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Hospitals’ Best-Laid Plans Upended By Disaster

It was 3:35 a.m. and flames from a massive Northern California wildfire licked at the back of a Santa Rosa hospital.

Within three hours, staffers evacuated 122 patients to other facilities — something they’d never come close to doing before. Ambulances sped off with some of the sickest patients; city buses picked up many of the rest.

With phone lines charred and communication restricted, doctors and nurses struggled to figure out who was sent where — forced to keep their wits even as some of their own homes burned and their families fled.

This was not exactly covered in their meticulously executed drills and disaster-preparedness videos.

“You never know how you’ll react until it comes your way … until fate taps you on the shoulder,” said Dr. Josh Weil, an emergency medicine physician at Kaiser Permanente in Santa Rosa who led the hospital evacuation operation on Oct. 9.

America’s hospitals were beset by an unusual number of calamities in 2017: The fires that raged in Northern and Southern California; hurricanes that displaced thousands in Houston, Florida and Puerto Rico; the deadliest mass shooting in modern history that killed 58 people and wounded more than 500 others in Las Vegas; and the attack at a Bronx hospital in which a doctor turned a gun on his former colleagues, killing one and injuring six.

Across the country, natural disasters have become more frequent and more deadly; the carnage from mass shootings resembles that on a battlefield. In some cases, these crises are more severe and elaborate than most hospitals — particularly smaller ones — are prepared for, and experts say it is time to bring facilities up to speed.

“The probability that any individual hospital will be involved in an unusual event is increasing,” said Dr. Carl Schultz, professor emeritus of emergency medicine and public health at the University of California-Irvine. “All hospitals are potentially vulnerable,” he said, and “there is more pressure for hospitals to be prepared.”

That’s the case, he added, even though hospitals often lack the resources and funding to upgrade their disaster plans.

In the new year, hospitals that responded to outsized tragedies in 2017 are reassessing their plans in light of their painful experiences. Below are some instructive examples:

Keeping Track Of Patients

In Northern California, staffers from the Kaiser hospital in Santa Rosa rushed to clear out their wards as the ferocious Tubbs Fire approached. (Kaiser Health News, which produces California Healthline, is not affiliated with Kaiser Permanente.)

The original plan was to jot down details from each displaced patient’s identification bracelet so that the hospital could later confirm that patients arrived at other hospitals safely. But with the fire coming fast upon them, it became clear this would take too long, Weil said.

On the fly, one staffer suggested taking photos of patient wristbands with smartphones, he said.

“That was a brilliant idea that really saved us,” Weil said.

The hospital is now considering whether smartphones might be of greater use in future emergencies, or if there’s a more efficient way to track patients who must be rapidly whisked away.

Eight days earlier, another tracking issue surfaced at Sunrise Hospital & Medical Center in Las Vegas — this one concerning incoming patients. The facility was suddenly inundated by people shot or otherwise injured during the tragedy at the outdoor country music festival; 212 patients were admitted in a two-hour window, 124 of them with gunshot wounds.

Of those, 92 had no official photo identification on them.

Families dashed desperately from one hospital to another searching for their loved ones, said Alan Keesee, the hospital’s chief operations officer. Without IDs for patients, it was a challenge to confirm whether they were at the hospital, let alone whether they would be OK.

Enterprising staffers listed their unidentified patients’ physical traits and unique features, such as tattoos, to help match people with the descriptions family members provided. In turn, many relatives pulled up social media profile photos of their loved ones to give the hospital something to go by.

The chaotic process of patient identification exposed a desperate need for a centralized data hub where descriptions of unidentified patients in a massive emergency could be uploaded and accessed by all area hospitals, Keesee said.

And indeed, he said, his hospital is working with the Nevada Hospital Association and other local health agencies to determine whether the hub can be created.

Communication And Coordination

Last June, a former doctor stormed Bronx-Lebanon Hospital armed with a semiautomatic rifle.

Staff members had trained for just this kind of incident. But they had not anticipated how restricted their movements would be once police took over, said Dr. Sridhar Chilimuri, the physician-in-chief that day.

