Tagged Children’s Health

Podcast: ‘What The Health?’ Whiplash

The bipartisan leaders of the Senate Health, Education, Labor and Pensions Committee this week agreed on a bill they say could help stabilize the struggling health insurance exchanges. But despite the compromises made by Sens. Lamar Alexander (R-Tenn.) and Patty Murray (D-Wash.), it’s still unclear whether Congress can pass the measure, particularly in time for the 2018 open enrollment that begins Nov. 1.

President Donald Trump, who in the past week has taken multiple positions on whether he supports or opposes the bipartisan efforts, is not helping the effort.

In this episode of “What The Health?” Julie Rovner of Kaiser Health News, Joanne Kenen of Politico, Margot Sanger-Katz of The New York Times, and Alice Ollstein of Talking Points Memo discuss these issues, as well as the fate of the Children’s Health Insurance Program, whose funding authorization expired on Oct. 1.

The Senate compromise would appear to be a win-win: Democrats restore Obamacare markets’ stability and Republicans help bring down premium prices. But politics keep getting in the way.

The panelists agreed that the bipartisan bill faces a perilous path to passage, with Republicans in both the House and Senate loath to vote for something that could be seen as shoring up the health law they promised voters they would repeal. Even if it appears “really, really dead,” proposals often come back to life in health care. Keep an eye on end of the year congressional compromises.

But it also seems that Trump’s cutoff last week of subsidies that reimburse insurers for discounts they provide to lower-income enrollees has had less of an impact than many predicted. In some states, insurance regulators had insurers file two separate sets of rates, including a higher one in case the president stopped the payments. In other states, insurers are letting states file new rates, even though the deadline for that has technically passed.

Plus, for “extra credit,” the panelists recommend their favorite health stories of the week they think you should read, too.

Julie Rovner: The Washington Post’s “The Drug Industry’s Triumph Over the DEA,” by Scott Higham and Lenny Bernstein.

Joanne Kenen: The Pacific Standard’s “Doctor and Advocate: One Surgeon’s Global Fight For The Rights Of Rape Survivors,” by Fabiola Ortiz and Megan Clement.

Margot Sanger-Katz: Vox.com’s “Dark chocolate is now a health food. Here’s how that happened,” by Julia Belluz.

Alice Ollstein: Bloomberg News’ “The Health Plans Trump Backs Have a Long History of Disputes,” by Erik Larson and Zachary Tracer.

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Categories: Repeal And Replace Watch, The Health Law

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Cascade of Costs Could Push New Gene Therapy Above $1 Million Per Patient

Outrage over the high cost of cancer care has focused on skyrocketing drug prices, including the $475,000 price tag for the country’s first gene therapy, Novartis’ Kymriah, a leukemia treatment approved in August.

But the total costs of Kymriah and the 21 similar drugs in development — known as CAR T-cell therapies — will be far higher than many have imagined, reaching $1 million or more per patient, according to leading cancer experts. The next CAR T-cell drug could be approved as soon as November.

Although Kymriah’s price tag has “shattered oncology drug pricing norms,” said Leonard Saltz, chief of gastrointestinal oncology at Memorial Sloan Kettering Cancer Center in New York, “the sticker price is just the starting point.”

These therapies lead to a cascade of costs, propelled by serious side effects that require sophisticated management, Saltz said. For this class of drugs, Saltz advised consumers to “think of the $475,000 as parts, not labor.”

Dr. Hagop Kantarjian, a leukemia specialist and professor at the University of Texas MD Anderson Cancer Center, estimates Kymriah’s total cost could reach $1.5 million.

CAR T-cell therapy is expensive because of the unique way that it works. Doctors harvest patients’ immune cells, genetically alter them to rev up their ability to fight cancer, then reinfuse them into patients.

Taking the brakes off the immune system, Kantarjian said, can lead to life-threatening complications that require lengthy hospitalizations and expensive medications, which are prescribed in addition to conventional cancer therapy, rather than in place of it.

