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Health February 8, 2016

When Men Get Breast Cancer, They Enter A World Of Pink

Maria Fabrizio for NPR
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Maria Fabrizio for NPR

At 46 years old, Oliver Bogler’s reaction to a suspicious lump in his chest might seem typical for a man. He ignored it for three to four months, maybe longer. “I couldn’t really imagine I would have this disease,” Bogler says. But when he finally “grew up” and went to the doctor, he was pretty quickly diagnosed with invasive breast cancer.

Now what’s interesting here is that Bogler is a cancer biologist who regularly works with cancer cells, as senior vice president of academic affairs at the University of Texas MD Anderson Cancer Center in Houston. Even so, he figured the lump was a benign swelling of breast tissue.

He had good reason to think so. Breast cancer is rare among men. Only 1 percent of all breast cancer cases are in men. Still, that means about 2,600 men receive a diagnosis of breast cancer every year.

But men typically don’t think they are at risk, says Dr. Sharon Giordano, an oncologist who also works at the MD Anderson Cancer Center. “Men don’t think of themselves as having breasts,” Giordano says. “They don’t realize that all men have some residual breast tissue.” So it’s not unusual to see male patients like Bogler who come to her with more advanced breast cancer than the typical female patient.

This could be one reason why men have a lower life expectancy after a breast cancer diagnosis. According to a study published in 2012, in the Annals of Surgical Oncology, men with early breast cancer had a 74 percent survival rate five years after their diagnosis compared to women, whose survival rate was 83 percent.

And men not only can get breast cancer, they can also inherit the BRCA1 and 2 genetic mutations that place them at greater risk. Like women, they can pass that mutation on to their children, who have a 50 percent chance of inheriting a parent’s mutation.

Once men are diagnosed, their treatment is pretty much the same as it is for women — typically surgery to remove the cancer followed by chemotherapy, radiation and hormone suppressing medication like tamoxifen.

That was the case for Bogler, but with one big difference — he had a mastectomy. Most women choose lumpectomies followed by radiation. This is often not an option for men, Giordano says, because their tumors are most commonly right behind the nipple, where there’s not a lot of breast tissue to remove.

The markings on Oliver Bogler's chest are used to guide radiation therapy.

The markings on Oliver Bogler’s chest are used to guide radiation therapy. Courtesy of David Jay Photography hide caption

toggle caption Courtesy of David Jay Photography

Unlike women, most men don’t have reconstructive surgery. That’s probably because they don’t even know it’s an option, says Giordano. A lot of male patients would probably be interested in having nipple reconstructive surgery, Giordano says, “So when they are out swimming, or playing basketball and have their shirt off, the surgical changes aren’t quite so obvious.”

And because breast cancer is so much more common among women, men with the disease can experience something of a “gender misfit.” Bogler wrote about his experience in a personal blog he called Entering a World of Pink. Breast cancer clinics are often decorated in lots of pink, and support systems are designed with women in mind. Giordano recalls one male patient who, after a biopsy, was given a pink floral ice pack that came with instructions to “place it inside your bra.”

When Edward Smith was diagnosed about four years ago, he went online to look for information and emotional support. The first couple of chat rooms he joined were not helpful, he says, when the participants found out he was a man. “They weren’t outright nasty or anything, but you could just feel that they were pulling back in terms of the conversation that was going on at the time,” he says.

Eventually Smith found a site that was welcoming — Living Beyond Breast Cancer. The women in this group were helpful, compassionate and willing to talk, Smith says. This was important because he was feeling a bit uncomfortable at work. Colleagues were just “stupefied,” he says, “because most people have never encountered a male who had breast cancer.”

The website recently published a guide for men, which Smith found particularly helpful. The medical information isn’t so different from women, says Jean Sachs, executive director of Living Beyond Breast Cancer, but the experience is very different. “It’s hard to get men to talk about it,” she says. The guide provides a list of men, including Smith, who are willing to talk to other men about their experience.

It’s also important, Sachs says, for men who test positive for the BRACA genetic mutations to understand that they can pass those mutations on to their children, which may encourage newly diagnosed patients to get tested.

The lack of awareness, even among doctors, oncologist Giordano says, means less money for needed research to figure out how breast cancer in men differs from women especially when it comes to life saving treatment. Treatments for men are based on evidence from research trials with women. Giordano’s now heading up research to better understand the biology of the disease in men and to try to figure out the most effective hormone therapy for men with breast cancer.

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Health February 6, 2016

A Voter's Guide To The Health Law Chatter

Republican presidential hopeful Sen. Ted Cruz initially claimed his private insurance had been canceled. It turned out his insurer had transferred him to a plan with a narrow network of providers.

Republican presidential hopeful Sen. Ted Cruz initially claimed his private insurance had been canceled. It turned out his insurer had transferred him to a plan with a narrow network of providers. Andrew Burton/Getty Images hide caption

toggle caption Andrew Burton/Getty Images

Nearly six years after its enactment, the Affordable Care Act remains a hot issue in the presidential race – in both parties.

“Our health care is a horror show,” said GOP candidate Donald Trump at the Republican debate in South Carolina in December. Texas Sen. Ted Cruz, winner of the Iowa caucuses, said at the debate in Des Moines that the health law has been “a disaster,” adding it’s “the biggest job-killer in our country.”

Democrats largely support the law, but even they can’t agree on how to fix its problems. Hillary Clinton said at the Jan. 25 town hall on CNN that she wants to “build on the ACA. Get costs down, but improve it, get to 100 percent coverage.”

Clinton’s rival for the nomination, Vermont Sen. Bernie Sanders, acknowledged that “the Affordable Care Act has done a lot of good things,” but added that “the United States today is the only major country on earth that doesn’t guarantee health care to all people as a right.” Sanders is pushing a government-run “Medicare for All” plan instead.

In some cases candidates are bending the truth. But praise and criticisms of the law can be accurate. That’s because the health law is so big and sweeping that it has had effects both positive and negative.

Here is a brief guide to some things the health law has – and has not – accomplished since it was signed by President Barack Obama in 2010.

