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When Medical Bills Stack Up, Many Turn To Crowdsourcing Sites

NPR’s Lulu Garcia-Navarro speaks with Lauren Carmen, who used crowdsourcing to help pay medical expenses from breast cancer and delivering premature twins.

LULU GARCIA-NAVARRO, HOST:

Medical bills are the leading cause of U.S. bankruptcies. Even people with health insurance can take a huge financial hit if they get seriously ill in America today, leaving them financially ruined. So an increasing number of people are using crowdsourcing to get help. It’s a sign of the scale of the problem that over half of the campaigns on sites like GoFundMe or YouCaring involve an appeal for donations for surgery or complicated births or serious illnesses.

To understand why people end up turning to crowdsourcing, we’re joined now by Lauren Carman. In 2016, she gave birth to twins prematurely, who ended up in the ICU for many months at a hospital in San Francisco, hundreds of miles from her home. Then last August, Lauren was diagnosed with stage 3 breast cancer, which has involved chemo and radiation treatments. And she’s on the line now from member station KQED.

Welcome to the program.

LAUREN CARMAN: Thank you.

GARCIA-NAVARRO: Oh – I must ask you at first, how are you doing?

CARMAN: Today is a really good day. It’s been two weeks since my last chemo treatment, and I’m starting to feel better. And it’s really nice to be looking forward.

GARCIA-NAVARRO: If you can talk to us a little bit about the financial burden of what happened to your twins and also to you – you have health insurance. Right?

CARMAN: I do. I actually have excellent health insurance through my employer. But even with health insurance, you have co-pays that you don’t expect. You have transportation costs. You have childcare, too. All these things – you know, there are certain things that are only covered to 80 percent. And 20 percent of lab work really can add up when you have Type 1 diabetes and breast cancer.

GARCIA-NAVARRO: You have Type 1 diabetes as well?

CARMAN: I do, for 26 years.

GARCIA-NAVARRO: So when you started feeling like this was going to be difficult financially, how did it happen that you turned to crowdsourcing?

CARMAN: A really good friend of our family, Dixie Hall – she knew that we were going to be in trouble. I’m an elementary teacher. I teach at a Montessori school, and my husband’s a full-time student. And so I think she just kind of identified that this was going to be an issue, and so she began the campaign for us.

GARCIA-NAVARRO: So what was the response?

CARMAN: It was overwhelming. I just – I get emotional when I talk about it because it’s – we just had so many people that – friends and family and people from the different educational communities that I’ve been part of over the last decade. People we don’t even know came and saw what our story was and donated money. And we’ve just been overwhelmed. It’s just – it’s replaced a significant part of my salary, and it’s really allowed me to focus on healing and taking care of these babies and allowed us to be together as a family during this really difficult period.

GARCIA-NAVARRO: So many Americans find themselves in a similar position. Do you reflect on that? Do you think it’s an important tool to help people? Or should there be other mechanisms to help people in your situation?

CARMAN: Well, especially with the political climate the way that it is now, I think we’re going to see more of this. I think we’re going to see more people with less help from insurance, and that’s extremely concerning to me. I think that it is an option. It’s really hard to ask for help. That was something that was hard for me to do, and it’s hard to accept help sometimes. And this is what got us through, and I would encourage people to consider it in their situation. But I think we are going to, unfortunately, see more of this – more need because people are going to be uninsured or underinsured.

GARCIA-NAVARRO: May I ask also how your twins are doing?

CARMAN: Oh, my gosh. They’re amazing. They’re – I’m just so in love. And they’re just an absolute joy. And (laughter) right now we’re in a throwing-food-on-the-floor phase and putting it in their ears and their belly buttons. And it’s just a really fun age.

GARCIA-NAVARRO: That’s elementary school teacher Lauren Carman. Thanks so much for speaking with us.

CARMAN: You’re so welcome. Thanks for inviting me.

GARCIA-NAVARRO: And best of luck.

CARMAN: Thanks.

(SOUNDBITE OF KAKI KING SONG, “YOU DON’T HAVE TO BE AFRAID”)

Copyright © 2017 NPR. All rights reserved. Visit our website terms of use and permissions pages at www.npr.org for further information.

NPR transcripts are created on a rush deadline by Verb8tm, Inc., an NPR contractor, and produced using a proprietary transcription process developed with NPR. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.

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Sen. Tim Kaine Responds To Baseball Shooting

Steve Inskeep talks to Sen. Tim Kaine of Virginia and NPR’s Domenico Montanaro about Senate reactions to the baseball shooting, and reports about President Trump and the Russia investigation.

STEVE INSKEEP, HOST:

We’ve been through another breathtaking 24 hours of news. Yesterday started with a shooting at a Republican congressional baseball practice. It ended with a report by The Washington Post that President Trump faces investigation by a special counsel for possible obstruction of justice. Along the way, Senate Republicans have been trying to focus on health care legislation. Let’s talk all this through with Senator Tim Kaine of Virginia.

Senator, good morning.

TIM KAINE: Good to be with you, Steve. Thanks.

INSKEEP: So a lot of information is out there publicly about what the president did and didn’t do about the investigation into Russian interference. Do you see obstruction of justice?

KAINE: Well, that is a question for the special prosecutor. And I am extremely glad he’s on the case. That gives me comfort that we will get to the bottom of this. But the key issue is he fired the FBI director who was in the middle of investigating folks connected to the White House and then told both CBS News and Russian diplomats that the reason for the firing was the Russia investigation and that the pressure of the Russian investigation would now be off. So once the firing happened and the president essentially acknowledged that it was because of the Russia investigation, I was completely unsurprised to hear that the special prosecutor is looking at that…

INSKEEP: Is it…

KAINE: …And asking whether it’s obstruction.

INSKEEP: Is it fair that we’re told about this because, as you know, the president’s lawyer has denounced this – what’s described as a leak?

KAINE: Whether it’s fair or not, I’m sure that the fact that this has come out was in response to stories that the president was thinking about firing the special prosecutor. You know, that was a shocker. When President Nixon fired the special prosecutor Archibald Cox during the Watergate investigation, it basically set the path in stone toward the end of his presidency in disgrace. That was viewed by all as an admission of guilt. And so when the word was coming out from close associates with the president that he was thinking about firing the special prosecutor, that was probably a bridge too far for some. And they revealed what frankly should not be surprising to anybody – that that is one of the items they’re looking at.

INSKEEP: Oh – which essentially makes it much harder for the president to get away with firing the special prosecutor, should he ever decide to do that.

KAINE: I would think that would be very, very difficult. And it would be viewed by the public accurately as fear of what the investigation was going to uncover.

INSKEEP: Senator, what did yesterday’s shooting outside of Washington, D.C., involving Republican members of Congress say, if anything, about our political environment right now?

KAINE: It was very shocking, Steve. I was in the Wednesday morning weekly Senate bipartisan prayer breakfast, which is a tradition that goes back to the 1950s, where senators of both parties – and former senators – gather every Wednesday morning. When we were – we’d just heard the news before we walked in around 8 o’clock and prayed for our colleagues. We had senators that we like very much who were there. Rand Paul was there; Jeff Flake was there. And we were very worried. When something like that happens, immediately, what everybody up here thinks is, my family at home will hear there’s been a shooting of members of Congress…

INSKEEP: Yeah.

KAINE: …And they will worry that it’s me. And so…

INSKEEP: Better call home.

KAINE: …Everybody was calling their families. And so it was a very, very difficult morning. And I do think, you know, it raises the need for all of us to elevate the quality of our interactions with each other. We shouldn’t be demeaning each other personally. We shouldn’t be demeaning the institutions of government or tearing down the institutions of government.

I had an interview with a secretary of the Treasury the other day, and I asked him a question about whether there could ever be a good shutdown of the government. And he didn’t stand up and say shutting the government of the United States down is always a bad thing. I think we’ve got to elevate what we say about each other and about our institutions. And a day like that or an incident like that probably forces us all to look in the mirror, and that’s not a bad thing.

INSKEEP: Congressman Dave Schweikert was on the program earlier, Republican of Arizona, and he described a particularly toxic political environment that he felt was aimed at Republicans right now. Are things getting a little extreme as people oppose President Trump?

KAINE: I don’t – I think that’s unfair. I think it’s a – you know, we certainly see – I mean, we certainly see a whole lot of just incredible, incredible animosity aimed at Democrats. I’m thinking about the – you know, the Infowars story a few months ago that led somebody to walk into a pizza parlor in D.C. and shoot it up.

So there’s a lot of very extreme rhetoric out there. And for somebody to try to make a partisan point and say, you know, one side is to blame, or the other side is to blame – that is itself a move that’s about division and sometimes even inspiring anger. We should be above that.

INSKEEP: Very briefly…

KAINE: But I – but we’re going to – you know, we’ll get more facts on the shooting. But I do think this sort of toxic stew of sharp rhetoric and emotions, easy access to guns, mental health issues – that they tend to combine, and they probably all play a part in something like this. And all of those are things that we should be looking at.