“Shooting victims need blood transfusions, so you need to get from the blood bank to the operating rooms quickly,” Chilimuri said.

But the hospital lockdown blocked access to elevators. Doctors and nurses also had to fetch surgical instruments and move patients, he added, but they couldn’t do so without approval from police.

Because it was an internal shooting, police had to clear staffers of suspicion before they could return to work — even the doctors needed for lifesaving operations.

The hospital has since updated its drills to include an accelerated process of police screening — targeting the medical staff most urgently needed — and its training videos now show an attacker armed with an assault weapon rather than a small handgun.

“Hopefully that will help us cut down on the time we are crippled,” Chilimuri said.

Running Low On Supplies

When Hurricane Irma barreled into South Florida in September, the 10 Tenet Health hospitals in the region felt ready.

They had beefed up their disaster plans after Hurricane Matthew landed a year earlier, said Cathy Philpott, a director of nursing practice and clinical operation for the hospital system. They also brought in staff from other states and rolled in backup generators, she said.

Even so, they faced an unexpected challenge: a shortage of platelets, cells that help the body form clots to stop bleeding.

Until sister hospitals in Boston could airlift platelets in, the hospitals had to work with local blood banks to conserve the supply and prioritize their use for trauma patients. When hurricanes are forecast in the future, the hospitals will reach out to local blood banks and host platelet drives as the storms approach, Philpott said.

“That’s the lesson learned,” she said.

This story was produced by Kaiser Health News, which publishes California Healthline, a service of the California Health Care Foundation.

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University Under Fire For Off-The-Grid Herpes Vaccine Experiments

WASHINGTON — Southern Illinois University’s medical school has halted all herpes research, one of its most high-profile projects, amid growing controversy over a researcher’s unauthorized methods offshore and in the U.S.

SIU’s ethics panel launched a “full” investigation Dec. 5 of the herpes vaccine experiments by university professor William Halford, according to a memo obtained by Kaiser Health News.

Halford, who died in June, had injected Americans with his experimental herpes vaccine in St. Kitts and Nevis in 2016 and in Illinois hotel rooms in 2013 without routine safety oversight from the Food and Drug Administration or an institutional review board, according to ongoing reporting by KHN. Some of the participants say they are experiencing side effects.

The panel, known as the Misconduct in Science Committee, told SIU’s medical school dean that the inquiry should not only investigate the extent of Halford’s alleged wrongdoing, but also scrutinize “members of his research team,” according to the Dec. 5 memo obtained through a Freedom of Information Act request.

“The Misconduct in Science Committee is now in its investigative stage and the School anticipates this investigation will take approximately 120 days,” SIU spokeswoman Karen Carlson told KHN in an emailed response. “However, the investigation could take longer.”

The panel’s inquiry marks the second one to be launched by SIU since Halford’s methods were detailed in a KHN report in 2017.

The Department of Health and Human Services asked the university to determine whether Halford’s activities violated the institution’s pledge to HHS. SIU, a state university, had pledged to follow human-subject safety protocols for all research, even if privately funded.

In October, SIU medical school’s institutional review board determined Halford’s activities were in “serious noncompliance” with university rules and U.S. regulations and recommended that the misconduct committee investigate, according to records obtained by KHN under open-records laws.

Now, the committee has taken up the case, putting more pressure on SIU’s medical school, which initially said it bore no responsibility for the experiments.

The committee, which is made up of five faculty members, holds hearings about such misconduct and can call witnesses before reaching a conclusion.

The university is required to have such a committee to assure the federal government that it will examine allegations of research misconduct, said Bethany Spielman, a professor of health law at SIU’s medical school in Springfield,Ill. The medical school receives about $ 9 million a year in federal research dollars.

“Part of the reason this committee exists is to keep the federal funding clean and flowing,” said Spielman, who specializes in bioethics. “Any university that does research, especially with human subjects, wants to be trusted by the federal government and the public.”

In SIU’s response to KHN’s open-records request, the university excised the names of the committee members.

