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Miracle Machine Makes Heroic Rescues — And Leaves Patients In Limbo

Kaiser Health News - 36 min 38 sec ago

The latest miracle machine in modern medicine — whose use has skyrocketed in recent years — is saving people from the brink of death: adults whose lungs have been ravaged by the flu; a trucker who was trapped underwater in a crash; a man whose heart had stopped working for an astonishing seven hours.

But for each adult saved by this machine — dubbed ECMO, for extracorporeal membrane oxygenation — another adult hooked up to the equipment dies in the hospital. For those patients, the intervention is a very expensive, labor-intensive and unsuccessful effort to cheat death.

ECMO, the most aggressive form of life support available, pumps blood out of the body, oxygenates it and returns it to the body, keeping a person alive for days, weeks or months, even when their heart or lungs don’t work.

The invention is creating “an entirely new paradigm,” said Dr. Kenneth Prager, director of clinical ethics at Columbia University Irving Medical Center. “You have a heart that’s not working, yet the patient is not dead.”

Most commonly used for newborns, ECMO use has been growing dramatically among adults. In the United States, procedures tripled from 2008 to 2014, up to an estimated 6,890, according to the federal Agency for Healthcare Research and Quality.

Experts caution that as ECMO becomes more available, it is also being used as a last-ditch attempt to buy more time for dying patients with poor chances of survival.

ECMO is not designed to be a destination, but a bridge to somewhere — recovery, transplantation or an implanted heart device. But when patients are too sick to reach those goals, ECMO can become a “bridge to nowhere,” leaving the patient in limbo, possibly even awake and alert, but with no chance of survival outside the intensive care unit. Medical teams and families can be fiercely divided over when to pull the plug.

ECMO is very expensive, mostly due to the labor involved: A person on ECMO cannot live outside the ICU and must be continuously monitored for complications, such as blood clots, bleeding, infection and loss of blood to the limbs. Median charges for ECMO in 2014 were $550,000, making it the 15th-most-costly procedure that year, according to the AHRQ.

In one recent case, a teaching hospital charged $4.2 million for a 60-day ECMO stay for a 19-year-old man with acute respiratory distress syndrome who was comatose the entire time and did not survive, according to Dr. Merrit Quarum, CEO and founder of WellRithms, a cost-containment company. Quarum said a self-insured health plan is covering the bill.

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The number of U.S. hospitals offering ECMO has more than doubled from 108 in 2008 to 264 today, according to a registry run by the Extracorporeal Life Support Organization (ELSO), which tracks most but not all programs.

“In the United States, the competition between hospitals is so intense that every hospital wants the ability to provide this level of care,” said Randy Bartilson, president of the ECMO Advantage consulting firm.

But “as ECMO expands, there’s still a lot of places that still don’t fully understand what it can do and how to use it,” he said.

Four patient stories highlight the promise — and complexities — of this game-changing technology.

The Seven-Hour Code

Dr. Jessica Zitter was working in the ICU in an Oakland, Calif., hospital one day when she got summoned for a code blue. A 60-year-old patient had arrived with a heart attack. His heart went into ventricular fibrillation, where it just wiggled like “a bag of worms,” she said.

Hospital staff started pumping their palms on the man’s chest and put a tube in his throat to help him breathe. Every so often, they stood back and zapped his heart with an electric shock. It didn’t work. So, they strapped onto his chest a LUCAS machine, which automatically performs chest compressions like a jackhammer.

The man’s oxygen levels were plummeting. At the same time, Zitter recalled, he kept moving, giving her the feeling there was a life to be saved. The medical team decided to go to the next level: ECMO. Everyone waited, with the jackhammering compressions still going, as an ECMO team scrambled to get there from another hospital across the city.

Zitter watched in awe as the ECMO team from the University of California-San Francisco got to work. They stuck one huge tube in a femoral artery and one in a femoral vein. As they pumped his blood out, it was black from deoxygenation. But after it ran through the ECMO machine, she recalled, it transformed into a bright red.

(Courtesy of University of Iowa Hospitals & Clinics)

Once on ECMO, the patient didn’t need his heart, so it could sit idle and recover. Zitter watched as oxygen returned to his body and brain. He was whisked back to UCSF.

Zitter, who has written about the overuse of modern technology to prolong death, wasn’t optimistic. The patient had coded, with people and machines ramming his failing heart, for an astonishing seven hours before ECMO arrived. But as she kept tabs on the patient, she was amazed to learn that he was able to recover and go home.

The case was a “big shocker,” Zitter said.

But it was “a crazy, crazy, crazy outlier case with a crazy, crazy, crazy outlier response,” she cautioned. “When these kinds of things happen, people tend to look at them and assume that they will have the same odds. The reality is that they won’t.”

When patients receive ECPR (ECMO for cardiopulmonary resuscitation), only 29% make it out of the hospital alive, according to international statistics from ELSO. Survival rates are higher for people who use ECMO for only the lungs (59%) or only the heart (42%), according to ELSO.

Saving ‘Santa’

A more common outcome for ECPR looks something like what Dr. Haider Warraich of Duke University Medical Center came across three or four years ago during his cardiology training.