CLAIM: The law has increased the number of people with health insurance coverage.

This is true, no matter what measure you use. The Census Bureau and polling firm Gallup both found substantial drops in the percentage of people without health insurance after the majority of the law’s coverage expansions took effect in 2014.

COUNTER-CLAIM: There are still millions of Americans who don’t have insurance.

This is also true. Even though approximately 90 percent of Americans now have insurance, that remaining 10 percent amounts to more than 30 million people.

Millions aren’t eligible for coverage under the law because they’re not in the U.S. legally. Another 3 million are in the so-called Medicaid gap, meaning they would be eligible for Medicaid under the ACA except their states opted not to accept the expansion after the Supreme Court effectively ruled the expansion optional.

Still others are eligible to purchase coverage on a health insurance exchange, but either can’t afford it, don’t think the insurance available offers a good value, or don’t know they are legally required to obtain it. An estimated 7.5 million Americans paid a fine to the IRS for failing to get covered in 2014; millions more were exempt from the requirement and didn’t have coverage.

In recognition of the fact that enrollment has been smaller than expected, the Congressional Budget Office recently lowered its projections for those who will buy insurance under the law from 21 million to 13 million in 2016.

CLAIM: The ACA has fixed the dysfunctional individual insurance market.

Prior to the passage of the health law, millions of people who didn’t have work-based or government coverage were shut out of buying their own insurance because they had been sick or because the coverage offered did not cover the services they needed.

The law aimed to address the problems in the individual market in several ways, including requiring insurers to sell to those with preexisting conditions at the same price as healthier people; standardizing the benefits package; and limiting the size of deductibles. Tax credits were made available in order to help people afford coverage. And the law created insurance exchanges intended to help consumers compare, choose, sign up and pay for health insurance.

How well these changes succeeded in stabilizing the market isn’t clear. What is clear is that more people are now insured through the market.

COUNTER-CLAIM: The ACA has made the individual market worse.

All is not well in the individual market. Even with help paying premiums, many moderate-income Americans are finding that their deductibles and copayments are so high they cannot afford to use their insurance.

In other cases, individuals can get insurance they can afford to use, but it doesn’t include their regular doctors and hospitals. In fact, plans that do offer coverage outside of the insurer’s network are becoming harder to find and more expensive.

That change affected Cruz, who initially claimed his private insurance had been cancelled. In fact, his insurer had stopped offering his broad-choice plan and automatically transferred him to a narrow-network product.

CLAIM: The ACA has improved the Medicare program.

While most of the law was aimed at those without insurance, lawmakers also took the opportunity to beef up some benefits for the 55 million Americans in the Medicare program.

Medicare enrollees got new coverage for preventive services and annual checkups, and those with high prescription drug expenses got help to fill the “doughnut hole” gap left by the 2003 Medicare drug program.

Over the longer term, the law created several payment experiments intended to improve the quality of care Medicare patients receive and lower costs. These include efforts to prevent patients from going back to the hospital after they’ve been discharged.

COUNTER-CLAIM: The ACA has not saved money for Medicare.

The rate of increase in Medicare spending has slowed since the health law was passed in 2010. But it’s not clear how much of that can be attributed to the law, aside from some provisions that actually cut payments to hospitals and other health providers.

And some of the most highly anticipated projects, including accountable care organizations that are paid bonuses for keeping Medicare patients healthy and lowering spending, have not so far shown very good results.

CLAIM: The ACA has killed jobs.

One of Republicans’ favorite talking points – that the health law would depress employment – has turned out not to be the case.

An analysis in 2015 by the Urban Institute found that the health law “had virtually no adverse effect on labor force participation; employment; the probability of part-time work; and hours worked per week by nonelderly adults.”

While there would be fewer people in the workforce due to the law, the Congressional Budget Office found in 2014 that “almost entirely” stems from voluntary actions by workers who could quit because they no longer depended on their jobs for insurance — now they could buy it on their own.

CLAIM: The ACA has slowed overall health spending.

The White House trumpeted the fact that health spending grew at its slowest rates ever between 2010 and 2013. But health policy analysts are still engaged in a lively debate about how much of the slowdown was attributable to the recession, to the health law and to other changes in the health care system.

Meanwhile, the rate of spending has begun to accelerate again, jumping from a 2.9 percent increase in 2013 to 5.3 percent in 2014. That has occurred as millions more Americans gained access to health care through the law.

Kaiser Health News is an editorially independent news service that is part of the nonpartisan Henry J. Kaiser Family Foundation. Julie Rovner is on Twitter: @jrovner.

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Health February 5, 2016

High Costs For Drugs Used By A Few Are Starting To Add Up

Multiple sclerosis pill Tecfidera is on the top 10 list of most costly specialty drugs, as measured by overall spending, for California's health benefit system for public workers and retirees.

Multiple sclerosis pill Tecfidera is on the top 10 list of most costly specialty drugs, as measured by overall spending, for California’s health benefit system for public workers and retirees. John/Flickr hide caption

toggle caption John/Flickr

The cystic fibrosis drug Orkambi can help people with specific genetic mutations breathe better, but treatment with the pill comes with a hefty sticker price — $259,000 a year.

Orkambi, which was approved by the Food and Drug Administration last July, is expected to take almost $36 million from California’s general fund this fiscal year and next. That cost estimate doesn’t include any discounts the state may receive from drug manufacturers.

Seventy-four Californians with health coverage under the Department of Health Care Services are expected to receive the drug in the current fiscal year. In the next one, 220 people are expected to get it, some of whom may be the same patients as this year.

Orkambi is listed on the specialty tier of drug categories in some private health plans. That category is typically reserved for high-cost drugs or, in the federal government’s view, for drugs that cost more than $600 a month and are used by a small proportion of patients.

Specialty drugs are already proving to be a financial burden on one California agency, the California Public Employees’ Retirement System, which purchases health benefits for active and retired state workers. CalPERS says that specialty drugs made up less than 1 percent of all prescriptions for its members but accounted for 30 percent of the total drug costs in 2014.