Carlson said that after the committee’s investigation is complete “in conjunction with recommendations from the appropriate federal agencies, we will address our policies and procedures and anything else that arises from the investigation.”

“Currently, no herpes research is being conducted at SIU,” she said.

SIU had said Halford conducted his research on human subjects independently in the Caribbean in 2016 with a company he co-founded with a Hollywood filmmaker. Yet, SIU’s medical school shared in a patent on a prospective vaccine with Halford’s company, Rational Vaccines, and promoted Halford’s vaccine research on its website.

The university has not responded to questions about its role in earlier experiments on human experiments by Halford. According to emails obtained by KHN and an account by one of the participants in the herpes vaccine experiment, Halford injected patients with the vaccine in 2013 in Illinois hotel rooms.

Many of the email exchanges with the participants in 2013 — asking them to send photographs of rashes, blisters and other reactions — were sent from Halford’s university email account. He used the university phone for communication and he referred to a graduate student as assisting in the experiment and to using the lab, which ethics experts said could constitute an improper use of state funds.

It is unclear whether the committee will have access to Halford’s or his former colleagues’ emails for its inquiry. An SIU colleague who had worked with him on his research took a job with Rational Vaccines, according to his online profile. Edward Gershburg, a former SIU professor, describes himself as the company’s chief technology officer, according to his LinkedIn account. Gershburg, who is no longer with the university, could not be reached for comment, and the company did not respond to questions about him.

In the Dec. 5 memo obtained by KHN, the misconduct committee pointed out that Halford received federal funding for his research on animals from the National Institutes of Health. In such cases, universities are supposed to ensure that researchers don’t use federal funding for unauthorized research, ethics experts told KHN. SIU’s Carlson said Halford’s NIH funds stopped in 2012.

“It is unclear at this time whether that grant is affected by the alleged misconduct,” stated the memo, which was sent to the medical school dean, Jerry Kruse, who assumed that role on Jan. 1, 2016.

In a reference to Halford’s nasal cancer, which was diagnosed before the human-subject experiments, the committee added: “We can only speculate as to [Halford’s] motivation, which may have been related to his terminal illness.”

NIH declined comment and HHS did not respond to questions.

The pressure on the university has intensified with attention from Capitol Hill and a high-profile lawyer.

In letters sent out earlier this month, Iowa Sen. Chuck Grassley, the Republican chair of the Judiciary Committee, told the Trump administration and Southern Illinois University that he wanted to be reassured that “corrective action” was being taken to prevent similar research abuses.

In a separate development, three participants injected with an unauthorized herpes vaccine by Halford are demanding compensation from SIU for alleged side effects from the vaccine.

The participants recently hired Alan Milstein, a New Jersey lawyer who specializes in litigating research abuses. In late December, Milstein notified SIU that the participants hired him to pursue litigation. Milstein asked for a meeting to discuss the participants’ fears about the vaccine and possible side effects.

“They realize now they were used as guinea pigs in outrageously unethical experiments that defied and flouted the most basic requirements of human-subject research in this country,” Milstein said in an interview.

The participants, who have herpes, have requested anonymity to protect the privacy of their health.

Milstein sent a similar letter to Halford’s company, Rational Vaccines.

Rational Vaccines was co-founded with Hollywood filmmaker Agustín Fernández III and has since received millions of dollars in private investment from billionaire Peter Thiel, who contributed to President Donald Trump’s campaign.

SIU declined to comment, and the company did not respond to questions about Milstein’s letter.

While critics have accused Milstein of relying on overly aggressive tactics that obstruct legitimate research, he is widely known to pursue research misconduct cases, even those involving some of the nation’s most prominent research institutions.

Over the past decade, Milstein has represented plaintiffs alleging research abuses committed by drug companies and prestigious universities, including Stanford University and the University of Pennsylvania. The complaints often have led to confidential settlements.

Regardless of whether SIU can be found negligent in court, Spielman of SIU said she believed the university owed the participants an “institutional apology” for how the research was conducted.

“The university should acknowledge that there must have been some kind of breakdown in the system,” she said.

KHN’s coverage of prescription drug development, costs and pricing is supported by the Laura and John Arnold Foundation.

