We Must Stop Discriminating Against the Seriously Ill

The Affordable Care Act bans insurers from refusing to cover people with pre-existing conditions. But individuals can still end up paying thousands of dollars out of pocket for specialty medications, on top of a monthly premium and a deductible. Lucas Jackson/reuters

Twelve million Americans have gained health insurance through the exchanges created by President Barack Obama's Affordable Care Act (ACA). But too often, their coverage has proved "affordable" in name only.

Federal rule makers are set to change that. They're attempting to prevent insurance companies from denying quality coverage to patients with epilepsy, cancer and a host of other chronic conditions. If they succeed, they'll have, at long last, achieved one of the ACA's most important goals: ending discrimination against sicker patients.

The ACA bans insurers from outright refusing to cover people with pre-existing conditions. Unfortunately, that provision didn't actually stop insurance companies from turning away chronically ill patients—it just forced them to find new and creative ways to do so. One common strategy is to design plans so that medications for conditions like epilepsy, cancer and HIV/AIDS are all but unaffordable.

Insurers accomplish this by placing many or all medications for a particular condition on the highest "tier" of their drug formularies—the lists of medicines patients are allowed to take, or off the formulary altogether. For medications in the highest tier, individuals are often required to cover 40 percent—or more—of the total cost.

In the case of some specialty medications, individuals can end up paying thousands of dollars out of pocket, on top of a monthly premium and a deductible.

Sadly, this technique for raising the cost of essential and often lifesaving therapies is now standard. A recent report by Avalere Health finds that in 2015, 60 percent of the midlevel plans sold on the ACA exchanges placed all antiangiogenic therapies—medications that slow the growth of cancer—on the highest cost-sharing tier. Likewise, insurers consistently place many epilepsy medications on the highest cost-sharing tier or leave them off formularies altogether.

When out-of-pocket drug costs go up, individuals are far more likely to go off of their treatment regimen. A Rand Corp. study found that doubling prescription co-pays makes it harder for patients to stay on their medications, reducing adherence to drug treatments by as much as 45 percent and increasing emergency room visits by 17 percent.

This isn't the only way insurers make it difficult for sicker patients to get care. Another tactic is to require patients to try an older, cheaper medicine before they are given access to new, more costly alternatives.

In the case of epilepsy, this often means trying and failing (by having an otherwise preventable seizure) with an older generic before trying the medication that the physician thinks would be best. This leads to significant medical costs and complications, including accidents, emergency room visits and hospitalizations, along with lost wages and productivity.

When patients are forced to take less-effective medicines that don't prevent their seizures, they suffer financially as well as physically. Uncontrolled seizures can lead to disability, injury and even death. Studies show that access to newer epilepsy medications and specialists leads to greater seizure control, and lower hospitalization rates and health care costs.

Because of insurance industry practices that shift onerous cost sharing to individuals, far too many chronically ill patients must choose between their health and financial ruin. This is precisely the kind of injustice that the ACA hoped to end.

Regulators are in the process of updating the ACA's provisions—and they've thankfully caught on to insurers' tactics. They're preparing to issue insurers a warning letter that calls out discriminatory tactics that place undue burdens on individuals living with chronic conditions.

The letter is a great start, but insurers have already proved that if they're given an inch, they'll take a mile. Regulators must specify exactly which plan designs qualify as discriminatory and then codify that decision into law.

Any list of that sort needs to include plans that place all or nearly all medications for certain conditions on the most expensive cost-sharing tier—or, for that matter, plans that refuse to cover certain medications altogether. On top of that, rule makers should discourage plans that micromanage patient treatment by forcing them to adopt less-effective medicines or limit access to provider networks, making it hard to find a specialist.

Six years after the ACA became law, individuals living with pre-existing conditions are still subject to discrimination. It's time to update the law so that the insurance industry's unfair practices no longer threaten the health of everyone who relies on exchange plans.

What's needed is a stricter, clearer nondiscrimination rule that closes the loopholes insurers use to deny coverage to the most vulnerable individuals.

Angela Ostrom is chief operating officer and vice president of public policy at the Epilepsy Foundation.