INSKEEP: Very briefly, Senator – I know that Senate Republicans are moving closer to voting on health care legislation that’s being designed in secret, so to speak. Can you stop it, though?

KAINE: We’re going to do everything we can because anything designed in secret without hearing from patients, doctors, (inaudible) and without allowing Democrats to at least make proposed amendments is destined to be bad for the American public. We should be having an open process. And I introduced a bill yesterday with a number of Democrats to try to stabilize the individual insurance market using a tool that is a bipartisan tool, reinsurance that we currently do under Medicare Part D with the support of both parties. And that helps hold Medicare Part D costs down. I’m proposing a similar mechanism to hold health care costs down in the individual market.

There are solutions that are bipartisan, but we’re waiting for the Republicans to open the door to allow both the public and Democrats to participate in crafting those solutions.

INSKEEP: Virginia Senator Tim Kaine, Democrat – thanks very much. Really appreciate it.

KAINE: Hey – so good to be with you. Thank you, Steve.

INSKEEP: And NPR political editor editor Domenico Montanaro has been listening in to all of that. And Domenico, what strikes you about what the senator said?

DOMENICO MONTANARO, BYLINE: Well, I mean, both sides have, you know, engaged in rhetoric and hyperbole during these campaigns that really is out of control. You know, you see it in your social media feeds. It – regardless of who you are, if you’re public-facing at all, you get some of this targeted at you. And everyone has sort of retreated to their corners and winds up pointing the finger at somebody else. You know, you hear Tim Kaine say that it’s unfair to say that Democrats are being unfair to President Trump and that there are a lot of Republicans who are being unfair toward Democrats. It’s incumbent on both sides to be able to elevate the rhetoric. I’m not sure that it’s going to happen because partisanship has divided so – has gotten so much further apart over the last few years.

INSKEEP: Divided people’s perceptions of what the facts are that they even argue about. Domenico, thanks very much.

MONTANARO: Thank you.

Copyright © 2017 NPR. All rights reserved. Visit our website terms of use and permissions pages at www.npr.org for further information.

NPR transcripts are created on a rush deadline by Verb8tm, Inc., an NPR contractor, and produced using a proprietary transcription process developed with NPR. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.

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Medicaid Cuts In Wisconsin Would Undermine Training For Adults With Disabilities

Justine Orr (right), program manager for Our Place Day Services, helps David Breuer chop tomatoes during a cooking class at the center north of Milwaukee. Nearly all the center’s clients pay for services with funds from Medicaid.

Sara Stathas for NPR

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Sara Stathas for NPR

It’s morning meeting time at Our Place Day Services, a day center for adults with disabilities, housed in a small concrete and glass building on Lovers Lane in Slinger, Wis.

About 30 people are gathered here, around a long table, reciting the pledge of allegiance. One man paces alongside the table, another sits in a wheelchair a few feet away. There’s a woman holding a baby in her lap and a friendly dog — a goldendoodle — wandering around greeting people with a sniff and a lick.

A modest operation based north of Milwaukee, on Interstate 43, Our Place serves as a safe place for people with severe cognitive disabilities to spend their days and learn news skills while the family members who usually care for them are at work.

Clients at Our Place can participate in fun activities — do art or go bowling with staff from the center — and they also work on specific skills like money management or cooking. The center provides the sort of crucial support services that many people are concerned will no longer be offered if Republicans proceed with their planned cuts to Medicaid.

On this Monday morning the clients at Our Place are sharing their goals — big and small. One man wants to finish a mosaic he’s working on, while a woman down the table says she hopes to go to the movies with a friend someday.

Danielle Wirsbinski reads from a long list.

Danielle Wirsbinski (left) and Melissa Rodriguez prepare their lunch together during the cooking class.

Sara Stathas for NPR

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Sara Stathas for NPR

“To have a job, to do more volunteering, learn new skills, talk …. taking classes, go to school, to live on my own,” she says.

Another group member, Eric S. (who asked that we not use his last name because he’s not comfortable going public about his condition), describes the work he’s doing to be able to live on his own someday.

“Learning how to cook with Justine. Justine teaches me how to shop,” he says, referring to Justine Orr, a staffer who works with him at Our Place. “I learn how to clean with Justine and I did safety skills in the home.”

“We help men and women become the men and women they were meant to be,” says Donna Ellenbecker, director of Our Place.

But she’s worried about the Republican plan to overhaul Medicaid.

All but one of her 33 clients pay for their classes and care at Our Place with Medicaid dollars. Wisconsin’s Medicaid system includes a program called IRIS that grants people with disabilities a budget, based on their level of need, to use for services that help them live in the community.

The state’s approach is part of a national trend in recent decades to move people with severe developmental disabilities out of institutional settings by providing the support they and their families need to live more independently – either with their families, in community-based group homes or even on their own.

“Many of our people are interested in having their own apartment someday, and are living with their parents now,” Ellenbecker says. “They really need some help with the everyday skills of cooking and cleaning and doing the things that everyone else does to be able to live independently.”

President Trump and Republicans in Congress want to restructure the way Medicaid is funded. Instead of paying for all the medical care and services beneficiaries need, the health care bill Republicans passed through the House last month would grant each state a fixed sum per beneficiary based on what the state has spent in the past.

That per-capita allowance would increase over time, but at a slower rate than health care costs generally rise. So the Congressional Budget Office estimates that Medicaid funding under the plan would be 25 percent less in 10 years than it would be under current law.

“We’re no longer going to measure compassion by the number of programs or the number of people on those programs but by the number of people we got off those programs,” White House Budget Director Mick Mulvaneysaid last month. “We’re no longer going to measure compassion by the amount of money that we spend but by the number of people that we help.”

While Medicaid is best known as a health care program for poor people, more than 80 percent of its budget goes to care for the elderly, children and people with disabilities, according to the Kaiser Family Foundation. Only 15 percent goes to health care for able-bodied adults, the people that Mulvaney was likely referring to in his remarks.

Client John Neu (left) learns to make a cheeseburger with tips from Justine Orr. Our Place Day Services also teaches clients many work skills, how to manage money and how to be more independent socially.

Sara Stathas for NPR

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Sara Stathas for NPR

The program has been growing in recent years and it now makes up almost 10 percent of federal spending. That’s why it’s the top target in President Trump’s proposed budget, and figures prominently in the House Republican proposal to replace the Affordable Care Act, also known as Obamacare. Some estimates suggest the program could be cut by more than a trillion dollars over 10 years.

But some Republicans in the Senate, who are now hammering out their own plan to replace Obamacare, are hesitant to make such big cuts to services for the poor, elderly people and those with disabilities.

The people who come to Our Place each day aren’t likely to be among those who can “get off” Medicaid. They’re likely to need care and support services for their entire lives.

Ellenbecker describes how her program helps people engage in the community.

“We actually have a class that’s a date,” she says. “You know, ‘how you go to the movies with a friend.’ “

That everyday joy has a number of steps — you have to figure out transportation, money, movie times and simply how to choose a seat in a theater.

To navigate all that, the woman who’d listed going to a movie as one of her goals “would need somebody to come with her to help her with all of those things,” Ellenbecker says, “because she doesn’t have the skills to be able to do it independently right now.”

Orr helps serve the lunch Breuer and other day center clients prepared during their cooking class.

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Sara Stathas for NPR

Other group members benefit from a job coach who can help them learn how to find and do a job, or keep one. Others need help managing money, cleaning their homes or getting to work. And other clients have even more basic needs, such as personal care and help with eating.

Ellenbecker worries that if the current Republican plan is passed, or the kinds of budget cuts Trump is proposing go through, the money for those support services just won’t be there.

“It’s a 25 percent cut you know, and a 25 percent cut it is going to affect these programs,” she says. “There’s no way that a 25 percent cut can come out of any other program — except long-term care.”

That’s because many support services are considered optional under the law that governs Medicaid. So, if state lawmakers are forced to choose between say, job coaches, and traditional medical care, the job coaching is likely to lose out.

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Nevada May Become First State To Offer Medicaid To All, Regardless Of Income

A bill that would allow Nevadans without insurance to buy into Medicaid starting in 2019 awaits Gov. Brian Sandoval’s signature or veto.

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Kevin Clifford/AP

Nevadans will find out this week whether their state will become the first in the country to allow anyone to buy into Medicaid, the government health care program for the poor and disabled.

Earlier this month, Nevada’s legislature, where Democrats hold the majority, passed a “Medicaid-for-all” bill, and it’s now on Republican Gov. Brian Sandoval‘s desk awaiting his signature or veto. If he does not act by Friday, it will automatically become law.

State lawmakers hope the proposal will give Nevadans a cheaper health insurance option as premiums for individual health insurance rise. The move comes as Republicans in the U.S. Congress are working to roll back the expansion of Medicaid that happened under President Barack Obama.

“With the uncertainty and mixed messages coming from our current federal administration in regard to health care and health care accessibility, there is an absolute need for states to become more reliant on providing insurance options to its citizens,” said Assemblyman Mike Sprinkle, who sponsored the bill.

