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Your School Assignment For The Day: Spelling And Specs

DELANO, Calif. — Daisy Leon struggles to sit still and read the letters on the eye chart. Her responses tumble out in a quiet, confused garble.

“You know your letters?” asks optometrist Jolly Mamauag-Camat. “Umm, ya,” says Daisy, almost inaudibly.

The 6-year-old kindergartner had her eyes examined for the first time on a recent Thursday morning. Although she hadn’t complained about headaches or blurry vision, her grandmother noticed she’d been inching closer to watch television.

After Daisy’s failed attempts at reading the eye chart, Mamauag-Camat inspects the little girl’s eyes through a phoropter and writes her a prescription for glasses.

At least 20% of school-age children in the U.S. have vision problems. But according to the Centers for Disease Control and Prevention, fewer than 15% of children get an eye exam before entering kindergarten. Because vision problems tend to worsen the longer they go undetected, many children suffer even though there are often simple, relatively inexpensive solutions such as prescription glasses.

Half of the states plus the District of Columbia require screenings or exams for preschoolers, according to the National Center for Children’s Vision & Eye Health. But California has no such requirement, said Xuejuan Jiang, an assistant professor of research ophthalmology at Keck School of Medicine of USC. California does require them for older children.

“The system in California is not as good as it can be,” Jiang said.

In much of California’s Central Valley, where roughly 1 in 5 people live in poverty, two school districts are working with two nonprofits, the Advanced Center for Eyecare and OneSight, to provide vision care to Kern County’s underserved and uninsured children.

Many of the neediest are the children of farmworkers.

“We are an agriculture-based community,” said Linda Hinojosa, coordinator of health services for the Delano Union School District. “Most of our families harvest table grapes 12 hours a day, with very limited time to take their children in for an eye exam.”

The program, funded by the nonprofits and the school districts, operates five school-based clinics in Bakersfield and Delano. Students receive comprehensive eye exams and glasses, along with free transportation. And breakfast.

Most of the children who visit the clinics have coverage through Medi-Cal, California’s Medicaid program for low-income people. There is no out-of-pocket cost for the eye exams and glasses for them, or for children who are uninsured, said Alexander Zahn, chief business development officer for the Advanced Center for Eyecare.

Almost half of the students examined need glasses.

“The need was very apparent” in the Central Valley, Zahn said. “Sixty dollars for an eye exam and $80 for glasses might be the difference between eating dinner a couple days a week.”

Daisy was among 12 students who were bused to the Delano Union School District Vision Center, adjacent to Pioneer School, an elementary school with about 1,000 students. Almost all the students at Pioneer are Hispanic and about three-quarters qualify for free lunches.

Students from throughout the Delano Union Elementary School District visit the clinic. Since it opened in 2018, the clinic has performed 961 eye exams and prescribed 517 pairs of glasses.

For Daisy, whose parents are farmworkers, the clinic has been a tremendous help.

“They prune out in the fields,” said Guadalupe Leon, Daisy’s grandmother. “They can’t afford to take days off.”

The Delano Union School District Vision Center is funded by multiple sources: OneSight, a nonprofit organization dedicated to increasing access to vision care in underserved communities around the world, donated the ophthalmic equipment and provided grant funding for the first year of operation. The Advanced Center for Eyecare provides staff and supplies. And the school district provides the facility, furnishings and transportation. (Heidi de Marco/KHN)

Twelve students from Nueva Vista Language Academy and Fremont Elementary School arrive by bus for their eye exams and follow-ups. Linda Hinojosa, a registered nurse for 20 years, says lack of transportation is a major barrier to vision care. “Parents a lot of times don’t have a car, or it can be a one-vehicle family,” she says. (Heidi de Marco/KHN)

Students are offered breakfast before their appointments with optometrist Jolly Mamauag-Camat. About three-quarters of students in the district are eligible for free/reduced-price meals. (Heidi de Marco/KHN)

Daisy Leon, a kindergartner at Nueva Vista Language Academy, takes a test to check for color blindness. Before beginning, the optical technician asks Daisy if she understands English. Because of the region’s large Spanish-speaking population, clinic staff members often act as interpreters. (Heidi de Marco/KHN)

Daisy looks into an auto refractor as part of her eye exam. (Heidi de Marco/KHN)

Daisy and Jonathon Castro watch a movie as they wait for their eyes to dilate. This is the first eye exam for both of them. (Heidi de Marco/KHN)

Daisy sits on her knees to see through a phoropter, a device to help determine eyeglass prescriptions. Mamauag-Camat says children often can’t tell if they have vision problems because they don’t know any differently. “They can fall through the cracks,” she says. “They don’t know the difference between what’s clear and not clear.” (Heidi de Marco/KHN)

About 45% of Kern County’s population is on Medi-Cal. Medi-Cal covers vision care, including an eye exam and glasses every two years, but in communities like Delano, access is a problem. “We live in an area with a big shortage of providers, particularly specialty care providers like optometrists and ophthalmologists,” says Alexander Zahn, of the Advanced Center for Eyecare. (Heidi de Marco/KHN)

Daisy picks out glasses right after her exam, a pink pair that she had been admiring all morning. “We need to go where students are,” says Hinojosa. “Vision is absolutely vital.” (Heidi de Marco/KHN)

This KHN story first published on California Healthline, a service of the California Health Care Foundation.

