BALTIMORE — For most of her life, Erica Miller suffered from a medical condition she didn’t know she had.

When she finally got a diagnosis and treatment, the cost of her medication varied wildly month-to-month from as low as $45 to as high as $600 — even with insurance. She couldn’t afford the care she needed.

Maryland lawmakers want to help residents like Miller who battle exorbitant prescription prices, and they are pushing bills in the state House and Senate to limit costs.

“Our health care system is not just broken,” said House Health and Government Operations Vice Chair Bonnie Cullison. “It’s really failing us.”

Finding the quiet

Throughout her life, Miller could not silence the noise in her brain.

Miller, a mother and Baltimore resident, has adult ADHD — a diagnosis she didn’t receive until she took her son to get tested. As the doctor described the symptoms, she said a “lightbulb went off.”

“It was a moment that was just kind of an eye-opener,” Miller said.

She tried to manage it on her own for a while, but it became difficult. Miller found a therapist and began trying to manage her ADHD with medication.

That’s when she found Vyvanse, a prescription drug used to treat ADHD and binge-eating disorder. Miller told The Baltimore Sun about when she knew she had finally gotten her dosage right. She said that she cried on the phone to her then-husband, telling him her “brain is finally quiet.”

“My mind is quiet, and I’m like, ‘Is this what it feels like?’” Miller said. ”For anyone who has not experienced or suffered from ADHD, your brain can be very, very busy. For the first time, I didn’t experience an ‘on’ brain.”

Miller was now able to focus and advance in her career. But she ran into a snag with the high and inconsistent costs of her prescription.

Finding a solution

House Bill 424 and Senate Bill 357, sponsored by Cullison, Del. Jennifer White Holland, Senate Education, Energy, and the Environment Committee Chair Brian Feldman and Sen. Dawn Gile, all Democrats, seek to expand the authority of the Maryland Prescription Drug Affordability Board and allow it to set upper payment limits on medications for Marylanders.

Cullison said that if the board lowers the cost of prescriptions, commercial market insurance companies would be required to lower premiums or implement different copay or coinsurance structures.

Under Maryland law, the Prescription Drug Affordability Board, a five-member independent agency created by the legislature in 2019, can only limit the costs paid by state and local government agencies for prescription medication. It is currently looking at possibly setting upper payment limits for Jardiance and Farxiga, which are used to treat diabetes. Cullison said these two medications represent the “single biggest cost for state employee health plans.”

Between 2020 and 2024, the price of those drugs in the state skyrocketed from $14.5 million to $29.3 million. Cullison said that Maryland has contributed $870 million in research grants to develop both.

Dr. Andrew York, the executive director of the Prescription Drug Affordability Board, said cost review studies are currently being performed on six additional drugs.

Under the bill, upper payment consideration for the general public would not go into place until the board implements payment limits for purchases through the state and local governments.

Drug prices are negotiated between manufacturers and insurance company pharmacy benefit managers.

“Pharmaceutical companies are not regulated in any way except for their product. Their product is regulated, their pricing is not,” said Cullison. “It was supposed to be managed by competition, but … I don’t think competition is working on behalf of the people who need the drugs.”

Testifying in opposition to the bill, Kristen Parde, the deputy vice president of state advocacy for PhRMA, said that establishing upper payment limits could disrupt the pharmaceutical supply chain and “threaten patient access to needed medicines.”

“[Upper payment limits] create uncertainty in a complex system, making it harder for providers to secure medications at state-prescribed prices, leading to treatment disruptions, or inability to access medicine for patients,” she said.

Patients testified before lawmakers Thursday, asking them to consider what the potential reduced availability of life-saving drugs could mean for them.

“This legislation could make it harder for patients to access the treatments they need to survive and manage diagnoses like breast cancer,” said Marquita Goodluck, a breast cancer survivor. “While the goal of lowering drug costs is important, the [Prescription Drug Affordability Board] has yet to deliver on this promise.”

Former Gov. Larry Hogan, a Republican, vetoed the 2020 bill that was poised to create the funding stream for the Prescription Drug Affordability Board during his second term as governor, citing its cost and the coronavirus pandemic as his reasons to delay its work.

Del. Nic Kipke, an Anne Arundel County Republican, said Thursday that he is worried price controls issued by the board could lead to rationed prescriptions or worse products.

York called upper payment limits “a tool in the toolbox,” saying that they are not necessarily the answer for every situation. He said that the first action the board would likely take is to see if it can promote market competition.

Cullison said Wednesday that companies have not refused to sell their drugs in other developed countries with regulatory standards, using Germany as an example.

Regarding medication pricing, the German federal government functions similarly to the Prescription Drug Affordability Board. There, a group of stakeholders and medical experts negotiate the price with each other and then take their negotiation to drug companies.

The results are stark when compared to U.S. prices.

In America, Skyrizi, which is used to treat moderate-to-severe plaque psoriasis, has a wholesale acquisition cost of $21,017. It’s $3,711 in Germany.

“The German health care system is not like ours, I’m going to say that out front,” Cullison said. “But these are the same drugs, being made by the same companies that we’re using here in America.”

Losing the quiet

Big price tags on prescriptions have a tangible impact on Marylanders.

The high, varying prices of her prescriptions coincided with stressful events in Miller’s life. She got divorced and was no longer insured through her ex-husband’s health care plan. She was now a single mother, and keeping up with the cost of her medication was becoming untenable.

“Even with a decent job to accommodate for the varying costs, it was still a struggle,” Miller said. “I have to take the prescription. I’m in executive leadership. I need to be able to make sure that I can function at that level so I can continue to provide for my family.”

She said she was having to make decisions between paying rent or paying for her medication. There were a couple of months that she didn’t take it.

“The ‘quiet’ mind went away, and the ‘noisy’ mind came back, and trying to navigate that along with a divorce — it just became too much,” Miller said.

What Miller has experienced is not uncommon. According to Cullison, one in three Marylanders skip doses, ration drugs, or do not pick up prescriptions from the pharmacy because of the costs.

There are also racial disparities in access to affordable drugs.

According to White Holland, Black and Latino adults over 65 are nearly twice as likely to report difficulty affording medications when compared to white people in the same age bracket.

Not taking her prescription began to affect Miller’s work performance. She switched to Focalin, a different ADHD medication. The cost was a consistent $90 each month, but she said it doesn’t work as effectively for her as Vyvanse did.

Miller said she ended up losing her job. She pointed to her inability to manage her ADHD with a drug that worked for her.

“I think a lot of people don’t think that being a middle-class corporate professional, that they could be impacted,” said Miller. “I didn’t expect to experience a divorce. I did not expect now, at this point in my life, to be a single mother of two. I didn’t expect for this to happen, and now I’m having to juggle financial resources because these pharmaceutical companies want to play Russian roulette with what we can afford.”

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