‘We’ve watched her live in pain’ Why some Sacramento families can’t afford needed medication

Seventeen-year-old Macy Coad earns straight As in her honors and AP classes. The high school swimmer is being recruited by colleges. But you wouldn’t know she’s been battling juvenile arthritis since she was a year and a half old.

Coad has been on some form of medicine since she was three, going through as little as one steroid injection per month to as many as an injection per week to ease her symptoms.

“We started to see a normal kid emerge. A kid that wanted to play, a kid that can run, a kid that can do pretty much all the things that other kids can do,” her mother, Gerica Coad, said.

Coad’s arthritis treatment has been covered under her father’s medical insurance plan. Around 2020, a copay accumulator was added to the plan, her mother said. But the family didn’t know until it was time to refill Macy’s prescription.

A copay accumulator prevents copay assistance from contributing to one’s annual deductible, leaving a bill for the remainder. This can unfairly target people with a need for continuous medication and those who depend on copay assistance to cover it.

The copay accumulator left the family scrambling to find a way to pay an additional $1,600 monthly for the medication their daughter needed, as well as meet their deductible for the year.

“Not getting her the medical care that she needs is not an option. And because we’ve watched her live in pain, we couldn’t do that again, there’s no way,” her mother said.

Melissa Horn, director of state legislative affairs at the Arthritis Foundation, said illnesses like arthritis don’t often have generics, and if generic versions were available they can be just as expensive.

“We find that if a copay responsibility for a patient is more than $50 they’re more likely to abandon it, and it adversely impacts our patients, because if they abandon their prescription, they’re not managing their pain and their disease could progress to be worse,” she said.

In 2023, more than a third of Americans were found to have difficult affording prescription medications.

The problem with copay accumulators

When it comes to medication that is needed consistently, the repetitive cost can be overwhelming.

That’s where copay assistance comes in. The drug manufacturer, or, other third party organizations, provide patients with copay assistance. Essentially, they cover a portion of the cost of the medication so what’s left is a discounted price at the pharmacy counter.

When it comes to medical insurance, policyholders are required to meet a deductible each year, which varies depending on policy and medical insurance provider.

A deductible is the amount of money a policyholder has to pay before their insurance will cover the remainder of their medical costs.

The problem, however, is that drug insurance companies are not accepting copay assistance toward a patient’s deductible due to a practice known as a copay accumulator, according to Carl Schmid, executive director of the HIV + Hepatitis Policy Institute.

“So insurers are taking the money, but they’re not applying it to the person’s out-of-pocket costs and their deductible,” Schmid said. “And then the insurers make the patient pay for the costs.”

Gerica Coad described the feeling her and her husband had after finding out about the accumulator as exhaustion.

“It was a big challenge for a couple of months and we just paid it,” she said.

For a working class family, paying that amount monthly is not sustainable because eventually, savings run out, she said.

Copay accumulator programs were enacted in 2021 during the Trump administration, according to the HIV + Hepatitis Policy Institute.

Insurance agencies claim that these programs would incentivize patients to switch to lower-cost generic drugs, but certain illnesses have no lower-cost alternatives, according to the American College of Rheumatology.

Melissa Horn, director of state legislative affairs at the Arthritis Foundation, described it as “getting a scholarship to help you pay for your cost-sharing responsibilities.”

This assistance would cover medicine costs, but contributes nothing to the deductible, leaving a patient with a bill all the same, while drug insurance companies pocket the copay.

For a working class family, paying thousands of dollars a month for medication is not sustainable because eventually, savings run out, Gerica Coad said.

“We find that if a copay responsibility for a patient is more than $50 they’re more likely to abandon it, and it adversely impacts our patients because if they abandon their prescription, they’re not managing their pain and their disease could progress to be worse,” Horn said.

Federal and state plans

The complexity of a copay accumulator program hinges on whether an insurance policy is federally or state funded.

If medical insurance is federally regulated, “it takes an act of Congress or a department and agency to correct the regulations or issue guidance,” Horn said.

Schmid’s suit issued guidance for all federally regulated plans, but “the state still needs to act,” Horn said.

Advocacy groups in California are pushing for a bill to address these problems, Assembly Bill 2180, introduced by Assemblywoman Akilah Weber, D-San Diego.

This bill “would prohibit California-regulated health insurers and HMOs from utilizing copay accumulators if the patient has a chronic or terminal illness,” said Weber in her bill presentation to the Assembly Health Committee.

As of May, the bill is held under submission, preventing it from moving forward.

Group sues federal government

In response to insurers “double-dipping,” Schmid, the HIV + Hepatitis Policy Institute along with other advocacy organizations and three patients, sued the U.S. District Court for the District of Columbia in September 2023.

The federal judge ruled in favor of Schmid, but “the federal government is not enforcing the decision,” Schmid said. He said they are now waiting on a federal ruling.

“And we are very concerned that that rule may allow this practice to continue, that the insurers are able to double dip and that the copay assistance would not count,” Schmid said.

According to Horn, in order to mitigate this problem, state law or guidance from the executive brand is needed.

While the federal ruling was passed, there has been no real enforcement from federal agencies, Schmid said. He said they hope further federal clarity will “put teeth behind” the ruling.

However, Horn stressed the importance of action protecting patients on every legislative level, state and federal.

“In our eyes a payment is a payment. You don’t see students that are punished for using scholarships. Why should patients get punished for using copay assistance,” she said.

While the Coad family’s medical plan has since been rewritten without an accumulator, other families are not so lucky.

“None of those things would have happened if we didn’t have access to these medications and have the financial support to be able to get them,” Gerica Coad said.