A severe shortage of inpatient care for people with mental illness is amounting to a public health crisis, as the number of individuals struggling with a range of psychiatric problems continues to rise.

The revelation that the gunman in the Sutherland Springs, Texas, church shooting escaped from a psychiatric hospital in 2012 is renewing concerns about the state of mental health care in this country. A study published in the journal Psychiatric Servicesestimates 3.4 percent of Americans — more than 8 million people — suffer from serious psychological problems.

The disappearance of long-term-care facilities and psychiatric beds has escalated over the past decade, sparked by a trend toward deinstitutionalization of psychiatric patients in the 1950s and ’60s, says Dominic Sisti, director of the Scattergood Program for Applied Ethics of Behavioral Health Care at the University of Pennsylvania.

“State hospitals began to realize that individuals who were there probably could do well in the community,” he tells Here & Now‘s Jeremy Hobson. “It was well-intended, but what I believe happened over the past 50 years is that there’s been such an evaporation of psychiatric therapeutic spaces that now we lack a sufficient number of psychiatric beds.”

A concerted effort to grow community-based care options that were less restrictive grew out of the civil rights movement and a series of scandals due to the lack of oversight in psychiatric care, Sisti says. While those efforts have been successful for many, a significant group of people who require structured inpatient care can’t get it, often because of funding issues.

A 2012 report by the Treatment Advocacy Center, a nonprofit organization that works to remove treatment barriers for people with mental illness, found the number of psychiatric beds decreased by 14 percent from 2005 to 2010. That year, there were 50,509 state psychiatric beds, meaning there were only 14 beds available for nearly 100,000 patients.

“Many times individuals who really do require intensive psychiatric care find themselves homeless or more and more in prison,” Sisti says. “Much of our mental health care now for individuals with serious mental illness has been shifted to correctional facilities.”

The percentage of people with serious mental illness in prisons rose from .7 percent in 1880 to 21 percent in 2005, according to the Center for Prisoner Health and Human Rights.

Many of the private mental health hospitals still in operation do not accept insurance and can cost upwards of $30,000 per month, Sisti says. For many low-income patients, Medicaid is the only path to mental health care, but a provision in the law prevents the federal government from paying for long-term care in an institution.

As a result, many people who experience a serious mental health crisis end up in the emergency room. According to data from the National Hospital Ambulatory Medical Care Survey, between 2001 and 2011, 6 percent of all emergency department patients had a psychiatric condition. Nearly 11 percent of those patients require transfer to another facility, but there are often no beds available.

“We are the wrong site for these patients,” Dr. Thomas Chun, an associate professor of emergency medicine and pediatrics at Brown University, told NPR last year. “Our crazy, chaotic environment is not a good place for them.”

Most hospitals are unable to take care of people for more than 72 hours, Sisti explains, so patients are sent back out into the world without adequate access to treatment.

In order to bridge the gap between hospital stays and expensive community-based care options, Sisti argues for “a continuum of care that ranges from outpatient care and transitional-type housing situations to inpatient care.”

While President Trump and others have claimed a connection exists between mental illness and the rise in gun violence, most mental health professionals vehemently disagree.

“There is no real connection between an individual with a mental health diagnosis and mass shootings. That connection according to all experts doesn’t exist,” says Bethany Lilly of the Bazelon Center for Mental Health Law.

Sisti says the stigma around mental health is “systematized” in our health care system, more so than in the public view.

Health care providers are “rather leery about these individuals because these people are, often at least according to the stereotype, high-cost patients who maybe are difficult to treat or noncompliant,” he says. “I think the stigma that we should be really focused on and worried about actually emerges out of our health care system more than from the public.”

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As President Trump talked tax overhaul on Capitol Hill Tuesday, Arkansas patient advocate Andrea Taylor was also meeting with lawmakers and asking them to save a corporate tax credit for companies that develop drugs for rate diseases.

Taking the credit away, Taylor said, “eliminates the possibility for my child to have a bright and happy future.”

Taylor, whose 9-year-old son, Aiden, has a rare connective tissue disorder, spoke as part of a small rally organized this week by the National Organization for Rare Disorders — the nation’s largest advocacy group for patients with rare diseases.

Earlier this month, House Republicans proposed eliminating the orphan drug tax credits, which Congress passed as part of a basket of financial incentives for drugmakers in the 1983 Orphan Drug Act. The law, intended to spur development of medicines for rare diseases, also gives seven years of market exclusivity for drugs that treat a specific condition that affects fewer than 200,000 people.