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Olympus Faces New Trial Over Medical Scopes Tied To Superbug Deaths

A Seattle judge said Olympus Corp. failed to properly disclose internal emails that raised safety concerns about a redesigned medical scope as early as 2008, several years before the device was publicly tied to deadly superbug outbreaks.

Citing those “willful discovery violations” by the Japanese device giant, King County Superior Court Judge Steve Rosen ordered a new trial Tuesday in a wrongful death case brought by Theresa Bigler. The Seattle-area widow, whose case was the first to go to trial in the nationwide outbreaks, claimed that a tainted Olympus scope caused the infection that led to her husband’s death in 2013. The jury returned a mixed verdict, finding that the device’s design was not unsafe.

The emails from 2008 — which Olympus shared with the plaintiffs but were not translated from Japanese, as required — suggest that the company was aware of a potential design problem at least four years earlier than had been disclosed, even before the scope hit the market in 2010. The newly discovered emails could lend support to plaintiffs’ claims that it put sales ahead of patient safety.

More than 25 lawsuits against the scope maker have been filed nationally, most of them in Los Angeles and at least four in Washington state.

Richard Bigler, a 57-year-old who was receiving treatment for pancreatic cancer, was one of at least 35 patients in American hospitals to have died since 2013 after developing infections tied to Olympus duodenoscopes, which are snake-like tubes threaded down a patient’s throat to diagnose and treat problems in the digestive tract. About 700,000 such procedures are performed annually in the U.S.

At the initial Bigler trial last year, jurors rejected claims that the design of the company’s top-selling gastrointestinal scope hampered cleaning and declined to award punitive damages to the family. Instead, the jury ordered Olympus to pay the Seattle hospital involved $6.6 million in damages. In turn, the hospital, Virginia Mason Medical Center, had to pay the family $1 million.

“Olympus robbed the Bigler family of a full and fair trial. They hid the documents and hid the witnesses,” said plaintiff’s attorney David Beninger, whose team found the emails after an Olympus executive  mentioned hospital tests during the first trial. “The family is grateful they will get another chance to hold Olympus accountable.

Olympus said it intends to appeal the judge’s ruling.

“We believe we were compliant with the Washington discovery rules,” the Tokyo-based company said in a statement. “The jury rightly found the Olympus TJF-Q180V duodenoscope design was not defective. This device remains the preferred choice of physicians and hospitals around the world.”

The judge’s order is a setback for the Japanese manufacturer, which has tried for years to win back public trust after a $1.7 billion accounting scandal marred the company’s reputation in 2012. The scope-related outbreaks have sparked renewed scrutiny of the company’s conduct.

In 2016, Olympus recalled its TJF-Q180V duodenoscopes and made repairs to reduce the risk of contamination.

Until now, federal investigations and patient lawsuits into the scope outbreaks have focused more on a warning issued in 2012 by an independent expert who concluded that the scope’s design could allow blood and tissue to become trapped, spreading bacteria from one patient to the next. Olympus emails from 2013, in which executives rejected the idea of a broad warning to U.S. hospitals about possible infections, played a prominent role at last year’s Bigler trial. The company issued a safety alert in Europe in 2013.

Although Olympus had turned over the documents in question to the plaintiffs as part of thousands of pages of pretrial discovery, the judge said the company failed to translate the documents — and flag the hospital test results in response to specific queries from the plaintiffs.

“The rules require that when you produce something under [court rules for interrogatories], it has to be in English,” Rosen said at a Nov. 2 hearing on potential discovery sanctions. “Otherwise, it becomes a very easy way, as a policy matter and a practical matter, to hide things.”

At that same hearing, the judge said “there was massive impropriety on Olympus’s part with regard to verification of discovery.”

Rosen ordered Olympus to pay the Bigler family $250,000 as a sanction as well as cover the plaintiff’s legal expenses for the new trial.

The new documents reveal for the first time that Olympus gave a scope prototype to several hospitals and doctors in Europe and the U.S. for a trial run before putting it on the market in 2010. Olympus controls about 85 percent of the U.S. market for gastrointestinal scopes, which can cost up to $40,000 apiece.