Warraich was called to the waiting area of a lung transplant clinic, where a man in his 60s had collapsed on the floor due to a heart attack. The man, who had white hair and a scraggly beard, played Santa every Christmas, Warraich later learned. “Santa” — as Warraich refers to him in his upcoming book, “State of the Heart” — had received a new set of lungs after his were wrecked by smoking and lung disease.

The man’s heart, starved of oxygen, sped up into a malignant rhythm. CPR and electric shocks didn’t bring it back. Motivated to save not only the patient but the new set of lungs he had received, the team called in ECMO.

The ECMO squad arrived with catheters “the size of small javelins,” Warraich recalled. Once Santa was hooked up on ECMO, the exhausted CPR team could stop. Cardiologists did surgery on a blocked artery, but they never got his heart back to normal. The man lingered for a month, using ECMO for his heart, a ventilator for his lungs and dialysis for his kidneys, before he died.

In this case, using ECMO felt appropriate, Warraich said. But he said doctors need more guidance to determine which patients would benefit the most and to prevent overuse.

“If you have someone who is dying in front of you, it’s really hard to step back and think about it,” he said.

The technology, developed in the 1970s, was initially used primarily for newborns. Early clinical trials in adults were discouraging. But in 2009, the CESAR trial in the United Kingdom showed positive results for ECMO in adults with severe respiratory failure. Those findings, combined with improved technology and an epidemic of swine flu, prompted a swift growth of ECMO among adults. The average age for U.S. adults receiving ECMO is 51, one study found. About 1 in 10 ECMO cases are for people over 65.

Warraich and other experts say they are now concerned that new organ-donation rules may inadvertently spur hospitals to place more patients on ECMO: Under guidelines approved by the Organ Procurement and Transplantation Network last October, patients on ECMO jump to the front of the heart transplant waiting list.

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An ‘Unbearable’ Choice

Once a patient is on ECMO, deciding when to stop can cause moral distress and division among medical staff, said Dr. Robert Truog, director of the Center for Bioethics at Harvard Medical School.

In one case Truog described in The Lancet, a 17-year-old boy came to the ICU at Boston Children’s Hospital, where Truog works as a physician. The boy, who had already had one lung transplantation for cystic fibrosis, was now in end-stage respiratory failure. The only way to save his life was to give him another set of lungs. He started on ECMO as a bridge therapy while he awaited transplantation.

The boy was fully conscious, doing homework, texting friends and visiting with family. But after two months of living in the ICU, he was diagnosed with untreatable cancer that made him ineligible to receive new lungs.

Clinicians were deeply divided over what to do next, Truog said. Some wanted to stop ECMO immediately because its original goal — a bridge to transplantation — was no longer possible.

Others argued that even though he couldn’t survive outside the ICU, the boy seemed to have a good quality of life on ECMO, and his family and friends “derived benefits from his continued survival,” Truog wrote. They argued that the family should have the right to continue this form of life support, just as with dialysis, ventilation or an artificial heart.

A third argument arose, Truog said: If leaving this patient on ECMO was appropriate, then in fairness “why don’t we put everyone with respiratory failure on ECMO?”

For the parents, Truog said, it was “unbearable” to choose a day or moment to turn off ECMO, because they knew their child would immediately die.

Clinicians devised an alternative the family would agree to: They decided not to replace the ECMO oxygenator, a part that needs to be changed every week or two when it develops blood clots. After about a week, the oxygenator gradually failed and the patient lost consciousness and died, Truog said.

The solution “allowed him to die in a way where we didn’t feel like we were choosing the moment of his death,” he said.

The solution was not optimal, Truog said. But “no matter how you do this, it’s going to be very emotionally upsetting to everyone. These are the cases that make some people leave the profession because they’re so hard.”

A Long Goodbye

Karen Ayoub had never heard of ECMO until her husband became direly ill.

Philip Ayoub, 58, an accountant and former comptroller for the National Football League, was a “huge personality” and a family man; the couple raised twin boys in Greenwich, Conn. Heart disease, which ran in his family, hit him early: He had his first coronary bypass surgery at age 30 and his second at 43, she said.

“He knew that his life might be foreshortened” and “tried to pack as much living into it as possible,” said Karen Ayoub, 55. Her husband told her he didn’t want any extraordinary lifesaving measures — he was happy with the life he had lived, she said.

In December 2017, he had a third bypass surgery at a hospital on Long Island, and it didn’t go well. His heart was weaker than anticipated. He became unconscious, and it wasn’t clear if he would ever wake up. He was transferred to Columbia University Irving Medical Center, which has an ECMO program.

Philip Ayoub, 58, an accountant and former comptroller for the National Football League, with his twin sons. Heart disease, which ran in his family, hit him early: He had his first coronary bypass surgery at age 30 and his second at 43.(Courtesy of Karen Ayoub)

Karen Ayoub said it was a fairly easy decision to put her husband on ECMO: “I thought he deserved any chance possible to recover,” she said. But she didn’t know how he’d react.

“I wasn’t sure if he was going to wake up and say, ‘Why did you do this? I didn’t want any of this!'” she recalled.

When her husband regained consciousness, he mouthed the words: “Why am I here?”

He remained in the ICU for two months, on a feeding tube, breathing tube, ECMO and dialysis. His time there was not easy, she said: Her husband, who had endured a series of mini-strokes during the bypass surgery, began to experience post-traumatic stress disorder, night terrors and side effects from medications.