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They Fell In Love Helping Drug Users. But Fear Kept Him From Helping Himself.

She was in medical school. He was just out of prison.

Sarah Ziegenhorn and Andy Beeler’s romance grew out of a shared passion to do more about the country’s drug overdose crisis.

Ziegenhorn moved back to her home state of Iowa when she was 26. She had been working in Washington, D.C., where she also volunteered at a needle exchange — where drug users can get clean needles. She was ambitious and driven to help those in her community who were overdosing and dying, including people she had grown up with.

“Many people were just missing because they were dead,” said Ziegenhorn, now 31. “I couldn’t believe more wasn’t being done.”

She started doing addiction advocacy in Iowa City while in medical school — lobbying local officials and others to support drug users with social services.

Beeler had the same conviction, born from his personal experience.

“He had been a drug user for about half of his life — primarily a longtime opiate user,” Ziegenhorn said.

Beeler spent years in and out of the criminal justice system for a variety of drug-related crimes, such as burglary and possession. In early 2018, he was released from prison. He was on parole and looking for ways to help drug users in his hometown.

He found his way to advocacy work and, through that work, found Ziegenhorn. Soon they were dating.

“He was just this really sweet, no-nonsense person who was committed to justice and equity,” she said. “Even though he was suffering in many ways, he had a very calming presence.”

People close to Beeler describe him as a “blue-collar guy” who liked motorcycles and home carpentry, someone who was gentle and endlessly curious. Those qualities could sometimes hide his struggle with anxiety and depression. Over the next year, Beeler’s other struggle, with opioid addiction, would flicker around the edges of their life together.

Eventually, it killed him.

People on parole and under supervision of the corrections system can face barriers to receiving appropriate treatment for opioid addiction. Ziegenhorn said she believes Beeler’s death is linked to the many obstacles to medical care he experienced while on parole.

About 4.5 million people are on parole or probation in the U.S., and research shows that those under community supervision are much more likely to have a history of substance use disorder than the general population. Yet rules and practices guiding these agencies can preclude parolees and people on probation from getting evidence-based treatment for their addiction.

A Shared Passion For Reducing Harm

From their first meeting, Ziegenhorn said, she and Beeler were in sync, partners and passionate about their work in harm reduction — public health strategies designed to reduce risky behaviors that can hurt health.

After she moved to Iowa, Ziegenhorn founded a small nonprofit called the Iowa Harm Reduction Coalition. The group distributes the opioid-overdose reversal drug naloxone and other free supplies to drug users, with the goal of keeping them safe from illness and overdose. The group also works to reduce the stigma that can dehumanize and isolate drug users. Beeler served as the group’s coordinator of harm reduction services.

“In Iowa, there was a feeling that this kind of work was really radical,” Ziegenhorn said. “Andy was just so excited to find out someone was doing it.”

Meanwhile, Ziegenhorn was busy with medical school. Beeler helped her study. She recalled how they used to take her practice tests together.

“Andy had a really sophisticated knowledge of science and medicine,” she said. “Most of the time he’d been in prison and jails, he’d spent his time reading and learning.”

Beeler was trying to stay away from opioids, but Ziegenhorn said he still used heroin sometimes. Twice she was there to save his life when he overdosed. During one episode, a bystander called the police, which led to his parole officer finding out.

“That was really a period of a lot of terror for him,” Ziegenhorn said.

Beeler was constantly afraid the next slip — another overdose or a failed drug test — would send him back to prison.

An Injury, A Search For Relief

A year into their relationship, a series of events suddenly brought Beeler’s history of opioid use into painful focus.

It began with a fall on the winter ice. Beeler dislocated his shoulder — the same one he’d had surgery on as a teenager.

“At the emergency room, they put his shoulder back into place for him,” Ziegenhorn said. “The next day it came out again.”

She said doctors wouldn’t prescribe him prescription opioids for the pain because Beeler had a history of illegal drug use. His shoulder would dislocate often, sometimes more than once a day.

“He was living with this daily, really severe constant pain — he started using heroin very regularly,” Ziegenhorn said.

Beeler knew what precautions to take when using opioids: Keep naloxone on hand, test the drugs first and never use alone. Still, his use was escalating quickly.

A Painful Dilemma 

The couple discussed the future and their hope of having a baby together, and eventually Ziegenhorn and Beeler agreed: He had to stop using heroin.

They thought his best chance was to start on a Food and Drug Administration-approved medication for opioid addiction, such as methadone or buprenorphine. Methadone is an opioid, and buprenorphine engages many of the same opioid receptors in the brain; both drugs can curb opioid cravings and stabilize patients. Studies show daily maintenance therapy with such treatment reduces the risks of overdose and improves health outcomes.

But Beeler was on parole, and his parole officer drug-tested him for opioids and buprenorphine specifically. Beeler worried that if a test came back positive, the officer might see that as a signal that Beeler had been using drugs illegally.

Ziegenhorn said Beeler felt trapped: “He could go back to prison or continue trying to obtain opioids off the street and slowly detox himself.”

He worried that a failed drug test — even if it was for a medication to treat his addiction — would land him in prison. Beeler decided against the medication.