The Senate Finance Committee, led by Sen. Orrin Hatch, R-Utah, put the tax credit back into the tax legislation. After some negotiations, the committee settled on reducing credit to 27.5 percent of the costs of preapproved clinical research, compared with the current 50 percent. The committee also restored a provision that would have eliminated any credits for drugmakers who repurpose a mass-market drug as an orphan.

Today, many orphan medicines treat more than one condition and often come with astronomical prices. Many of the medicines aren’t entirely new, either. A Kaiser Health News investigation, which was also aired and published by NPR, found that more than 70 of the roughly 450 individual drugs given orphan status were first approved for mass-market use, including cholesterol blockbuster Crestor, Abilify for psychiatric conditions, cancer drug Herceptin and rheumatoid arthritis drug Humira, which for years was the best-selling medicine in the world.

More than 80 other orphans won Food and Drug Administration approval for more than one rare disease and, in some cases, multiple rare diseases, the KHN investigation showed.

“As with any major reform, tough choices have to be made,” a Hatch spokesperson wrote in an emailed statement, adding that the senator will continue to work “to make the appropriate policy decisions” to deliver a comprehensive tax overhaul.

Hatch, who is a member of a rare-disease congressional caucus, received $102,600 in campaign contributions from pharmaceutical and related trade group political action committees in the first half of 2017, making him the top recipient of pharmaceutical cash in the Senate.

If the Senate provision remains untouched, reducing the tax credit would save the federal government nearly $30 billion over a decade, according to a markup of the bill released late last week.

Orphan drug development has become big business in recent years and advocates as well as critics of the industry say tax credits have been an important motivation for companies. Orphan drugs accounted for 7.9 percent of total U.S. drug sales in 2016, according to a report released by QuintilesIMS and NORD.

Because patient populations for rare-disease drugs are relatively small, companies often charge premium pricing for the medicines. EvaluatePharma, a company that analyzes the drug industry, estimates that among the top 100 drugs in the U.S. the average annual cost per patient for an orphan drug was $140,443 in 2016. Giant pharmaceutical companies such as Celgene, Roche, Novartis, AbbVie and Johnson & Johnson have led worldwide sales in the orphan market, according to EvaluatePharma’s 2017 Orphan Drug Report.

Jonathan Gardner, U.S. news editor for EvaluatePharma, said the orphan drug tax credit is “probably the most important incentive for developing an orphan drug.” Cutting the credit will force even the large companies to question development of drugs for rare diseasess, Gardner said.

Dr. Aaron Kesselheim, an associate professor of medicine at Harvard Medical School, has been critical of the Orphan Drug Act’s incentives and of companies taking advantage of the law’s financial incentives for profit. But he warned against rushing to eliminate the tax credit.

“We need to think about ways we can improve the Orphan Drug Act and stop people from gaming the system and exploiting it,” Kesselheim said. But there “are a lot of rare diseases that don’t have treatments. So, we need to be careful in making changes.”

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Advocates for the National Organization of Rare Disorders rallied on Capitol Hill and then visited a couple of dozen lawmakers to argue for the orphan drug tax credit.

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Sarah Jane Tribble/KHN

The battle over the tax credit is the latest controversy for the FDA’s orphan drug program. FDA Commissioner Scott Gottlieb announced a “modernization” plan for the agency this summer, closing a pediatric testing loophole and eliminating a backlog of corporate applications for orphan drug status. And, this week, the agency confirmed that Dr. Gayatri Rao, director for the Office of Orphan Products Development, is leaving.

Meanwhile, the Government Accountability Office confirmed this month that it recently launched an investigation of the orphan drug program. The GAO’s review was sparked by a letter from top Republican Sens. Hatch, Chuck Grassley, R-Iowa, and Tom Cotton, R-Ark., asking the agency to investigate whether drugmakers “might be taking advantage” of the drug approval process.

The pharmaceutical industry has had a muted response to the tax bill, which includes a corporate tax cut. The powerful industry lobbying group PhRMA said it is pleased Congress is looking at overhauling the tax code but “encourages policymakers to maintain incentives” for rare diseases. BIO, the Biotechnology Innovation Organization that represents biomedical companies, said it was “gratified” the Senate committee chose to partially retain the credit but would prefer to keep the existing incentive.

On Tuesday, NORD’s rally showed no signs of support from the pharmaceutical companies and when asked about their input, NORD President Peter Saltonstall said there was no industry involvement. The group — wearing bright-orange shirts that read “Save the Orphan Drug Tax Credit” — planned to meet this week with a couple of dozen lawmakers, including Grassley, who is a member of the Senate Finance Committee. NORD, like many patient advocacy groups, receives funding from pharmaceutical companies but the organization’s leaders say the industry does not have members on the board and does not dictate how general donations are spent.