The only option for further treatment, she said, was to get an implanted device that would help his heart pump. But as he weighed that decision, and the quality of life he would have, the window of time closed when he was eligible for the device, Karen Ayoub said.

When further treatment became out of reach, it was clear her husband was going to die.

“His body was failing him,” Karen Ayoub said. “It was time.”

She said the two months in the ICU felt like “a gift,” because she and her children got to spend extra time with her husband.

“I’ll always love you, I’ll always be with you,” he told his wife over and over during that time.

She said she would make the same choice again to initiate ECMO, but “I don’t know about him — he was the one laying in that bed for two months, being tortured by needles and night visions.”

After they ran out of treatment options, the family gave permission for the hospital to discontinue life support. Philip wasn’t afraid, she said: As his final day approached, he told her, “I can’t wait to see what comes next.”

Philip was sedated before ECMO was turned off. Karen Ayoub laid her head on her husband’s chest and held his hands as he died.

“It was peaceful and respectful,” she said, “exactly what he wanted.”

‘Futile’ Care

While the Ayoub family bravely accepted their fate, other families can’t bring themselves to let go, said Dr. Shunichi Nakagawa, a palliative care doctor at Columbia who cared for Philip Ayoub.

Some ECMO patients have severe, irreversible brain damage, can’t participate in decision-making and bear no chance of making it out of the hospital alive. For them, ECMO represents “the most extreme form of medical futility,” Nakagawa argued in an article he and Prager co-authored with a colleague in the journal Circulation. They argue that clinicians should have the authority to end or limit life support in such hopeless cases, even if the family objects.

Whether they can do that depends on where they practice: Laws in states such as Idaho, Oklahoma and New York make it difficult to withdraw life-sustaining treatment like ECMO without consent from patients or their families, said Thaddeus Mason Pope, director of the Health Law Institute at Mitchell Hamline School of Law in St. Paul, Minn. But in states like California, Texas and Virginia, clinicians may withdraw ECMO without consent, he said.

Dr. Robert Bartlett, a pioneer of the ECMO field and professor emeritus at the University of Michigan, said he trains doctors that once ECMO becomes a bridge to nowhere, they should tell the family, “We talked about futility, and now we’re there. So we’re going to turn the circuit off tomorrow.”

“It’s extremely discourteous to the family to ask the family what to do,” he said.

At Cedars-Sinai Medical Center in Los Angeles — where patients with poor chances of survival were being put on ECMO, and families were getting conflicting messages about the potential benefit — staff launched an improvement effort that has created more consensus and consistency around appropriate ECMO care, according to Dr. Michael Nurok, medical director of the cardiac surgery ICU.

At the University of Southern California’s Keck Hospital, every family of an ECMO patient meets weekly with palliative care and other clinicians to talk about goals of care — conversations that have been “transformative” for families, said Dr. Sunita Puri, medical director of palliative medicine and supportive care.

In Boston, Dr. Daniela Lamas, a critical care doctor at Brigham and Women’s Hospital, said she has seen ECMO’s promise and its limitations.

“With every escalation and fancy machine comes a lot of hope,” Lamas said. “It’s really hard to temper that hope with the realities that with each new thing comes a host of ethical questions and dilemmas.”

ECMO, she said, is “a fantastic example of ‘just because you can, doesn’t mean you should.’”

Categories: Health Care

Texas Is Latest State To Attack Surprise Medical Bills

Kaiser Health News - 36 min 40 sec ago

Texas is now among more than a dozen states that have cracked down on the practice of surprise medical billing.

Texas Gov. Greg Abbott, a Republican, signed legislation Friday shielding patients from getting a huge bill when their insurance company and medical provider can’t agree on payment.

The bipartisan legislation removes patients from the middle of price disputes between a health insurance company and a hospital or other medical provider.

“We wanted to try to take the patients — get them out of the middle of it, because really it’s not their fight,” said Republican state Sen. Kelly Hancock, the bill’s author.

Under the new law, insurance companies and medical providers can enter into arbitration to negotiate a payment — and state officials would oversee that process.

Surprise medical billing typically happens when someone with health insurance goes to a hospital during an emergency and that hospital is out-of-network. It also occurs if a patient goes to an in-network hospital and their doctors or medical providers are not in-network. Sometimes insurance companies and medical providers won’t agree on what’s a fair price for that care and patients end up with a hefty medical bill.

Consumer advocates in the state have urged lawmakers to do more to help Texans saddled with surprise medical bills.

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Drew Calver is among the many Texans who have dealt with a surprise bill in the past few years. Calver, a high school history teacher in Austin, had a heart attack in 2017. He was rushed to the closest hospital by a friend that day, and doctors implanted stents to save his life.

Even though he had health insurance that paid the hospital more than $55,000 for his care, Calver ended up with a $109,000 bill. Calver and his wife, Erin, fought with the hospital and the insurance company for months with little success.

The Calvers eventually turned to the press. Last summer, he told his story to the “Bill of the Month” investigation from NPR and Kaiser Health News. “CBS This Morning” also covered the story. Shortly afterward, his bill was slashed to just $332. Erin Calver said she has seen her family’s story strike a chord.

“For whatever reason, people could relate to us — and be scared that maybe it could happen to them,” she said.

Drew Calver said he encounters many people who worry about the issue.