Under the proposal, Medicaid coverage would be offered alongside commercial insurance on Nevada’s state-run health exchange starting in 2019. Sprinkle says he’s not sure what the coverage would cost. The state would conduct an analysis of the Medicaid program to determine the size of premiums.

They would likely be lower than traditional insurance premiums, because Medicaid reimburses doctors less than most insurance plans and also pays lower prices for prescription drugs.

“If the expansion goes away, I really think this is going to be a viable option for those who lose coverage,” Sprinkle says. He estimates about 300,000 Nevadans may enroll.

He says that if the Republican health care bill becomes law, people could use the tax credits in the bill to buy into Medicaid. And if it doesn’t, they could still use their tax credits and subsidies from the Affordable Care Act, or Obamacare, to buy in.

To be able to sell policies on the exchange, Nevada would have to get approval from the Centers for Medicare and Medicaid Services in the form of a waiver. Sprinkle says he has had discussions with CMS officials who were open to the idea.

CMS administrator Seema Verma has said she wants to allow states to experiment with their Medicaid programs and make it easier for them to get waivers.

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A Drugmaker Tries To Cash In On The Opioid Epidemic, One State Law At A Time

The maker of a medical treatment for opioid abuse has successfully lobbied statehouses around the country to pass policies that sway addiction treatment practices in favor of the company's drug.

Kim Ryu for NPR

Two years ago, a mental health advocate named Steve McCaffrey stood at a lectern in the Indiana statehouse, testifying in favor of an addiction treatment bill. After years of rising overdose rates, lawmakers in the health committee were taking action to combat the opioid epidemic. And they often turned to McCaffrey, who leads Mental Health America of Indiana, to advise them.

His brief testimony appeared straightforward. “We rise in support, urge your adoption,” said McCaffrey. He said the legislation would move the state “toward evidence-based treatment.”

But the bill wouldn’t do that. Instead, it would cement rules making it harder to access certain addiction medications — medications that many patients rely on. The goal was to steer doctors toward a specific brand-name drug: Vivitrol.

The drug is a monthly shot used to treat alcohol and opioid addiction and one of a handful of FDA-approved treatments for addiction to opioids such as pain relievers, heroin and fentanyl.

State Rep. Steve Davisson, the bill’s sponsor, says McCaffrey helped write the bill, one of many related to addiction treatment that McCaffrey has worked on since 2015. But there was something important that Davisson and other lawmakers didn’t know about him.

State lobbying records show that McCaffrey lobbies for Alkermes, the company that makes Vivitrol.

Asked earlier this year whether Indiana lawmakers knew about his lobbying for Alkermes, McCaffrey said, “I imagine some do and some don’t.” But several lawmakers who have worked closely with McCaffrey, including Davisson, say they were not aware.

Steve McCaffrey in his office.

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Jake Harper/Side Effects Public Media

His efforts have helped turn Indiana into what Alkermes describes in investor documents as an “up-and-coming” state, where the drug’s sales are poised to jump dramatically.

McCaffrey’s work promoting Vivitrol via legislation in Indiana is part of a larger pattern. An investigation by NPR and Side Effects Public Media has found that in statehouses across the country, and in Congress, Alkermes is pushing Vivitrol while contributing to misconceptions and stigma about other medications used to treat opioid addiction.

While policymakers are grasping for solutions to the nation’s opioid epidemic, Alkermes, which has its U.S. headquarters in Waltham, Mass., is using policy to promote its drug and, in some cases, hamper access to medications that can help. And in so doing, it’s looking to turn its drug into a blockbuster.

Science vs. stigma

There’s growing urgency among state policymakers to fight the addiction epidemic. The number of opioid overdose deaths quadrupled from 1999 to 2015. In that year, an average of 91 people died per day. There are now more deaths from overdoses in the U.S. than from car accidents. Opioids cause most of them.

But those looking for large-scale solutions to the crisis must navigate diverging views on treatment, making them receptive to lobbyists who attempt to guide them through medically complex and emotionally charged territory. Among those devoted to helping people addicted to opioids, there are conflicting opinions about the role of medications in recovery.

Medical researchers emphasize that the proven standard in addiction treatment includes medication, preferably combined with counseling and other behavioral and social support. The research shows that medication-assisted treatment helps prevent relapse and save lives. The National Institute on Drug Abuse, Substance Abuse Mental Health Services Administration and professional medical organizations all recommend medication-assisted treatment for opioid addiction.

But others disagree with the very concept of using medicine to treat addiction. Though this contradicts medical consensus, some, especially those with a background in the 12-step movement, view it as simply trading reliance on one drug for another. Addiction is a moral or spiritual problem to be overcome by willpower or faith, some believe. Medication is a crutch.

Two of the medications used to treat opioid addiction receive the most scrutiny, because they’re opioids themselves: methadone and buprenorphine, which is known as Suboxone, a brand-name formulation. Both medicines, called opioid-maintenance therapy, reduce cravings and prevent withdrawal, helping people to avoid the harmful behaviors associated with addiction.

“If the addiction is the monster, then methadone and Suboxone cage the monster,” says Dr. Andy Chambers, an addiction psychiatrist in Indianapolis. In a proper treatment setting, people with an existing tolerance to opioids don’t get a feeling of euphoria from opioid maintenance drugs because of how they’re formulated and administered.

Still, many people, including lawmakers, law enforcement and corrections officials, see lurking risks in any substance with street value — any substance that activates the opioid receptors in the brain. As a result, methadone and buprenorphine are two of the most heavily regulated drugs in America, even more than the highly addictive painkillers that have touched off the addiction crisis.

The third medication, Vivitrol, sidesteps much of the debate. Approved to treat opioid addiction in 2010, Vivitrol is a monthly injection of extended-release naltrexone. It is not an opioid. Instead, it blocks opioid receptors in the brain.

Vivitrol is effective for some patients, but like the other two medications, it’s not the right choice for everyone. For example, it’s not ideal for patients who are dealing with chronic pain on top of their addiction, or for pregnant women. It’s also more expensive than opioid maintenance — around $1,000 a shot. And it requires patients to stop using opioids and go through a painful detox before they can begin taking it.

Vivitrol, manufactured by the drug company Alkermes, is one of a handful of medications used to treat opioid addiction.

Carla K. Johnson/AP

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Carla K. Johnson/AP

That thought can deter people from beginning treatment. “The opioids hijack that part of your brain that has to do with survival,” says Dr. Camila Arnaudo, an addiction psychiatrist in Bloomington, Ind. “The idea of being off of them … is tantamount to telling them you’re going to take away their food or the air they breathe.”

Some clinicians are also hesitant to prescribe Vivitrol to patients because of relapse risk. Using opioids again after an extended period of opioid abstinence can increase the risk of overdose and death.

That Vivitrol has no street value and no potential for abuse has helped the drug shake some of the skepticism directed toward medication-assisted treatment. For the last several years, the company has marketed the drug heavily to people in the criminal justice system, convincing judges and corrections officials to offer Vivitrol to inmates and parolees.

But there hasn’t been as much research on Vivitrol’s long-term effectiveness compared to methadone and buprenorphine, partly because it’s a newer drug.

A billion-dollar drug?

Alkermes is open about its basic strategy — influencing legislators and officials to increase sales of Vivitrol.

“We have an entire team of people fanned out across the country working from coast to coast with state and local government officials,” said Jeff Harris, the company’s government affairs director, at an investor event in September 2016.

In a presentation, Harris described Alkermes’ lobbying strategy as “ecosystem development” — raising awareness and promoting policies favorable to Vivitrol. Alkermes has poured money into the political process. In 2010 they spent less than $200,000 on federal lobbying; in 2016 they spent $4.4 million, according to data collected by the Center for Responsive Politics. Alkermes has also been spending aggressively at the state level and has been a generous campaign contributor.

Harris showed the crowd a map of the U.S. that showed Vivitrol programs in most states; he said sales are increasing because of the company’s work.

At that event, Alkermes displayed a chart that showed sales of Vivitrol and ranked states on how friendly they are to its product — and how high each state’s overdose rate is. The chart shows circles of varying sizes representing the quantity of overdose deaths in state per 100,000 people.

Alkermes is a niche player in the pharmaceutical industry, and Vivitrol is central to the company’s growth plans. Although the drug was first approved to treat alcohol addiction in 2006, it wasn’t until the company began marketing Vivitrol to law enforcement and policymakers that sales took off. Last year, Vivitrol’s sales reached $209 million — up from just $30 million in 2011. Some of that money comes directly from the federal and state governments, through Medicaid and other programs that help people pay for addiction treatment.

In the presentation, Alkermes said sales could reach $1 billion by 2021.

At the 2016 investor event, CEO Richard Pops suggested that among pharmaceutical companies, Alkermes is unique. “We find ourselves really deeply dedicated to bringing in new medicines to patients and profoundly affecting their lives, the lives of their families and even the communities that they live in,” he said.