NORD leaders said after the rally that they are open to discussions about reviewing the tax credit, but the overall law is working as intended. “We’re here to have that conversation; we’re ready to have that conversation,” said Paul Melmeyer, director of federal policy for NORD. “Sadly, that’s not the conversation we are having today.”

Abbey Meyers, a founder of NORD and the leading advocate behind passing the initial 1983 law, said she fears the high cost of the drugs will make it impossible to sustain the orphan drug program. Now retired, Meyers said she has followed the law’s success over the years and believes the tax credit should not be changed.

“There are other things that have happened since the law was passed where there wasn’t any logic to what they did,” Meyers said, adding “because somebody went to a senator and they put into the law.”

Kaiser Health Newsis a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundationthat is not affiliated with Kaiser Permanente.

KHN’s coverage of prescription drug development, costs and pricing is supported by the Laura and John Arnold Foundation. Dr. Aaron Kesselheim’s work is also supported by the foundation.

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An investigation by New York’s attorney general found that the Brooklyn Hospital Center improperly billed dozens of patients for the cost of forensic rape exams.

The exams, known as rape kits, are required by state law to be free of cost to patients. Attorney General Eric Schneiderman’s office said Tuesday that between January 2015 and February 2017, the hospital conducted 86 forensic rape exams. It billed the patient or her insurance plan in 85 of those cases, without revealing that the exam could be free.

Schneiderman said he launched the investigation after one victim complained that she had been billed seven times for a forensic rape exam performed at the hospital’s emergency room. After receiving the initial bill, the patient contacted a victim’s assistance organization, which reached out to the state’s Office of Victim Services, which told the hospital that the state should be billed. A month later, the patient got a bill from a collection agency.

“These kits are used on what is undoubtedly one of the worst days of a survivor’s life,” Schneiderman told The Associated Press. “The absolute last thing they should have to worry about is how they’ll pay for their care at the hospital. But we have found contrary to law that way too often they do have to worry.”

Schneiderman said the state had reached a settlement with the Brooklyn hospital, which dictates that the hospital maintain a Sexual Assault Victim Policy that prevents improper billing and provide full restitution to those who should not have been billed. He said he had also sent letters to 10 other hospitals in the state, seeking information on their policies.

The Violence Against Women Act, reauthorized by Congress in 2005, requires that the full out-of-pocket costs of sexual assault medical forensic exams be covered by a state or other entity, as a condition of receiving federal grants through a program called STOP. That program provides funding for law enforcement and prosecutions in combating violence against women as well as for victim services. Victims cannot be required to file law enforcement reports to receive free exams.

New York is not the only place where victims have been improperly billed. CBS News reported in 2014 that victims in 13 states said they had been billed for medical services related to a sexual assault. A victims’ advocate organization in Chicago told CBS it got as many as six calls a month from rape victims who had been wrongly billed.

In 2014, the Urban Institute published a study on how the funding for sexual assault exams is handled by states. “In practice, each state (or local jurisdiction, in the case of non state-level paying systems) decides what it will cover as part of the free exam,” the report found. “Some states cover only what is required by federal mandate, and other states provide more free services to victims.”

The report’s authors explain that VAWA 2005 dictates that such exams should, at minimum, include:

• Examining physical trauma
• Determining penetration or force
• Interviewing the patient
• Collecting and evaluating evidence

But the victim may require medical services for treatment relating to an injury, pregnancy or sexually transmitted infections. Whether and how those expenses are covered varies by state, and some victims are billed for the additional services.

The Urban Institute study found that crime victim compensation funds were the primary funding sources for the exams in most states, rather than federal STOP grants.

And, the report said, there are issues with using victim compensation funds to pay for rape kits:

“Victim compensation is intended to pay for services that directly benefit victims. … The most common types of expenses compensated are medical and dental services, mental health counseling, lost wages, and funeral or burial expenses. It is clear that the medical services provided in an exam directly benefit victims and are in keeping with the mission of compensation.

“However, some have questioned—through this study and otherwise—whether funds intended to benefit victims should be used to pay for forensic evidence collection intended to build a criminal case. Is forensic evidence collection a benefit to victims, or is it a benefit to the justice system? Victims who have had negative experiences with the justice system might say that it is no benefit to victims at all. No other evidence collection activities (such as autopsies, crime scene processing, and ballistics analysis) are paid for with funds meant for services to victims.”

New York’s Office of Victim Services covers the cost of emergency care for survivors of sexual assault. The attorney general’s office said it did not have details on how the victim services office funded its programs.

Ariel Zwang, CEO of victim assistance organization Safe Horizon, welcomed Schneiderman’s announcement.