“The doctor that put my stents in — he either just had a baby or is about to have a baby — and he was saying that, ‘Yeah that could happen to me, too!’” Calver said.

In fact, getting a steep hospital bill is something many Americans call their biggest financial fear.

More From Our Bill Of The Month Series

“Polling shows us that the top household pocketbook concern for consumers is a surprise medical bill,” said Stacey Pogue with the Center for Public Policy Priorities, a think tank that analyzes health and economic issues in Texas. “And that’s actually pretty shocking that consumers will say they are more worried about their ability to afford a surprise medical bill than their health insurance premiums [and] their really high deductibles.”

Last year, a Kaiser Family Foundation poll found that 67% of people worry about unexpected medical bills — a larger share than those who say they worry about prescription drug costs or basic necessities such as rent, food and gas. (KHN is an editorially independent program of the foundation.)

Pogue said that’s a big reason why lawmakers in the state took the issue seriously and passed legislation that she said is now one of the strongest state protections she has seen.

“It is as strong or stronger than any of the protections in the country,” Pogue said.

In addition to Texas, neighboring states Colorado and New Mexico also passed legislation in 2019 to address the problem of surprise out-of-network bills. The Commonwealth Fund’s most recent report on the issue found about half of states offer some legal protections from surprise bills, but only six states had laws that provide “comprehensive” consumer protections similar to those just passed in Texas.

Texas’ new surprise bill law officially takes effect Sept. 1, 2020.

Hancock said the fight over who pays disputed bills will be back where it belongs: with insurance companies, leaving the hospitals, doctors and labs to focus on providing medical care.

“It was just time to get the patient out” of the middle of disputed bills, Hancock said.

Instead, when a hospital and insurer can’t agree on a price, the two parties will have to work it out — without ever billing the patient.

“There is still the ability to negotiate,” Hancock said. “You didn’t have government determining what the price was or determining what the settlement was.”

But not all Texans will be protected by the new law. The Texas law does not apply to people who work for large employers whose plans are regulated by the federal government. In Texas, federally regulated plans account for roughly 40% of the state’s health insurance market.

In fact, Drew Calver would have been exempt from the state’s protections because until recently he had a self-funded health plan regulated by the federal government. However, Drew is now part of wife Erin’s health plan, which will be subject to these new protections.

Pogue said people who have federally regulated health plans will be protected only if Congress acts. She predicted the state’s action will spur federal lawmakers.

“Texas passing a bill will really help on that front,” she said. “There were five states, I think, in 2019 that passed bills that fully protected consumers — and every nudge like that is going to help Congress move.”

Texas lawmakers passed separate legislation that could help Texans with federally regulated plans. Senate Bill 1037 prevents a surprise medical bill from affecting someone’s credit, regardless of what health insurance plan they have.

Congressional leaders have said they are working on coming up with a fix for people across the country with federally regulated plans. President Donald Trump also recently held an event at the White House, with Drew and Erin Calver standing by his side, announcing his administration’s support for banning surprise medical billing in the country.

During a U.S. House Ways and Means Health subcommittee meeting in May, members discussed ways to ban the practice of surprise medical billing.

The committee’s chairman, Austin Democrat Lloyd Doggett, said that “federal action is essential” to addressing the issue for many Americans with federally regulated plans. He said he plans to continue to push for legislation that will “finally offer some relief to patients.” However, no legislation has been passed, yet.

During his opening statements, Doggett said there is a bipartisan desire to shield patients from surprise bills, but “conflict remains over how to resolve insurer-provider disputes.”

This story is part of a partnership that includes KUT, NPR and Kaiser Health News.

Categories: Health Care

Democratic Voters Want To Hear Candidates’ Views On Health, But Priorities Vary

Kaiser Health News - 2 hours 31 min ago

With the first Democratic debates a week away, health care is the top issue the party’s voters say they want candidates to address, according to a poll released Tuesday.

But what they mean by that varies widely.

Nearly 9 out of 10 Democrats or Democratic-leaning independents said it is very important for candidates to discuss health issues. But 28% said they want candidates to focus on “lowering the amount people pay for health care,” and about 18% said Democrats should talk about “increasing access to health care,” the Kaiser Family Foundation poll reported. (Kaiser Health News is an editorially independent program of the foundation.)

That divide extends to specific health care proposals, mirroring the split on the issue among Democratic politicians. About 16% of the voters leaning Democratic said the party should discuss “protecting the [Affordable Care Act] and protections for people with pre-existing conditions,” while about 15% said they want candidates to talk about “implementing a single-payer or Medicare-for-all system.”

That figure reflected an increase in the number of Americans who name “Medicare for All” as a priority, noted Ashley Kirzinger, a KFF polling expert. Six months before the 2018 midterm elections, only 4% of Democrats or Democratic-leaning independents said they wanted candidates to talk about single-payer.

“We’re expecting to hear candidates talk about it because individuals are talking about it,” she said.

The poll also revealed that voters are unclear how extensively Medicare for All would revamp the American health care system.

For instance, while most voters — Democrats, Republicans and independents — said they figured a tax increase would be needed to finance Medicare for All, more than 50% of all respondents said people who get private health insurance through work could keep it, that people who buy their own coverage would retain it, and that both individuals and employers would keep paying health insurance premiums. There were sharp differences in these categories, with Republicans much more likely to expect major changes in the health system under a Medicare for All system.