A few days later, Ziegenhorn woke up early for school. Beeler had worked late and fallen asleep in the living room. Ziegenhorn gave him a kiss and headed out the door. Later that day, she texted him. No reply.

She started to worry and asked a friend to check on him. Not long afterward, Beeler was found dead, slumped in his chair at his desk. He’d overdosed.

“He was my partner in thought, and in life and in love,” Ziegenhorn said.

It’s hard for her not to rewind what happened that day and wonder how it could have been different. But mostly she’s angry that he didn’t have better choices.

“Andy died because he was too afraid to get treatment,” she said.

Beeler was services coordinator for the Iowa Harm Reduction Coalition, a group that works to help keep drug users safe. A tribute in Iowa City after his death began, “He died of an overdose, but he’ll be remembered for helping others avoid a similar fate.”(Courtesy of Sarah Ziegenhorn)

How Does Parole Handle Relapse? It Depends

It’s not clear that Beeler would have gone back to prison for admitting he’d relapsed and was taking treatment. His parole officer did not agree to an interview.

But Ken Kolthoff, who oversees the parole program that supervised Beeler in Iowa’s First Judicial District Department of Correctional Services, said generally he and his colleagues would not punish someone who sought out treatment because of a relapse.

“We would see that that would be an example of somebody actually taking an active role in their treatment and getting the help they needed,” said Kolthoff.

The department doesn’t have rules prohibiting any form of medication for opioid addiction, he said, as long as it’s prescribed by a doctor.

“We have people relapse every single day under our supervision. And are they being sent to prison? No. Are they being sent to jail? No,” Kolthoff said.

But Dr. Andrea Weber, an addiction psychiatrist with the University of Iowa, said Beeler’s reluctance to start treatment is not unusual.

“I think a majority of my patients would tell me they wouldn’t necessarily trust going to their [parole officer],” said Weber, assistant director of addiction medicine at the University of Iowa’s Carver College of Medicine. “The punishment is so high. The consequences can be so great.”

Weber finds probation and parole officers have “inconsistent” attitudes toward her patients who are on medication-assisted treatment.

“Treatment providers, especially in our area, are still very much ingrained in an abstinence-only, 12-step mentality, which traditionally has meant no medications,” Weber said. “That perception then invades the entire system.”

Attitudes And Policies Vary Widely

Experts say it’s difficult to draw any comprehensive picture about the availability of medication for opioid addiction in the parole and probation system. The limited amount of research suggests that medication-assisted treatment is significantly underused.

“It’s hard to quantify because there are such a large number of individuals under community supervision in different jurisdictions,” said Michael Gordon, a senior research scientist at the Friends Research Institute, based in Baltimore.

A national survey published in 2013 found that about half of drug courts did not allow methadone or other evidence-based medications used to treat opioid use disorder.

A more recent study of probation and parole agencies in Illinois reported that about a third had regulations preventing the use of medications for opioid use disorder. Researchers found the most common barrier for those on probation or parole “was lack of experience by medical personnel.”

Faye Taxman, a criminology professor at George Mason University, said decisions about how to handle a client’s treatment often boil down to the individual officer’s judgment.

“We have a long way to go,” she said. “Given that these agencies don’t typically have access to medical care for clients, they are often fumbling in terms of trying to think of the best policies and practices.”

Increasingly, there is a push to make opioid addiction treatment available within prisons and jails. In 2016, the Rhode Island Department of Corrections started allowing all three FDA-approved medications for opioid addiction. That led to a dramatic decrease in fatal opioid overdoses among those who had been recently incarcerated.

Massachusetts has taken similar steps. Such efforts have only indirectly affected parole and probation.

“When you are incarcerated in prison or jail, the institution has a constitutional responsibility to provide medical services,” Taxman said. “In community corrections, that same standard does not exist.”

Taxman said agencies may be reluctant to offer these medications because it’s one more thing to monitor. Those under supervision are often left to figure out on their own what’s allowed.

“They don’t want to raise too many issues because their freedom and liberties are attached to the response,” she said.

Richard Hahn, a researcher at New York University’s Marron Institute of Urban Management who consults on crime and drug policy, said some agencies are shifting their approach.

“There is a lot of pressure on probation and parole agencies not to violate people just on a dirty urine or for an overdose” said Hahn, who is executive director of the institute’s Crime & Justice Program.

The federal government’s Substance Abuse and Mental Health Services Administration calls medication-assisted treatment the “gold standard” for treating opioid addiction when used alongside “other psychosocial support.”

Addiction is considered a disability under the Americans with Disabilities Act, said Sally Friedman, vice president of legal advocacy for the Legal Action Center, a nonprofit law firm based in New York City.

She said disability protections extend to the millions of people on parole or probation. But people under community supervision, Friedman said, often don’t have an attorney who can use this legal argument to advocate for them when they need treatment.

“Prohibiting people with that disability from taking medication that can keep them alive and well violates the ADA,” she said.

This story is part of a partnership between NPR and Kaiser Health News.

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Watch: One Father’s Fight Against ‘Predatory’ Drug Price

Dr. Sudeep Taksali tells “CBS This Morning” about his efforts to get a cheaper version of a drug commonly known as a hormone blocker for his daughter, who has central precocious puberty. The report is the latest collaboration between CBS, NPR and Kaiser Health News on the “Bill of the Month” crowdsourced investigative series.