At one of those facilities, Oslo University Hospital in Norway, an unidentified nurse expressed concerns about being able to clean inside the tip of the reusable scope, Olympus internal emails show.

The nurse told the scope maker it would need to certify that the device could be easily cleaned and added: “‘You do want to sell these, right?’” according to an April 15, 2008, email by Masakazu Higashimoto, an Olympus research and development liaison in Germany.

This feedback sparked more messages among Olympus employees who worried that adding a cleaning brush would diminish the company’s upcoming sales pitch and delay the product launch. In 2010, in marketing brochures, Olympus touted its new scope as easier to clean because a crucial section of the device was sealed to keep bacteria out.

“I don’t want to actively market [the brush] since it makes it harder to make [a marketing] appeal based on the high level of cleanliness and ease of cleaning,” Olympus executive Naoya Shimada wrote in an April 18, 2008, email to Higashimoto and three other colleagues, which was filed in court. “I don’t want to have the risk of delaying the scope due to problems with the brush or a need to revise the specs,” Shimada added.

The brush wasn’t included at the product’s launch. Only after superbug outbreaks in the Netherlands, Seattle, Pittsburgh and Los Angeles did Olympus issue a 2015 safety alert advising U.S. customers to use a similar brush.

Lars Aabakken, chief of gastrointestinal endoscopy at Oslo University Hospital, said he doesn’t recall testing the Olympus prototype. But “it does not sound implausible that our nurses may have raised this question, given the quite substantial change” from the previous Olympus model in Europe, which had a removable cap that offered better access for cleaning areas that could harbor dangerous bacteria, he said.

Several U.S. medical centers are listed in translated company documents as participating in the evaluation of the scope prototype around 2008, according to the plaintiffs’ ongoing review and translation of Olympus documents. They include the Cleveland Clinic, Beth Israel Deaconess Medical Center in Boston, Indiana University, the University of Virginia and Thomas Jefferson University Hospital in Philadelphia. It’s unclear what feedback, if any, those hospitals gave Olympus as company documents continue to undergo translation.

In 2013, Thomas Jefferson had eight patient infections tied to contaminated Olympus duodenoscopes, according to a U.S. Senate investigation released in 2016. A hospital spokeswoman, Gail Benner, said, “We have not identified any records indicating that Jefferson conducted formal testing of the Olympus TJF-Q180V duodenoscope.”

Cleveland Clinic declined to comment, citing the ongoing litigation. The other hospitals didn’t respond to requests for comment.

The Seattle judge also found that Virginia Mason committed a discovery violation by not providing a spreadsheet containing scope test results to Olympus. An attorney for the hospital said the material had been provided as required.

This story was produced by Kaiser Health News, which publishes California Healthline, a service of the California Health Care Foundation.

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It’s In The Mail: Aetna Agrees To $17M Payout In HIV Privacy Breach

Aetna settled a lawsuit for $17 million Wednesday over a data breach that happened in the summer of 2017. The privacy of as many as 12,000 people insured by Aetna was compromised in a very low-tech way: The fact that they had been taking HIV drugs was revealed through the clear window of the envelope.

“I was shocked,” said Sam, who distinctly recalls the day he received the notice in August. (Kaiser Health News and NPR agreed not to use his full name because he worries about how going public with his HIV status might affect his work.) The letter came to his mailbox in an apartment complex in New Jersey. He wasn’t directly involved in the lawsuit but says the letter hit a level of vulnerability he had never felt before.

“I haven’t disclosed my HIV status to my parents,” said Sam, 36, who is a civil rights attorney. “Let’s say that letter had gotten forwarded to their house and someone happened to open the mail. Those were the types of things going through my mind.”

In a statement, Aetna wrote: “Through our outreach efforts, immediate relief program and this settlement we have worked to address the potential impact to members following this unfortunate incident.”

The insurer also said it is “implementing measures designed to ensure something like this does not happen again as part of our commitment to best practices in protecting sensitive health information.”