“Rape survivors deserve expert and immediate medical care after an assault, including access to a rape kit,” she said in a statement Tuesday. “For so long, survivors and victim advocates fought to change the law so that survivors would not incur the cost of these important exams. We applaud the Attorney General’s office for ensuring enforcement of this law, holding hospitals accountable who have unnecessarily charged for this exam, and standing up for survivors.”

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Two years ago, Margaret O’Neill brought her 5-year-old daughter to Children’s Hospital Colorado because the band of tissue that connected her tongue to the floor of her mouth was too tight. The condition, called being literally “tongue-tied,” made it hard for the girl to make “th” sounds.

It’s a common problem with a simple fix: an outpatient procedure to snip the tissue.

During a preoperative visit, the surgeon offered to throw in a surprising perk. Should we pierce her ears while she is under?

O’Neill’s first thought was that her daughter seemed a bit young to have her ears pierced. Her second: Why was a surgeon offering to do this? Wasn’t that something done for free at the mall with the purchase of a starter set of earrings?

“That’s so funny,” O’Neill recalled saying. “I didn’t think you did ear piercings.”

The surgeon, Peggy Kelley, told her it could be a nice thing for a child, O’Neill said. All she had to do is bring earrings on the day of the operation. O’Neill agreed, assuming it would be free.

Her daughter emerged from surgery with her tongue newly freed and a pair of small gold stars in her ears.

Only months later did O’Neill discover the cost for this extracurricular work: $1,877.86 for “operating room services” related to the ear piercing — a fee her insurer was unwilling to pay.

At first, O’Neill assumed the bill was a mistake. Her daughter hadn’t needed her ears pierced, and O’Neill would never have agreed to it if she had known the cost. She complained in phone calls and in writing.

The hospital wouldn’t budge. In fact, O’Neill said it dug in, telling her to pay up or it would send the bill to collections. The situation was “absurd,” she said.

“There are a lot of things we’d pay extra for a doctor to do,” she said. “This is not one of them.”

Kelley and the hospital declined to comment to ProPublica about the ear piercing.

Surgical ear piercings are rare, according to Health Care Cost Institute, a nonprofit that maintains a database of commercial health insurance claims. The institute could only find a few dozen possible cases a year in its vast cache of billing data. But O’Neill’s case is a vivid example of health care waste known as overuse.

Into this category fall things like unnecessary tests, higher-than-needed levels of care or surgeries that have proven ineffective.

Wasteful use of medical care has “become so normalized that I don’t think people in the system see it,” said Dr. Vikas Saini, president of the Lown Institute, a Boston think tank focused on making health care more effective, affordable and just. “We need more serious studies of what these practices are.”

Experts estimate the U.S. health care system wastes $765 billion annually — about a quarter of all the money that is spent. Of that, an estimated $210 billion goes to unnecessary or needlessly expensive care, according to a 2012 report by the National Academy of Medicine.

ProPublica has been documenting the ways waste is baked into the system. Hospitals throw away new supplies, and nursing homes discard still-potent medication. Drugmakers combine cheap ingredients to create expensive specialty pills, and arbitrary drug expiration dates force hospitals and pharmacies to toss valuable drugs.

We also reported how drug companies make oversize eyedrops and vials of cancer drugs, forcing patients to pay for medication they are unable to use. In response, a group of U.S. senators introduced a bill this month to reduce what they called “colossal and completely preventable waste.”

But any discussion of waste needs to look how health care dollars are thrown away on procedures and care that patients don’t need — and how hard it is to stop it.

Just ask Christina Arenas.

Arenas, 34, has a history of noncancerous cysts in her breasts, so last summer when her gynecologist found some lumps in her breast and sent her for an ultrasound to rule out cancer, she wasn’t worried.

But on the day of scan, the sonographer started the ultrasound, then stopped to consult a radiologist. They told her she needed a mammogram before the ultrasound could be done.

Arenas, an attorney who is married to a doctor, told them she didn’t want a mammogram. She didn’t want to be exposed to the radiation or pay for the procedure. But sitting on the table in a hospital gown, she didn’t have much leverage to negotiate.

So, she agreed to a mammogram, followed by an ultrasound. The findings: no cancer. As Arenas suspected, she had cysts, fluid-filled sacs that are common in women her age.

The radiologist told her to come back in two weeks so they could drain the cysts with a needle, guided by yet another ultrasound. But when she returned she got two ultrasounds: One before the procedure and another as part of it.

The radiologist then sent the fluid from the cysts to pathology to test it for cancer. That test confirmed — again — that there wasn’t any cancer. Her insurance whittled the bills down to $2,361, most of which she had to pay herself because of her insurance plan.

Arenas didn’t like paying for something she didn’t think she needed and resented the loss of control. “It was just kind of, ‘Take it or leave it.’ The whole thing. You had no choice as to your own care.”

