Ever Wonder Why Rx Drugs Cost So Much In The U.S.?

The Wall Street Journal examines the cost of prescription drugs in the U.S. compared with other developed nations while other news outlets report that Express Scripts will offer a lower-cost alternative to a $750-per-pill medication made by Turing Pharmaceuticals. In the background, STAT finds that public opinion supports government actions to hold down drug costs -- such as allowing Medicare to negotiate prices with drug companies.

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In other health law and insurance news, media outlets report on continued problems on Vermont's health insurance exchange, families struggle with growing long-term care costs and the Supreme Court is set to hear a case on states' efforts to collect health insurance claims in a database.

Aid-In-Dying Laws Only Accentuate Need For Palliative Care, Providers Say

LOS ANGELES — More times than she can count, Dr. Carin van Zyl has heard terminally ill patients beg to die. They tell her they can’t handle the pain, that the nausea is unbearable and the anxiety overwhelming.

If she were in the same situation, she too would want life-ending medication, even though she doubts she would ever take it. “I would want an escape hatch,” she said.

Earlier this month, California law became the fifth — and largest — state to allow physicians to prescribe lethal medications to certain patients who ask for it.

Yet van Zyl can’t see herself as one of those doctors.

This KHN story also ran in The Washington Post. It can be republished for free (details).

“This is my life’s work, to relieve suffering,” said van Zyl, head of palliative care medicine at Los Angeles County-USC Medical Center. To her, that does not mean cutting short a life.

“I can’t imagine pulling the trigger,” she said.

Weeks after California Gov. Jerry Brown signed the “end-of-life option act” into law, palliative care physicians like van Zyl are trying to come to terms with what it means for them and their terminally ill patients.

Jose Garcia Flores, 60, listens to Dr. Carin van Zyl as she explains that chemotherapy might not be an option to treat his colon cancer on Oct. 13, 2015. (Photo by Heidi de Marco/KHN)

It’s not just a question of whether they support aid-in-dying or personally would ever help end a life. Palliative care doctors say the law underscores the need to raise awareness among doctors and patients about what they do and to expand access to high-quality programs.

Contrary to some patients’ fears, they say, palliative care doctors are not there to hasten death. Their job is to help seriously ill people get relief from symptoms and stress and to improve quality of life for them and their families, regardless of how long the patients have to live.

The California law should be a “wake-up” call because it shows “how terrified patients are of what they will experience at the end of life,” said Dr. R. Sean Morrison, professor of geriatrics and palliative care medicine at Mt. Sinai’s Icahn School of Medicine in New York.

Morrison said that once patients who want to hasten their death get their symptoms controlled and their spiritual needs addressed, the overwhelming majority want to keep living.

“Their choice shouldn’t be an assisted death or living with intractable suffering,” Morrison said. “That’s what laws allowing assisted suicide, in the absence of palliative care, present as a choice to patients.”

Palliative care has become more widespread in recent years, and more doctors, nurses and social workers are being trained in how to provide it. In addition, recent legislation in California requires that Medi-Cal managed care plans ensure access to programs.

Dr. Carin van Zyl and patient Jose Garcia Flores hold hands as van Zyl promised to do everything she could to ease his pain and control his symptoms on Oct. 13, 2015. (Photo by Heidi de Marco/KHN)

But gaps remain. A recent report by the California HealthCare Foundation showed that residents in 22 of 58 California counties don’t have access to community-based palliative care, and those in 19 counties don’t have access to in-patient programs. Foundation researchers also found recently that specialists are in short supply and that there is no reliable way to pay for such care.

Dr. Ira Byock, a palliative care expert who opposed the California law, said its passage makes it more important than ever that all doctors receive more education on how to treat symptoms in seriously ill patients and talk with patients about what they want in their final months.

“As hard as illness and dying are … people still have the capacity to experience the sense of well-being,” said Byock, who heads the Providence Institute for Human Caring in Torrance, Calif.