Dr. Keith Eaton, like nearly half of patients who receive CAR T-cell therapy, developed a life-threatening complication in which his immune system overreacted. He says he feels fortunate to be healthy today. (Courtesy of Dr. Keith Eaton)

Dr. Keith Eaton, a Seattle oncologist, said he ran up medical bills of $500,000 when he participated in a clinical trial of CAR T cells in 2013, even though all patients in the study received the medication for free. Eaton, who suffered from leukemia, spent nearly two months in the hospital.

Like Eaton, nearly half of patients who receive CAR T cells develop a severe or life-threatening complication called “cytokine storm,” in which the immune system overreacts, causing dangerously high fevers and sudden drops in blood pressure. These patients are typically treated in the intensive care unit. Other serious side effects include stroke-like symptoms and coma.

The cytokine storm felt like “the worst flu of your life,” said Eaton, now 51. His fever spiked so high that a hospital nurse assumed the thermometer was broken. Eaton replied, “It’s not broken. My temperature is too high to register on the thermometer.”

Although Eaton recovered, he wasn’t done with treatment. His doctors recommended a bone-marrow transplant, another harrowing procedure, at a cost of hundreds of thousands of dollars.

Eaton said he feels fortunate to be healthy today, with tests showing no evidence of leukemia. His insurer paid for almost everything.

Kymriah’s sticker price is especially “outrageous” given its relatively low manufacturing costs, said Dr. Walid Gellad, co-director of the Center for Pharmaceutical Policy and Prescribing at the University of Pittsburgh.

The gene therapy process used to create Kymriah costs about $15,000, according to a 2012 presentation by Dr. Carl June, who pioneered CAR T-cell research at the University of Pennsylvania. June could not be reached for comment.

To quell unrest about price, Novartis has offered patients and insurers a new twist on the money-back guarantee.

Novartis will charge for the drug only if patients go into remission within one month of treatment. In a key clinical trial, 83 percent of the children and young adults treated with Kymriah went into remission within three months. Novartis calls the plan “outcomes-based pricing.”

Novartis is “working through the specific details” of how the pricing plan will affect the Centers for Medicare & Medicaid Services, which pays for care for many cancer patients, company spokeswoman Julie Masow said. “There are many hurdles” to this type of pricing plan but, Masow said, “Novartis is committed to making this happen.”

Masow said that Kymriah’s manufacturing costs are much higher than $15,000, although she didn’t cite a specific dollar amount. She noted that Novartis has invested heavily in the technology, designing “an innovative manufacturing facility and process specifically for cellular therapies.”

As for Kymriah-related hospital and medication charges, “costs will vary from patient to patient and treatment center to treatment center, based on the level of care each patient requires,” Masow said. “Kymriah is a one-time treatment that has shown remarkable early, deep and durable responses in these children who are very sick and often out of options.”

Some doctors said Kymriah, which could be used by about 600 patients a year, offers an incalculable benefit for desperately ill young people. Kymriah is approved for children and young adults with a type of acute lymphoblastic leukemia and already have been treated with at least two other cancer therapies.

“A kid’s life is priceless,” said Dr. Michelle Hermiston, director of pediatric immunotherapy at UCSF Benioff Children’s Hospital San Francisco. “Any given kid has the potential to make financial impacts over a lifetime that far outweigh the cost of their cure. From this perspective, every child in my mind deserves the best curative therapy we can offer.”

Other cancer doctors say the Novartis plan is no bargain.

About 36 percent of patients who go into remission with Kymriah relapse within one year, said Dr. Vinay Prasad, an assistant professor of medicine at Oregon Health & Science University. Many of these patients will need additional treatment, said Prasad, who wrote an editorial about Kymriah’s price Oct. 4 in Nature.

“If you’ve paid half a million dollars for drugs and half a million dollars for care, and a year later your cancer is back, is that a good deal?” asked Saltz, who co-wrote a recent editorial on Kymriah’s price in JAMA.