But a number of people working in the field of addiction policy are concerned about their tactics.

“In a number of states, there has been a significant push by Alkermes and their lobbyists to really squelch other treatment, so that they can get access to bigger markets for their drug,” says Dr. Corey Waller, an addiction specialist who heads legislative advocacy for the American Society of Addiction Medicine.

Waller says people should be wary of the notion that Vivitrol is better than other drugs to treat opioid addiction. No studies comparing Vivitrol with buprenorphine or methadone have been published.

Chambers expressed similar concerns. He says Alkermes operates as though methadone and buprenorphine are competitors, when the drugs are actually meant for different types of patients. “That’s really an unfortunate dynamic,” he says. “They’re not designed to do the same thing. It’s like comparing apples and oranges.”

Legislating brand awareness

In a cramped hearing room at the Indiana statehouse in 2015, a week after McCaffrey’s testimony in the health committee, the House Committee on Courts and Criminal Code convened to discuss another bill related to addiction — members were preparing to vote on an amendment that would write Vivitrol into state law.

“Vivitrol or a similar substance may be required to treat opioid or alcohol addiction as a condition of parole, probation, community corrections, pretrial diversion, or participation in a problem solving court,” the bill digest read.

McCaffrey didn’t testify that day, but he was there, although it wasn’t clear whether he was representing Alkermes or his nonprofit, MHAI. When the meeting adjourned after a 12-0 vote in favor of the amendment, the camera and microphones were left on. In the video, McCaffrey pops into view to huddle with lawmakers, including Rep. Ryan Dvorak.

Dvorak had raised concerns earlier about the drug’s cost and about identifying a brand-name medication in state law. In an interview, Dvorak said that after the vote that day, McCaffrey “was trying to explain why it wouldn’t really be that expensive.”

When McCaffrey testified later in front of a Senate committee, he characterized Vivitrol as the “non-opioid opportunity.”

The final version of the bill, which passed in April 2015, heeded concerns about using a brand name. The word “Vivitrol” was replaced with a distinctive phrase: “a federal Food and Drug Administration-approved long acting, nonaddictive medication for the treatment of opioid or alcohol dependence.”

The effect was the same. The only FDA-approved drug that currently fits that description is Vivitrol. In fact, it echoes language from Vivitrol marketing materials, and the phrase appeared in the bill a dozen times.

A Vivitrol billboard off the New Jersey Turnpike.

Courtesy of Nicodemo Fiorentino

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Courtesy of Nicodemo Fiorentino

That language showed up in other bills in 2015 and 2016, essentially writing Vivitrol into sections of state code that deal with criminal justice and the regulation of methadone and buprenorphine treatment. As of 2016, the phrase “nonaddictive medication” appeared in Indiana state code 11 times.

And it’s not just in Indiana. The word “Vivitrol” or variations of the phrase that refers to Vivitrol appear in more than 70 bills and laws in 15 states, according to a 50-state search of legislation using Bloomberg Government.

Addiction treatment experts say the intent is obvious: to encourage the use of Vivitrol over other options. “I think anyone who’s willing to put somebody’s advertisement in legislation should be ashamed of themselves,” says Waller. He worries the phrase could influence decisions made by lawmakers, judges and anyone else who reads or interprets the law.

Using “nonaddictive” to describe Vivitrol raises another issue for treatment experts, because it contributes to the widespread confusion between the meanings of addiction and dependence.

Addiction, also known as substance use disorder, is “characterized by compulsive drug seeking and use, despite harmful consequences,” according to the National Institute on Drug Abuse. But in a treatment setting, buprenorphine and methadone help people avoid those risky behaviors. Patients are dependent on the medications — they would go into withdrawal without them — but that’s not the same thing as being addicted to them.

Some doctors compare being dependent on buprenorphine to the dependency someone with diabetes has on insulin: It’s simply a medication needed to help manage a chronic condition.

The use of the term “nonaddictive,” both in Alkermes marketing materials and in its lobbying efforts, indirectly disparages other treatments, says Basia Andraka-Christou, a researcher at the Fairbanks School of Public Health in Indianapolis, who studies medication-assisted treatment. “Even using ‘nonaddictive’ suggests that the other ones are super addictive, even though for most people, they’re helpful and not abused,” she says.

Barriers to treatment

Some of the policies that Alkermes and its lobbyists have supported can have real-world implications for people struggling with addiction.

About a year ago, Angela and Nate Turner of Greenwood, Ind., were trying to quit heroin. They each had been injured years before, and doctors prescribed them opioid painkillers. Soon they were making regular trips to various doctors to feed their habit. Later, when doctors stopped filling their prescriptions, the Turners switched to heroin.

The overuse of painkillers like OxyContin is often blamed for the scale of the opioid epidemic. Last year, the Centers for Disease Control issued voluntary guidelines for prescribing opioids in response to the crisis, and some states have placed their own limitations on how the drugs are used.

The opioids used to treat addiction, however, have always been heavily regulated, and as a result can be hard to come by. Methadone, when prescribed to treat opioid addiction, can be delivered only at specialized clinics. Doctors need a special waiver to prescribe buprenorphine and are limited to treating 100 patients at a time (or 275 for select prescribers who meet special requirements). It’s the only prescription opioid with such limitations.

And patients who need buprenorphine can face further hurdles.

When the Turners decided to stop using heroin, it took them a while to find a doctor. Eventually, they found one who prescribed Suboxone, a brand-name formulation of buprenorphine. But their insurance company made Angela wait three days to get her prescription filled. She spent that time in withdrawal: cold sweats, hot sweats, diarrhea, nausea and body aches. When interviewed by NPR and Side Effects Public Media in 2016, Angela said she was tempted to go back and use, just so she could take care of her daughter.

“That sounds bad, [that] you have to use to be a parent,” she says. “But it’s either that or lay there and not being able to get up and feed your kid and do what you’re supposed to be doing, you know?”

For Nate, the wait was five days. He relapsed and used heroin. “I couldn’t do it no more,” he said. “I had to get something.” He nearly lost his resolve to quit.

The delays the Turners faced were caused by their insurance company, which operates under Indiana’s Medicaid program. Before paying for a given drug, insurers can force doctors and nurses to deal with back-and-forth paperwork, phone calls and even faxes. The process is known as prior authorization, and it’s the single most significant barrier to prescribing buprenorphine, according to a peer-reviewed study. It can mean a dangerous wait for patients who need the medication.

Some insurers and state Medicaid programs have started to eliminate the practice for buprenorphine, to make it easier for patients to get the medication.

But following McCaffrey’s endorsement two years ago, Indiana lawmakers voted to explicitly allow Medicaid insurers to use prior authorizations for buprenorphine, and specifically exempted Vivitrol from those rules. (The final version of the bill removed the Vivitrol exemption, but most insurers under Indiana Medicaid will pay for Vivitrol without a prior authorization.)

“That really upset me,” said Andraka-Christou when we showed her the bill. “That is pretty explicitly saying that we’re going to hamper one medication moreso than the other.”

Deterring would-be providers

Buprenorphine treatment providers can already be hard to find, especially for patients in rural areas. Many doctors with the waiver to prescribe buprenorphine don’t make use of it, and those who do often prescribe far below the 100-patient cap. Even if every doctor with a waiver reached the limit of 100 patients, they would treat fewer than half of all Americans suffering from addiction.

Despite these circumstances, Alkermes has pushed for increased regulations on buprenorphine. For example, under a law recently passed in Ohio, doctors treating more than 30 patients with buprenorphine must now apply for a special license from the pharmacy board which adds new rules and a significant administrative burden to how they run their practice.

Lobbyists for Alkermes “applauded the bill,” says the bill’s author, state. Sen. John Eklund. “Their interest was in, is there anything they can do because Suboxone had such a toehold here in the state of Ohio, and they’re looking to expand their business.”

Doctors are worried that these regulations could cause some smaller medical practices to simply give up on prescribing buprenorphine, or to never start — they might instead turn to Vivitrol as the option instead of dealing with these regulations. “It might increase that pressure,” says Dr. Shawn Ryan, an addiction specialist and president of the Ohio Society of Addiction Medicine.

Alkermes tried a similar approach at the federal level, too. Leading up to the passage of the Comprehensive Addiction and Recovery Act in 2016, the company sought increased federal regulation of buprenorphine. “This is one of the most intense behind-the-scenes lobbying efforts,” said a Democratic congressional staffer, who was not authorized to speak on the record. “It frustrated me to no end for 2 1/2, three years.”

The company circulated a document, obtained by NPR and Side Effects, that presented slanted material about buprenorphine, focused on the drug’s potential for diversion and abuse while largely ignoring its benefits for individuals and for public health. “This is basically a very long attempt to bash buprenorphine,” said Andraka-Christou when we showed her the documents.