Drugmakers say the health benefits from specialty drugs justify their cost.
“Patients are gaining access to medicines that are better treating their diseases or frankly even curing them,” said Priscilla VanderVeer, deputy vice president of communications at the Pharmaceutical Research and Manufacturers of America. “Patients are now healthier. They’re more productive. They’re functioning.”

VanderVeer said companies price drugs not just on the cost of production, but on the value the industry believes the drug brings to the health care system, such as efficacy, improvements in quality of life or length of life and the extent to which the medical need for a drug has gone unmet.

The price of the drug also accounts for the cost of developing other drugs and the high risk that a particular drug won’t make it to market, VanderVeer said. Only 12 percent of drugs that go through clinical trials get approved, according to PhRMA.

Finally, she said, the sticker price doesn’t reflect the final price paid for the drug, which can be heavily discounted through negotiations or because of mandated rebates for Medicaid programs.

Drugmakers are following the money, said Joel Hay, professor of pharmaceutical economics and policy at University of Southern California. Companies invest in specialty drugs that target a small population because their high price tags can be spread over a large insurance pool, he said.

Even though specialty drugs are “ridiculously expensive per treatment episode,” Hay said, the cost for each member in a health plan is “just a few cents.” Raising the price 10 cents on a diabetes drug, for example, would have a bigger budget impact, he said, because more people have diabetes than cystic fibrosis.

Hay says manufacturers are now less inclined to invest in drugs that treat millions of people, because there is more pushback on price. “Drug companies are for-profit companies obligated to make money for their stockholders,” Hay said. “They’re not virtuous charitable organizations.”

Drugmakers are also investing more in treating uncommon illnesses because there is less competition and therefore more opportunity for profit, said Dr. Helene Lipton, professor of health policy at the School of Pharmacy and Institute for Health Policy Studies at the University of California, San Francisco.

The high price of the drugs affects patients, she noted, because health plans put controls on the drugs so that they’re used as a last resort.

“That may mean going through two or more rounds of care with other medications before being able to use the specialty drug,” Lipton said.

Still, it’s not just specialty drugs that are straining health plans’ budgets, said Steve Miller, chief medical officer at Express Scripts, a pharmaceutical benefits manager that negotiates drug coverage for 7.5 million Californians.

“The price of drugs is just continuing to go up,” said Miller, explaining that the trend is due to both new high-cost drugs coming on the market, and mark-ups of old drugs.

There has been an explosion of drugs costing $100,000 a year over the past decade, for things like cystic fibrosis and cancer, Miller said. And there was a 127 percent price increase of branded drugs that had been on the market between 2008 and 2014, he says.

A California ballot initiative scheduled to go before voters this November aims to rein in drug costs by limiting the amount the state pays for a drug to no more than the lowest price paid for the same drug by the U.S. Department of Veterans Affairs.

A version of this story appeared first on KQED’s State of Health blog. CALmatters is a nonprofit journalism venture dedicated to explaining state policies and politics. Pauline Bartolone wrote this article while participating in the California Data Fellowship, a program of the Center for Health Journalism at USC’s Annenberg School of Journalism.

Barolone will be exploring how the cost of specialty drugs’ affects patient access. If you are a chronic disease patient who is either taking a specialty drug or having difficulty getting the right one, she would like to hear from you. Reach her on Twitter @pbartolone or pauline@calmatters.org.

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Health February 4, 2016

House Hearing Probes The Mystery Of High Drug Prices That 'Nobody Pays'

Nancy Retzlaff, chief commercial officer for Turing Pharmaceuticals, was asked how much the drug Daraprim costs at the House Oversight and Government Reform Committee on Capitol Hill on Thursday.
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Nancy Retzlaff, chief commercial officer for Turing Pharmaceuticals, was asked how much the drug Daraprim costs at the House Oversight and Government Reform Committee on Capitol Hill on Thursday. Brendan Smialowski/AFP/Getty Images hide caption

toggle caption Brendan Smialowski/AFP/Getty Images

Members of Congress at a Thursday hearing wrestled with questions about why the prices of some old drugs are rising so fast.

Much of the session held by the House Oversight and Government Reform Committee was dominated by Martin Shkreli, the bad-boy former CEO of Turing Pharmaceuticals who earned notoriety by raising the price 5,000 percent for the drug Daraprim, a treatment for toxoplasmosis.

Shkreli — who has been indicted on unrelated securities charges and pleaded not guilty — invoked his Fifth Amendment right against self-incrimination and refused to answer questions. As the hearing went on, he smirked, rolled his eyes and chuckled. Afterward, he insulted the committee members on Twitter.

Hard to accept that these imbeciles represent the people in our government.

— Martin Shkreli (@MartinShkreli) February 4, 2016

Committee member Rep. Ted Lieu, D-Calif., tweeted back.

You know what’s sort of cool @MartinShkreli? That I represent the people and you are under federal indictment. https://t.co/acQvPEuPrT

— Ted Lieu (@tedlieu) February 4, 2016

Once Shkreli left Thursday’s hearing, lawmakers grilled other witnesses about rising drug prices.

The seemingly simple question about how much Daraprim costs in the real world proved pretty tricky to pin down.

Listen for yourself as Rep. Peter Welch, D-Vt., asked Turing’s Chief Commercial Officer Nancy Retzlaff how much Daraprim costs. The response is enough to make us feel like imbeciles.

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Rep. Welch ask Turing’s Nancy Retzlaff about Daraprim pricing

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Health February 3, 2016

California Exchange Chief Rips UnitedHealth For Obamacare Excuses

“Instead of saying, ‘We screwed up,’ they said, ‘Obamacare is the problem and we may not play anymore,’ ” Covered California’s Peter Lee said of UnitedHealth. Rick Loomis/LA Times via Getty Images hide caption

toggle caption Rick Loomis/LA Times via Getty Images

Amid growing questions over the future of Obamacare exchanges, the head of California’s marketplace said the nation’s largest private health insurer should take responsibility for nearly $1 billion in losses and stop blaming the federal health law.