KHN Editor-in-Chief Elisabeth Rosenthal described how one active ingredient is sold by Endo Pharmaceuticals as two different drugs — the one for children has a price tag of $37,300, while one used in adults goes for $4,400.

Taksali said the discrepancy signals a type of “predation on parents who have that sense of vulnerability, who will do anything within their means to help their children.”

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Trusting Injection Drug Users With IV Antibiotics At Home: It Can Work

Two mornings a week, Arthur Jackson clears space on half of his cream-colored sofa. He sets out a few rolls of tape and some gauze, then waits for a knock on his front door.

“This is Brenda’s desk,” Jackson said with a chuckle.

Brenda Mastricola is his visiting nurse. After she arrives at Jackson’s home in Boston, she joins him on the couch and starts by taking his blood pressure. Then she changes the bandages on Jackson’s right foot. His big toe was amputated at Brigham and Women’s Hospital in November. A bacterial infection, osteomyelitis, had destroyed the bone.

Jackson is still taking intravenous penicillin to stop the infection. He came home from the hospital wearing a small medication pump that delivers a steady dose of penicillin via a PICC line. PICC stands for a “peripherally inserted” or “percutaneous indwelling” central catheter, and it resembles a flexible IV tube, inserted into Jackson’s chest.

“This all looks good,” Mastricola said, after making sure the line was clean and in place. “You don’t need me.”

When patients need weeks or months of IV antibiotic treatment but otherwise don’t need to be hospitalized, the standard protocol is to discharge them with a PICC line and allow them to finish the medication at home. It saves money and is much more convenient for patients.

But this arrangement is almost never offered to patients with a history of addiction. The fear is that such patients might be tempted to use the PICC line as a fast and easy way to inject drugs like heroin, cocaine or methamphetamine.

Jackson, 69, was addicted to heroin for 40 years. Although he’s been sober for years, most U.S. hospitals would force patients like Jackson to stay in the hospital, sometimes for eight weeks or more. But Brigham and Women’s in Boston, along with a few others in the U.S., is challenging that protocol, allowing some patients with a history of addiction to go home.

Supporters of the change argue that doing so boosts the chances these patients will stay on their antibiotics and beat the infection.

A Path To Safe At-Home Treatment

A small team of Brigham doctors and nurses started planning this unusual option shortly after opening the Bridge Clinic, a walk-in health center in Boston for patients seeking treatment for a substance use disorder. Dr. Christin Price, one of the clinic’s directors, said virtually every patient who injects drugs develops some kind of infection. It’s difficult to avoid injecting bacteria into the bloodstream when using drugs in an alley or a public bathroom. The national opioid epidemic has led, in many cases, to a parallel increase in diseases related to injection drug use, such as HIV, hepatitis C and bacterial infections of the heart and bones. A study of North Carolina hospitals found a twelvefold increase in cases of bacterial endocarditis, a heart infection, from 2010 to 2015.

“Every time someone uses injection drugs, they’re putting themselves at risk for a very complicated infection,” Price said.

Treatment options for endocarditis patients with a history of drug use are limited. Some skilled nursing facilities, home care agencies and antibiotic infusion companies decline to work with these patients once they’re released from a hospital. And, Price said, some of her patients aren’t willing to remain in a hospital for weeks on end just to finish a round of IV antibiotics.

“They kind of get stir crazy,” she said. “You can imagine it’s almost like being held captive for six weeks, especially when you’re feeling fine now because the infection is clearing. A huge problem is that some of them can’t last — and so they leave before the six weeks are over.”

Patients who don’t complete their course of antibiotics can end up with a recurring infection and a repeat trip to the hospital.

Doctors and nurses affiliated with the Bridge Clinic wondered if there was a way to send patients with a history of drug use home — safely. They mapped out three requirements: First, patients would have to be taking an addiction treatment medication such as buprenorphine, or be willing to start one. Second, patients would have to check in weekly at the Bridge Clinic. Third, patients would need to have stable housing, and live with a sober friend or loved one. Price and colleagues began months of discussions with specialists in heart, bone and joint conditions, seeking buy-in from surgeons and nurses, so their patients could participate.

“A lot of people did sort of look aghast,” Price said. “It was just their policy that people with a history of injection drug use would not go home.”

When Dr. Daniel Solomon, who is also with Brigham and Women’s, encountered those looks, he said, he’d remind colleagues that “the alternatives aren’t that good either.”

Holding patients for weeks in a hospital room is hard on both the patients and medical providers, he said. And if patients want to use drugs, they’ll find a way to do it, even in a hospital bed.

In spring 2018, Price, Solomon and others enrolled a few of the first qualified patients, then a few more — intentionally cherry-picking those who wanted to be in treatment and had a sober, stable home.

Brenda Mastricola checks on the PICC line through which Arthur Jackson, a former drug user, is receiving penicillin to treat a bone infection.(Jesse Costa/WBUR)

‘I’m Not Going Back’

Arthur Jackson met the requirement that at-home PICC line candidates take addiction treatment medication. He had been on methadone for 10 years, used heroin again, then switched to Suboxone, a combination medication containing buprenorphine and naloxone, which he has been taking for two years. And, in fact, Jackson said he was insulted when one of the doctors presented the home treatment option to him but said she was worried the PICC line might entice him to inject heroin.

