error," he said. "We're never going to get rid of the person who's [trying to be] a little too helpful and perhaps puts it someplace special, which then maybe creates issues downstream."

Troubling Reports

Reports of trouble abound. In August, transplant officials at Medical City Dallas reported in a public forum that they'd lost three kidneys just that month because of problems with commercial flights.

"One organ was delayed due to weather and the next available flight wasn't till the next day," the report said. "Another organ made it to the airport, but was never placed on the intended flight. The third organ was mistakenly taken to the wrong airport and missed the intended flight."

In Kentucky, transplant surgeon Dr. Malay Shah said a kidney traveling on Delta from Pensacola, Florida, via Atlanta, on Oct. 1 sat in the Lexington airport for three hours before he was notified it was there. No one had noticed the box with the label that said "human organ for transplant," he said.

"It's scary," Shah said. "Organs traveling by this mechanism are treated as simply 'baggage' or 'cargo.'"

Before the 9/11 terror attacks in 2001, OPO workers could take organs through airport security and see them loaded onto the plane from the passenger gate, McBride said. Because of changes in security protocol, airline employees now load organs on the tarmac, where they fly in pressurized cargo holds.

While anecdotes like Shah's are common, there's little data to show how often these transportation problems occur. No federal agency, including the Health Resources and Services Administration, or HRSA, which contracts with UNOS, requires monitoring of transportation for transplant organs.

"Matters involving the transportation methods used by organ procurement organizations (OPOs) are arranged directly between OPOs and transplant centers," HRSA spokesperson David Bowman said in an email.

Airlines log organ shipments in internal booking systems and on cargo manifests, but those documents aren't public and no summary is available, said Katherine Estep, communications director for Airlines for America, an industry trade group.

"Live human organs receive the highest priority designation," she said in a statement.

UNOS researchers noted the impact of transportation problems in 2014. They found 30 organs discarded and 109 "near misses" between July 2014 and June 2015.

But the agency didn't begin formally tracking transportation errors until 2016, when a new computer system came online. Before that, Organ Center staff kept track of problems informally, with pencil and paper, and the information wasn't verified, Brown said.

Calls for closer tracking from within the system have been met with defensiveness — or apathy, said Brianna Doby, an organ transplant community consultant for the Johns Hopkins School of Medicine.

"If you talk out loud about organ issues, they say it will drive down donation rates," Doby said. "It's not OK for us to say, 'Well, shipping is hard.' That's not an acceptable answer."

A National Network

UNOS was established in 1984 after Congress enacted the National Organ Transplant Act to address a critical shortage of donor organs and to improve organ matching and placement. It called for a national network to ensure that organs that couldn't be used in the area where they were donated would be transplanted to save lives elsewhere. Before that, many organs were lost simply because transplant teams couldn't find compatible recipients in time.

The act established the national Organ Procurement and Transplantation Network and called for the OPTN to be operated by a private, nonprofit organization under federal contract. UNOS, which has held the contract since the inception of OPTN, is overseen by HRSA, an agency of the U.S. Department of Health and Human Services.

Today, UNOS typically handles organs with conditions that can make them hard to place. That can include organs from older donors or those with medical or other characteristics that make them difficult to match.

Overall, about 7% of shipments handled by UNOS from July 2014 to November 2019 encountered transportation problems, the data obtained by KHN and Reveal showed. UNOS wouldn't release details about individual shipments, including dates or places shipped or causes of the transportation failures or delays.

But Brown, of the UNOS Organ Center, said an internal analysis showed that more than half of the transportation problems were related to commercial airlines or airports. Of those, two-thirds were caused by weather delays, mechanical delays and flight cancellations.

About one-third of transportation problems were related to logistics providers or ground couriers, mostly delays of package pickups. The rest were related to the sender or receiver of the shipments. The most common issue was the package not being ready for pickup at the designated time.

However, Brown said, poor outcomes can't be blamed directly on transportation problems, even when they do occur.

"The delay could be the primary reason an organ wasn't transplanted," he said. "It could be a contributing factor or it could have nothing to do with the reason that the organ is not transplanted."

Other transplant experts downplay the impact of transportation problems. Kelly Ranum, president of the Association of Organ Procurement Organizations, said she's "surprised at how low" UNOS' failure numbers are, considering the volume of kidneys shipped.

Dr. Kevin O'Connor, chief executive of LifeCenter Northwest, an OPO based in Seattle, said transportation problems are "minimal" compared with the other reasons organs — including about 3,500 donated kidneys — are discarded each year. These typically include biopsy findings, the inability to find a recipient and poor organ function.

"For over 30 years and literally tens of thousands of organs being transported," he said, "I can count on the fingers of one hand the number of times that, because of a transportation glitch, an organ was ultimately not transplanted."

