Sara D. Davis for The New York Times
Jessica Thomas, 34, with her son Jacob, 5. She has multiple sclerosis but fears she will have to pay more for medicine.
Among the most troubling questions facing consumers as they shop for insurance under the Obama administration's new health care law is whether the plans will cover the drugs they take — and how much they will have to pay for them.
Sara D. Davis for The New York Times
Jessica and James Thomas with Jacob. She will lose prescription assistance in December.
But with less than two weeks remaining until enrollment opens on Oct. 1, the answers are still elusive and anxiety is growing for consumers whose well-being depends on expensive medications.
States running the marketplaces where the plans will be offered have not released details about which drugs will be covered. Insurers have said little about how much consumers will be asked to contribute or what types of restrictions will be placed on certain medicines. Of the few states that have revealed specifics, some have plans that will require patients to contribute as much as 50 percent of the cost of the most expensive drugs.
"I've got to be honest and say I'm a little bit nervous," said Jessica Thomas, a mental health counselor in North Carolina who takes the drug Tecfidera to treat her multiple sclerosis.
Ms. Thomas, 34, has been enrolled for two years in a program for people with expensive medical conditions that is run by North Carolina. But that program is ending in December, and she must select a new plan in the state marketplace. At the top of her mind is how much she will have to pay for Tecfidera, which costs more than $4,000 a month. "I think that's the hard thing right now is that it's the unknown, deciding what the financial cost will be," she said.
The picture will not get immediately clearer once enrollment begins. Without a central hub for evaluating drug coverage, patient advocacy groups say they are already warning their members to prepare for a tedious slog through Web sites, downloaded records and phone calls to customer service hot lines.
"I had frankly expected a higher level of transparency by this point," said Brian Rosen, the senior vice president for government and public affairs at the Leukemia and Lymphoma Society.
Insurers and officials in the Obama administration are counseling patience, saying consumers will have six months, once enrollment opens, to choose a plan that is right for them. The administration asserts that chronically ill patients are among the biggest beneficiaries of the new law, given that insurers are now prevented from denying them coverage and cannot charge them higher premiums because of their illness.
"For many Americans, these changes will mean that a diagnosis no longer means choosing between facing bankruptcy or ignoring care," said Erin Shields Britt, a spokeswoman for the Department of Health and Human Services.
Others say some initial uncertainty and even confusion are to be expected. "I think you have to walk before you can run," said Karen Ignagni, president and chief executive of America's Health Insurance Plans, an industry trade group. "This is a massive undertaking."
The plans offered in the marketplaces must cover a minimum number of drugs in every treatment category, with the exact count set by a representative commercial plan, known as a benchmark plan, that is designated in each state.
Oregon, Virginia, Connecticut and other states plan to cover more than 97 percent of drugs, while others like Maryland, Colorado and California plan to cover 54 to 84 percent, according to an analysis by Avalere Health, a consulting firm. Patients can lobby for an exception if they can demonstrate that a drug not covered by their plan is medically necessary.
But how many drugs will be offered under the plans is only a starting point. Perhaps more significant is how much patients will be asked to contribute toward the cost of those drugs. Only a handful of states have released those details, but advocates for patients with chronic diseases and those in the drug industry say they are troubled by what they have seen so far.
Many of the plans are requiring that patients taking the most expensive specialty drugs — those for treating serious illnesses like cancer, multiple sclerosis and autoimmune disorders — contribute significantly to the cost. For example, in Oregon, among the dozens of plans expected to be offered are standard plans that will ask consumers to pay half the cost of specialty drugs.
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