Without palliative care programs, Byock and others say those conversations don’t always take place. Only about 17 percent of patients have had end-of-life discussions with their doctors, though about 90 percent believe doctors should be doing so, according to a recent poll by the Kaiser Family Foundation. (KHN is an editorially independent program of the foundation.) In addition, research out of the Mayo Clinic found that only 12 percent of doctors had yearly end-of-life discussions with heart failure patients, and about 30 percent of the physicians had “little confidence” doing so.

Dr. Tony Back, who is co-director of the University of Washington’s Cambia Palliative Care Center of Excellence, said that after a similar aid-in-dying law passed in his state, more doctors realized that they “couldn’t just push it off on somebody else.”

As van Zyl struggles with her own reactions to the new law, she continues to have those tough conversations with one patient after another, every day.

Magdalena Flores-Garcia, Jose’s wife, stands quietly at her husband’s bedside on Oct. 13, 2015. (Photo by Heidi de Marco/KHN)

On a recent day, more than two dozen names were listed on a white board in her hospital offices — all of them patients referred to her team for care. A 33-year-old woman with metastatic breast cancer. A 50-year-old with pancreatic cancer that had spread to her lungs. A 20-year-old man with a fast-growing brain tumor.

One patient van Zyl visited that day was Jose Garcia Flores, a gaunt, 60-year-old with advanced stage colon cancer. The former electrician had been diagnosed in the spring and was back in the hospital because of pain and nausea.

Van Zyl told him that there was a possibility that doctors would no longer be able to continue chemotherapy because of a complication. Van Zyl asked what he valued more — living longer, no matter what that looked like, or not living as long but being able to spend quality time with family at home.

“There is no right answer,” she said, promising to do everything she could to ease his pain and control his symptoms, regardless of whether he wanted to continue treatment for his cancer.

Garcia Flores paused and looked over at his wife standing next to the hospital bed. “I would prefer… to enjoy time with my family,” he said in Spanish.

“This isn’t fair — any of this,” she told him. “You are very brave.”

Van Zyl said that none of her patients have asked yet about the aid-in-dying law, which takes effect next year. She wonders if many of them even know about it.

A native of South Africa who used to work in emergency medicine, van Zyl said she recognizes that her views on the new law are hypocritical. “I don’t have a logical answer why I would want it for myself but not want to offer it to my patients,” she said. “I don’t know why I am still sitting on this fence that is increasingly pointy and uncomfortable.”

Part of it, she believes, is simple: “I’m deeply afraid of dying.”

Dr. Carin van Zyl, head of palliative care medicine, at Los Angeles County-USC Medical Center on Oct. 13, 2015. (Photo by Heidi de Marco/KHN)

Yet she knows, as a doctor, that death doesn’t have to be scary. Some problems, she says, have medical solutions — there are effective medications for pain and anxiety, for instance, so people can die peacefully. Van Zyl says her patients have always stopped asking to have their lives shortened once their symptoms were controlled.

Van Zyl believes medical providers, regardless of specialty, can be taught how to provide palliative care. That’s part of her job. And on this day, she stood before half a dozen medical residents, reviewing the best treatments for nausea, pain and shortness of breath. But suffering isn’t always physical, she said. Patients and families also need help coping with emotional suffering, she said.

“It is possible to screw up a family for life with a bad conversation,” she said. Van Zyl urged the residents not to run away from direct and honest — though hard — discussions.  “Don’t do what so many doctors do, which is crumble.”

Then van Zyl brought up the aid-in-dying law. “What will you do when your patients says, ‘Can you kill me?’” she asked the group. “Somebody, at some point, is going to ask you to do that.”

One resident said that for her, prescribing lethal medication would be on a case-by-case basis. She would want to make sure the patient’s symptoms and pain were under control first. Another said she worried about how her own family would view her decision to help patients end their lives.

A third, Roshel Graham, said that no matter what, she hoped the law will help raise awareness about the benefits of palliative care. “I don’t think a lot of people even know palliative care exists,” she said.

As time goes on and doctors in California begin prescribing medicine to help people hasten their deaths, van Zyl said, perhaps her own views will become less conflicted.

“Maybe my position will evolve,” she said. “I could imagine one bad death tipping me over.”

Blue Shield of California Foundation helps fund KHN coverage in California.

