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Orphan drugs for rare diseases have helped or saved hundreds of thousands of patients like 2-year-old Luke Whitbeck, but families and insurers are picking up the astronomical cost.
Drugmakers have brought almost 450 orphan drugs to market and collected rich incentives but nearly a third of those products aren’t new or were repurposed multiple times, an investigation shows.
Follow the twists and turns of the orphan drug industry over the past three decades.
Check out all the drugs the FDA has approved to treat rare diseases. You can search by brand name, or by disease, and see familiar names that were first sold on the mass market or all the drugs that won FDA approval to treat more than one rare disease.
The former Congressman championed the Orphan Drug Act decades ago but now he fears it’s being manipulated to make money.
President Barack Obama recounted his health care accomplishments in his farewell address to the nation Tuesday night.
Charlie Oen was addicted to heroin as a teenager. At 25, he's now clean and a peer counselor in Lima, Ohio, where he tries to help people who started using drugs before he was born.
The federal government pays for kidney transplants. But the program only pays for essential anti-rejection drugs for three years. Many people can't afford them and can end up losing the kidney.
Investigators claim drugmaker employees met in secret at restaurants, golf outings and at “Girls Night Out” to raise generic drug prices.
Eight percent of those polled by the Kaiser Family Foundation say they have purchased medications outside of the U.S. to save money.
Advocates want alternatives to drugmaker's pricey pills for those who choose to die in Colorado and elsewhere.
A breakdown of winners — and a few losers — in the sprawling Cures Act approved by the House.
A Kaiser Health News analysis finds that the portion of federal marketplace plans requiring people to pay a third or more of the cost of specialty drugs have jumped from 37 to 63 percent since 2014.
Responding to a national epidemic, many state Medicaid programs are making the coverage rules for these opioid-based medicines tougher so that physicians will think twice before prescribing them. But some worry that legitimate pain patients could suffer.
Three lobbyists for every member of Congress in a push to pass a bill that increases research funding and speeds up approvals.
The legislation would give federal officials more flexibility in evaluating the effectiveness and safety of drugs and devices and add billions of dollars to NIH funding. But critics say it could endanger patients’ safety and doesn’t do enough to stop spiraling drug prices.
Colorado’s approval of a ballot measure sets the stage for efforts in other states.
Despite heavy opposition from the pharmaceutical industry and skepticism from policy experts, many voters see Proposition 61 as a way to protest the nation’s mounting drug prices.
The FDA’s drug-approval team is short more than 700 people and losing skilled staff members to the drug industry.
New research tracks how the widespread availability of these high-powered medications is causing a high rate of hospitalizations for opioid poisoning among children.
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