In a blistering critique, Covered California’s executive director, Peter Lee, said UnitedHealth Group Inc. made a series of blunders on rates and networks that led to a $475 million loss in 2015 on individual policies across the country. The company estimates a similar exchange-related loss of $500 million in 2016.

“Instead of saying, ‘We screwed up,’ they said, ‘Obamacare is the problem and we may not play anymore,’ ” Lee said in an interview with California Healthline. “It was giving an excuse to Wall Street and throwing the Affordable Care Act under the bus.”

Lee, a staunch defender of the health law and a former official in the Obama administration, has tangled with UnitedHealth in the past. He knocked the company for sitting out the launch of Obamacare in 2014, then welcomed UnitedHealth into Covered California for 2016.

But now, he said, the company is “driving me bonkers” because it has “fed this political frenzy that Obamacare doesn’t work. It’s total spin and unanchored in reality.”

A company spokesman declined to comment on Lee’s criticism, and referred to UnitedHealth’s previous statements on the exchange business.

During a Nov. 19 conference call with analysts, UnitedHealth’s CEO Stephen Hemsley said: “We can’t really subsidize a marketplace that doesn’t appear at the moment to be sustaining itself. … I think that basically is an industrywide proposition.”

An Urban Institute report issued last week, however, found that some of UnitedHealth’s troubles may have been self-inflicted. The company’s premiums were substantially higher than its competitors’ in many of the largest U.S. markets. The insurer also offered broader provider networks that tend to attract sicker customers who incur big medical bills.

In November, UnitedHealth surprised analysts and health-policy experts with its steep losses and said it might leave the exchanges altogether, just after expanding into new states. The sudden reversal prompted questions about the sustainability of the government-run marketplaces, the linchpin of President Obama’s signature law.

UnitedHealth reiterated its dour outlook for the exchange market when it announced quarterly results Jan. 19. The company said it has seen an influx of sicker patients during special enrollment, fewer healthy people signing up and costs rising as a result.

UnitedHealth ended last year with about 500,000 customers in the public exchanges, and it expects membership to grow to about 800,000 during the recent open enrollment. It has said it will decide by midyear whether to continue selling in Obamacare marketplaces.

Other major insurers have expressed similar concerns about doing business in the public exchanges, albeit with less red ink than UnitedHealth.

Anthem Inc., the nation’s second-largest health insurer, said last week that its exchange enrollment in California and 13 other states was running about 30 percent below expectations, but the business was still slightly profitable. Anthem ended last year with 791,000 exchange members.

On Monday, insurance giant Aetna Inc. said it lost up to $140 million, or a negative margin of 3 percent to 4 percent, on individual coverage last year. It has 1 million members with individual policies, about 75 percent of them on public exchanges. The company said it expects to break even this year, however.

“Our individual commercial business ended the year with improved results,” Aetna’s chief executive, Mark Bertolini, said Monday during an earnings conference call. “Despite our improved finish, this business remained unprofitable in 2015, and we continue to have serious concerns about the sustainability of the public exchanges.”

In response to industry criticism, the Obama administration is taking steps to prevent the misuse of special enrollment so people can’t wait to sign up until they need care. Special enrollment is designed for people who lose coverage or need to make a change because of an event in their life, such as moving, getting married or having a child.

Insurance markets can’t function properly without enough healthy customers paying premiums, which are used to cover expenses incurred by sicker policyholders. The three-month open enrollment period for the federal and state exchanges just ended Jan. 31. California extended its deadline to Feb. 6 for people who already had begun the sign-up process by Sunday.

John Holahan, a health-policy researcher at the Urban Institute, said the Obama administration does need to impose stricter rules for special enrollment. He also said concerns over affordability have hampered enrollment because some middle-class consumers and young, healthy people are put off by high premiums and large deductibles.

“But I haven’t seen anything that shows the exchanges are really in trouble,” Holahan said. “That doesn’t mean every insurer is going to make it. Some companies don’t make it, and that isn’t a sign markets are unsustainable.”

The Department of Health and Human Services expects about 10 million people to be enrolled in federal and state exchanges at the end of 2016. That’s far below previous government forecasts.

UnitedHealth sat out Covered California for the first two years before joining in several rural areas. Lee said both sides will be analyzing whether the company returns for 2017. As an active purchaser, Covered California can decide whether or not to contract with certain health plans and allow them on the state exchange.

“United will be looking at what their prospects are in California,” Lee said.
“We will be looking at United as a plan to see if they offer good value for Californians. It’s to be determined on both ends.”

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

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Health February 2, 2016

A Peek Inside Turing Pharmaceuticals: 'Another $7.2 Million. Pow!'

Martin Shkreli was CEO of Turing Pharmaceuticals when the company boosted the price of a drug by 5,000 percent. He has since resigned.

Martin Shkreli was CEO of Turing Pharmaceuticals when the company boosted the price of a drug by 5,000 percent. He has since resigned. Paul Taggart/Bloomberg via Getty Images hide caption

toggle caption Paul Taggart/Bloomberg via Getty Images

A memo from congressional investigators sheds new light on the inner workings of Martin Shkreli’s Turing Pharmaceuticals after the company jacked up the prices of a decades-old drug used to treat AIDS patients.

The House Committee on Oversight and Investigations is looking into Turing and other drug companies’ price increases. This memo, released Tuesday, includes excerpts from the company’s internal documents and emails.

It paints a picture of the now-disgraced “pharma bro” Martin Shkreli giddily rubbing his palms together at the prospect of all the money Daraprim will generate for his fledgling company. The drug is the only cure for toxoplasmosis, a disease that strikes people, including AIDS and cancer patients, whose immune systems are suppressed.

Turing bought Daraprim last year and jacked up the price 5,000 percent, from $13.50 to $750 a pill.

Here are a few highlights from the data dump.

When Turing agreed to buy Daraprim, company officials went into celebration mode:

“Very good. Nice work as usual. $1bn here we come.” — Turing Chairman Ron Tilles email dated May 27, 2015.

