October 14, 2013 | Posted By Bruce White, DO, JD

Enrollment with the new Affordable Care Act [ACA] exchanges appears to be off to a bad start. It may be that by the time the insurance exchanges and plans take effect early next year, all the glitches may be worked out. However, even at this relatively late date, many questions remain unanswered. Some of the more distressing unanswered questions relate to the availability of expensive medicines

According to The New York Times, several of the states administering exchanges have yet to release information about drug formularies or fully explain which drugs might be excluded. Of the few states that have released this kind off information, some have options that will require patients to pay as much as 50 percent of the costs of the most expensive drugs covered. Of course, there’s no guarantee that some drugs will be included at all.

Sadly, as discussed in this same article, some patients may be much worse off under the ACA when it comes to obtaining the more expensive drugs. The story shared the case of Ms. Jessica Thomas, a 34-year-old mental health counselor in North Carolina. Ms. Thomas has multiple sclerosis. As part of her treatment regimen, she takes Tecfidera® (dimethyl fumarate, Biogen Idec). The medicine costs about $4,000 per month. Two years ago, she enrolled in a special North Carolina program for persons with medical conditions that are very expensive to treat. However, with the coming of the ACA, that special program is ending in December. She now has to select a new plan under the ACA operating in North Carolina. However, since few plans have announced how they will cover the more expensive medicines, she’s left in a limbo that is very difficult to navigate without more specific information.

Under the ACA, plans offered in the marketplace must offer a minimum formulary as compared to a benchmark representative commercial plan. But that said, there can be much state variability: Oregon, Virginia, and Connecticut plan to cover about 97 percent of drugs, and Maryland, Colorado, and California plan to cover between 54 and 84 percent.

Also, the number of drugs initially covered is just a beginning: More important may be how much patients will be asked to contribute toward the drug costs, either as enrollment subscriptions, deductibles, or co-pays. Moreover, in the end, the ACA plans may not be that much different from employer-based health plans. For example, in Oregon, an employee with typical employer-based health insurance – on average – contributes about 32 percent of the cost of specialty pharmaceuticals.

Interestingly though, the ACA limits enrollees’ out-of-pocket expenditures to $6,350 per year for an individual, and $12,700 for a family. This is clearly a welcome change for some patients. In fact, some enrollees may qualify for additional subsidies that lower the cap even more. Very clearly, some patients – like Jessica Thomas – will reach that cap quickly. One wonders though if – as the new ACA plans roll out – if some patients like Jessica Thomas may pay more for insurance and specialty drugs than previously. However, at least with the ACA now, there are maximum out-of-pocket costs for covered patients and families, that’s certainly a welcome change from the past.

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BIOETHICS TODAY is the blog of the Alden March Bioethics Institute, presenting topical and timely commentary on issues, trends, and breaking news in the broad arena of bioethics. BIOETHICS TODAY presents interviews, opinion pieces, and ongoing articles on health care policy, end-of-life decision making, emerging issues in genetics and genomics, procreative liberty and reproductive health, ethics in clinical trials, medicine and the media, distributive justice and health care delivery in developing nations, and the intersection of environmental conservation and bioethics.