Congress Used Dying Kids and Slick PR to Sell America a Handout to Big Pharma

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The “21st Century Cures Act” is being hailed as perhaps the last great piece of bipartisan legislation before Donald Trump takes over as president. It is undeniably the most important health care law to pass since the Affordable Care Act, and it’s being touted by politicians and “patient advocacy groups” as a huge step forward that will affect every American family.

It is also a law with a terribly misleading and harmful name that will function as a handout to the big pharmaceutical companies who shaped the bill that passed, in part due to a manipulative public relations campaign. Indeed, the bill itself was written largely by the healthcare industry, according to emails obtained by InsideHealthPolicy using the Freedom of Information Act.

I am not a healthcare policy expert, but I spent much of 2015 examining “the Cure Culture,” the American healthcare and media industrial complex that sells hope and the false promise of full cures for chronic illnesses in lieu of more realistic goals such as bringing down the cost and improving access to existing treatments.

For a decade, I watched my best friend Katelin slowly die of cystic fibrosis, a chronic, incurable disease. Since at least the late 1980s, the Cystic Fibrosis Foundation, politicians, pharmaceutical companies, and researchers have focused the vast majority of their funding and energy on “curing” the disease, while ignoring the needs of patients who simply want to manage their lives with treatments that already exist but are expensive and often inaccessible. An annual supply of Kalydeco, the most effective cystic fibrosis medication, costs patients $311,000 per year. CFF research helped develop that drug; the foundation sold its royalty rights for $3.1 billion.

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