“I think it will be huge. We raised the price from $1,700 per bottle to $75,000. … So 5,000 paying bottles at the new price is $375,000,000 – almost all of it is profit and I think we will get 3 years of that or more. Should be a very handsome investment for all of us.” – Martin Shkreli email dated Aug. 27, 2015.

“Another $7.2 million. Pow!” — Tina Ghorban, senior director of business analytics, reacting to a purchase order for 96 bottles at $75,000 a bottle, on Sept. 17.

The company thought it could handle blowback from AIDS activists and doctors:

“HIV patient advocacy may react to price increase … we still come out ahead if we can frame this issue within the HIV/AIDS community as a fight between a drug company and insurance companies. As long as everyone who needs Daraprim can get it as soon as they need it, regardless of ability to pay, the community should have no issue. There is no love lost between HIV/AIDS activists and insurance companies, and they certainly don’t want to be manipulated by them to fight on their behalf.”

“Cost and coverage are not obstacles to treatment today … physicians do not report high out-of-pocket costs, required prior authorizations, or other access barriers to toxo medications.”

They were wrong:

“Given your company’s recent move to raise the price of pyrimethamine over 5,000% to an incredible $750 a pill, I have decided not to meet with representatives from Turing. … I am also urging my colleagues here at UNC, as well as at Duke, ECU, Wake Forest and other clinical centers across our state to do likewise, until Turing announces a reasonable and ethical reduction in the price of this important medication — a drug we rely on most to treat toxoplasmosis.” — Associate professor at University of North Carolina, Oct. 1.

“After over a week of trying to secure Daraprim for an uninsured patient requiring Daraprim at Massachusetts General Hospital, I need immediate assistance with expediting this case. … We have been provided with inaccurate/misleading information by the dedicated Daraprim Team. … This is a critical matter, visible at the highest levels of our Infectious Disease Department.” — Doctor at Massachusetts General Hospital, Oct. 8.

So Turing went into crisis mode, trying out discount programs and struggling with PR:

“I think we are acting a little like a deer in the headlights, and need to take some action steps now. If a hospital like Mass General is having issues we are in trouble.” — Ed Painter, head of investor relations, Oct. 8.

“Is there an annual price reduction commitment that would discourage generics from entering the market? What if we headlined … Turing Pharmaceuticals commits to an out-of-pocket cost to individuals of less than $20.” — Painter, Sept. 26.

“I don’t think so. Re reductions — Think it’s best we don’t PR something like that unless its something we’re willing to commit to doing.” — Patrick Crutcher, director of business development, Sept. 26.

“FYI, we are ‘blowing through’ copay dollars very fast. … My opinion is that with the current state of affairs that we should continue to provide to patients, but we’ll need to ultimately evaluate this program and understand the effect on margin.” — Jon Haas, director of patient access, Sept. 29.

“As early as next week, the Board should remove Martin as CEO. … the price drop has to be significant and tied to something. … This cannot be seen as something that appears to be as arbitrary as the price hike in the first place.” — Outside PR consultant, Oct. 8.

On Dec. 16, Shkreli was arrested on securities fraud charges related to his tenure at another firm. He resigned the following day.

“I am confident I will prevail,” Shkreli wrote on Twitter on Dec. 19. “The allegations against me are baseless and without merit.”

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Health February 1, 2016

Bosses Find Part-Time Workers Can Come With Full-Time Headaches

Skimping on health insurance carries a hidden price for some fast-food restaurants.
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Skimping on health insurance carries a hidden price for some fast-food restaurants. Paula Connelly/Getty Images hide caption

toggle caption Paula Connelly/Getty Images

Starting in 2016, the federal health law requires small employers to offer their full-time workers health insurance. In anticipation of the change, some fast-food restaurants looked to get around the law by making more workers part time. Now some owners are rethinking that approach.

At a Burger King off Highway 99 in California’s Central Valley, a half-dozen workers in black uniforms scurry around, grabbing packets of ketchup and stuffing paper bags with french fries.

Tiana Mua has worked here part time for almost a year. She’d like to be full time, but at this Burger King only the managers are full time. (The company didn’t respond to an interview request.)

Mua says that’s the situation at fast-food joints all over town. “They’re cutting back on all the jobs, and a lot of people have been let go and everything already,” Mua says.

One reason: The local economy is bad. People aren’t eating out as much, and sales are down. But there’s another reason that might explain why fast-food employees aren’t getting more hours: Obamacare.

Starting Jan. 1, businesses with 50 or more full-time employees must offer health insurance to all full-time staff or pay a hefty fine. Employers with 100 or more workers had to start offering coverage last year. But smaller businesses that operate on lower margins, especially restaurants, complained loudly about the cost.

And some fast-food franchise owners figured out a way to avoid paying for coverage: Just make as many workers as possible part time. A U.S. Chamber of Commerce survey found nearly 60 percent of small franchise businesses said they would make personnel changes like this.

“The ones that did it successfully did it three or four years ago,” says Kaya Bromley, an attorney who helps employers comply with the Affordable Care Act. But, Bromley says, some of the restaurant owners who cut hours to sidestep the health law now regret it.

“A lot of the fast-food franchisees that did this,” she says, “are now coming back and saying, ‘it was a great idea for reducing the number of people that I have to offer benefits, but now I can’t run my restaurants.’ “

They tell her it has been a nightmare trying to manage a part-time staff.

“Because you’ve got people who are less loyal, you’ve got people who are less skilled — who don’t understand the business,” she says. There’s also more employee turnover.

Bromley has seen many of those restaurants reverse course. “Employers think that there’s a shortcut here or there, and then they realize, yeah, that shortcut really hurt me more than it helped me,” she says.

The people hurt most by all the workforce management gymnastics are the people at the bottom of the restaurant pecking order who want to advance, but can’t, says Angelo Amador, vice president of labor and workforce policy for the National Restaurant Association.

“Someone who’s working part time, but wants more hours so they can move up the ladder, they can’t get the hours,” he says. “It ends up taking out that middle rung of employees.”