“Stop right there,” Jackson recalled telling the nurse. “When it comes to my recovery, I’m serious because I’ve done so much to lick this — this thing.”

Although the possibility did cross Jackson’s mind.

“First thing I thought was, ‘Oh, I could inject heroin in here easily,’” Jackson said. “But I dismissed that thought because I’m not going back” — back to winters on the streets and living from one heroin fix to the next.

Other Bridge patients scoff at the concerns about PICC lines.

“Everyone makes such a big deal about this PICC line,” said Stephen Connolly, 36, who went home with the open port last year, while being treated for endocarditis. “If I want to get high, I know how to do it. I’m not going to mess around with a PICC.”

Connolly said that when he first came to Brigham and Women’s Hospital he was focused on his heart, ignoring his other disease: addiction. He said he was surprised when every doctor he saw, even his cardiologist, wanted to talk about addiction.

“I’m like, ‘Listen, dude. My heart’s falling apart here, so let’s hold up with the drug talk,’” Connolly recalled. He assured the cardiologist he had his addiction under control, even though he wasn’t so sure. “Obviously, I didn’t, but my mind tells me that. It’s just crazy.”

Connolly said he realizes now that the conversation around drug use was relevant and related to his heart infection.

Connolly finished his antibiotic treatment while staying with family members in Abington, Massachusetts. Brigham doctors say the housing requirement excludes otherwise eligible patients. Recent research shows homeless patients who have HIV or hep C do take their antiviral medicines; there are no equivalent robust studies on treating homeless patients who have bacterial infections.

Nevertheless, a few other hospitals are testing ways to continue outpatient treatment for patients who don’t have a stable home. In Portland, Oregon, a medical center tried providing IV antibiotics inside addiction treatment programs. A hospital in Kentucky combines addiction treatment, counseling and outpatient IV antibiotics. In Vancouver, British Columbia, the Canadian national health program pays for small apartments, staffed with a nurse 24 hours a day, where patients can stay while they complete antibiotic treatment.

“People who use drugs deserve the same standard of care,” said Dr. Christy Sutherland, medical director at the Portland Hotel Society in Vancouver. “We can’t change what we offer as clinicians — to give people subpar treatment with the excuse that they are IV drug users.”

Promising Early Signs

Arthur Jackson lives alone in his studio apartment (he does not live with a sober friend or loved one), but he convinced doctors he’d be better off there than in the hospital, so he could visit his 93-year-old mother daily, feed his tankful of tropical fish and his cat, and attend regular Narcotics Anonymous meetings.

“I guess the best way to put it is, I have a life and I need to get back to it,” he said.

Jackson is one of 40 patients with a history of drug use the Brigham team has discharged from the hospital to complete IV antibiotic treatment at home. The team is paying particular attention to 21 patients within that group who, unlike Jackson, are active drug users. So far, these men and women have finished their antibiotic treatment via a PICC line with no complications. One had to be readmitted because he had trouble administering the antibiotics. Price said three patients relapsed into drug use, but no one used the PICC line to inject illegal drugs.

“I think we’ve shown, through this pilot, that it is safe and feasible for certain patients,” Price said.

Brigham doctors have not yet published these initial results in a medical journal, though they plan to. But already, Price said, the pilot program is helping to cut health care costs.

Taken as a group, the 21 high-risk patients who needed IV antibiotics spent 571 days at home rather than in a hospital or rehab facility. Not including the cost of home care visits by a home nurse, the savings tally more than $850,000, based on estimates of $1,500 per hospital day.

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

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The Golden State’s Mixed Record On Lung Cancer

It was a bewildering moment for Zach Jump, the American Lung Association’s national director of epidemiology and statistics. The numbers leaped off the computer screen and prompted an immediate question:

How could California, a leader in reducing lung cancer cases, fall so short on early diagnosis and treatment of the disease?

“It’s like you’d found the needle in the haystack of results,” said Jump. “I don’t know if anyone knew this was going to show up.”

It was right there in the association’s annual “State of Lung Cancer” report, published in November: California had the third-lowest rate of new lung cancer cases in the country, a laudable achievement. But among state residents diagnosed with the disease, nearly a quarter received no treatment — a dismal showing that landed California near the bottom of the heap. Worse, California screened high-risk patients at a lower rate than every state but Nevada.

Nationally, the report showed a dramatic increase in the five-year survival rate of people diagnosed with the disease. That finding was reinforced by an American Cancer Society report released last month showing that from 2016 to 2017, the U.S. experienced the largest single-year drop in cancer mortality ever reported — driven by a decline in deaths from lung cancer.

California’s low rate of new lung cancer cases makes sense given its aggressive anti-tobacco laws and high taxes on tobacco products. Between 85% and 90% of people who die of lung cancer in the U.S. were smokers, and “California is the poster child for tobacco control,” said Jump.

But what explains the state’s dramatically weaker performance on early diagnosis and treatment?