In an ironic twist, the letters were sent in response to a settlement over previous privacy violation concerns. Aetna had required members to obtain HIV medications through mail-order pharmacies. The affected people had taken medication to treat HIV or to lower the risk of becoming infected with the virus, an approach called PrEP, or pre-exposure prophylaxis.

Lawsuits filed in 2014 and 2015 alleged that policy was discriminatory, that it prevented patients taking HIV medicine from receiving in-person counseling from a pharmacist and that it jeopardized members’ privacy.

Aetna settled with the individual plaintiffs, changed its policy to allow members to fill HIV prescriptions in person at retail pharmacies, and, in turn, sent out notification letters to anyone who had filled prescriptions for HIV medications.

It was those notification letters that contained a large envelope window that exposed sensitive HIV information.

While the stigma surrounding HIV may be less severe than it used to be and treatments have improved greatly, Ronda Goldfein, director of the AIDS Law Project of Pennsylvania, said the reality is that serious discrimination still exists. That means protecting patient confidentiality is critical to ensuring people feel safe getting care.

As hundreds of calls from people who received the Aetna letter started coming into Goldfein’s office and others around the country, she learned of more harrowing and devastating experiences. She said she heard from one man who had homophobic slurs painted on his door when neighbors saw the letter. Other letter recipients felt the need to move out of their neighborhoods. For one woman, whose status became known in her tight-knit immigrant community, “she stopped being able to function, she stopped being able to go to work, and she lost her job,” Goldfein said.

Adrian Lowe (left), staff attorney with the AIDS Law Project of Pennsylvania, and Ronda Goldfein, an attorney and executive director of the AIDS Law Project, filed a class-action suit against Aetna over privacy breaches. (Elana Gordon/WHYY)

The AIDS Law Project of Pennsylvania and the Legal Action Center initially issued a demand letter in late August that the insurer stop the mailings. The company responded, setting up a relief fund for affected people and apologizing. “This type of mistake is unacceptable, and we are undertaking a full review of our processes to ensure something like this never happens again,” the health insurer said.

Goldfein and others soon discovered that the mailing was more widespread than first thought: Up to 12,000 people had received it. Her agency, the Legal Action Center and Berger & Montague PC filed a lawsuit and sought class-action status.

The privacy breach as outlined in the proposed settlement was twofold: Aetna released the names of 13,480 people to its legal counsel and a vendor without proper authorization. Of those, 11,875 got the letter that revealed they were taking HIV medication.

The proposed settlement is awaiting approval in federal court, but in it Aetna has agreed to pay $17 million and set up new “best practices” to prevent something like this from happening again.

As part of the payout, the law firms are setting aside at least $12 million for payments of at least $500 to the estimated 11,875 people who may have received a letter exposing that information, acknowledging that “the harm was in the status being disclosed,” Goldfein said. Plus, people won’t have to file additional paperwork and go through more mailings pertaining to their HIV medications.

A fund will be set up for those who experienced additional financial or emotional distress. Individuals will be able to claim up to $20,000. The rest of the money will go toward legal fees and costs.

“It’s a much bigger settlement than ordinary identity theft scenarios, where an online database has been breached and the main injury people are claiming is that they might be victims of identity theft and maybe have their financial information compromised,” said William McGeveran, a specialist in privacy law and data breaches at the University of Minnesota.

The amount may be unusual, but McGeveran also said low-level breaches like this aren’t. Companies may be so focused on IT security that they overlook other ways that privacy can be breached.

“They’re more common than people realize,” McGeveran said. “There’s so much attention to cybersecurity, and rightly so, but a lot of medical privacy concerns are much more analog than that. They’re about things being overheard, they’re about paper records and in this case it’s about a paper mailing.”

Beyond the payout itself, she hopes the suit helps change the culture of companies when it comes to the attention paid to medical privacy, and the rights of people with HIV in particular. To highlight that, lawyers used “Andrew Beckett” as the pseudonym for the original plaintiff in the case, a Pennsylvania man from Bucks County.