The flagship single-payer legislation — spearheaded by Sen. Bernie Sanders (I-Vt.), who is one of the 2020 Democratic presidential candidates — would eliminate insurance premiums, as well as most employer-sponsored or privately purchased health plans. (It’s unclear how much Medicare for All would cost, though the Congressional Budget Office has noted that “government spending on health care would increase substantially.”)

The disconnect may be the result of voters not understanding or knowing the details of the health care proposals being put forth, Kirzinger said. But it also could be that voters are skeptical of how much lawmakers would actually change the American system.

“It’s telling that a majority think large portions of the current system would stay,” she said.

The poll was conducted May 30-June 4 among about 1,200 people, of whom about 1,000 are registered voters, and 524 are either Democrats or Democratic-leaning independents. It has a margin of error of +/-3 percentage points for issues pertinent to every respondent, and of +/-4 percentage points for those regarding only registered voters. For Democrats and Democratic-leaning independents only, the margin of error is +/-5 percentage points.

Categories: Health Care

Abortion Rights Supporters, Opponents Turn Out For State House Debate Over ROE Act

CommonHealth (WBUR) - Mon, 06/17/2019 - 2:40pm
The bill would allow for abortions after 24 weeks in cases of diagnosed lethal fetal anomalies, and would also get rid of parental consent requirements for teens seeking an abortion.
Categories: Health Care

Congress.gov New, Tip and Top for June 2019

In Custodia Legis - Mon, 06/17/2019 - 2:36pm

Earlier this month, Margaret shared the news that Congress.gov now has enhanced navigation for member profile pages.

With this month’s release, the display for errata associated with committee reports has been enhanced. The Congress.gov glossary defines errata as “lists of errors in congressional publications. The corrections are printed on sheets, or pages. The errata sheets are usually tipped into the original document.” When a user performs a search that includes a committee report for which errata has been issued, the list of results will display the errata as a link associated with the report. After the user arrives on the committee report detail page, the errata is available on a tab next to the text of the report.

A list of results displaying errata associated with a committee report on Congress.gov.

A committee report detail page displaying errata on a separate tab in Congress.gov.

Enhancements for June 2019

Enhancement – Committee Reports – Search Results

  • Committee Report search results display a link to errata for any report for which one has been issued.

Search Tip

Adrienne brings us the latest Congress.gov Search Tip:

Find details of upcoming committee meetings on the Congress.gov homepage. Learn more.

Most-Viewed Bills

Below are the most-viewed bills on Congress.gov for the week of June 9, 2019.

1. H.R.6 [116th] American Dream and Promise Act of 2019 2. H.R.1044 [116th] Fairness for High-Skilled Immigrants Act of 2019 3. H.R.5 [116th] Equality Act 4. H.R.2157 [116th] Additional Supplemental Appropriations for Disaster Relief Act, 2019 5. H.R.5428 [116th] Stand with UK against Russia Violations Act 6. H.R.38 [116th] Concealed Carry Reciprocity Act of 2019 7. S.386 [116th] Fairness for High-Skilled Immigrants Act of 2019 8. H.R.1994 [116th] Setting Every Community Up for Retirement Enhancement Act of 2019 9. H.R.1 [116th] For the People Act of 2019 10. H.R.2820 [116th] Dream Act of 2019

Please share any comments below or submit your feedback on Congress.gov.

Categories: Research & Litigation

License Revoked From Facility Where Incapacitated Woman Was Raped Following Reports Of Maggots Found On Resident

Kaiser Health News - Mon, 06/17/2019 - 8:43am
Arizona state officials said they will seek a revocation of Hacienda's license based on findings from a recent survey and an "extremely disturbing incident involving inadequate patient care" that was reported this week. Other news on quality in care facilities and hospitals comes out of Minnesota, North Carolina, Georgia, Texas and Ohio.
Categories: Health Care

State Highlights: California Explores Use Of ‘Digital Fire Alarm’ For Managing Mental Health Crises; Complex Legal Theories Ground Flint Water Case To A Halt For Now

Kaiser Health News - Mon, 06/17/2019 - 8:43am
Media outlets report on news from California, Michigan, New York, Alabama, Minnesota, Tennessee, Florida, Connecticut, Louisiana, Arizona, Virginia, Colorado, Washington, Connecticut and Maine.
Categories: Health Care

Firefighters Diagnosed With Occupation Cancer Often Left Hanging By The Very Cities They Protected

Kaiser Health News - Mon, 06/17/2019 - 8:43am
Firefighters these days are more likely to die of cancer than in the blazes themselves. But health coverage plans haven't adapted to that reality. "My city's workers' comp carrier initially flat-out said, 'We don't cover cancer,'" said firefighter Patrick Mahoney. He appealed his case and won, twice, but then the city of Baytown, Texas, sued him to get the decision reversed.
Categories: Health Care

Fight To Add Restrictions To Vaccine Exemptions Pits Neighbor Against Neighbor, Paralyzes Statehouses Across Country

Kaiser Health News - Mon, 06/17/2019 - 8:43am
Even in the midst of the worst measles outbreak in decades there's still voracious push back against banning exemptions. So far this year, only two states — Maine and New York — have successfully outlawed all exemptions except those granted for medical reasons. Meanwhile, public health officials are eyeing the up-coming summer-camp season with trepidation.
Categories: Health Care