Still, O'Connor acknowledged that "even one kidney being thrown away because of transportation errors is unacceptable."

Part of the problem lies with the way organs are transported now, said Axelrod, who also represents the American Society of Transplant Surgeons.

"We don't have an end-to-end unified transportation system," Axelrod said. "We don't have a FedEx for transplant. We have a cobbled-together system of OPOs and couriers and private aircraft and commercial aircraft."

In recent years, several courier companies have emerged to meet the market for transplant organs. Don Jones, chief executive of the Nationwide Organ Recovery Transport Alliance, or NORA, contracts with more than 15 OPOs and oversees about 400 organs a year on commercial flights.

"I would say 99.8% of our transports on commercial airlines go perfectly fine," Jones said based on his estimate. Jones noted that his firm ships organs only on direct flights and uses GPS tracking to monitor them.

However, GPS tracking isn't universal — or required by UNOS or HRSA. Some couriers and airlines use it; many don't. Many OPOs monitor organs through a combination of verbal handoffs, automation and label scans, Brown said.

In Ginny McBride's misadventure last fall, she contracted with a courier, Sterling Global Aviation Logistics, which used Delta Air Lines to ship the kidney.

Delta uses GPS trackers on its Dash Critical shipments, promising fast, guaranteed delivery of human organs. But on that night in October, the kidney was shipped from Orlando to Atlanta without a GPS tracker. In Atlanta, a cargo worker couldn't find a GPS device to put on the box containing the kidney, so the worker held the organ for a later flight. That would have pushed it far beyond the window of viability.

An internal Delta report, obtained by McBride, found that Delta didn't have enough GPS devices available in Atlanta that night. "Destination stations are not returning the devices in a timely manner," according to the report. "One way to mitigate this from reoccurring is to have a larger inventory of GPS devises (sic) at each station."

Delta declined to comment on the report.

The average wait time for a kidney varies widely nationwide, from less than three years to more than a decade. One proposal to put more organs to use called for eliminating the 58 donation service areas and 11 regions now used to allocate kidneys and replacing them with a zone of up to 500 nautical miles from the donor hospital.

In December, OPTN cut that range in half — to 250 nautical miles — in part because of an outcry about problems shipping kidneys via commercial air.

"There are certainly no technological barriers to doing GPS and to actually requiring it," Brown said.

A UNOS committee is considering whether to collect data on transportation methods and outcomes, but, so far, the question remains under review.

"If the community wants it, they should ask for it," Brown said. "We can help facilitate and get it done for them."

McBride, who discussed solutions with her colleagues, hopes the transplant organizations will come together to solve transportation problems, to make sure every eligible donated kidney gets transplanted.

"Any organ that's wasted, in my opinion, is a loss to the patient and to the community," said Paul Conway, of the American Association of Kidney Patients, an advocacy group, who is himself a kidney recipient. "With all of the advances going on with drugs, with medical procedures, how can you have a logistics error be the barrier?"

This investigation and a related podcast represent a collaboration between Kaiser Health News and Reveal, from The Center for Investigative Reporting (CIR), a nonprofit news organization. Reveal, from CIR and PRX, is a nationally broadcast public radio show and investigative reporting podcast. Kaiser Health News (KHN) is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation that is not affiliated with Kaiser Permanente.

JoNel Aleccia: jaleccia@kff.org, @JoNel_Aleccia

Disagreements between insurers and health systems that leave patients stranded are a perennial problem in U.S. healthcare.

This story was first published on Thursday, February 6, 2020 in Kaiser Health News.

By Brian Krans February 6, 2020

After Zoe Friedland became pregnant with her first child, she was picky about choosing a doctor to guide her through delivery.

"With so many unpredictable things that can happen with a pregnancy, I wanted someone I could trust," Friedland said. That person also had to be in the health insurance network of Cigna, the insurer that covers Friedland through her husband's employer.

Friedland found an OB-GYN she liked, who told her that she delivered only at Sequoia Hospital in Redwood City, California, a part of San Francisco-based Dignity Health. Friedland and her husband, Bert Kaufman, live in Menlo Park, about 5 miles from the hospital, so that was not a problem for them — until Dec. 12.

That's the day Friedland and Kaufman received a letter from Cigna informing them their care at Sequoia might not be covered after Jan. 1. The insurance company had not signed a contract for 2020 with the hospital operator, which meant Sequoia and many other Dignity medical facilities around the state would no longer be in Cigna's network in the new year.

Suddenly, it looked as if having their first baby at Sequoia could cost Friedland and Kaufman tens of thousands of dollars.

"I was honestly shocked that this could even happen because it hadn't entered my mind as a possibility," Friedland said.

She and her husband are among an estimated 16,600 people caught in a financial dispute between two gigantic health care companies. Cigna is one of the largest health insurance companies in the nation, and Dignity Health has 31 hospitals in California, as well as seven in Arizona and three in Nevada. The contract fight affects Dignity's California and Nevada hospitals, but not the ones in Arizona.