It’s a nod to the Tom Hanks character in the 1993 film “Philadelphia,” who was fired after his law firm found out he had HIV. This “Beckett” is taking PrEP.

“HIV still has a negative stigma associated with it, and I am pleased that this encouraging agreement with Aetna shows that HIV-related information warrants special care,” the man known as Beckett said in statement.

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

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Podcast: What The Health? Our First Live Show: What The Health Will Happen In 2018?

Congress is at the precipice of shutting down the government, unless lawmakers can quickly agree on another short-term spending bill. And this time, the Children’s Health Insurance Program is caught in the crosshairs. Republicans are offering six years of funding for CHIP as an enticement for Democratic votes on the spending bill, but Democrats are still balking because they want the bill to include protections for undocumented individuals brought to the U.S. by their parents when they were children.

Meanwhile, with the help of the Trump administration, states are looking at other ways to change the Medicaid program besides work requirements.

And Tom Scully, former head of the Centers for Medicare & Medicaid Services under President George W. Bush, offers his predictions for what might happen this year in health policy. His short answer: not much.

Julie Rovner of Kaiser Health News (left), Sarah Kliff of Vox.com, Paige Winfield Cunningham of The Washington Post and Alice Ollstein of Talking Points Memo speak at a live taping of this week’s “What The Health?” podcast. (Lynne Shallcross/KHN)

This week’s “What The Health?” panelists are Julie Rovner of Kaiser Health News, Stephanie Armour of The Wall Street Journal, Joanne Kenen of Politico, Sarah Kliff of Vox.com, Alice Ollstein of Talking Points Memo, Margot Sanger-Katz of The New York Times and Paige Winfield Cunningham of The Washington Post.

In the podcast’s first live taping before an audience, the panelists discuss these topics as well as whether states will pass their own individual insurance requirements now that the penalty for the federal “individual mandate” has been repealed, how the loss of that penalty will change the individual marketplaces and whether anyone will address the high cost of prescription drugs.

Among the takeaways from this week’s podcast:

  • Although CHIP has long enjoyed a reputation as having bipartisan support, it appears that House Republicans are less committed to the program than in past years.
  • The addition of a work requirement gained many of the headlines in the Trump administration’s Medicaid waiver for Kentucky, but other important changes were given a green light, too. They include jettisoning the long-standing practice of giving enrollees retroactive coverage if they were eligible for it at that time, charging premiums, and locking people out of coverage if they fail to provide required premiums or paperwork.
  • Maryland officials are weighing the option of setting up a state-based requirement that people get insurance since the federal government has repealed the Affordable Care Act’s penalties for not having insurance. If it passes, other states could follow suit.
  • Scully says one of the biggest issues facing policymakers is trying to fix the gross inequities in Medicaid as different states use it for different populations and programs.

To hear all our podcasts, click here.

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Home Care Agencies Often Wrongly Deny Medicare Help To The Chronically Ill

Colin Campbell needs help dressing, bathing and moving between his bed and his wheelchair. He has a feeding tube because his partially paralyzed tongue makes swallowing “almost impossible,” he said.

Campbell, 58, spends $4,000 a month on home health care services so he can continue to live in his home just outside Los Angeles. Eight years ago, he was diagnosed with amyotrophic lateral sclerosis, or “Lou Gehrig’s disease,” which relentlessly attacks the nerve cells in his brain and spinal cord and has no cure.

The former computer systems manager has Medicare coverage because of his disability, but no fewer than 14 home health care providers have told him he can’t use it to pay for their services.

That’s an incorrect but common belief. Medicare does cover home care services for patients who qualify, but incentives intended to combat fraud and reward high quality care are driving some home health agencies to avoid taking on long-term patients such as Campbell, who have debilitating conditions that won’t get better, according to advocates for seniors and the home care industry. Rule changes that took effect this month could make the problem worse.

“We feel Medicare coverage laws are not being enforced and people are not getting the care that they need in order to stay in their homes,” said Kathleen Holt, an attorney and associate director of the Center for Medicare Advocacy, a nonprofit, nonpartisan law firm. The group is considering legal action against the government.