Sweet Name Of Kids’ Clinic Gives Some People Heartburn

The name that UNC Health Care is giving its children’s clinic in North Carolina has been raising a lot of eyebrows. The facility is slated to be renamed the Krispy Kreme Challenge Children’s Specialty Clinic. But criticism from the medical community at the University of North Carolina and elsewhere is making the health care system rethink that choice.

Since the announcement last month, Barry Popkin, a nutrition professor at UNC-Chapel Hill, says he’s heard from a lot of colleagues wondering, “What the heck is going on at UNC?” The clinic in question is actually about 25 miles away, in Raleigh — home to North Carolina State University.

“For them to name it this way — to give advertisement to a very unhealthy food, high in added sugar and unhealthy fats and refined carbs with no nutritional value — was quite surprising to people around the nation,” Popkin says.

This story is part of a partnership that includes WFAE, NPR and Kaiser Health News. It can be republished for free. (details)

The name seems particularly unfortunate, some critics say, because North Carolina ranks poorly in measures of childhood obesity.

For the Krispy Kreme company, the advertisement is both free and unintentional. Leslie Nelson, head of fundraising and communications at UNC Children’s Hospital, says the clinic — and the race — are in no way sponsored by the doughnut maker, which is based in Winston-Salem.

“The corporation is definitely not part of the name,” she says. “It’s named for a race! The name of the doughnut happens to be in the name of the race. But at the heart of it, it’s about the race and about these kids.”

In October, the student group behind the Krispy Kreme Challenge, an annual charity race in Raleigh, N.C., pledged to raise a total of $2 million for the race’s namesake clinic and UNC Children’s Hospital. (Photo by Brian Strickland/UNC Health Care)

The Krispy Kreme Challenge is an annual, 5-mile charity race that student volunteers at NC State University created about a decade ago, initially just for fun, and then to raise money for the hospital. The event, always held in February, has grown in size over the years, and now includes about 8,000 runners.

Chris Cooper, a junior in chemical engineering and economics at NC State, is the current executive director of logistics for the race, which does involve eating doughnuts.

“You run 2.5 miles, starting at the NC State Belltower,” Cooper explains, “and then the challengers eat a dozen doughnuts,” which they pick up mid-way, at stations set up in front of the local Krispy Kreme shop.

But most of the runners raise money without scarfing down fried sweets.

“The casual runners normally just pick their doughnuts up and keep running,” Cooper says. “And then you run 2.5 miles back to the Belltower.” The students got permission from the pastry company to use the Krispy Kreme name — but they pay for the doughnuts.

If all that pastry pounding and distance running sounds kind of sickening, well, Cooper says it can be.

“After Krispy Kreme, when people are running back, there is normally a fair amount of throw-up that happens,” he says. “We have a group of students whose job is to go around and clean up the streets.”

Gross, sure. But the race has raised nearly $1 million for UNC Children’s Hospital and clinics so far, and the student leaders have committed to raising another $1 million.

“Behind all of this is a group that’s committed to making a difference for our patients and families,” says Nelson.

UNC Health Care is now having conversations about whether to go through with the name change, Nelson says. An online petition to scrap it has gathered about 13,000 signatures so far.

Marion Nestle, a public health professor at New York University, and former adviser in nutrition policy for the federal government, says public fallout from awkward pairings of corporate brands with health causes has been increasing.

She points to Coca-Cola’s corporate partnership with the American Academy of Family Physicians as another high-profile example.

“There was a big demonstration in front of a California hospital a few years ago,” Nestle says, “in which physicians burned their membership cards to the academy in protest.”

Last summer, the physician’s group and the soft drink company announced they’re ending their deal.

Nestle says that’s certainly not apples to apples with what’s happening at the UNC clinic. But she does think putting Krispy Kreme in the clinic’s name — for whatever reason — sets a bad example for kids.

Race coordinator Chris Cooper says if UNC decides to back off the name change, he’s OK with that.

“I don’t think anyone in the organization was really excited about us having a name on the clinic,” he says. “I think a lot more of it was, ‘How are we going to use this name to help the children’s hospital even more?'”

But, if it isn’t helpful in drawing more people to the race and in raising more money for the good cause, Cooper says, then he has no attachment to the name.

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

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