A spokesperson for Alkermes, Matthew Henson, acknowledged in a phone interview that the company circulated the white paper, which he described as a “working document” meant to educate federal lawmakers about medication-assisted treatment options. The document doesn’t mention Vivitrol. Asked why Alkermes was circulating a document focused on a medication it doesn’t manufacture, Henson said he would get back to us. He never did.

As lawmakers sought to expand access to treatment, the white paper called for stricter regulation of buprenorphine through a bill dubbed the Opioid Addiction Treatment Modernization Act, introduced in the House in June 2015. “The legislation they wanted introduced was actually going the other direction, in terms of making it more onerous to be a doctor wanting to prescribe these medications, and would have hurt treatment capacity in this country,” says the staffer.

That bill died, but the staffer says the company still influenced the way some federal lawmakers speak about opioid maintenance.

“This is government-supported addiction. It is not moving people to sobriety,” said Republican Rep. Tim Murphy, in a subcommittee meeting in March 2015, referring to buprenorphine and methadone. The staffer says they often heard Alkermes lobbyists disparage opioid maintenance therapy using the same language. Murphy has received campaign donations from Alkermes, according to the Center for Responsive Politics.

Recently, Health and Human Services Secretary Tom Price said methadone and buprenorphine treatment was simply “substituting one opioid for another,” a comment that angered treatment professionals and contradicts information provided by his own department’s website:

“A common misconception associated with [medication-assisted treatment] is that it substitutes one drug for another. Instead, these medications relieve the withdrawal symptoms and psychological cravings that cause chemical imbalances in the body.”

He made the remarks not long after touring an Alkermes plant with CEO Pops.

Advocating abstinence

In its quest to increase market share for Vivitrol, our investigation found, Alkermes leverages another common misconception about addiction and recovery to influence policy in its favor: the idea that medication-assisted therapy should be used on a short-term basis.

At the end of 2016, Indiana released new guidelines for addiction treatment providers in the state. The guidelines were created as a result of two bills, and according to testimony, lobbyist Steve McCaffrey was instrumental in drafting both.

If a patient tests positive for a controlled substance, the new guidelines say that the doctor needs to consider adjusting the treatment plan with the “goal of opioid abstinence.”

But pushing for opioid abstinence can be dangerous, according to federal health agencies and the American Society of Addiction Medicine. The U.S. Department of Health and Human Services puts it this way: “[A]ll forms of withdrawal are less effective compared with ongoing opioid maintenance.”

The Indiana guidelines even contradict themselves. The document borrows verbatim from ASAM’s treatment guidelines, saying that if a patient is using another opioid, the doctor should consider increasing — not decreasing — the buprenorphine dose, so the patient feels less desire to use additional opioids.

“If you prematurely stop the medication-assisted treatment, then you have a super high risk of relapse and death,” says Waller. He says addiction is a chronic disease, needing ongoing treatment, and the medications help regulate it. “I don’t know why we seem to have such a fascination with a need for [patients] to be fully off of treatment,” he says.

Pushing for opioid abstinence, however, could help Alkermes sell more Vivitrol, since the drug is the only non-opioid treatment for opioid addiction.

The language used in Indiana recommending treatment with a “goal of opioid abstinence” is mirrored in a new Pennsylvania bill. The bill would require office-based treatment providers (which means doctors who prescribe buprenorphine) and methadone clinics to conduct a “periodic review” of their patients’ treatment plans and to consider “the possibility of opioid abstinence.”

The measure’s author, state Sen. Camera Bartolotta, acknowledges she spoke to Alkermes. “I’ve talked to them,” she says. However, she denied that it would benefit a specific medication. “This is not a pharmaceutical bill. This is a treatment bill.”

Another bill introduced in Pennsylvania would require buprenorphine prescribers to pay $10,000 for a license to operate.

Sales goals vs. the common good

Waller says it is troubling to see Alkermes promote legislation that makes it harder for patients to get access to other FDA-approved treatments. “It’s just unethical,” he said.

But the company’s tactics don’t exist in a vacuum. Pharmaceutical companies routinely try to undercut their competitors and promote their own products, says Adriane Fugh-Berman, who studies pharmaceutical marketing at Georgetown University. She added that some drug makers have also used legislation to gain an edge over competitors. What Alkermes appears to have done, Fugh-Berman says, is combine those strategies. “That is not pro-public health. That is anti-public health,” she said.

Despite repeated requests, Alkermes did not make any of its leadership available for an interview for this story. In an email to NPR and Side Effects, company spokesman Henson wrote: “To suggest that we have any more authority or influence than any other company, advocacy group or treatment provider that cares about this disease just isn’t fair.”

Alkermes’ success in influencing state policy comes from the way it plays into people’s pre-existing beliefs about addiction. “When you talk about Vivitrol or naltrexone, you’re talking about working more towards abstinence,” said Davisson, the author of one of the pro-Vivitrol bills in Indiana. “A lot of people are more comfortable with that type of language.”

When told about Steve McCaffrey’s lobbying for Alkermes, Davisson said the arrangement didn’t bother him, even though he was unaware of it when he worked with McCaffrey on the bill. Other lawmakers who worked closely with McCaffrey were also unconcerned about his ties to the company.

In its emailed statement, Alkermes says it favors access to all treatment options, a sentiment McCaffrey echoed: “I would always agree that we want open access to whatever treatment is available according to the physician.”

McCaffrey argued that as policymakers become more accustomed to using Vivitrol to treat addiction, they will eventually become more open to supporting treatment with buprenorphine and methadone as well.

After an initial interview, McCaffrey did not agree to talk further. Earlier this year, McCaffrey released a list of addiction-related bills that Mental Health America of Indiana worked on in 2017. The bills insert “nonaddictive medication” into state law seven times. All of them were signed by the governor.

But policies favoring Vivitrol can have drastic consequences for people like Nate and Angela Turner, who want to overcome their opioid addiction but struggle with long wait times for access to medication-assisted treatment. “Doctors got us on the the pain medication,” said Angela, “and got us on the drugs. A doctor should be able to help us.”

“We actually need these things to help us back into society and to be productive,” said Nate.

With millions of people addicted to opioids, the people treating addiction want to reduce the pain, suffering and death associated with the disease. To do that, they need whatever medications are available, not just one.

This story is part of a reporting collaboration with NPR, Side Effects Public Media and WFYI. Ben Allen of WITF in Harrisburg, Pa.; Esther Honig of WOSU in Columbus, Ohio; and Carmel Wroth of Side Effects Public Media contributed reporting. Katie Daugert and Courtney Columbus of NPR provided research assistance. Visuals were produced by Alyson Hurt and Juan Elosua of NPR, and edited by Meredith Rizzo of NPR.

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What Happens When A Leader's Vision Is The Wrong One?

Don Laub was a pioneering surgeon — one of the first in the U.S. to perform gender reassignment surgeries, but tragedy came when he traveled to Mexico to provide free surgeries to children.

LAKSHMI SINGH, HOST:

We tend to like stories of leaders who have big ideas and strong convictions, the kind of visionaries who stop at nothing in pursuing their goals. But what happens when a leader’s vision is the wrong one? NPR’s Shankar Vedantam brings us the story of an ambitious surgeon who was a pioneer in his field and also made a grave mistake.

SHANKAR VEDANTAM, BYLINE: From a very early age, Don Laub was driven by a big idea. He wanted to help people. He wanted to help a lot of people. As a small child, when kids in high school were asked to donate money to a charity, his classmates contribution a dime. Don worked in a vegetable garden an entire summer to raise a whopping $10.

DON LAUB: Now, I got a letter that my mother wrote for some of her friends saying Don has done something that nobody has ever done.

VEDANTAM: Don’s father feared his little boy was consumed with being a do-gooder and would turn out to be a failure in business. His father was right. Don Laub became a doctor. By the 1960s, Don was a young, ambitious plastic surgeon at Stanford University, very much in awe of his prize-winning colleagues. He was looking for a place to make his mark. One day, a colleague walked out of an examination room and came up to him.

LAUB: He said, Don, I want you to see a patient. It’s a good case that you might not like it. It’s a sex change.

VEDANTAM: This was 1968 well before the modern transgender rights movement.

LAUB: I said send that patient away. I’m a Catholic boy from the Midwest, and I’m at Stanford. We don’t do those things.

VEDANTAM: Don’s colleague insisted he meet the patient, and although Don initially blanched at the idea of gender reassignment surgery, he also felt a shiver of excitement. So he didn’t send the patient away. Instead, he consulted with psychiatrists and the few surgeons around the world who performed this kind of work.

LAUB: It was a wonderful opportunity to do a big thing and to help a lot of people.

VEDANTAM: Altruism and ambition were always tightly woven in Don’s identity. He wanted to change the world. In other words, Don Laub was a hedgehog. Here’s what I mean by that. Thousands of years ago, the Greek poet Archilochus said the fox knows many things, but the hedgehog knows one big thing.

PHIL TETLOCK: That parable has been the subject of much debate over the last 2,500 years. What exactly are Archilochus meant.

VEDANTAM: This is University of Pennsylvania psychology professor Phil Tetlock.