"The problem is price," Cigna said in a statement just before the old contract expired on Dec. 31. "Dignity thinks that Cigna customers should pay substantially more than what is normal in the region, and we think that's just wrong."

Tammy Wilcox, a senior vice president at Dignity, said, "At a time when many nonprofit community hospitals are struggling, Cigna is making billions of dollars in profits each year. Yet Cigna is demanding that it pay local hospitals even less."

In 2018, the most recent full year for which earnings data is available, Cigna generated operating income of $3.6 billion on revenue of approximately $48 billion. Dignity Health reported operating income of $529 million on revenue of $14.2 billion in its 2018 fiscal year.

It's possible Cigna and Dignity can still reach an agreement. Both sides said they will keep trying, though no talks are scheduled.

Disagreements between insurers and health systems that leave patients stranded are a perennial problem in U.S. health care. Glenn Melnick, a professor of health economics at the University of Southern California, said such disputes, which are disruptive to consumers, are often settled.

Melnick believes Dignity is using an "all or nothing" strategy in contract negotiations, meaning either all its facilities are in the insurer's network or none are.

"This allows them to increase their market power to get higher prices, which is not necessarily good for consumers," Melnick said.

Dignity replied in an emailed statement: "We do not require payers to contract with all or none of Dignity Health's providers. We do try to make sure patients have access to the full range of Dignity Health services and facilities in each of our communities."

Dignity faces a number of legal and financial challenges while it works to implement a February 2019 merger with Englewood, Colorado-based Catholic Health Initiatives that created one of the nation's largest Catholic hospital systems — known as CommonSpirit Health.

California Attorney General Xavier Becerra approved the deal with conditions, including that Dignity's California hospitals spend $10 million in the first three years on services for people experiencing homelessness and offer free care to more low-income patients.

The requirement to treat more poor patients at no charge followed a period, from 2011 to 2016, in which Dignity's charity care declined about 35% while its net income was $3.2 billion.

Last October, CommonSpirit announced an operating loss of $582 million on revenue of nearly $29 billion for the 2019 fiscal year, its first annual financial statement after the merger took effect. Much of the loss was due to merger-related costs and special charges.

The same month, Dignity completed a five-year "corporate integrity agreement" with the U.S. Office of the Inspector General following an investigation into how it billed the government for hospital inpatient stays. Dignity said it "fully complied" with the agreement.

Dignity is also defending itself in a class-action lawsuit alleging that it bills uninsured patients at grossly inflated rates even though it claims to provide "affordable" care at "the lowest possible cost."

More recently, an appeals court judge ruled Dignity could not charge higher prices — often a lot higher than state-set rates — for treating enrollees of L.A. Care's Medi-Cal health plan at its Northridge Hospital Medical Center.

Dignity disagreed with the court's ruling in that case, saying that although the Northridge facility did not have a contract with L.A. Care, many of the health plan's enrollees who initially sought emergency treatment there stayed in the hospital for additional care after they had been stabilized. The hospital "seeks appropriate reimbursement for providing this care," Dignity said.

If Dignity does not reach an agreement with Cigna, its hospitals, outpatient surgery centers and medical groups in most of California will soon be out-of-network for many Cigna enrollees. In-network coverage for Open Access (OAP) and Preferred Provider (PPO) ended Feb. 1, and for HMO patients it is set to end April 1.

Peter Welch, president and general manager for Cigna in Northern California and the Pacific Northwest, said Cigna can provide "adequate access" to other hospitals and doctors.

Certain Cigna enrollees can apply to continue visiting Dignity facilities and doctors under California's Continuity of Care law, enacted in 2014. Eligible enrollees include patients with chronic conditions, those already scheduled for pre-authorized services, people in need of emergency care and pregnant women in their third trimester.

Friedland and Kaufman applied, hoping she would be able to continue seeing her Dignity-affiliated OB-GYN at in-network rates.

On Jan. 22, less than a month from Friedland's Feb. 15 due date, they received written confirmation that their request had been approved. They wouldn't have to shop for a new doctor or face stiff medical bills after all.

Early Tuesday evening, Friedland gave birth to a baby girl, Eliza, who entered the world 11 days earlier than expected, weighing in at 7 pounds, 3 ounces.

"While the ordeal was stressful, and the communication fraught, we were happy to receive confirmation of continuity of care and that it ended in the best possible way — with the birth of our healthy baby daughter with the provider where we established care," Kaufman said. "For the sake of those caught in the middle and now having to start relationships with new health care providers, we hope the two sides can come to an agreement."

This KHN story first published on California Healthline, a service of the California Health Care Foundation.

Brian Krans: @citizenkrans