IBM Agrees To $14.8M Settlement Over Botched Rollout Of Maryland’s Health Law Exchanges In 2013

Kaiser Health News - Mon, 06/17/2019 - 8:43am
The online marketplace had crashed the first day in a very public black mark against then-Gov. Martin O’Malley. There were similar embarrassments around the country, as many state-run exchange websites failed to work properly. But Maryland’s site was among the worst.
Categories: Health Care

Federal Court Rejects Trump Administration’s Ban On Undocumented Teens In U.S. Custody Seeking Abortions

Kaiser Health News - Mon, 06/17/2019 - 8:43am
The policy effectively served as a blanket ban on abortion that was inconsistent with Supreme Court precedents saying the government can’t unduly burden a woman’s right to choose to terminate a pregnancy, the U.S. Court of Appeals for the District of Columbia Circuit wrote in a 2-1 ruling on Friday. The court upheld the block on the policy.
Categories: Health Care

Although Trump Administration Has Fallen Short Of Scraping Health Law, The Changes Its Made Have Reshaped Marketplace

Kaiser Health News - Mon, 06/17/2019 - 8:43am
The cumulative effect of the Trump administration's rules could erode a core principle of the health law: ensuring that people can rely on their health insurance if they get sick, and to spread the costs of illness widely. The most recent change gives employers more flexibility to steer tax-exempt dollars to employees for health care.
Categories: Health Care

In Unorthodox Proposal, Every City, Town And County In U.S. Could Receive Money In Sweeping Opioid Settlement

Kaiser Health News - Mon, 06/17/2019 - 8:43am
Right now, 1,650 municipalities and counties are eligible for compensation in a sweeping opioid court case being overseen by a judge in Ohio. The unique proposal made on Friday would expand that number to about 24,500. The goal behind this proposal is to sweeten the incentive for the defendants to negotiate a settlement in earnest, something they have largely resisted. If all municipalities are included in a settlement, the reasoning goes, these companies would not have to fear future lawsuits from local governments.
Categories: Health Care

Looking For New Answers To Aging Well: What Bats In Belfries, Marmosets In Mountains Might Tell

Kaiser Health News - Mon, 06/17/2019 - 6:56am
While animals have long been studied in medical research, a new wave of researchers is looking for different answers. “The goal isn’t to increase the number of 120-year-olds who are living in nursing homes. We want more 80- and 90-year-olds who are living independently,” says Corinna Ross, a primatologist at the Texas Biomedical Research Institute. More aging news reports on grip strength, defining "old" and the power of laughter.
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First Edition: June 17, 2019

Kaiser Health News - Mon, 06/17/2019 - 6:29am
Today's early morning highlights from the major news organizations.
Categories: Health Care

A Year After Spinal Surgery, A $94,031 Bill Feels Like A Back-Breaker

Kaiser Health News - Mon, 06/17/2019 - 5:00am

Spinal surgery made it possible for Liv Cannon to plant her first vegetable garden.

“It’s a lot of bending over and lifting the wheelbarrow and putting stakes in the ground,” the 26-year-old said as she surveyed the tomatillos, cherry tomatoes and eggplant growing in raised beds behind her house in Austin, Texas. “And none of that I could ever do before.”

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For as long as she could remember, Cannon’s activities were limited by chronic pain and muscle weakness.

“There was a lot of pain in my legs, which I can now recognize as nerve pain,” she said. “There was a lot of pain in my back, which I thought was, you know, just something everybody lived with.”

Cannon saw many doctors over the years. But they couldn’t explain what was going on. She’d pretty much given up on finding an answer for her pain until her fiancé, Cole Chiumento, pushed her to try one more time.

“It never improved, it never got better,” Chiumento said. “That just didn’t sound right to me.”

So about two years ago, Cannon went to a specialist, who ordered a scan of her spine. A few days later, her phone rang.

“We found something on your MRI,” a voice said.

The images showed that Cannon had been born with diastematomyelia, a rare disorder related to spina bifida. It causes the spinal cord to split in two.

In Cannon’s case, the disorder also led to a tumor that trapped her spinal cord, causing it to stretch as she grew.

In December 2017, a neurosurgeon opened her spinal column and operated for several hours, freeing the cord.

“I think it was day three after my surgery I could feel the difference,” Cannon said. “There was just a pain that wasn’t there anymore.”

As she recovered, Cannon saw lots of huge medical bills go by. They were all covered by her insurance plan. Almost a year had passed since the operation.

Then a new bill came.

Cannon lived with chronic pain and debilitating muscle weakness until she was 24, when Cole Chiumento, who is now her fiancé, encouraged her to try once more to find a diagnosis. “Cole kept pushing me and saying, ‘This isn’t normal. This isn’t normal,’” Cannon says.(Julia Robinson for KHN)

Patient: Liv Cannon, 26, of Austin, Texas. At the time of her surgery, she was a graduate student insured with Blue Cross and Blue Shield of Texas through her job at the University of Texas.

Total bill: $94,031 for neuromonitoring services. The bill was submitted to Blue Cross and Blue Shield of Texas, which covered $815.69 of the amount and informed her she was responsible for the balance. The insurer covered all of Cannon’s other medical bills, which came to more than $100,000, including those from the hospital, surgeon and anesthesiologist.