The answer is complicated in a state as large as California, but lung cancer experts agree on the influence of several factors: the state’s large income inequality, broad cultural and linguistic diversity, inconsistency of health care access by region — and neighborhood — and a financial reluctance by many medical professionals to treat poor people, who smoke at higher rates than those of the general population.

“People aren’t getting screened in the places where the incidence of smoking is the highest,” said Dr. Jorge Nieva, an oncologist with Keck Medicine of the University of Southern California.

A low-dose CT scan, the only recommended screening exam for lung cancer, is highly effective, research shows. In one large clinical trial, it reduced lung cancer deaths by 20% among people at high risk, who were defined as those between ages 55 and 80 with a history of heavy smoking, even if they had quit within the previous 15 years.

The lung association study shows that just 4.2% of patients in the United States who are at high risk for lung cancer get screened for it — seen as an alarmingly low figure by those who work in the area of prevention. But compared with that low national figure, California’s screening rate is woefully inadequate: just 0.9%.

Performing the exam is profitable — but only if insurance payments are high enough. Medi-Cal, the government-funded insurance program for low-income people that covers about a third of all Californians, has long paid rates far below the national average.

Not surprisingly, scans are performed much more commonly in areas where people are likely to have good private insurance. “Unfortunately, it’s the population that doesn’t have great insurance that needs the screening the most,” said Nieva.

Medical experts say the state’s low screening numbers help explain why 24% of California’s diagnosed lung cancer patients receive no treatment at all, well above the national average of around 15%. Without adequate screening, lung cancer generally is discovered at later stages, when treatment is far less effective and many clinical trials aren’t offered.

Other factors weigh heavily on California’s ability to boost screening and treatment, according to people with deep experience in the field. Among them:

Cultural barriers. Especially among immigrant groups, “we need culturally sensitive approaches that include materials, educational tools, awareness campaigns and doctors who can speak to people in their native languages,” said Laurie Fenton Ambrose, president and CEO of the GO2 Foundation for Lung Cancer, a patient advocacy group.

Homelessness. As California’s unhoused population has swelled to over 150,000, health care providers have more difficulty reaching those in need of services. “Many of the 60,000 homeless in L.A. County would very likely be considered at risk for lung cancer, and they are not being screened,” said Dr. Steven Dubinett, a pulmonologist at UCLA.

Access to primary care. “California has some uniqueness in how hard it is to see a doctor in lots of parts of the state,” Nieva said. “That’s incredibly important when it comes to getting things early on, like that persistent cough you’ve had for a few months.”

Lack of statewide coordination. The state’s Comprehensive Cancer Control Plan hasn’t been updated in almost a decade. “It is inefficient and slow to improve. You don’t even have a plan that lays out its goals for fighting lung cancer,” Fenton Ambrose said.

Numerous personal factors can also influence whether patients get screening and treatment, experts say. Some people may be reluctant to be tested for fear of learning they have a terrible disease — including medical problems unrelated to lung cancer that the exam might uncover.

Nieva and Fenton Ambrose said the stigma attached to lung cancer — the notion that patients caused it themselves by smoking — can contribute to a sense of fatalism in both patients and their doctors.

Dubinett favors rolling out screening programs throughout the state, especially in areas where access to health care is spotty. Given the effectiveness of the exams and follow-up treatment if lung cancer is detected early, the state might well improve upon its five-year survival rate for lung cancer patients, which stands at 21.5% — roughly matching the national average of 21.7%, according to the lung association.

Such an initiative may fall to the state, with help from academic medical systems including USC and UCLA.

Nieva noted that USC has begun an outreach program in South Los Angeles offering high-risk patients free rides to Keck Hospital for screening.

“This should be getting done everywhere, and at a 100% rate,” Nieva said. The fact that it’s not is “a real indictment of our health care system.”

This KHN story first published on California Healthline, a service of the California Health Care Foundation.

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Hormone Blocker Shocker: Drug Costs 8 Times More When Used For Kids

Dr. Sudeep Taksali, an orthopedic surgeon, became worried that his 8-year-old daughter had already grown taller than his 12-year-old son. And sometimes she had an attitude more befitting a teenager. Something seemed wrong.

Taksali and his wife, Sara, realized their daughter had grown 7 inches in two years and was showing signs of puberty. They took her to the doctor, who referred her to a pediatric endocrinologist for a work-up.

Eventually, their daughter was diagnosed with central precocious puberty. It’s a rare condition that meant she would go through sexual development years earlier than her peers and would likely stop growing prematurely, too.

Adopted two years ago from India, she’s a bright, avid reader who loves to do kettlebell workouts with her dad and Zumba with her mom. Still, moving across the world and learning a new language is no easy feat.

“Having one more thing for her to deal with … where there might be maybe some negative attention drawn to her changing body,” Taksali said. “That was one of my big concerns.”

On the advice of their daughter’s doctors, the Taksalis decided to put her early puberty on hold. The recommended treatment is a product commonly known as a hormone blocker. Implanted beneath the skin in her arm, it releases a small dose of a drug each day that increases the body’s production of some hormones while decreasing others. The result is the child’s progression toward adulthood slows.