TETLOCK: Various people have offered various interpretations. Some people coming out on the side of the hedgehog and other people saying no it really means the fox is going to do better.

VEDANTAM: There are different ways to think about the metaphor, but here’s how I see it. If a fox wants dinner, it can chase down a hedgehog. It can find something else to eat. It can even go without food for a day. But if you’re a hedgehog being chased by a fox, you don’t have multiple goals. You have one. Don’t get eaten. Phil Tetlock thinks this metaphor describes two cognitive styles of people. Foxes have different strategies for different problems. They’re comfortable with nuance. Hedgehogs focus on the big picture.

TETLOCK: The hedgehogs are more the big idea of people who are decisive. In most MBA programs, they’d probably be viewed as better leadership material.

VEDANTAM: In November 1968, Don Laub made a very hedgehoggy decision. He performed California’s first gender reassignment surgery.

LAUB: And we were more than prepared for all of certain things that might happen.

VEDANTAM: Don soon became one of the world’s leading experts on gender reassignment surgery or what today is called gender confirmation surgery. His reputation grew, a reputation for being a good surgeon and a tough gatekeeper. One of his patients, Sandy Stone, vividly remembers an encounter.

SANDY STONE: At some point, he asked me if I were 100 percent committed to wanting surgery. And I said, no, I’m not. I’m probably 99.9 percent. I think anyone who is 100 percent committed to anything is probably crazy. And Don said, well, in that case you’re not eligible for surgery.

VEDANTAM: It took a mediated session with Don’s assistant for the two of them to resolve the conflict. But the incident revealed something about the way a hedgehog moves through the world. Hedgehogs are decisive. Don could not understand anything less than 100 percent commitment. Sandy underwent surgery in 1977. It was a success. When she considers Dan’s influence on her life, she says it all comes down to the pursuit of a big idea.

STONE: Do you go for the big one or do you accept something less? And many of us accept something worse because we don’t want to take the risk, and then we may go through life maybe we’ll be happy with our measure. Or maybe we’ll say what if I had gone for what I really wanted? What would that have been like? Maybe I would have died, but I didn’t. I beat the odds. And I went on to be gloriously happy. And Don brought that to many people.

VEDANTAM: Don’s leap into the unknown, his confidence in his own judgment, it had all paid off. But pursuing a big idea with determination doesn’t always lead to victory. And when a hedgehog fails, the fall can be painful. Before Don became a world renowned gender reassignment surgeon, he had another big idea. It started this way. One day a colleague asked him if he could help with the surgery. The patient was a child from Mexico.

LAUB: This was a 14-year-old boy who had no other deformity than his cleft lip and palate.

VEDANTAM: But because of it, the boy was shunned.

LAUB: He had not gone to school. He had no educational advancement. He had no friends.

VEDANTAM: The surgery to repair the gap in his palate and lip was simple and quick, and it gave this child a real chance in life. Don felt this was the kind of patient he wanted to serve. He turned to the priest who had brought the boy to Stanford all the way from Mexico.

LAUB: I asked him are there other patients in Mexico like this? They said the place is full of them. So we bought an airplane ticket and went down to Mexicali and asked for a clinic.

VEDANTAM: He soon found himself in a dusty border town whose main medical facility was an old, wooden home.

LAUB: It had a dirt floor part of it in. The back part of that clinic was used to raise fighting cocks.

VEDANTAM: A rational fox might have calculated the odds and backed down, not Don. He recruited local health officials to get word out that they would be providing free surgeries for children with cleft palates and bone scars. The clinic was quickly packed.

LAUB: The first patient I saw was sitting there with a bag on his head with two little peep holes. I said what’s with the – why the bag?

VEDANTAM: Behind those peepholes was a little boy named Eugenio hiding his face in shame. Don asked if he could take a look.

LAUB: So he got the bag off and he had a burn scar that pulled this eyelid down, a simple thing to repair.

VEDANTAM: Don repaired the scarred eyelid and still remembers the boy’s first reaction.

TETLOCK: He had a very nice, huge smile.

VEDANTAM: On a follow up trip, Don tracked Eugenio down.

LAUB: He shook hands and everything like that even as a young kid. And he said I have friends in school now.

VEDANTAM: Don loved it.

LAUB: It’s a real happiness. It’s a source of happiness is the best description.

VEDANTAM: Don’s medical missions formally started in 1966. They grew quickly. One day, a woman arrived at the clinic with her young son Salvador. He had bilateral clefs two clefts rather than one. Salvador was a perfect candidate for surgery. That is until a doctor on the team gave the boy a thorough physical and listened to his heart with a stethoscope.

LAUB: His mother brought him in and the pediatrician listened and it was whoosh, whoosh, whoosh, the heart sounds.

VEDANTAM: These were not normal sounds. The boy’s heart had a hole in it. The risk of proceeding with surgery was small, but potentially fatal. They gave the mother the bad news.

LAUB: We can’t operate because we don’t have the equipment in Mexicali to do the heart catheterization or anything like that or even get an EKG today. So…

VEDANTAM: I should say here that we’re going only on Don’s account of what happened. The medical records from that era are incomplete, and we weren’t able to find the mother. A few months after sending the child away, Don and his team were back in Mexicali. The mother and her son were waiting. Salvador she told him was shunned. He had no friends. Other children called him the monster.

LAUB: The mother said this child has no chance in life. You’ve got to fix it.

VEDANTAM: Don’s heart went out to the little boy. He explained the danger again. The risk was small, but it meant things could go seriously wrong. So the answer again was no. More months passed. Don returned to the clinic. So did the mother.

LAUB: Por favor, please doctor.

VEDANTAM: This was a critical moment. Don could again have said no. Medical protocol said that was the right call. But Don also knew that without surgery Salvador would always be an outcast. Could he have tried to take the boy back to Stanford where heart surgeons could have assisted with his care? Maybe but that would have been a drain on critical resources from the project in Mexico, resources that were helping hundreds of other children. So Don did what Don always did. He took a deep breath that said, OK, we’ll do it.

LAUB: I feel like that’s why I existed is for this judgment. I mean, I’m not there to take care of little pimples. I’m there to do the tough cases.

VEDANTAM: The morning of the surgery, Salvador went through the standard pre-surgery lab tests and checkup. And then the boy walked by himself into the operating room.

LAUB: And he gets on the operating table himself because he trusts the whole world.

VEDANTAM: The surgery began. First, Salvador was anesthetized then Don and his team began the surgery.

LAUB: When we were operating, everything was going perfect.

VEDANTAM: And then just like that it wasn’t.

LAUB: Anesthesiologist said, boys, we have no pulse.

VEDANTAM: They tried everything – CPR, medicine to jumpstart the heart. Nothing what. The child was dead. Outside the operating room, the boy’s mother was waiting anxiously for news of her son. Dawn told her they’d had complications that they tried hard but the boy had died. The mother began to sob. But then Don says she did something surprising. She asked him why he was upset.

LAUB: She said you should be happy because the child is seeing God with a complete face.

VEDANTAM: Don expected accusation, anger and deep sorrow. Instead, he encountered a mother who leaned heavily on her faith. He was speechless, not just because of what she’d said but because he was struck by another thought. Salvador’s face was not repaired. He died before the surgery was complete What would the mother say when she saw her son at the funeral? Don conferred with this team about finishing the surgery on the little boy.

LAUB: I said it’s against the law, but I think in this case we should.

VEDANTAM: The rest of the team unanimously agreed. Salvador was brought back from the morgue.

LAUB: The child came back in a body bag, and we did the whole thing as if the child was awake.

VEDANTAM: I interviewed Don several times for the story. I pushed hard to understand why he decided to operate on Salvador.

LAUB: I thought this is what I am for. This is my purpose.

VEDANTAM: Don still thinks about Salvador. He has turned the case over in his head in every possible way. I asked him over and over whether he felt regret.

LAUB: No, well, of course, I do. Of course, I do. Yes, I do.

VEDANTAM: Here’s the thing about foxes and hedgehogs. We tend to want the best of both worlds. We love bold visionaries who take big risks except when the risks don’t work out, then we prefer the visionaries to be more cautious, filled with a little self-doubt. The day after Salvador died, Don Laub was back in the operating room. He remembers looking out the windows at the sky.

It was he says a perfect azure blue. At 10:30, the time when Salvador was to be buried, everyone on the team fell silent and paused. There was no sound except for the whoosh of the anesthesia machine. Shankar Vedantam, NPR News.

Copyright © 2017 NPR. All rights reserved. Visit our website terms of use and permissions pages at www.npr.org for further information.

NPR transcripts are created on a rush deadline by Verb8tm, Inc., an NPR contractor, and produced using a proprietary transcription process developed with NPR. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.

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A Dad Takes His Son To The Doctor And Discovers Fear Of Vaccines

Erik Vance holds his son while a pediatrician administers vaccinations.