Service provider: Traxx Medical Holdings LLC, an Austin company that provides neuromonitoring during spinal surgery. Neuromonitoring uses electrical signals to detect when a surgeon is causing damage to nerves.

Medical service: Cannon was born with a rare spinal condition that had caused chronic pain and muscle weakness since she was a child. In December 2017, she had successful spinal surgery to correct the problem. Her surgeon requested neuromonitoring during the operation.

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What gives: Neuromonitoring made sense for the type of surgery Cannon had. The bill did not. Cannon should have been warned long before her surgery that the neuromonitoring company would be an out-of-network provider whose fees might not be covered by her insurer.

At first, she was baffled by the billing information Blue Cross sent her. “It was one of those things from the insurance company that says this is the amount we cover and this is the amount you might owe your provider,” she said, referring to her explanation of benefits.

The statement listed four separate charges from the day of her surgery. Each was described as a “diagnostic medical exam.” Together, they came to $94,031.

Blue Cross said the covered amount was $815.69 — minus a $750 deductible and $26.27 for coinsurance — and informed Cannon she might have to pay the balance: $93,991.58.

“I was shocked,” she said. Chiumento was outraged.

“As soon as I saw that, I thought it was a scam,” he said.

The charge came from Traxx Medical Holdings LLC, an Austin company. Traxx did not respond to emails, phone calls and a fax seeking comment on the charge.

The company’s website shows that Traxx provides a service called intra-operative neuromonitoring, which evaluates the function of nerves during surgery. The goal is to help a surgeon avoid causing permanent damage to the nervous system.

There is an ongoing debate about whether neuromonitoring is needed for all spinal surgery. But it is standard for a complicated operation like the one Cannon had, said Rich Vogel, president of the American Society of Neurophysiological Monitoring.

Cannon was diagnosed with diastematomyelia, a rare disorder related to spina bifida, and had surgery in December 2017 to correct the problem. Most of the cost of the surgery was covered by her insurance with Blue Cross and Blue Shield of Texas. But more than $93,000 for out-of-network neuromonitoring services was not.(Julia Robinson for KHN)

On the other hand, a $94,000 charge for the service can’t be justified, Vogel said.

“You’re not going to meet anybody who believes that a hundred thousand dollars or more is reasonable for neuromonitoring,” Vogel said.

Most neuromonitoring companies charge reasonable fees for a valuable service and are upfront about their ownership and financial arrangements, he said. But some companies are greedy and submit huge bills to an insurance company, hoping they won’t be challenged, he added.

Even worse, “some neuromonitoring groups charge excessive fees in order to gain business by paying the money back to surgeons,” Vogel said.

Last year, Vogel’s group published a position statement condemning these “kickback arrangements” and other unethical business practices.

It is unclear whether Traxx has any financial arrangements with surgeons. Cannon’s surgeon did not respond to requests for comment.

The size of the fee for Cannon’s monitoring was only part of the problem. The other part was that Traxx — unlike her hospital, doctor and anesthesiologist — had no contract with Blue Cross and Blue Shield of Texas. As an out-of-network provider, the company could set its fees and try to collect from Cannon any amount it didn’t get from her insurer.

Blue Cross and Blue Shield of Texas said it doesn’t comment on problems affecting individual members. But the insurer did offer a general statement by email about the problem:

“Unfortunately, non-contracted providers can expose our members to significantly greater out-of-pocket costs. These charges often have no connection to underlying market prices, costs or quality. If given the opportunity, we will try to negotiate with the provider to reduce the cost.”

One thing working against Cannon is that she is pretty sure that, just before surgery, she signed a paper that authorized the out-of-network neuromonitoring.

More From Our Bill Of The Month Series

“It was 4:30 in the morning and you’re like, ‘OK, let’s get this over with,’” she recalled.

Getting consent in the hospital may be legal, but it’s not reasonable, said Dr. Arthur Garson Jr., who directs the Health Policy Institute at the Texas Medical Center in Houston.

For example, a patient might be having a heart attack, Garson said. “You got chest pain, you’re sweating, sick as you can be, and they hand you a piece of paper and they say, ‘Sign here.’”

The Texas Legislature passed a bill in May to protect patients from the sky-high bills this practice can produce. And Congress is considering similar legislation.

These are small steps in the right direction, Garson said.

“Asking the individual patient to make that decision even when they’re not sick I think is difficult,” he said, “and maybe we ought to think of some better way to do it.”

The Texas legislation is expected to take effect later this year but affects only bills that occur after it becomes law. So that $94,000 figure is never far from Cannon’s mind, even as she and Chiumento plan their wedding.

“Every time I go out and I collect the mail, I’m wondering, ‘Is this the day it’s going to show up and we’re going to have to deal with this?’” she said.

The threat of a $93,000-plus bill causes great anxiety for Cannon and Chiumento. The couple considered calling off their wedding in case they had to start paying off the medical debt. “I think about it every time I go to the mailbox,” Cannon says.(Julia Robinson for KHN)

The Takeaway: Neuromonitoring during complex surgery involving the spine can help prevent inadvertent damage. But monitoring may be unnecessary for lower-risk back operations, like spinal fusion.