Arenas, sure she had been given care she didn’t need, discussed it with one of her husband’s friends who is a gynecologist. She learned the process could have been more simple and affordable.

Arenas complained to The George Washington Medical Faculty Associates, the large Washington, D.C., doctor group that provided her treatment. Her request to have the bill reduced was denied. Then bill collectors got involved, so she demanded a refund and threatened legal action.

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“I was taken advantage of because I was a captive audience,” says Christina Arenas, who felt pressured to agree to tests and procedures she didn’t need for noncancerous cysts in her breasts.

Allison Shelley

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Allison Shelley

She said she never got to speak to anyone. Her demand was routed to an attorney, who declined her request because there was “no inappropriate care.” She also complained to her insurance company and the Washington, D.C. Attorney General’s office, but they declined to help reduce the bill.

Overtreatment related to mammograms is a common problem. The national cost of false-positive tests and overdiagnosed breast cancer is estimated at $4 billion a year, according to a 2015 study in Health Affairs. Some of this is fueled by anxious patients and some by doctors who know that missing a cancer diagnosis can be grounds for a medical malpractice lawsuit. But advocates, patients and even some doctors note the screenings can also be a cash cow for physicians and hospitals.

With Arenas’ permission, we shared her case with experts, including Dr. Barbara Levy, vice president of health policy for the American College of Obstetricians and Gynecologists and three radiologists.

Levy said there is a standard way to treat a suspected breast cyst that’s efficient and cost-effective. If the lump is large, as in Arenas’ case, a doctor should first use a needle to try to drain it. If the fluid is clear and the lump goes away, there is no cause for concern or extra testing. If the fluid is bloody or can’t be drained or the mass is solid, then medical imaging tests can determine whether it’s cancerous.

However, doctors often choose to order imaging tests rather than drain apparent cysts, Levy said. “We’re so afraid the next one might be cancer even though the last 10 weren’t,” she said. “So, we overtest.”

Levy and the radiologists agreed that at least some of Arenas’ care seemed excessive. But their opinions varied, which shows why it can be difficult to reduce unnecessary care. Standards are often open-ended, so they allow for a wide range of practices and doctors have autonomy to take the route they think is best for patients.

The American College of Radiology recommends an ultrasound for a 32-year-old — Arenas’ age at the time of the procedure — with an unidentified breast mass. Mammograms are also an option, but “most benign lesions in young women are not visualized by mammography,” the guidelines state.

Dr. Phillip Shaffer, a radiologist who has practiced for decades in Columbus, Ohio, said he didn’t think Arenas needed the mammogram. “I wouldn’t do it,” he said. “If I did an ultrasound and saw cysts, I’d say, ‘You have cysts.’ In 32-year-olds, the mammogram does almost nothing.”

Dr. Jay Baker, chair of the American College of Radiology breast imaging communications committee, agreed that the ultrasound alone would have “almost certainly” identified the cyst. But, he said, maybe something about the lumps concerned Arenas’ radiologist, so a mammogram was ordered.

None of the radiologists consulted by ProPublica could explain why two ultrasounds on the return visit would be necessary. According to Arenas’ medical records, the practice told one reviewer that two were done to make sure the cysts hadn’t changed.

Shaffer didn’t buy it. “They just billed her twice for one thing,” he said.

Levy, the gynecologist, said it’s “excessive” to do two ultrasounds. And, she said, there was no need to send clear fluid to pathology.

Arenas offered to waive her privacy rights so the practice that provided her treatment could speak to ProPublica. Officials from the practice declined to comment. Her medical records show that in response to reviews by her insurance company and the attorney general’s office, her doctors said the care was appropriate.

Since then, she has her cysts drained without images in her gynecologist’s office for about $350. But Arenas said that on two occasions, she has used a needle at home to do it herself. (Doctors do not recommend this approach.) She admits it was an extreme choice, but at the time, she worried she would be subjected to more unnecessary tests.

“I was taken advantage of because I was a captive audience,” she said.

In a brick-and-glass office park just outside Roanoke, Va., Missy Conley and Jeanne Woodward have battled on behalf of hundreds of patients who believe they’ve been overtreated or overcharged. The two work for Medliminal, a company that challenges erroneous and inflated medical bills on behalf of consumers in exchange for a share of the savings.

The two women excitedly one-up each other with their favorite outrages. How about the two cases involving unnecessary pregnancy tests? One of the patients was 82 — decades past her childbearing years. The other involved a younger woman who no longer had a uterus.