Obamacare has made restaurants less flexible, he says, mainly because it defines full-time work as 30 hours a week or more. Amador says most other laws restaurants have to comply with, like overtime pay, define full time as 40 hours. He thinks the Affordable Care Act should be changed for consistency.

“It would be much easier if we could have one definition of full time,” he says.

At the Carl’s Junior in Chowchilla, Calif., manager Silvia Campos tries to keep as many workers full time as possible. She says it makes her job easier. “It’s a small town,” she says. “For me, it’s hard to find a really good employee.”

But some workers don’t want more hours. Their part-time salary is low enough that they’re eligible for government coverage in California through Medicaid.

Some workers say they’re better off making less money and getting their coverage free from the state.

This story comes from a reporting partnership of NPR, KQED and Kaiser Health News.

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Health January 31, 2016

In 'No Más Bebés,' A 'Perfect Storm' Led To Unwanted Sterilizations For Many Latinas

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About 40 years ago, Consuelo Hermosillo went to the hospital for an emergency cesarean section. Against her will, she left unable to have more children.

Transcript

MICHEL MARTIN, HOST:

Now to another harrowing story about fertility, this one from the 1960s and ’70s Los Angeles. The first moments after the birth of a child are often the most intense of a mother’s life. There’s joy, but there can also be pain, exhaustion and confusion. It was in this vulnerable time that 10 women in Los Angeles say hospital officials forced or deceived them into getting sterilized, and they sued them for it. The new documentary “No Mas Bebes” examines their story. It premieres tomorrow night on PBS. From NPR’s Code Switch team, Shereen Marisol Meraji has more.

SHEREEN MARISOL MERAJI, BYLINE: After an emergency C-section at LA County Hospital, Consuelo Hermosillo got some unexpected news.

CONSUELO HERMOSILLO: The doctor walked in and said everything went fine. And I said, what am I going to use? Am I going to use birth control? He goes no, you don’t need anything. We cut your tubes. And I said why? He goes well, you signed for it. I said, me?

MERAJI: In “No Mas Bebes,” Hermosillo recalls the doctor’s visit that took place after she gave birth to her third child. She was in her early 20s, and it was September of 1973. Two years later, Hermosillo took part in a class-action lawsuit with nine other women who all claimed they were sterilized without their informed consent at LA County Hospital. All 10 plaintiffs were Mexican immigrants and poor or working-class, and they had similar stories. They had emergency C-sections, were given medication for excruciating labor pain and they say they couldn’t remember signing the consent form, they were confused about what they were signing or they were coerced into signing. Most spoke very little English.

MELVINA HERNANDEZ: (Speaking Spanish).

MERAJI: At 23 years old, Melvina Hernandez was rushed into a C-section at LA County Hospital because her baby was breech. She says a nurse told her in English that she needed to sign this paper now. Hernandez wanted to wait for her husband, but the nurse told her if she didn’t sign, they couldn’t operate and she’d die.

HERNANDEZ: (Speaking Spanish).

MERAJI: Hernandez says the nurse grabbed her hand and signed the paper for her. Four years later, she found out it was for a tubal ligation. Consuelo Hermosillo says she’s spent years trying to understand why this happened to them.

HERMOSILLO: Were they doing it for not supporting these kids in the future, or were they getting money at the hospital for doing more sterilization? I always kept those questions in me. I never get those answers.

MERAJI: Two women set out to find those answers in “No Mas Bebes.”

RENEE TAJIMA-PENA: I’m Renee Tajima-Pena, filmmaker and the director and co-producer of the film.

VIRGINIA ESPINO: I’m Virginia Espino. I’m a historian on and a co-producer of the film.

MERAJI: Espino and Tajima-Pena are LA natives, neighbors, longtime friends and colleagues. Espino learned about the sterilizations in graduate school studying Chicana history.

ESPINO: I grew up in northeast Los Angeles, very close to the LA County Hospital. So I was really shocked to hear that women were being sterilized there in the 1970s, a time when I was coming of age.

MERAJI: So horrified by the story, she devoted her studies to tracing the history behind it and would talk about it with Tajima-Pena when they were both new moms.

TAJIMA-PENA: I was in baby bliss, and I thought oh, this so profound. And it’s all those cliches you think about motherhood. And she told me about these women, you know, who were sterilized without their consent, against their will. And I was floored.

MERAJI: About a decade after those initial conversations, the two started production on “No Mas Bebes.” That meant finding the plaintiffs and defendants, all of whom hadn’t spoken about the case publicly in 35 years. Tajima-Pena said those willing to talk – both the women who were sterilized and the doctors who performed the sterilizations – all men – echoed their court testimony. The women still claim they never gave informed consent. And the doctors, like Jerry Neuman, still maintained their innocence.

JERRY NEUMAN: I knew personally I had not done anything. I could not for the life of me think of any of my colleagues who would have deliberately done this. We busted our – in order to provide care for a lot of people and got sued for it.

TAJIMA-PENA: The easiest thing to do is make a film about the good guys and the bad guys, the heroes and the villains.

MERAJI: Tajima-Pena says that “No Mas Bebes” goes beyond that simple narrative. She says the answers to plaintiff Consuelo Hermosillo’s questions are complicated. In 1970, Congress allocated millions for family planning. The money went to training, contraceptives and sterilizations. At the same time, mainstream white feminists were calling for stabilization on-demand while another popular movement, the zero population movement, supported sterilization as a way to combat overpopulation, which they claimed was destroying the planet. And that’s not all.

TAJIMA-PENA: You have attitudes about immigrants, hostility towards immigrants, this fear that poor women and working-class women are going to be having children and going on welfare. You had these cultural differences. You have all these things going on. And as a filmmaker, you kind of have to dig deeper beneath the surface and kind of look at those complexities.

MERAJI: For co-producer and historian Espino, it was important to provide as much historical context as possible.

ESPINO: So that everybody’s thinking critically about it and coming to their own conclusions about what does that really mean when you talk about reproductive justice, reproductive rights, reproductive choice?

MERAJI: Espino says we talk a lot about the choice not to have kids, but what about the choice to have them? Consuelo Hermosillo says that decision was taken away from her.

