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Cancer (disease)

Skyrocketing drug prices leave cures out of reach for some patients

Liz Szabo
USA TODAY
Many people are concerned about the growing cost of prescription drugs.

Sophisticated drugs are opening the door, scientists say, to an era of "precision medicine."

They're also ushering in an age of astronomical prices.

New cancer drugs are routinely priced at more than $100,000 a year — nearly twice the average household income.

Experimental cholesterol drugs — widely predicted to be approved this summer — could cost $10,000 a year

A drug for a subset of people with cystic fibrosis, a lung disease that kills most patients by their early 40s, commands more than $300,000 a year.

Even with insurance, patients might pay thousands of dollars a month out of pocket.

For many people, care for cancer and other serious diseases is "a doorway to bankruptcy or poverty," said Timothy Turnham, executive director of the Melanoma Research Foundation. "It's a tremendous economic burden."

But patients aren't the only ones paying.

Taxpayers underwrite the cost of prescription drugs provided by Medicare, Medicaid and other public insurance programs.

Spending on prescription drugs last year reached a record-breaking $374 billion, up 13% from 2013, with the largest percentage increase in more than a decade, said Clare Krusing,spokeswoman for America's Health Insurance Plans. Almost half of that increase came from drugs launched in the past two years.

Some of the most expensive medications are "breakthrough" drugs, which are fast tracked by the Food and Drug Administration because of their potential to fill an unmet need, she said. Over the next decade, just 10 of these breakthrough drugs will cost the government nearly $50 billion.

People with private insurance could find themselves paying more out-of-pocket for health care if insurers raise premiums to cover their costs, Krusing said.

    "We're spending money we cannot afford," said Leonard Saltz, chief of gastrointestinal oncology at New York's Memorial Sloan Kettering Cancer Center.

    Yet Saltz said he can't deny that some new drugs are game changers.

    "I want these drugs and drugs like them available for my patients," Saltz said.

    The cystic fibrosis drug, Kalydeco, has changed 33-year-old Emily Schaller's life. Before Kalydeco, Schaller was hospitalized for lung infections two to three times a year. Since beginning the drug five years ago, through a clinical trial, she's been hospitalized twice. Schaller, who lives in Detroit, receives Kalydeco through Michigan's state-run health insurance program.

    Emily Schaller, 33, has benefitted from a new drug, Kalydeco, that treats her cystic fibrosis.

    "It's a miracle drug," Schaller said. "I'm now planning a retirement fund, which is something I never thought would need."

    Yet miracles remain out of reach for many.

    Even patients with insurance can have trouble affording their medication, Saltz said. Many insurance plans require patients to pay 20% of their prescription drug costs.

    Some cancer patients have begun rationing their pills to reduce costs, taking them every two days instead of daily, said Ronan Kelly, an assistant professor of oncology at the Johns Hopkins Sidney Kimmel Comprehensive Cancer Center in Baltimore.

    "If we don't get some sanity in these drug prices, more people will die from cancer because no one will be able to afford them," said Saltz, who addressed high drug prices at a meeting of the American Society of Clinical Oncology.

    Rationing care

    Each new drug approval seems to set a new floor for prices, as doctors, patients and insurance providers get used to paying more, said David Howard, an associate professor in the department of health policy and management at Emory University in Atlanta.

    So even drugs outside the domain of precision medicine are getting pricier.

    Prices for insulin have skyrocketed in recent years, said Jeff Myers, president and chief executive officer of Medicaid Health Plans of America, which represents Medicaid managed care plans.

    Drugs for multiple sclerosis, which cost $8,000 to $11,000 a year in the 1990s, now sell for about $60,000 a year, according to an April study in Neurology.

    But perhaps no single drug has caused as much sticker shock as Sovaldi, approved in 2013 to treat chronic hepatitis C infections and cures 90% of patients in 12 weeks.

    But some people with hepatitis C will never have a chance to try it. At $1,000 a pill, its price far exceeds that of many cancer therapies.

    Unlike drugs for rare cancers, which might be used by a few thousand people a year, Gilead Sciences' Sovaldi treats a condition that affects 3 million people, Krusing said. The size of that patient population could make Sovaldi a budget breaker, especially for state budgets, because many people infected with hepatitis C are on Medicaid or in prison.

