Patient assistance programs, whether from drugmakers or charities, aren’t enough to help the growing number of people being prescribed specialty drugs. Efforts to change the situation are coming from many directions. The National Coalition on Health Care — made up of more than 80 medical societies, health care providers, insurers and other groups — has launched the Campaign for Sustainable Rx Pricing to spotlight what it brands as “unsustainable and abusive” prices for some specialty drugs.

Some states have moved on the same front. At least six have adopted legislation that in one way or another caps how much consumers can be required to pay for specialty drugs. And a bill in Congress would place new limits on specialty tiers in private health plans.

Perhaps most important for people on Medicare, some Capitol Hill lawmakers are also pushing to allow Medicare to negotiate with manufacturers for lower prescription drug prices.

There are also calls for transparency from drugmakers. Karen Ignagni, the president and CEO of America’s Health Insurance Plans, says that drugmakers should have to make public what they spend on R&D and marketing, just as insurers must disclose what they spend on medical care and administrative costs.

“There’s no transparency in the cost of producing these drugs,” says Purvis of AARP. “At what point is it profiteering? Right now, there’s just no way to know.”

For now, new specialty drugs keep coming. Joel Roth has his eye on one for his hepatitis C virus. After he found a way out of his “impossible situation” and took Sovaldi, the drug lived up to its promise. “I had six months of no virus,” Roth says. “My skin cleared up. Everybody said, ‘God, you look good.’ ”

But soon after he stopped taking Sovaldi, Roth says, “it came back.”

Now comes Harvoni, which combines Sovaldi and the drug ledipasvir in one pill. At over $1,150 a pill, a 12-week treatment costs nearly $13,000 more than Sovaldi.

“It’s pretty much the holy grail,” Roth says. “I’m going to have to take it.” Sometime soon, Roth will once again have a huge financial burden to negotiate.

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