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Once they pay more than several hundred dollars, Pearson says patients start to abandon their medications.

William Hurd signed up for a Cigna plan with a $616 monthly premium that covered him and his wife in December. The government kicks in about $900 a month in tax credits. Hurd, a 61-year-old diabetic who works a construction job in Orlando, was eager to fill his insulin prescription along with two other medications. But he was shocked when the pharmacy said he would have to pay $1,400 out of pocket for a 90-day supply. He was under the impression that prescriptions were part of the plan and thought he only had a $10 co-pay for prescriptions.

“I already had the plan. I was in and I was ready to cancel it. If I’ve got to pay $1,000 more dollars for drugs … then it’s not worth it,” he said.

Fortunately, Hurd called his doctor and was able to switch to a cheaper brand of insulin and ended up paying only $112.

“This was an extremely expensive misunderstanding,” said his insurance broker Leslie Glogau.

She ran into her own problems with she switched from a private insurance plan to one on the exchange and learned one of her prescriptions was cancelled under the new plan, prompting numerous appeals.

Patient stories in the media have been seized by both political parties, who have put a sometimes misleading spin on successes and failures under the law. Advocacy groups asked about prescription costs repeatedly stressed how beneficial the law is for people with pre-existing conditions, but they still worry about affordability.

Insurers and health navigators say patients are also finding it complicated to figure out which drugs fall into which price categories.

For example, advocates say there’s inconsistency on the Multiple Sclerosis drugs and treatments covered by the insurers and whether they can be altered on a per-patient basis.

“This is very much a work in progress,” said Bari Talente, executive vice president advocacy at the National Multiple Sclerosis Society. The organization recently addressed the issue at a conference in Washington with more than 300 other MS advocates.