(SOUNDBITE OF DOCUMENTARY FILM, “NO MAS BEBES”)

HERMOSILLO: (Singing in Spanish).

MERAJI: In one of the film’s final scenes, Hermosillo is giving her baby granddaughter a bottle and reflecting on her hopes for the future.

(SOUNDBITE OF DOCUMENTARY FILM, “NO MAS BEBES”)

HERMOSILLO: I want her to have liberty on doing what she wants, going to school wherever she wants, decides how many kids she wants.

MERAJI: The filmmakers say “No Mas Bebes” documents a history that continues to repeat itself. They point to the nearly 150 women sterilized in California prisons between 2006 and 2010 as a recent example. Shereen Marisol Meraji, NPR News.

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Health January 30, 2016

Feds Hopeful Hispanics Will Respond As Open Enrollment Comes To A Close

Iris Galvez, a health insurance navigator (right) helps Mary Soliz of Houston, Texas, sign up for her first health plan through the Affordable Care Act on January 28, 2015 at a Houston community center.
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Iris Galvez, a health insurance navigator (right) helps Mary Soliz of Houston, Texas, sign up for her first health plan through the Affordable Care Act on January 28, 2015 at a Houston community center. Courtesy of Iris Galvez hide caption

toggle caption Courtesy of Iris Galvez

There’s football season, hunting season, and the holiday season. Overlapping all of these is something decidedly less fun and sexy: open enrollment season for health insurance.

“We’ve been busy this past month,” says Iris Galvez, a health insurance navigator with the Houston social services agency Change Happens!

Galvez helps people navigate the Healthcare.gov website and enroll in health plans offered through the Affordable Care Act marketplace.

“It’s the holidays, that makes it hard. Because people are like ‘Well, we’ll just put it off,’ ” Galvez says with a laugh. “But now we’re getting very busy.”

Earlier this month, Galvez helped Elisia and Cipriano Saenz, a couple from north Houston, select a plan with Molina.

“You’ll have to pay this much per month to Molina,” Galvez explains in Spanish, before handing over a summary sheet listing the couple’s monthly premium payment ($363), the federal subsidy ($691), deductible ($2,000), and copays ($20 for the primary care doctor, $55 for a specialist).

“They’re pretty good, reasonable,” Saenz says of the amounts. “We’ll be able to afford it.”

Elisia Saenz thanks Galvez for her assistance.

“You made our day,” she says. “Because we were having a hard time getting in to it.”

Last year, her husband Cipriano Saenz did try to sign the couple up, but he was confused, and then suspicious when a government worker requested more paperwork and asked him to confirm his Social Security number.

“Sometimes we have to be careful who we talk to, give our Social Security, ID number,” Saenz explains. “He told them ‘I’m very sorry. I can’t give my information to you all through phone.’ “

Elisia Saenz says he never followed up, and the insurance lapsed.

“Something had gone wrong, or maybe he didn’t understand,” she says.

Signing up can be a chore. You need to gather financial documents and set aside money for the monthly premium. Not only that, it’s just unpleasant to think about risk and injury and disease.

Galvez noted that some of her returning clients were angry this year because the insurance networks had become narrower. Almost all the coverage plans on the exchange in Houston are now HMOs.

“This year they have taken away the PPO. So a lot of people are not pleased with that,” Galvez said.

That means they have fewer choices of doctors and hospitals. Still, she tries to focus on the positives – not only avoiding the federal tax penalty for not being covered (which is either $695 for each adult without coverage or 2.5% of household income), but also the peace of mind that insurance will bring.

“You never know, you know? You fall and slip and break your leg, that’s a big bill from the hospital,” she says.

Elisia Saenz is 56 and Cipriano Saenz is 62. They work as janitors at a charter school, where Elisia also works in the kitchen. She says they can’t afford the insurance offered at the school.

“It’s been years that I haven’t been to a doctor,” Elisia says. “Thank God that I haven’t gotten sick. Now I can just go and get a whole physical, and he can do the same. So we’re happy that we got this.”

The Obama administration has increased its outreach this year to Hispanics, running special ads and targeting cities like Houston, Miami and Dallas with big Hispanic populations.

Across the country, 20.9 percent of Hispanics are uninsured in the U.S., compared to 12.7 percent of blacks and 9.1 percent of whites, according to the Kaiser Family Foundation.

There are lots of reasons why. Hispanics are more likely to work in jobs that don’t offer health benefits. Many are ineligible for the Affordable Care Act, or just don’t know about the options available.

Of the three states with the biggest Hispanic populations, only one, California, has chosen to expand Medicaid to low-income, uninsured adults. Florida and Texas have not expanded Medicaid, and that’s affected many low-income Hispanic adults.

In surveys, Hispanics explain the main reason they are uninsured is cost. Health coverage just seems too expensive to fit into a budget.

“They don’t make enough money where they work, or they work self-employed, cutting yards and stuff,” says Elisia Saenz, describing some of her neighbors.

“Sometimes they can barely, probably make it to pay the rent, feed their kids, clothe them. I know it’s kind of hard for them, if it’s just one person working in the household.”

Federal officials counter that’s an outdated perception for some Hispanics – because under the new law, many would qualify for subsidies to buy insurance, just like the Saenzs did.

Enrollment in most states for 2016 ends Sunday.

This story is part of a reporting partnership with NPR, Houston Public Media and Kaiser Health News.

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Health January 29, 2016

The Doctor's Computer Will Email You Now

After knee surgery, David Larson, 66, of Huntington Beach, Calif., experienced pain in a calf muscle. His answer to an automated email from the doctor led to the diagnosis and treatment of a potentially dangerous blood clot.

After knee surgery, David Larson, 66, of Huntington Beach, Calif., experienced pain in a calf muscle. His answer to an automated email from the doctor led to the diagnosis and treatment of a potentially dangerous blood clot. Heidi de Marco/Kaiser Health News hide caption

toggle caption Heidi de Marco/Kaiser Health News

A health care startup made a wild pitch to Cara Waller, CEO of the Newport Orthopedic Institute. The company said it could get patients more engaged with their care by automating physician empathy.