Taksali’s 8-year-old daughter recently underwent treatment for central precocious puberty, or early puberty. Her father, an orthopedist, worked with her doctor and their health insurance provider to get the less expensive of two nearly identical drugs with vastly different price tags.(Kristina Barker for KHN)

The doctors told them there were two nearly identical drug implants — each containing 50 milligrams of histrelin acetate — made by the same company, Endo Pharmaceuticals, an American drugmaker domiciled in Ireland. But one was considerably cheaper.

Taksali wanted his daughter to get the less expensive option, but his insurer said it would cover only the more expensive option. Resigned, he asked the hospital how much it would charge for the expensive drug he had been hoping to avoid.

Then the estimated bill came.

The Patient: Sudeep Taksali’s daughter, 8. She is insured through her father’s high-deductible UnitedHealthcare plan.

Total Estimated Bill: The hospital told Taksali the insurer wouldn’t cover the cheaper version of the drug, Vantas. After that, he spent hours trying to get an estimated bill ahead of the scheduled implantation. Supprelin LA would cost around $95,000 plus the cost of implantation, the hospital’s billing department told him. Under his health plan, he has a $5,000 deductible and 20% coinsurance obligation, so he was worried how much he might owe.

Service Provider: OHSU Hospital in Portland, Oregon, part of Oregon Health & Science University.

Medical Procedure: Implantation of a drug-delivery device containing 50 mg of histrelin acetate, to stave off early puberty.

What Gives: Supprelin LA was approved by the Food and Drug Administration in 2007 for central precocious puberty and has a list price of $37,300. Vantas was approved by the FDA in 2004 for late-stage prostate cancer and has a list price of $4,400.

The main difference between the two medicines is that Supprelin LA releases 65 micrograms of the drug a day, and Vantas releases 50 micrograms a day. Each implant lasts about a year.

The 15-microgram difference in daily dose with Vantas is less than the weight of an eyelash, and the doctors who recommended the treatment said it has the same effectiveness for children with central precocious puberty.

The much higher price for the children’s version of the drug grated on Taksali. “From a parent standpoint, as a physician, as a consumer, it feels abusive,” he said. “There’s sort of a predation on parents who have that sense of vulnerability, who will do anything within their means to help their children.”

Taksali questions why Endo Pharmaceuticals makes two nearly identical drug delivery implants with vastly different prices.(Kristina Barker for KHN)

Drugmakers can use the same chemical compound to create different branded drugs with different disease targets ― and apply for FDA approval for each. FDA spokesperson Brittney Manchester said by email, “Generally, it is the sponsor’s decision.” Endo makes both Supprelin LA and Vantas.

Indeed, other drugmakers have used the maneuver: Pfizer makes two versions of sildenafil citrate: Viagra for erectile dysfunction and Revatio for pulmonary arterial hypertension.

When we asked Endo Pharmaceuticals why Supprelin LA and Vantas had such different price tags, the company said the implants aren’t identical and treat very different conditions. It didn’t respond to questions about why that meant the prices should be different and whether it was somehow more expensive to manufacture one versus the other.

Resolution: Taksali spent more than a month trying to make sure his daughter could use the cheaper drug and, finally, the week his daughter was scheduled to have the procedure, it was approved. The hospital submitted the request again and UnitedHealthcare said it would cover it.

“Our coverage policies are aligned with FDA regulations and Vantas is not FDA approved to treat central precocious puberty,” UnitedHealthcare spokesperson Tracey Lempner said in an email. “In this specific case, when the provider expressed concern over the cost of Supprelin LA, we worked with them to allow for coverage of Vantas.”

Taksali’s daughter got the Vantas implant in late January.

The hormone-blocking implant was placed on the young patient’s arm to treat central precocious puberty, or early puberty.(Kristina Barker for KHN)

When he got a breakdown of charges afterward, it listed $608 for the implantation and $12,598.47 for Vantas — about three times its list price. (Hospitals add markups to the list prices.) Still, that’s far less than the $95,000 the Supprelin LA bill would have been.

According to his explanation of benefits, after insurance, Taksali will owe $4,698.45 ― most of his high deductible. Because it is early in the year, the family had not yet spent any of its 2020 deductible.

Taksali said he fought for the lower cost drug on principle.

“Even if it is the insurance company’s money, it’s still somebody’s money,” he said. “We are still contributing to those premium dollars.”

On the day the Taksali family adopted their daughter from India, she and her brother were about the same height. Now she is about 5 inches taller than him despite being more than three years younger.(Courtesy of Sudeep Taksali)

The Takeaway: If you need an expensive drug, the first thing you should do is ask your doctor if there are cheaper alternatives. Often different formulations of the same chemical compound carry vastly different prices. In this family’s case, the version to treat prostate cancer patients was far cheaper than the pediatric version for a hormone imbalance.

More commonly, the different formulations relate to different dosages ― two 250 mg tablets may be cheaper than a 500 mg pill. Likewise, a pill you have to take three times a day may be far less expensive than the once-a-day extended-release version.

When a coverage denial leads to costly care, patients can ally with their health care providers or employers to appeal, though it can be time-consuming. Self-insured employers, in particular, won’t want to waste health care dollars either. For Taksali, using social media to direct-message UnitedHealthcare garnered prompt responses and some answers.

If there aren’t other options, drug manufacturers often offer coupons to help patients with their copays. You can find some using GoodRx or by visiting the drugmaker’s website directly.

