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SALT LAKE CITY — As Jennifer Hepworth held her 3-week-old daughter, she recalled feeling hope when doctors at Primary Children's Hospital told her a medication was on the horizon that would help treat her baby's cystic fibrosis and extend her lifespan.
"And we were told at our first meeting with her pulmonology team at Primary Children's Hospital that this was going to be a very expensive disease, so we'd better have good insurance," Hepworth told lawmakers during a Senate Business and Labor Committee meeting on Tuesday.
The drug mentioned by doctors did become available by her daughter's second birthday, and it costs $300,000 per year. Despite the astronomical cost, Hepworth said she's grateful the family has been able to access it with the help of manufacturer copay assistance programs.
They will always face debt to keep their now 8-year-old daughter alive, Hepworth said.
"And we could not do that without these programs," she added.
But for some patients and families with complex diseases that need treatment with specialty medications, payments made by manufacturer assistance programs or rebates don't go toward a patient's copay or out-of-pocket deductible, said Senate Majority Leader Evan Vickers, R-Cedar City.
"Having something that is meant to assist patients, to help patients, and then having that taken away because the insurance company no longer wants to apply those funds — but they're going to be getting them either way — I think is atrocious," Hepworth said.
Vickers hopes his bill SB139 will help keep costs down for those who need expensive prescriptions.
In the last several years, most drug research has gone into specialty drugs, said Vickers, who is a pharmacist by trade.
He said most drugs advertised on TV such as those for cancer tend to be specialty medications, which he described as revolutionary and often life-changing.
"But they are very, very expensive," Vickers said during the committee meeting.
And they often don't have generic or lower-cost versions.
Often, an insurance company won't cover all of the cost, or even much of it, according to Vickers. But drug manufacturers sometimes offer financial assistance to patients, which pharmacies take care of collecting.
"The challenge has been that oftentimes the patients have a high deductible plan ... but the insurers do not allow that secondary payment, that third-party payment, to go against the deductible or the out-of-pocket," Vickers said.
SB139 would require insurance companies to allow that assistance to go toward the patient's deductible or out-of-pocket cost.
After going through the process to determine that the specialty medication is right for the patient — if, for example, there aren't lower-cost generic versions, then the bill would require that insurance companies allow third-party payments to go toward the deductible or out-of-pocket.
Vickers said the "upside" to the bill would be to the patient's family, who oftentimes struggle with the ability to pay. The "downside" for insurers is the potential of raising costs to them, the lawmaker noted.
"I've tried to find a balance where we can minimize that cost to the client," he said.
Vickers said he's working with other stakeholders on the bill to ensure it is "balanced." One issue he wants to avoid is incentivizing more expensive drugs when there are less expensive drugs available that would work for a patient. The bill would only apply to the commercial market and not Medicare or Medicaid.
Frank Pignanelli, a lobbyist on behalf of Regence Blue Cross Blue Shield, acknowledged that there will be a cost burden involved — including to taxpayers who fund insurance for public employees. Private insurance companies will also be paying more, he said.
"But we believe that the goal of this bill to help the patients is a worthy goal. When there's no alternative there, and the transparency things are provided for, it's going to increase costs in insurance. But the way that the senator has crafted this language, we're willing to submit to that because we think that the goal's there," Pignanelli said.
Vickers noted the issue has been discussed by the Legislature in the past, but legislation hasn't come to fruition.
Representatives from several health care advocate groups spoke in support of the bill Tuesday. It received a unanimous recommendation from the committee, meaning it will move to the full Senate for a vote.