Another case involved an uninsured man who fell off his mountain bike and hurt his shoulder. The first responders pressured him to take an air ambulance to a hospital when it would have been faster for his friends to drive him. He got charged $44,000 for the trip. Such unexpectedly pricey flights — and the aggressive billing that comes with them — have been featured in stories by NPR, The New York Times and The Atlantic.

Medliminal gets dozens of calls a week from consumers who are fed up with the medical system.

Woodward, a nurse and certified medical auditor, regularly sees patients billed for unnecessary lab tests. A man with diabetes may only need his glucose measured, but the doctor may order a bundle of 14 unnecessary tests, she said. The extra tests inflate the tab.

If there is a billing dispute, it can take months of phone calls and emails to get a case resolved, said Conley, who gained an insider’s knowledge during years working for insurance companies.

Patients fighting bills on their own often give up and pay the bill or let it go to collections, she said. “The whole system is broken,” Conley said.

Saini, president of the Lown Institute, said profit is a major driver of overuse.

“Providers are getting constant messages from superiors or partners to maximize revenue,” Saini said. “In this system we have, that’s not a crime. That’s business as usual.”

Patients aren’t true health care consumers because they typically can’t shop by price and they often don’t have control over the care they receive, Saini said. The medical evidence may support multiple paths for providing care, but patients are unable to tell what is or is not discretionary, he said. Time pressure adds urgency, which makes it difficult to discuss or research various options.

“It’s sort of this perfect storm where no one is really evil, but the net effect is predatory,” Saini said.

Once the service or treatment is provided, the bill is on its way, with little forgiveness.

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“We really don’t have good standards and a good discussion going on about who should receive ICU care,” said Dr. Dong Chang at the Harbor-UCLA Medical Center campus in Torrance, Calif.

Jenna Schoenefeld for ProPublica

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Jenna Schoenefeld for ProPublica

In 2015, Dr. Dong Chang, the director of the medical intensive care unit at Harbor-UCLA Medical Center, a public hospital in Los Angeles, decided to see whether the care being delivered in his ICU was appropriate.

Resources were scarce in his ICU, and he suspected it might be possible to manage them better. So, he and his colleagues reviewed the records of all the patients in the unit over the course of a year to see whether the patients might have been either too sick, or too healthy, to benefit from intensive care.

The results shocked them. They determined the care may not have been beneficial to more than half of the patients. “ICU care is inefficient, devoting substantial resources to patients less likely to benefit,” their study, published in the February edition of JAMA Internal Medicine, concluded.

Chang and his team also reviewed the use of intensive care at 94 hospitals in two states, Maryland and Washington, focusing on four common conditions that can lead to treatment in an intensive care unit.

They found wide variation in the types of patients hospitals determined needed intensive care. One hospital put 16 percent of patients with diabetic ketoacidosis, a serious condition that can result in a coma, in intensive care, while another hospital did so with 81 percent of such patients. The range for patients with pulmonary embolisms was from 5 percent to 44 percent, and for those with congestive heart failure, it was 4 percent to 49 percent.

Chang attributes the difference to doctors using intensive care based on their habits, hunches or training. Profit, he said, may also be a motive, but it didn’t appear to be a driving force.

“We really don’t have good standards and a good discussion going on about who should receive ICU care,” Chang said.

The unnecessary intensive care can also be harmful. The study found intensive care patients underwent more invasive procedures, like the insertion of catheters, including central lines, which carry the risk of infection. Overuse of the ICU is bad for patients who don’t need it, Chang said. Survival rates were also no better at the hospitals that used intensive care the most.

Reducing unneeded intensive care stays would save big money. Intensive care costs about $10,000 for a typical stay and accounts for 4 percent of national health care expenditures, according to research cited by Chang’s team.

If the hospitals in Maryland and Washington with the highest rates of intensive care use had behaved more like those with lower use, it would save about $137 million, the study estimated. That is the savings for fewer than 100 hospitals in two states. There are about 4,000 hospitals nationwide, suggesting that reducing unnecessary intensive care use could save billions of dollars a year.

Chang hesitated to call the overuse of intensive care “wasted” health care spending. He said the medical literature calls it “non-beneficial” care, which is maybe a nicer way of saying the same thing.

For O’Neill, her dispute of the fee for her daughter’s ear piercing was a trip into the hell of medical billing.

O’Neill is an attorney, so she knows how to weed through fine print. But it took her untold hours and phone calls to the hospital and her insurance company to root out the issue. The hospital had initially billed her insurer for the $1,877.86 for “operating room services” related to the ear piercing. The company rightly rejected payment for the cosmetic procedure. So, the hospital billed the family, according to her medical and billing records and correspondence.

The surgeon billed the family an additional $110, which O’Neill paid.

