Cost barriers rise for patients

THERE SEEMS TO be a new story each day about how patients across the country are being treated unfairly by their health insurance company. Chances are, you or someone you love has been through something like this.

These are patients who have done the right thing, worked hard, paid their premiums, and expected that when and if they got sick, they’d be covered. Well, for many the “when” has arrived, but there are still a lot of “ifs” as to what their coverage will be.

The latest “when and if” scenario concocted by insurers and their middlemen, Pharmacy Benefit Managers (PBMs), targets those with the most need, and with some of the most difficult diseases to treat and manage.

Many patients dealing with chronic diseases, diseases that have limited treatment options, such as people living with HIV or hepatitis C, take advantage of co-pay coupons offered by prescription drug manufacturers to defray the medication cost. Often, these medications are newly developed, or for a specific patient population, and therefore have higher costs. In most instances, these treatments are all that’s available; no generic equivalent yet exists. The co-pay assistance programs are often the only way a patient can afford the needed treatment.

Until recently, when using a co-pay assistance card or coupon, the full cost of the medication would be applied to a patient’s deductible. Once hitting that deductible, the medication would be covered by the insurer.

But, much to the surprise of everyone, insurers and PBMs have started changing the game. Several big insurers have begun to institute new policies, only counting the cost that the patient pays out of pocket to the deductible, thereby raising the amount of what the patient is responsible for paying. So, when your coverage kicks in it will be much further down the road, and only available if you meet your deductible, which is likely thousands of dollars.

For many patients, this new and deceptive tactic is just coming to light, as beneficiaries were not properly informed that there would be a change in the deductible calculation, and will be expecting to hit their deductible in the coming weeks or months.

For those of us who have long worked with patients, these tactics are nothing new.

It seems each year, we’re hearing about another new way access to medications is delayed or denied. It’s another way insurers and middlemen are changing the rules to the game, leaving patients behind.

At the “I Am Essential” campaign, we strive to help patients tell their personal stories, and to help them take action to get the treatments they need to stay healthy and alive. Through a recent campaign, we are hearing from patients across the country – and here in Massachusetts – who have either been denied or forced to pay out of pocket for prescription medicine they thought was covered. But how many stories do policymakers need to hear for things to change?

The “when” question we should be asking is when is enough, enough? When will our elected officials listen to what’s happening to patients and call out these egregious practices by insurers and take action? When will the health of patients not be dependent on if an insurer deems them worthy of coverage?

We are calling on policymakers and elected officials at every level in every state, to listen to your residents, hear the stories about the egregious tactics they are dealing with from their insurance companies and step in.  Stop these “when and if” scenarios for patients and ensure access to critical medications—after all, isn’t that what we’d all want, “when and if” we get sick? 

Carl Schmid is the deputy executive director of The AIDS Institute in Washington, D.C., and one of the leaders of the “I Am Essential” coalition of patient groups.