Campbell has ALS, which attacks the nerve cells in the brain and the spinal cord. The former computer systems manager uses a walker, wheelchair and built-in fixtures to help him get around. (Heidi de Marco/KHN)

Campbell developed drop foot due to his ALS and needs to wear a brace. He relies on help from a home health worker to get dressed and bathed every day. (Heidi de Marco/KHN)

Federal law requires Medicare to pay indefinitely for home care — with no copayments or deductibles — if a doctor ordered it and patients can leave home only with great difficulty. They must need intermittent nursing, physical therapy or other skilled care that only a trained professional can provide. They do not need to show improvement. Those who qualify can also receive an aide’s help with dressing, bathing and other daily activities. The combined services are limited to 35 hours a week.

Medicare affirmed this policy in 2013 when it settled a key lawsuit brought by the Center for Medicare Advocacy and Vermont Legal Aid. In that case, the government agreed that Medicare covers skilled nursing and therapy services — including those delivered at home —to maintain a patient’s abilities or to prevent or slow decline. It also agreed to inform providers, bill auditors and others that a patient’s improvement is not a condition for coverage.

Campbell said some home health care agencies told him Medicare would pay only for rehabilitation, “with the idea of getting you better and then leaving,” he said. They told him that Medicare would not pay them if he didn’t improve, he said. Other agencies told him Medicare simply did not cover home health care.

Medicaid, the federal-state program for low-income adults and families, also covers home health care and other home services, but Campbell doesn’t qualify for it.

Securing Medicare coverage for home health services requires persistence, said John Gillespie, whose mother has gone through five home care agencies since she was diagnosed with ALS in 2014. He successfully appealed Medicare’s decision denying coverage, and afterward Medicare paid for his mother’s visiting nurse as well as speech and physical therapy.

“You have to have a good doctor and people who will help fight for you to get the right company,” said Gillespie, of Orlando, Fla. “Do not take no for an answer.”

Yet a Medicare official did not acknowledge any access problems. “A patient can continue to receive Medicare home health services as long as he/she remains eligible for the benefit,” said spokesman Johnathan Monroe.

But a leading industry group contends that Medicare’s home health care policies are often misconstrued. “One of the myths in Medicare is that chronically ill individuals are not qualified for coverage,” said William Dombi, president of the National Association for Home Care and Hospice, which represents nearly half of the nation’s 12,000 home care providers.

Part of the problem is that some agencies fear they won’t be paid if they take on patients who need their services for a long time, Dombi said. Such cases can attract the attention of Medicare auditors who can deny payments if they believe the patient is not eligible or they suspect billing fraud. Rather than risk not getting paid, some home health agencies “stay under the radar” by taking on fewer Medicare patients who need long-term care, Dombi said.

And they may have a good reason to be concerned. Medicare officials have found that about a third of the agency’s payments to home health companies in the fiscal year ending last September were improper. 

Campbell’s adjustable wheelchair allows him to recline, which makes breathing easier. (Heidi de Marco/KHN)

Shortages of home health aides in some areas might also lead an overburdened agency to focus on those who need care for only a short time, Dombi said.

Another factor that may have a negative effect on chronically ill patients is Medicare’s Home Health Compare ratings website. It includes grades on patient improvement, such as whether a client got better at walking with an agency’s help. That effectively tells agencies who want top ratings “to go to patients who are susceptible to improvement,” Dombi said.

This year, some home care agencies will earn more than just ratings. Under a Medicare pilot program, home health firms in nine states will start receiving payment bonuses for providing good care and those who don’t will pay penalties. Some criteria used to measure performance depend on patient improvement, Holt said.

Another new rule, which took effect last Saturday, prohibits agencies from discontinuing services for Medicare and Medicaid patients without a doctor’s order. But that, too, could backfire. 

“This is good,” Holt said. “But our concern is that some agencies might hesitate to take patients if they don’t think they can easily discharge them.”

This article was written with the support of a journalism fellowship from New America Media, the Gerontological Society of America and the Silver Century Foundation.

KHN’s coverage of aging and long-term care issues is supported in part by The SCAN Foundation.

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