Courtesy of Erik Vance

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Courtesy of Erik Vance

I am a man of science. Okay, perhaps not of science, but certainly near it. As a science journalist, I’m science-adjacent. But I consider myself to be bound by logic and facts.

Which is why it was weird when I took my infant son in for his first vaccines and started peppering his pediatrician with questions. I inspected the boxes, telling myself that I was concerned about a recent bad batch of vaccines in Oaxaca, Mexico, that made a bunch of kids sick. But really, I was looking for a label that read “not the autism kind of vaccine.”

I felt really uncomfortable and started to sweat. I looked at the clear liquid in the vials and wondered, will I regret this for the rest of my life? I started to think about maybe delaying the injections until it was safer or maybe stretching them out over a longer period of time. I mean, it just can’t be safe giving all these vaccines at once.

Seriously? I’ve spent years following the vaccine safety debate, reading the stories and writing a few about how safe and effective vaccines are. And yet here I am putting my entire profession to disgrace, just as scared and confused as anyone else. In that moment, I wanted to slap my brain upside the temporal lobe. The sight of one little needle was turning me into a raging anti-vaxxer.

Before I go any further, just so we are clear, every scrap of reliable data confirms that vaccines are a safe and crucial part of medicine. Plenty of very clever people have pointed out that they have very few risks and many benefits, which accrue not only to the child being vaccinated but also to society at large. And there is abundant evidence that they don’t cause autism.

Father and son meet up with the pet pig often seen in their neighborhood in Mexico City.

Courtesy of Erik Vance

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But this is not a post about vaccines or autism or even evidence. This is a post about fear. If there is one thing that psychologists can say for sure, it’s that fear is more deep and powerful than just about any other emotion we can experience.

In my book, Suggestible You, I note that while placebos can be incredibly potent in treating some (often chronic) diseases, their alter egos — nocebos — are reliably more so. Nocebos occur when something unhealthy happens to your body, solely based on belief. They can be as simple as feeling slightly more pain during an experiment just because a doctor says you should or as complex as side effects for placebo pills, or mass hysteria. Perhaps the best example of a nocebo in pop culture would be a curse. (In the book, I even get cursed myself at one point.) In other words, if placebos are hope, nocebos are fear.

Scientists have found that nocebos are easier to create than placebos — and last longer. So fear is more powerful in the body than hope. Saying “fear is a powerful thing” is a little like saying “money can come in handy” — it kind of undersells it. Fear is the No. 1 tool for selling newspapers, insurance, snake-oil medicine and Swedish cars. Sometimes that’s a good thing, and sometimes it’s not. It’s what kept our ancestors alive for millions of years, and it’s history’s favorite way of selling political ideology.

So it’s not surprising that fear forces people to accept some strange ideas about medicine. The most tragic and extreme of these are cancer patients so terrified of modern cancer therapies that they turn toward more “natural” solutions and shun proven treatments that could have saved their lives.

I would gladly suffer a few rounds of chemotherapy to prevent harm from coming to my child. The bottom line is that what happens to me when I go in for my kid’s shots has nothing to do with vaccines or mercury or thimerosal or any science whatsoever. It’s about fear and a loss of control.

Maybe I’ve done one too many stories on autism and crossed some kind of threshold. So that is how I ended up sweating when I was in the doctor’s office again two weeks ago, waiting for the 18-month vaccination that would protect him from diphtheria, meningitis, whooping cough and tetanus. Here I was again, deeply ashamed yet still wondering whether we should put off the shot until it was “safe.”

But I knew I could never make the shot, or the world, as safe as I would like. Safe from what? I don’t know, I just want my baby to be safe all the time, OK? And do you have any smaller needles?

The doctor asked me to restrain my son, who looked at me a little bewildered but trusted his daddy. Then the doctor injected four neutralized pathogens into his legs. The baby screamed for a few seconds with what I assumed was a deep sense of personal betrayal before the doctor deftly pulled out a tin of lollipops and slipped one into his mouth. I gotta give the guy some credit; the kid shut right up and went to work on the candy.

At a checkup in May, a lollipop makes everything OK, even as Dad finds himself consumed with what he admits is irrational fear.

Courtesy of Erik Vance

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Courtesy of Erik Vance

Then at that moment, I had a realization. If fear is more powerful than hope and this could happen to a fundamentally rational person like me, then what hope does science really have? What chance does “This is a well-studied, safe intervention” have against “Holy shit, I might be ruining my child!”?

Now go beyond that to other issues where fears and tribal loyalties conflict with reason, like GMOs, climate change or evolution. How can rationality win when irrationality is so much more attractive? I sat in the doctor’s office staring into space, now terrified of something totally different.

The doctor looked at me for a second, then grabbed his tin and pushed it at me. “Maybe Daddy wants a lollipop, too?”


Vance is the author of Suggestible You, which was supported in part by the Pulitzer Center on Crisis Reporting. A version of this essay appeared on the blog The Last Word On Nothing.

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Got Cancer Questions? This Little-Known Hotline Is Here To Help

Jill Wiseman answers questions for the Contact Center based at the Fred Hutchinson Cancer Research Center in Seattle.

Robert Hood/Fred Hutch News Service

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Robert Hood/Fred Hutch News Service

If you were worried you had cancer, who would you call for information? Chances are a federally-funded cancer helpline isn’t the first place that pops into your mind.

But for 40 years, a helpline funded primarily by the National Cancer Institute has been answering people’s questions about cancer.

It’s a source of information for people who have been called back for a follow-up after routine screenings and are worried they might have cancer. And it can also help cancer patients get information about participating in clinical trials and help them figure out questions to ask their doctors.

The Fred Hutchinson Cancer Research Center in Seattle runs the Contact Center, which is funded mostly by the National Cancer Institute with some support from the Veteran’s Administration. Last month, the NCI awarded Fred Hutch a $24 million, three-year contract to continue operating the helpline.

“There will be about 1.7 million Americans diagnosed with cancer this year. For many of them, access to good information can be the difference between life and death,” says Peter Garrett, a spokesperson for the National Cancer Institute.

More than 91,000 people reached out to the Contact Center via phone, email or social media in 2016 — a total of about 250 inquiries per day. This year, more people have been contacting the center through a live chat, email or social media than with a phone call, says the center’s director, Nancy Gore.

“Over the years, call volume has declined although the complexity of the calls has increased,” says Gore. “People seek information via the Internet, so [they] can often find answers to basic questions such as general cancer symptoms, a common call before the Internet became pervasive.”

Now, people more often need technical information about clinical trials and gene therapies, she says.

But the helpline remains relatively little-known by the general public. About 10 percent of those inquiries were from repeat clients, according to data provided by the center.

Back in the 1980s, more than 20 cancer call centers operated around the country. Now there’s just one.

Assuming that the cancer center spends about $8 million this year to handle a similar number of inquiries, by our very rough calculation that adds up to a cost of about $87.14 per inquiry.

There’s no limit on the amount of time a helpline staffer can spend on the phone with a client. Eric Suni, a cancer information specialist at the center, says he has occasionally spent more than an hour on the phone with a caller during the seven years he’s worked there.

“Sometimes people will call and say they have one quick question, but answering that one quick question requires a much more in-depth discussion because you can only answer that question by explaining some other concept,” Suni says. “Even those that seem like, oh, this should take two minutes to answer is actually a much more involved conversation. So you never really know until it actually starts to unfold.”

Hotline staffers, who are required to have a four-year college degree, spend six to seven weeks in initial training. The center calls this process “the metamorphosis from civilian into a Cancer Information Specialist,” in a training overview document.

It’s hard not to think that the call center had become less necessary in an era when people can Google symptoms and get advice in patient groups on Facebook, but Gore says there’s still a need.

“In fact, it is such a common, common comment that is shared with us that they [the clients] wish they had known we were here when they were first diagnosed, or when their mother was diagnosed,” Gore says.

Gore’s husband died of melanoma when he was 34. She didn’t know much about his disease at the time of his diagnosis, she says.

“Until a cancer diagnosis is part of someone’s family or close friend situation people are aware of it, but until it hits home you’re not that in tune to it,” Gore says. “Once it actually hits home, then people have intense interest and a thirst for knowledge because they want to understand.”

Doctors may explain information to patients, but sometimes the shock of a cancer diagnosis can make it tough for a patient to focus.

“For most people, you don’t hear anything after the diagnosis. You’re just processing the words,” Gore says.

The NCI estimates that about 4 in 10 people in the U.S. will be diagnosed with cancer at some point in their lives, according to data from 2010 to 2012.

Callers to the hotline ask most frequently about breast cancer, according to 2016 data, followed by other more common cancers including lung and prostate.

And more people called with questions about a spouse, friend or relative than about themselves.

The people who reach out to the center in English tend to be in their 50, 60s and 70s, but those who seek a conversation in Spanish are generally younger – most are in their 30s, 40s or 50s.

Other sources of information about cancer also exist, such as a 24-hour hotline run by the American Cancer Society, which received about 744,000 inquiries last year.