The operative report describes the piercing in obscure technical terms: “The bilateral lobules were prepped with betadine and a 18 gauge was used to pierce the left lobule in the planned position … .”

O’Neill said she got nowhere in several conversations with the manager of the hospital’s team that deals with payments directly from consumers. Then in mid-July, O’Neill wrote a letter to the manager explaining that they were at an impasse and urged the hospital to cancel the bill.

In early August, ProPublica contacted the hospital and surgeon to inquire about the ear piercing. The hospital spokeswoman replied in an email that, generally speaking, ear piercings during surgery are rare and only done at the request of a family. (The medical records say O’Neill requested the ear piercing.) It would not result in a separate operating room charge, she wrote.

The spokeswoman’s explanation didn’t jibe with the hospital’s bill, which even listed the billing code for ear piercing. She declined to discuss O’Neill’s case or explain the discrepancy.

In mid-August, the self-pay manager sent O’Neill a letter saying, “the remaining balance of $1,877.86” would be removed “as a one-time courtesy adjustment.”

The manager added that the hospital hadn’t done anything wrong. The account was “correctly documented, coded, charged and billed according to industry standards,” she wrote.

And that’s just the problem. The hospital’s $1,877.86 bill for the ear piercing was within industry standards.

As for O’Neill, she and her daughter had to endure one additional insult. The surgeon’s piercing of one ear was off-kilter so it had to be redone. This time O’Neill had it done at the mall, for about 30 bucks.

ProPublica is a nonprofit newsroom based in New York. You can follow Marshall Allen on Twitter:@marshall_allen. Have you seen examples of wasted health care spending? Share them with Marshallhere.

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In Caguas, south of San Juan, Puerto Rico, Jared Haley is fighting a daily battle at C-Axis, the medical device manufacturer where he’s the general manager. The power has been out at his plant for nearly three months, since Hurricane Irma.

Operating on emergency generators, the plant restarted operations last month and, Haley says, is delivering all its work on schedule. But he’s not happy now with the plant’s condition. Walking into his factory, he laments, “This shop used to look like a doctor’s office.”

Not now. Walking through the plant, the damage from Hurricane Maria is still evident. Hurricane Maria caused extensive roof damage and flooding. Many ceiling panels are missing. A temporary roof installed after the storm is still leaking.

By the time Haley and some of his employees got back days after the storm, heat and humidity had damaged much of his equipment. He says, “We have brand-new, $500,000 pieces of equipment that now look like they’re 100 years old. Everything rusted on them.”

C-Axis makes parts on contract for some of the big medical device companies. It uses its computer operated milling machines to make parts out of titanium, stainless steel and plastic. “This machine makes bone screws and anchors,” he says. In another part of the shop, he examines finished components that will go into a 13-part assembly.

“That assembly is used in bypass surgery for the harvesting of the vein in the leg,” he says.

Because Caguas is in the mountains, cell phone service in the area has remained spotty since Maria. Many of Haley’s employees were hit hard in the storm, and some have left the island. Haley estimates he’s lost more than 10 percent of his workers.

“We’ve been trying to hire in this climate, which is very interesting,” Haley says. “There’s no communication, no phone. How do you get employees? We just made a sign and put it outside that says ‘Now Hiring.’ “

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C-Axis employees came back to work days after Hurricane Maria. The plant has been operating via emergency generators, with no air conditioning available on the factory floor.

Greg Allen/NPR

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Greg Allen/NPR

Across Puerto Rico, dozens of medical device and pharmaceutical manufacturers are facing similar challenges. More than two months after Hurricane Maria, the only power for many of these companies comes from emergency generators. They’re also facing logistical problems and staffing shortages that have left some manufacturers unable to keep up with demand. Because there was a shortage of the saline bags used to inject IV drugs in patients, the FDA recently stepped in and approved imports from overseas facilities.

Another medical device company, Medtronic, has four plants in Puerto Rico. Medtronic’s Fernando Vivanco, senior director of corporate communications, says his company also lost employees and is looking to hire 300 new workers. Medtronic now provides its employees with aid and services never offered before, Vivanco says.

“We’ve gone as far as doing things like providing free meals for our employees, ensuring that they have water and food that they can take home in the evenings,” he says. Medtronic now is offering on-site daycare and even a laundromat for workers.

Maria is expected to have a $55 to $65 million impact on Medtronic’s bottom line. But Vivanco says the storm hasn’t affected the company’s commitment to staying in Puerto Rico. “We have a talented and skilled workforce there,” he says. “And we continue to see a future on the island.”