It is odd that neuromonitoring is charged as a separate service, rather than part of the spine surgery. Cardiac monitoring is not charged separately during bypass surgery, for example.

When considering spine surgery, ask your doctor whether neuromonitoring will be part of the procedure. If so, will it be billed separately? Try to find out the name of the provider and get an estimate of the cost beforehand.

Check with your insurer to determine if the neuromonitoring provider is within your network and to make sure the estimated charge would be covered.

Bill of the Month is a crowdsourced investigation by Kaiser Health News and NPR that dissects and explains medical bills. Do you have an interesting medical bill you want to share with us? Tell us about it!

Categories: Health Care

Federal Grants ‘A Lifesaver’ In Opioid Fight, But States Still Struggle To Curb Meth

Kaiser Health News - Mon, 06/17/2019 - 5:00am

In his 40 years of working with people struggling with addiction, David Crowe has seen various drugs fade in and out of popularity in Pennsylvania’s Crawford County.

Methamphetamine use and distribution is a major challenge for the rural area, said Crowe, the executive director of Crawford County Drug and Alcohol Executive Commission. But opioid-related overdoses have killed at least 83 people in the county since 2015, he said.

Crowe said his organization has received just over $327,300 from key federal grants designed to curb the opioid epidemic. While the money was a godsend for the county — south of Lake Erie on the Ohio state line — he said, methamphetamine is still a major problem.

But he can’t use the federal opioid grants to treat meth addiction.

“Now I’m looking for something different,” he said. “I don’t need more opiate money. I need money that will not be used exclusively for opioids.”

The federal government has doled out at least $2.4 billion in state grants since 2017 to address the opioid epidemic, which killed 47,600 people in the U.S. that year alone. But state officials noted that drug abuse problems seldom involve only one substance. And while local officials are grateful for the funding, the grants can be spent only on creating solutions to combat opioids, such as prescription OxyContin, heroin and fentanyl.

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According to the most recent data from the Centers for Disease Control and Prevention, 11 states have reported that opioids were involved in fewer than half of their total drug overdose deaths in 2017, including California, Pennsylvania and Texas.

The money is also guaranteed for only a few years, which throws the sustainability of the states’ efforts into question. Drug policy experts said the money may not be adequate to improve the mental health care system. And more focus is needed on answering the underlying question of why so many Americans struggle with drug addiction, they said.

“Even just the moniker, like ‘the opioid epidemic,’ out of the gate, is problematic and incorrect,” said Leo Beletsky, an associate professor of law and health sciences at Northeastern University in Boston. “This was never just about opioids.”

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States received federal funds for opioids primarily through two grants: State Targeted Response and State Opioid Response. The first grant, authorized by the 21st Century Cures Act, totaled $1 billion. The second pot of money, $1.4 billion — approved as part of last year’s omnibus spending bill — sets aside a portion of the funding for states with the most drug poisoning deaths.

For states like Ohio and Pennsylvania, the need was great. Nearly 4,300 and 2,550 residents, respectively, died from opioid-related overdoses in 2017. State officials say the money enabled them to invest significantly in programs like training medical providers on addiction, more access points to treatment and interventions for special populations, like pregnant women. Ohio was awarded $137 million in grants; Pennsylvania, $138.1 million.

The grants also stipulate a minimum amount of money for every state, so even areas with reportedly low opioid-related overdose death rates now have considerable funds to combat the crisis. Arkansas, for example, reported 188 opioid-related deaths in 2017 and received $15.7 million from the federal government.

While 2,199 people in California died from opioid-related causes in 2017, its opioid death rate was one of the 10 lowest in the country. The Golden State received $195.8 million in funding, more than any other state.

“This funding is dedicated to opioids,” said Marlies Perez, a division chief at the California Department of Health Care Services, “but we’re not blindly just building a system dedicated just to opioids.”

Mounting evidence points to a worrisome rise in methamphetamine use nationally. The presence of cheap, purer forms of meth in the drug market coupled with a decline in opioid availability has fueled the stimulant’s popularity. The number of drug overdose deaths involving the meth tripled from 2011 to 2016, the CDC reported. Hospitalizations involving amphetamines — the class of stimulants that includes methamphetamine — are spiking. And it is harder to address. Treatment options for this addiction are narrower than the array available for opioids. In light of the increase in deaths related to other substances, are these grants the best way to fund states’ response to opioids?

Bertha Madras, a professor of psychobiology at Harvard Medical School and a former member of the federal Opioid and Drug Abuse Commission, said the federal government has responded well by tailoring the response to opioids because those drugs continue to kill tens of thousands of Americans per year. But, she said, as more people living with addiction are identified and other drugs rise in popularity, the nation’s focus will need to change.

Beletsky emphasized that the grants are insufficient to support fixes to the mental health care system, which must respond to patients living with an addiction of any kind.

People addicted to a particular substance typically use other drugs as well. Controlling addiction throughout a person’s life can be akin to “whack-a-mole,” said Dr. Paul Earley, president of the American Society of Addiction Medicine, because they may stop using one substance only to abuse another. But specific addictions may also require specific treatments that cannot be addressed with tools molded for opioids, and the appropriate treatment may not be as available.

“I think we have to really begin to self-examine why this country has so much substance use to begin with,” Madras said.

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