It “almost made me nauseous,” she said. How can you automate something as deeply personal as empathy?

But Waller needed help. Her physicians in Orange County, Calif., perform as many as 500 surgeries a year, managing large numbers of patients at various stages of treatment and recovery. The doctors needed a better way to communicate with patients and track their progress.

The California startup, HealthLoop, told Waller its messaging technology would improve patient satisfaction and help keep them out of the hospital. High satisfaction scores and low readmission rates mean higher reimbursements from Medicare. Waller was intrigued and decided to give the technology a try.

So far, she’s been surprised at patients’ enthusiasm for the personalized — but automated — daily emails they receive from their doctors.

“There’s a limited number of resources in health care. If you do 500 joint replacements in a year, how do you follow up all of those patients every day?” Waller said. The technology “allows you to direct your energy to people who need the hand-holding.”

Though it may sound like an oxymoron, “automating empathy” is becoming a catchphrase in health care. The goal is to help doctors stay in touch with patients cheaply and with minimal effort.

Automated empathy is a powerful draw for hospitals and other health care providers scrambling to adjust to sweeping changes in how they’re paid.

When empathy is automated, it looks like this.

When empathy is automated, it looks like this. HealthLoop hide caption

toggle caption HealthLoop

Whether the emails actually trigger an empathetic connection or not, the idea of tailoring regular electronic communications to patients counts as an innovation in health care — one that has the potential to save money and improve quality.

Companies like HealthLoop are promising that their technologies will help patients stick to treatment and recovery regimens, avoid repeat hospital stays and be more satisfied with their care. Similar companies that aim to improve patient engagement include Wellframe, Curaspan and Infield Health.

HealthLoop’s technology is being tested at medical centers that include the Cleveland Clinic, Kaiser Permanente-Southern California and the University of California, San Francisco.

How does it work? Doctors can send daily emails with information timed to milestones in surgery prep and recovery. The emails can ask patients or caregivers for feedback on specific issues that come up during recovery.

The doctors may write their own email scripts, as Newport Orthopedics’ physicians did, or use the company’s suggestions. An online dashboard helps doctors and administrators keep track of which patients are doing well and who might need more follow-up care.

A patient might see this message: “How are you? Let me know so I can make sure you’re OK. I have four questions for you today.” The answers to those questions can trigger a call from the doctor’s office.

One of those calls may have been a lifesaver for David Larson, a Huntington Beach retiree. After Larson responded “yes” to an email that asked if he had calf pain after knee surgery, he got a call from his doctor’s office telling him to come in immediately. An ultrasound confirmed he had a blood clot that could have landed him in the hospital — or worse. With treatment, the blood clot dissolved.

“There were times when it was like, ‘Oh brother, they’re contacting me again,’ but none of this would have been caught if it wasn’t for the email,” said Larson, 66. “So it was more than worth it to me. Now I’m back to walking the dog, surfing, riding a bike.”

How to keep patients like Larson from being readmitted to the hospital because of avoidable complications after a hospital stay has long been a vexing and expensive challenge.

Almost 1 in 5 Medicare patients discharged from a hospital — approximately 2.6 million seniors a year — must be readmitted within 30 days, at an annual cost of more than $26 billion, according to the Centers for Medicare and Medicaid Services.

For decades, hospitals had no financial incentive to keep patients out of the hospital after they were discharged. But under the Affordable Care Act, penalties were established for hospitals with readmission rates higher than the national average for certain conditions.

Also under the ACA, hospitals are financially rewarded for high scores on patient satisfaction scores and good performance on other quality measures.

The sea change is affecting doctors’ groups, either because they are part-owners in hospitals, as Newport Orthopedics is with Hoag Hospital in Newport Beach, Calif., or because they participate in risk-sharing financial partnerships with them.

With money on the line, hospitals and other health care providers may be willing to pay for programs like HealthLoop, if the tryouts prove successful. And you could see your own relationship with your physician change as a result, whether you’re on Medicare or not: HealthLoop is aimed at all patients, whatever the payment source.

Some experts worry that health care providers will come to rely too heavily on electronic communication as a cheap substitute for the hard work of improving the doctor-patient relationship and the quality of care that patients get.

“Automating personalized messages isn’t a terrible thing; we all get some of that in our everyday lives,” said Michael Millenson, a health industry consultant. “The real question is whether this kind of automated messaging is in conjunction with a cultural change in how doctors think about their patients or not.”

Health care providers have experimented, with varying success, with ways to prevent complications that can lead to readmissions, said Kristin Carman, vice president of health policy research at the American Institutes for Research.

Robocalls reminding you to take your medicine, for example, don’t seem to be very effective. And the new technologies don’t always address demographic, cultural and language barriers that can prevent patients from communicating with their doctors. For now, HealthLoop is available in English only.

Dr. Jordan Shlain, a San Francisco internist, said he founded HealthLoop because he wanted a simple way to keep track of his patients’ progress after a hospital visit or procedure.

“Every human has the same kind of trajectory of concerns and anxieties with regard to medical situations,” Shlain said. “You know your doctor can’t email you every day; you know your doctor usually will not call you. Now you’re in a world where your doctor says I’d like to use this system to stay in touch with you and guide you through your recovery.”

Dr. Thomas Vail, professor and chairman of the department of orthopedic surgery at the University of California, San Francisco would agree — up to a point.

With his UCSF colleagues, Vail is testing HealthLoop’s system with his patients, and the university will be evaluating whether patients who use it experience fewer problems.

UCSF helped create some of the language for the automated emails and has a financial relationship with the company, said Dr. Aenor Sawyer, who directs UCSF’s Skeletal Health Service and is a leader at the university’s Center for Digital Health Innovation.

While Vail thinks HealthLoop is potentially promising, he’s cautious about its role in his practice. “I don’t think it substitutes for face-to-face communication,” Vail said, “but it does help us collectively to not overlook something that might be important.”

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

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