But after Hurricane Maria, manufacturers in Puerto Rico are now facing what some are calling a potential man-made disaster. It’s a provision in the tax bill that recently passed the House that would impose a 20 percent tax on goods made in Puerto Rico and shipped to the U.S. mainland. Puerto Rico’s Ricardo Rosselló and non-voting representative in Congress, Jenniffer González lobbied hard against that provision. González says she’s received assurances from Republican leaders that if the measure passes the Senate, the part affecting Puerto Rico will be fixed before final passage.

Manufacturing makes up about half of Puerto Rico’s economy. A decade ago, Congress phased out an important tax break that attracted manufacturers, especially pharmaceutical and medical device companies to the island. Since then, many companies have left. If this new provision becomes law, Julio Benitez, with Puerto Rico’s economic development agency, says he worries that many other manufacturers may follow suit.

“They will have to consider seriously their future,” Benitez says. “Because, at the end of the day, we’re talking about money.”

At C-Axis, general manager Haley says the plant is getting a new roof soon and he’s working on an insurance claim so he can replace his damaged equipment. He says he’ll do whatever he can to keep his employees working.

“This is a time of need and I have no interest in not giving it our all,” Haley says. “But it only is going to take a couple of missteps and we won’t have the ability to do that.” He is frustrated with the federal government over the slow pace of recovery.

But Haley is even more upset about the tax provision. “We’re U.S. citizens,” he says, “and our government has failed us.”

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Angelia Soloman watched out the window of her ranch house in northeast Houston as the floodwaters rose up to the windowsills.

She huddled inside with her three adopted children (ages 12 to 15), a nephew and her 68-year-old mother. “They were looking and crying, like, ‘We’re gonna lose everything,’ ” said Soloman. “And I’m like, ‘No, it gonna be OK.’ “

When the water began rushing under the front door, filling up the house like a bathtub, Soloman led her family outside, and plunged into a river of water up to her chest.

The hurricane couldn’t have come at a worse time for the 47-year-old single mother, who was diagnosed with HIV in 2011. Just before the storm, in a troubling sign, the count of her T cells — the cells that HIV kills — had plummeted from the stress of losing her job. She had used her last unemployment check to buy school clothes and supplies that now faced certain ruin in the floodwaters.

“It was like 5 feet of water. We just lost everything. Cars, everything,” said Soloman.

The destruction included her HIV medication. When I met Soloman in Houston, it had been a month since she had taken her last HIV pill. There were just too many crises to contend with — dealing with the Federal Emergency Management Agencyto rebuild her house, finding a car and enrolling her kids in another school district.

Many Houstonians with HIV faced similar problems. The hurricane closed pharmacies and clinics for a week — or longer. Floodwaters ruined drugs. People who fled to other states couldn’t get their prescriptions filled for HIV medicine.

As the days ticked on, many worried the amount of HIV in their blood would increase and become resistant to treatment.

Donnall Walker waited out the storm with his 12 brothers and sisters outside Houston. The 52-year-old former fashion designer left his HIV medication behind. His family’s house hadn’t flooded once in his lifetime and he assumed he would be back home the next day.

A week later, when he finally returned, everything inside was ruined.

“My biggest emotion was racing in the house to check for my medication because I hadn’t had it and it was underwater,” said Walker. “It was in my nightstand and my nightstand was floating.”

Walker went to his pharmacy the day it reopened, but he went nearly two weeks without his HIV drugs.

“On top of all this disaster, I could possibly die and have that burden on top of my family,” he said.

He says he feared for his life — not only from the missed doses but because HIV had weakened his immune system. “I had been in a lot of floodwaters. I didn’t know if I got hepatitis,” Walker said. “I didn’t know what my condition was.”

There are some 25,000 people with HIV and AIDS living Houston and Harris County. Dr. Thomas Giordano, medical director at Thomas Street Health Center, a public clinic that offers HIV services, says it will take months to determine — through a series of blood tests — whether his patients’ viral loads have been affected by the storm.

Giordano says he worries most about his patients who haven’t made it back to the clinic. Hurricane Harvey upended so many lives, scattering people to live with friends or family who may not know their status.

“A lot of people don’t want their friends or extended family to know they have HIV, and so they can’t get the assistance they might need to get to the pharmacy to get a refill or take their medicines with their meals,” said Giordano. “And so a lot of them stay undercover until things are stabilized again.”

Soloman, the single mother who waded through the waters with her family, finally found a ride to the county clinic to refill her HIV prescription.

I ask her where she is headed next. Back to her sister’s house, she says, where she and her kids are living with 16 other relatives until her house is fixed up.

She doesn’t feel relief or even hope, she says. There is still too much to do.

Sarah Varney is a senior national correspondent at Kaiser Health News, a nonprofit health newsroom that is an editorially independent part of the Kaiser Family Foundation.

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