    Medicaid programs across the USA are sharply restricting access to Sovaldi, offering it only to the sickest patients, Myers said.

    Treating hepatitis C, which is caused by a virus that can spread when injection drug users share needles, actually helps prevent new cases, Myers said. That's because curing the illness leaves fewer infectious people to spread it.

    "If the drug had been priced more rationally, my expectation is that states would try to treat everyone they could a hold of," Myers said. "Imagine if Jonas Salk, when he invented the polio vaccine, had priced it like Gilead. We'd still have polio."

    A spokeswoman for Gilead said Sovaldi's price reflects its value to patients. Sovaldi cuts treatment time in half compared to older therapies, Gilead spokeswoman Cara Miller said. Sovaldi also could end up saving money, by reducing the need for liver transplants.

    Like many drug companies, Gilead offers a program to help low-income patients afford medications. Eligible patients can receive Sovaldi for as little as $5 a month from Gilead's drug assistance program, Miller said.

    A spokesman for the pharmaceutical industry said drug makers need to charge enough to recoup their investment costs.

    Research from Tufts University estimates that bringing a new drug to market can take 10 years and $2.6 billion, said Robert Zirkelbach, a spokesman for the Pharmaceutical Research and Manufacturers of America. Some health policy analysts have questioned Tufts' estimate.

    But Zirklebach said that charging more for successful drugs helps to offset the losses from the many drugs that fail. And the pharmaceutical industry's investments benefit patients, he said.

    Drugs in development have "never been more promising," Zirkelbach said. "That's particularly true in cancer. New medicines coming out have the ability to completely transform cancer and provide hope where there has never been hope before."

    "What the market will bear"

    Yet the high cost of new medications has nothing to do with their effectiveness, said Vinay Prasad, chief fellow in oncology at the National Cancer Institute.

    In a study of all drugs approved from 2009 to 2013, Prasad found no difference in cost between medications that improve survival the most and those with no effect on survival. There was also no difference in the price of the most innovative drugs — ones that worked in a totally new way — compared with similar drugs that came later.

    "Our ultimate consensus was that there is no rational basis for drug prices," said Prasad, whose study was published in JAMA Oncology in April. "It's not based on how novel they are or how well they work. It's based on what the market will bear."

    Competition hasn't helped to control prices, Saltz said.

    By the time that brand-name drugs are available as low-cost generics, "we're treating people with 17-year-old technology," Saltz said.

    Some cancer drugs will never become available as generics, Turnham said. That's because they're "biologics," drugs grown in living cells. Lower cost versions of these drugs, called biosimilars, are projected to save patients only about 15%, Turnham said.

    Attendees tour the exhibit hall at the 2006 meeting of the American Society of Clinical Oncology, where
doctors gather to learn about the newest cancer research.

    And some prices continue to rise, in spite of competition from comparable drugs.

    The landmark drug Gleevec, which transformed chronic myeloid leukemia from a death sentence into a chronic disease, cost $31,488 when it was approved in 2001, according to its manufacturer, Novartis. Its cost has since tripled — to more than $110,000 — even though it now competes with two similar drugs.

    Julie Masow, a spokeswoman for Novartis, said Gleevec is priced lower than its competitors. Gleevec "is a life-changing medicine," she said. "Before its availability many patients with chronic myeloid leukemia lived only months to a few years. Today, nine out of ten patients have a near normal lifespan."

    Drug price increases show no sign of slowing.

    The cost of new cancer drugs has been increasing by 10% a year, according to a working paper published in the Journal of Economic Perspective. Authors noted that drug companies tend to price new drugs just slightly more than comparable drugs, leading prices to creep up every year.

    Leonard Saltz, chief of gastrointestinal oncology at Memorial Sloan Kettering Cancer Center in New York City, says cancer drugs today cost too much.

    Saltz and his colleagues at Memorial Sloan Kettering have taken a stand on rising drug prices. The hospital's colorectal cancer specialists have refused to use two drugs that cost more than their competitors.

    In 2012, the hospital decided to stop stocking one of these drugs because it cost more than twice the price of a drug that worked just as well. Saltz and two of his colleagues then wrote about their decision in a newspaper editorial.

    Within three weeks, Saltz said, the company offered doctors and hospitals a 50% discount.

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