Dr. Steve Miller, chief medical officer for Express Scripts, a pharmacy benefit manager, said it would be more fair to judge Kymriah’s success after six months of treatment, rather than one month. Prasad goes even further. He said Novartis should issue refunds for any patient whose leukemia relapses within three years.

A consumer advocate group called Patients for Affordable Drugs also has said that Kymriah costs too much, given that the federal government spent more than $200 million over two decades to support the basic research into CAR T-cell therapy, long before Novartis bought the rights.

Rep. Lloyd Doggett, D-Texas, wrote a letter to the Medicare program’s director last month asking for details on how the Novartis payment deal will work.

“As Big Pharma continues to put price gouging before patient access, companies will point more and more proudly at their pricing agreements,” Doggett wrote. “But taxpayers deserve to know more about how these agreements will work — whether they will actually save the government money, defray these massive costs, and ensure that they can access life-saving medications.”

KHN’s coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation.

Categories: Cost and Quality, Pharmaceuticals

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Giving Birth Is Hard Enough. Try It In The Middle Of A Wildfire.

Days before there was any sign of fire, Nicole and Ben Veum of Santa Rosa, Calif., had been waiting and waiting for their baby to arrive. Nicole’s due date came and went. Her doctor called her into the hospital — Sutter Santa Rosa Regional Hospital — to induce labor. That was Friday.

“So we were very excited at that point,” she said. “And then, day after day after day with not a whole lot of progress.”

They tried three different ways of inducing labor. Then, on Sunday, with the third attempt, it started working.

“And then finally I am in a great rhythm,” she said. “We’re all excited. They’re talking about breaking my water.”

Her contractions were strong, coming every four to five minutes.

“Things are rolling,” Ben said. “We’re getting good checks from the nurses. We started to get in the mood to play some music — a little bit of opera.”

They had just turned on Pavarotti when the hospital power went out. The generators came on. And the smoke outside the building — coming from deadly wildfires that had spread across at least 57,000 acres in the California region — started to creep inside.

“There was a ton of smoke in the hospital,” Nicole said. “You could see it and smell it.”

The nurses said the buildings around the hospital were on fire and they had to evacuate everyone. Eighty patients from Sutter and another 130 patients from Kaiser Permanente were transferred to other hospitals in the area on Monday, including Santa Rosa Memorial and Kaiser San Rafael. (Kaiser Health News is not affiliated with Kaiser Permanente.)

Nicole Veum had just received an epidural when the evacuation orders came through.

“I couldn’t walk or move, which was just not cool,” she said. “I didn’t like that part. I felt really vulnerable.”

The staff gave Nicole medication to stop her contractions.

“We were like ‘Noooo.’ It was the worst news,” she said. “To have tried for three days and then OK, here’s the shot that’s going to end all of that.”

Then, Nicole had to wait again. For an ambulance.

It was hours before dawn, and Nicole lay on a gurney by the docking bay, feeling paralyzed, in a line of would-be evacuees. There were so many patients who needed to be transported, and by the time her turn came, she had to share the ride with another woman in labor and a third with a newborn in her arms. That left no room for her husband.

“The charge nurse explained that ‘This is a disaster. We’re following disaster protocol and no spouses or birth teams or anything are going along on the ambulance,’” Ben said. “And there was a part of me briefly that was like — but I’m a dad. I’m going to be a dad. This is us.”

Ben waited for a city bus and was soon reunited with Nicole at Santa Rosa Memorial. But by that point, her labor was again at a stand still.

They gave it another 12 hours, then agreed to a cesarean section. Monday evening, Nicole gave birth to a healthy baby boy, named Adrian Veum. Their friends had some suggestions for a middle name.

“They wanted us to call him Adrian Fuego Veum, or Blaze Veum,” she said.

But Nicole is a big Los Angeles baseball fan, and she and Ben decided to stick with their original name plan: Adrian Dodger Veum.

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

Categories: Public Health

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Social Media Is Harming The Minds Of Our Youth, Right? Maybe Not.