Dr. Deanna Attai, a clinical professor of surgery at the University of California Los Angeles, participates in the weekly Breast Cancer Social Media chats known as #bcsm. She says she got involved after she noticed a Twitter conversation where a breast cancer patient was asking for treatment advice. Attai started a private conversation with the patient, offering her advice about reliable surgeons.

She calls it her Twitter “ah-ha” moment.

“Just by stumbling across a conversation in the middle of the night, you could really have a big impact,” Attai says. “That was for me, when I started to realize where my voice is among the community, that I could act as kind of like a guide.”

Attai doesn’t see social media making the NCI Contact Center obsolete. Instead, the cancer institute could use social media to point people to the NCI as a source of up-to-date, unbiased information.

“I think they should be using social media to promote themselves,” Attai says. “People don’t really understand what the NCI does, unless you’re a researcher or physician or maybe someone that’s participated in a clinical trial.”

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CDC Reveals Sharper Numbers Of Zika Birth Defects From U.S. Territories

Michelle Flandez’s son Inti Perez — pictured at home in Bayamon, Puerto Rico, in 2016 — was born with microcephaly linked to the mosquito-borne Zika virus.

Carlos Giusti/AP

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Carlos Giusti/AP

Zika is a scary virus because of the terrible birth defects it can cause. Now scientists have a clearer sense of the size of that risk.

The U.S. Centers for Disease Control and Prevention identified 2,549 pregnant women with the Zika virus in Puerto Rico and other U.S. territories between Jan. 1, 2016 and April 25, 2017. The CDC found that 122 of these women — about 5 percent — gave birth to babies with birth defects such as small heads (known as microcephaly).

The federal health agency, which has been struggling to get clear information out of Puerto Rico about Zika, declined to say how many of those birth defects came from Puerto Rico.

But Dr. Anne Schuchat, acting director of the CDC, said she is confident that health officials in the territory are now fully reporting its cases to the federal health agency. Puerto Rico is not required to use the CDC definition when publishing its own figures, which have appeared to be out of step with expectations.

CDC will blend the Puerto Rico numbers with any cases reported from the U.S. Virgin Islands, American Samoa, and the Federated States of Micronesia and Marshall Islands for “an assurance of privacy,” Schuchat told reporters. The upshot is that the public will not be able to identify risks specific to any of these areas. Puerto Rico’s population accounts for more than 90 percent of the total of these territories.

Earlier this week, Puerto Rico, which has been struggling to attract tourists during the Zika outbreak, declared that the epidemic had ended. Schuchat agreed that the number of cases has fallen sharply since the peak of the epidemic. But in a telephone news conference Thursday, she said, “We don’t feel the period of risk is over.”

Another mosquito season is on the way, she noted.

Scientists have had trouble pinning down the risk of Zika to pregnant women. Estimates of birth defects have ranged from 1 percent of pregnancies to more than 10 percent. This latest study, published Thursday in Morbidity and Mortality Weekly Report, provides a sharper answer.

The study found that even infected women without symptoms of the disease were at risk of giving birth to babies with abnormalities.

Women whose infections were identified in the first trimester of pregnancy had a somewhat higher risk — 8 percent overall. The study found that women whose infections were identified later in pregnancy were also at significant risk for having a baby with birth defects.

Not all birth defects are immediately recognized at birth, Schuchat said, so it’s important for doctors to follow up with these babies. In addition to microcephaly, the children may have other brain malformations, eye problems and neurological damage.

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If The Individual Insurance Market Crashes, Can People Still Get Coverage?

People who buy their own health insurance and make too much to get subsidies are most likely to feel the pain of an unstable market.

PhotoAlto/Frederic Cirou/Getty Images

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PhotoAlto/Frederic Cirou/Getty Images

In his high-stakes strategy to overhaul the federal health law, President Donald Trump is threatening to upend the individual health insurance market. But if the market actually breaks, could anyone put it back together again?

The question is more than theoretical. Since Jan. 20, the Trump administration has already acted to depress enrollment in Affordable Care Act plans, has instructed the IRS to back off enforcement of the requirement that most people have health insurance or pay a penalty and threatened to withhold billions of dollars owed to insurance companies. All of those actions make it more difficult for insurers to enroll the healthy people needed to offset the costs of the sick, who make it a priority to have coverage.

The Democrats will make a deal with me on healthcare as soon as ObamaCare folds – not long. Do not worry, we are in very good shape!

— Donald J. Trump (@realDonaldTrump) March 28, 2017

The president himself has made his strategy clear in interviews and tweets. “The Democrats will make a deal with me on healthcare as soon as ObamaCare folds — not long,” Trump tweeted March 28. “Do not worry, we are in very good shape!”

But the individual insurance market is not in such good shape.

A growing number of insurers are asking for double-digit premium increases or deciding to leave the market altogether. In the latest announcement, Anthem said Tuesday that it was pulling out of the Ohio marketplace, where it serves more than 10,000 customers, next year. And while most analysts say the market probably would eventually rebound, in the short term things could get messy.

“Is the administration doing what it needs to do to stabilize the market? No, they’re doing the opposite,” says Kevin Counihan, CEO of the insurance exchange program during the Obama administration.

Trump’s biggest weapon by far is refusing to reimburse insurance companies for billions of dollars in payments the law requires them to make to help policyholders with incomes up to 250 percent of the federal poverty level, about $30,015 for an individual and $61,500 for a family of four, afford their deductibles and other out-of-pocket payments. These “cost-sharing subsidies” are being challenged in an ongoing lawsuit filed by Republican House members against Health and Human Services in 2014, and Trump can effectively end them at any time by dropping the suit.

Meanwhile, major insurance companies like Aetna and Humana have already announced that they won’t participate in the health exchange market for 2018.

Other insurance companies have said they would like to stay in, but only if they are granted huge rate hikes, citing the uncertainty of whether the Trump administration will repay them for the cost-sharing discounts and whether it will enforce the health law’s “individual mandate” that requires most people to have coverage or pay a fine.

In Pennsylvania, for example, insurers are seeking premium increases of less than 10 percent for 2018 – but warn that if the mandate to have insurance is not enforced or cost-sharing reductions are not paid, those increases could balloon to 36 percent or more.

Those who follow the market closely say the exits and requests for large premium increases are no surprise. “It’s just been one thing after another in this market,” says Kurt Giesa, an actuarial expert at the consulting firm Oliver Wyman. He said if the administration follows through on its threat not to fund the cost-sharing subsidies for the rest of the year, “that could be the straw that breaks the camel’s back.”

Giesa pointed out that it’s not just insurance companies that would suffer if the individual insurance market is crippled. “That strategy of crashing the market has real human consequences,” he says. “There are 15 million-plus people relying on that.”

That group includes not only people who purchase insurance through the “health exchange” state marketplaces, but also those who purchase insurance on their own, usually because they earn too much to get federal assistance paying their premiums. Premium subsidies are available to those who earn less than 400 percent of the poverty level, about $48,240 for an individual and $98,400 for a family of four.

People who pay their own way are the ones getting hit hardest, says insurance industry consultant Robert Laszewski. “There is a horrific death spiral going on with the [non-subsidized] part of the market right now,” he says, because rate hikes are limited for those getting help from the government, but not for those paying the full premiums.

A major question is how hard would it be for the government to regain the trust of insurers as a reliable business partner, regardless of what changes are eventually made.

Counihan acknowledges that insurers felt they were treated unfairly even before the Trump administration took office, when Republicans in Congress prevented full payment of “risk corridor” funds that the law promised to insurers who enrolled more than their expected share of sick people. Insurers are still owed millions of those dollars, and many have sued the federal government to try to get the money.

Counihan said the first words out of the mouths of most insurance CEOs he met with were “we don’t trust you guys.”

Giesa says the government’s misbehavior goes back even further – to the fall of 2013, when the Obama administration allowed some consumers to keep their old plans. That effectively kept healthy people out of the new markets, “after companies had set their prices,” Giesa says, resulting in some big losses for insurance companies.

Despite the woes, insurance analysts say they doubt the individual market would stay down for long.

One reason, says Laszewski, is that for many nonprofit insurers serving the individual market as the insurer of last resort is part of their mission, unlike with big commercial insurers. Boards of Blue Cross Blue Shield plans and other nonprofits, he says, tend to be made up of representatives of “labor, the local hospitals, big employers. … They have community connections. So it’s going to take a lot to drive them off.”

Another reason insurers will likely return or work to remain in the individual market is that it’s part of the future of health care, says Counihan. With so many people now working for themselves in the “gig economy,” he says, selling insurance “is going to be more business-to-consumer than business-to-business.”

“This market could grow,” agrees Giesa. “And I don’t think [insurance companies] want to be left out completely from this market if there’s an opportunity to break even, or make a little money.”

In the end, says Counihan, regardless of what he considers the Trump administration’s “disorganized neglect, I think this market is here to stay.”

Kaiser Health News, a nonprofit health newsroom whose stories appear in news outlets nationwide, is an editorially independent part of the Kaiser Family Foundation.

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