Frederica Freyberg:
Turning to health care, we continue our coverage of prescription drugs. As drug prices for patients go up, health insurance coverage of them goes down. In our series “Rx Uncovered,” “Here and Now” producer Marisa Wojcik unpacks why this is happening and the impact it’s having on patients. In tonight’s story, we look at how health plans use accumulators to divert financial aid away from patients in need.

Tamra Varebrook:
I couldn’t believe what I found out when this happened. I couldn’t believe it was legal.

Marisa Wojcik:
Tamra Varebrook lives with painful chronic conditions. She can still live her life as long as she has her medication.

Tamra Varebrook:
I changed jobs and started over with a new copay and new deductible. That’s when this hit me. I wasn’t getting my medications. And you know, I thought, what? Why aren’t you sending them? They’re like, “Well, you have a $6,000 balance.” I had my first experience with copay accumulators. I had never even heard of him.

Marisa Wojcik:
A copay accumulator sounds like an obscure insurance term, and it is.

Tamra Varebrook:
And I know people don’t understand this if this doesn’t directly affect them.

Marisa Wojcik:
It’s also a growing trend among health plans. For Tamara’s conditions, her medication costs her the equivalent of buying a car every year.

Tamra Varebrook:
Right now, I take the entire prior year to save up, to try to have enough to buy my drug in January. It’s ridiculously expensive, but it’s the thing that makes me be able to walk and my arms bend and, you know, keep, you know, my joints moving so I don’t end up in a wheelchair.

Marisa Wojcik:
To afford her drugs, her doctors told her about patient assistance programs. It’s often the drug manufacturer helping the patient to afford their own high-priced medication. This kind of financial assistance is referred to as a copay coupon or copay card.

Tamra Varebrook:
That were meant to help the patients get their drugs and pay down their deductibles. Pay down their, you know, on their out-of-pocket maximums.

Marisa Wojcik:
Here’s how they work. A patient is prescribed an expensive name brand drug that doesn’t have a generic. Their health plan has a high deductible and out-of-pocket maximum, which they must meet before the plan will cover the drug. The copay card provides the financial assistance to cover the patient’s deductible and out-of-pocket max. When those are met, the health plan kicks in and covers all or part of the cost that remains of the drug, potentially saving the patient thousands of dollars.

Tamra Varebrook:
It was a life changer. I was, you know, pretty low income at the time when a lot of my medical issues started and I would never have been able to afford these medications.

Marisa Wojcik:
One day, she realized she wasn’t receiving the life-changing assistance or her medication. Tamara was blindsided.

Tamra Varebrook:
They weren’t shipping it. And so I kept calling and saying, “Well, why isn’t this shipping?” They’re like, “You owe $6,000.” And I’m like, “What do you mean I owe $6,000?”

Marisa Wojcik:
The drug company had provided the copay card.

Tamra Varebrook:
I’ve already gotten this and you know, it should be — my deductible at least should be covered.

Marisa Wojcik:
The problem was the financial assistance no longer covered her. The pharmacy told her…

Tamra Varebrook:
If you don’t pay for it in full, you are not getting your medication. And I went months without.

Marisa Wojcik:
Tamara had recently started a new job where her health plan contained a copay accumulator.

Tamra Varebrook:
I spent countless hours on phone calls. I can’t even tell you how upsetting it was.

Marisa Wojcik:
The accumulator is a relatively new tool used by health plans and pharmacy benefit managers. A copay accumulator takes the financial assistance, the copay card, and only applies it to the total cost of the drug. It does not count towards the patient’s deductible or out of pocket maximum. In other words, the patient no longer saves money. The health plan saves money by taking the full amount of the copay card and still collecting the deductible and out-of-pocket maximum paid by the patient.

Jim Turk:
This is a very scary moment for me, just knowing a lot of other people with MS.

Marisa Wojcik:
Jim Turk has multiple sclerosis or MS, a disease that attacks the body’s nerves. There’s no cure, only treatment.

Jim Turk:
If you’re on drugs, I mean, that’s your lifeline. That’s something that’s preventing that or at least slowing that down significantly from happening. So they don’t have as much stress in their life either. And the stress in their life can also exacerbate the symptoms. So it’s just this vicious circle.

Marisa Wojcik:
He’s an advocate for people with MS, knowing the struggles firsthand.

Jim Turk:
I look at a list to see what all the drugs cost. Ocrevus, the one that I was on last, which was actually the newer drug, was one of the cheaper drugs and that was, I think, $70 or $80,000 a year, which I can’t afford. I’m on disability.

Marisa Wojcik:
Having been the recipient of copay cards, he stresses their importance for patients to survive.

Jim Turk:
You have to make the choice between paying for your drugs that might be a lifesaver or paying for groceries. And obviously, there’s no choice there. Or paying for rent. And that’s really what it comes down to.

Marisa Wojcik:
And a copay accumulator…

Jim Turk:
They’re essentially designed to be confusing.

Marisa Wojcik:
…makes that choice even harder.

Tamra Varebrook:
I thought, holy cow. Well, in 21 states, it is now illegal, but not Wisconsin.

Marisa Wojcik:
Other states have outlawed accumulators, and a bill currently in Wisconsin’s Legislature would as well. At a hearing, health plans and pharmacy benefit managers spoke in opposition.

Patrick Lobejko:
This bill does nothing to control the soaring prices of prescription drugs set by pharmaceutical manufacturers, but instead rewards drug makers for steering patients towards more expensive brand name drugs.

Marisa Wojcik:
They say copay cards are a ploy by pharmaceutical companies to get patients to take expensive name brand drugs.

Sharon Faust:
Rather than benefiting those in financial need, a lot of these coupons from manufacturers act as an inducement to move to higher cost products.

Marisa Wojcik:
Supporters of accumulators say they lower costs by saving health plans money, not just one patient, but others refuted these claims.

Bill Robie:
Nearly all copay assistance programs from manufacturers are for drugs with no generic alternatives. The copay assistance increases medication adherence. Studies have found that morbidity and mortality associated with poor medication adherence cost the US healthcare system $528 billion annual. Nonadherence can lead to treatment failure, resulting in poor outcomes such as worsening of condition, admission to the emergency room and hospitalization, and requiring new prescriptions to treat subsequent comorbidities, which results in higher cost to the entire health care system. That is what will increase premiums.

Marisa Wojcik:
This rings true for Tamra.

Tamra Varebrook:
The specific drug is not the only cost of chronic disease. Chronic disease causes people to miss work, end up in emergency rooms, hospital bills.

Marisa Wojcik:
Drug manufacturers do not like accumulators because the assistance doesn’t go to help the patient. She fears they may end up not providing the assistance at all.

Tamra Varebrook:
I’m afraid that the pharmaceutical companies stop the programs because they’re not helping the patients, and that would be a real nightmare because then everybody would suffer. This is where we’re at in Wisconsin now, and I feel bad for everybody who has a child or, you know, any adult that runs into these issues because most people are not prepared with that kind of money, and you aren’t going to get your medication.

Frederica Freyberg:
Reporting from Germantown, I’m Marisa Wojcik for “Here & Now.”