It was 1:30 a.m., and Anna was trying to keep her mind off her ex-boyfriend, with whom she had ended a painful relationship hours earlier. It was too late to call the therapist she was seeing to cope with low self-esteem and homesickness, and too late to stop by a friend’s house.

So, she turned to social media. “I’m having a really hard time right now,” Anna — who asked to be identified by a pseudonym — posted on Facebook. “Is there anyone I can call and talk to until I feel better?”

Almost immediately, three people responded with offers to talk. They were friends she had met playing Quidditch, a sport based on the Harry Potter fantasy books, and she kept in touch with them online. Anna talked to two of them until she was able to fall sleep.

“I used to be very shy about posting personal stuff on Facebook because I didn’t want people judging me,” said Anna, 26. “But that night, I was in such a bad place; I was desperate, and I thought anything would help.”

The negative effects of social media on young people’s mental health are well-documented by researchers and the press. Social media can drive envy and depression, enable cyberbullying and spread thoughts of suicide.

But some academics and therapists are proposing a counterintuitive view: They have found that social media may also help improve mental health by boosting self-esteem and providing a source of emotional support. These benefits have attracted too little attention from journalists and parents, they say.

“Yes, social media is contributing to a new era of adolescent (and adult) social stress, but when we accept that it is here to stay, we can also see it as a new opportunity for connection and mindfulness,” according to an online advice column published by the University of California-Berkeley’s Greater Good Science Center.

“We need to think about social media as not being absolutely good or bad,” said Amy Gonzales, an assistant professor who studies social media and health at Indiana University’s Media School. “We need to think about how to come up with appropriate uses of this stuff.”

Social media have become integral to the lives of young adults and teens: 45 percent of teenagers say they use apps such as Facebook, Twitter and Instagram every day.

In research published by the National Center for Biotechnology Information, Gonzales found that college students who viewed their own Facebook profiles enjoyed a boost in self-esteem afterward.

By curating their online personas to reflect their best traits — choosing flattering pictures and sharing exciting experiences — users remember what they like best about themselves.

“It’s like the way you might feel good about yourself when you check yourself out in the mirror before a date,” Gonzales explained.

Other studies reveal that people feel more social support when they present themselves honestly on social media, and tend to feel less stressed after they do so.

“You get much broader affirmation by posting on social media than from calling a relative,” Anna said. “It’s one thing if you text a friend; it’s another thing if you have a bunch of people trying to help you out.”

Matthew Oransky, an assistant professor of adolescent psychiatry at Mount Sinai Hospital in New York City and a practicing therapist, said many of his patients find social connections online they could not find elsewhere. This is particularly true of marginalized teens, such as kids in foster homes and LGBT adolescents.

“I’ve seen some of the really big positives, which is that kids who are isolated can find a community,” Oransky said. “They’re often first able to come out to online friends.” In a 2013 survey, 50 percent of LGBT youth reported having at least one close friend they knew only from online interactions.

Young adults with serious mental illness such as schizophrenia and bipolar disorder can also find social support via social media, according to a study published in 2016. “These people are openly discussing their illness online,” said John Naslund, a research fellow at the Dartmouth Institute for Health Policy and Clinical Practice.

Social media postings can help foster greater acceptance of mental health problems. “It’s definitely real that there’s hostility online,” Naslund said. “But we’ve found that comments related to mental health are overwhelmingly positive. People can learn how to cope with symptoms and how to find the right support.”

But parents can and should help their children use social media wisely, experts say. Oransky suggests, for instance, that parents talk with kids about the privacy consequences of posting compromising material, such as revealing pictures or personal details that might affect their job prospects. Naslund recommends that people start cautiously on social media by using pseudonyms.

Anna uses filters to keep co-workers from seeing her mental health posts. But she views social media as a way to act on her therapist’s recommendation to reach out for support when she needs it. “If you trust your friends,” she said, “I don’t see why you shouldn’t embrace the social media option.”

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

Categories: California Healthline, Mental Health

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