KHN senior correspondent JoNel Aleccia contributed to this report.

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

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KHN’s ‘What The Health?’: The Labor Pains Of ‘Medicare For All’


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Labor unions are divided over whether to endorse a Democratic candidate for president in 2020 — and, if so, whom to choose. Some unions are firmly behind the “Medicare for All” plans being pushed by Sens. Bernie Sanders and Elizabeth Warren. But the influential Culinary Workers Union in Nevada declined to endorse any candidate, with members worried about what might replace the generous benefits they won by bargaining away wage increases.

Meanwhile, a federal appeals court panel unanimously ruled that the Trump administration violated Medicaid law when it approved work requirements for beneficiaries in Arkansas. The ruling puts similar requirements in doubt in several other states.

This week’s panelists are Julie Rovner of Kaiser Health News, Alice Miranda Ollstein of Politico, Jennifer Haberkorn of the Los Angeles Times and Rebecca Adams of CQ Roll Call.

Among the takeaways from this week’s podcast:

  • Health care remains a top issue for voters, but candidates, eager to set themselves apart from the pack, are failing to point out the major policy differences they have with President Donald Trump. For example, at the Las Vegas debate Wednesday, no one mentioned the abortion case coming to the Supreme Court in March or the appeals court case that could invalidate the entire Affordable Care Act.
  • The Trump administration has approved Medicaid work requirements in more than a half-dozen states, with at least eight more pending. All of those state plan approvals are put in doubt by the appeals court opinion that such requirements violate the Medicaid statute.
  • Enrollment in Covered California, the state’s ACA exchange, grew by almost half a million from 2019 to 2020, the state just announced. California did many things other states did not, including extending premium subsidies higher up the income scale, reinstating the penalty for not having coverage that was zeroed out by Congress, and spending millions of dollars on outreach.
  • COVID-19, the novel coronavirus that originated in China, is complicating public health efforts way beyond that nation. U.S. firms are worried about shortages of drugs and drug ingredients that are made in China, and misinformation is spreading even more rapidly than the illness.

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

Julie Rovner: CNN.com’s “Nation’s Largest Teachers Unions Call to End Active Shooter Drills Over Fears They’re Traumatizing Students,” by Leah Asmelash

Alice Miranda Ollstein: The Washington Post’s “Trust and Consequences,” by Hannah Dreier

Rebecca Adams: The New York Times’ “The Health System We’d Have if Economists Ran Things,” by Austin Frakt

Jennifer Haberkorn: Kaiser Health News’ “Ink Rx? Welcome To The Camouflaged World Of Paramedical Tattoos,” by Cara Anthony


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‘An Arm And A Leg’: What We’ve Learned And What’s Ahead For The Show


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In this bonus episode of “An Arm and a Leg,” reporter and colleague Sally Herships (“Planet Money,” “Marketplace”) takes a turn in the host’s chair.

The conversation covers what we have learned so far and what’s ahead for the show.

You’ll hear stories culled from the cutting-room floor, including an early adventure from the medical-bill ninja profiled early on in Season 3.

We also dig into the stories — and lessons — listeners have shared with the show.

Looking ahead to Season 4, our question is: “How do we make this into kind of a community education project? We’ve profiled a ninja. Now, how do we build a dojo?”


Season 3 is a co-production of Kaiser Health News and Public Road Productions.

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KHN’s ‘What The Health?’: Live from D.C. With Rep. Donna Shalala


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President Donald Trump’s proposed budget for the fiscal year that begins in October proposes big cuts to popular programs, including Medicaid and the National Institutes of Health. Although those cuts are unlikely to be enacted by Congress, both Republicans and Democrats are likely to use the budget blueprint as a campaign issue.

Meanwhile, several House committees this week relaunched work on legislation to address “surprise” medical bills — unexpected charges from out-of-network providers. And Congress is still trying to come to a bipartisan agreement on how to address drug prices.

Rep. Donna Shalala (D-Fla.) was the special guest for this week’s podcast, taped before a live audience at the Kaiser Family Foundation headquarters in Washington, D.C. Also joining host Julie Rovner of Kaiser Health News were Paige Winfield Cunningham of The Washington Post, Rebecca Adams of CQ Roll Call and Joanne Kenen of Politico.

Among the takeaways from this week’s podcast:

  • One surprise in the president’s budget is a proposal to move tobacco regulation out from under the Food and Drug Administration’s purview. That comes despite a law Congress passed several years ago that specifically named the FDA as the regulator for tobacco.
  • Last year, it seemed clear that Congress and the White House were determined to find a way to protect consumers from surprise medical bills. But heavy lobbying on the issue and deep fissures in pinpointing the best remedy have slowed that effort. Shalala said she thinks Congress will produce a bill this year that will be balanced so that insurers and medical providers have to compromise.
  • Shalala said that in the 21 town meetings she has held in South Florida, no one has asked about efforts to end surprise bills. Most of the health questions focus on high drug prices and out-of-pocket costs. High out-of-pocket costs have been driven by the large number of people shifted into high-deductible insurance plans.
  • Shalala also said she doesn’t expect a plan to import drugs from Canada, endorsed by the Trump administration and some states, to go forward. Drugmakers sell Canada enough medicine to cover the population there, and not consumers in Florida, she added.

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