The Weekly | Life-Changing Drugs Almost Nobody Can Afford

Episode 11: ‘The Six Million Dollar Claim’

Producer/Director Suzanne Hillinger

Patients suffering from rare diseases who had little hope for a treatment now have access to life-changing medicines, thanks to pharmaceutical companies’ investment in so-called orphan drugs, which treat diseases that affect fewer than 200,000 people. But the increasing number of people who would benefit from these treatments may not be able to afford the stunningly high prices, which can reach far beyond $1 million a year.

Reed Abelson and Katie Thomas, who cover the health care and drug industries, examine one ultra-costly drug that threw a union health plan into a crisis as it struggled to pay for an Ohio family’s prescriptions. Reporting for “The Weekly,” Reed and Katie found that pharmaceutical companies hold most of the power to set their own prices, and desperate patients and their health plans have few options and little recourse.

As treatments for rare diseases become more available, costs are skyrocketing and the health care industry is racing to find ways to provide promising new drugs to many more people.

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Featured Reporters

Reed Abelson covers the business of health care for The New York Times, where she’s been a reporter since 1995. Reed writes about health insurance, how financial incentives affect the quality of care people receive and how health care has changed since the Affordable Care Act. Follow Reed on Twitter at @ReedAbelson.

Katie Thomas also covers the business of health care, with a focus on the drug industry and the high price of prescription drugs. Before she began writing about health care in 2012, Katie wrote investigative stories for the Sports desk about issues like gender equity in high schools and colleges, and whether student athletes should be paid. She also covered the Beijing and Vancouver Olympics. Follow Katie on Twitter at @katie_thomas.

Complete Coverage

The Swiss drugmaker Novartis announced in May it would price its drug for treating a rare muscle-wasting disease that affects babies at $2.1 million, which is believed to be the highest price ever set for a single treatment. The company was singled out in August by the F.D.A. for failing to report falsified data submitted during the drug’s approval process.

President Trump has said that lowering drug prices would be a priority for his presidency, and his administration has identified wide-ranging measures to try to lower out-of-pocket costs.

Last month, the administration said it was trying to make it easier to import less expensive drugs from other countries, especially Canada.

A few weeks earlier, a federal judge threw out a new requirement that drug companies disclose prices in TV ads. That same week, the president abandoned a plan that would have reduced out-of-pocket costs for older consumers because of concern it could raise Medicare drug-plan premiums.

The administration had proposed the plan in January, which would have upended longstanding pharmaceutical industry practices and required health plans and middlemen to pass rebate savings on prescription drugs to patients. Reed and Katie wrote what the proposed plan would mean for consumers.

Senior Story Editors Dan Barry, Liz O. Baylen, and Liz Day
Director of Photography Victor Tadashi Suarez
Video Editor Geoff O’Brien
Associate Producer Abdulai Bah

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