SALT LAKE CITY — After contracting a virus as a baby, 14-year-old Kaden was diagnosed with Type 1 diabetes.

“Just to keep our buddy alive, it’s pretty expensive. And it doesn’t need to be. It shouldn’t have to be this way,” said Laura Finch, Kaden’s mom.

But families like the Finches are getting a little help from Utah legislators, with Tuesday’s unanimous Senate passage of a bill to make insulin more accessible. Now it just awaits Gov. Gary Herbert’s signature before it becomes law. Meanwhile, other bills addressing drug costs sit on Capitol Hill pending final passage in the Legislature.

And some advocates say more could be done.

For the Finches, the cost of insulin used to be much higher, but the family now has an insurance plan that makes it more affordable. It hovers around $100 a month for them.

The Finches’ struggle to afford essential prescription drugs and supplies isn’t unique. Nearly 1 in 4 Utahns believe prescription drug prices largely impact their lives, according to new Deseret News/Hinckley Institute of Politics poll.

“It’s just wrong. Something needs to change. It just needs an overhaul. ... It puts people in huge debt and poverty, and it’s medical expenses,” Finch said.

Deseret News

Meanwhile, 29% of Utahns strongly agree and 39% somewhat agree that the state government should play a “significant” role in regulating the cost of prescription drugs, according to the survey.

The supplies needed to manage Kaden’s diabetes come at a staggering cost, including a pump and tubing supplies. His glucose monitoring system reads his blood sugar continuously because he’s unaware at night when his blood sugar goes too low or too high — and costs thousands of dollars for the different supplies needed to use it.

However, “I would say ours is not as severe as other people,” Finch said, and in the diabetes community, she knows of other parents who need to pay hundreds a month for insulin.

While praising the efforts being made by lawmakers, Courtney Bullard, education and collaborations director with the Utah Health Policy Project, says they don’t get to the root of the problem.

The policy project works with Utahns statewide to help them navigate the health care system. In her organization’s past polling, Bullard said it found that almost 30% of Utahns don’t take their prescribed medications because of cost.

“I think that this really needs state attention,” Bullard said. The organization also found that Utahns support government solutions — something unique in a conservative state.

“As far as health care and drug prices, this is something that Utahns really understand the value of having legislative intervention, because prices are so out of control,” according to Bullard.

She said the most effective legislation to lower drug costs would target manufacturers — but bills running in Utah focus on pharmacy benefit managers or specific drugs like insulin. Though the organization supports those bills, Bullard said, “they’re not actually going after why drugs cost so much, they’re just shuffling costs down the road.”

“There are solutions, I think, on the table at the session right now. But it’s incredibly hard to get past lobbyists and big industry to get it done,” Bullard said.

Insulin affordability

HB207 creates a $30 cap on insulin for patients — or seek a guarantee that patients pay no more than the discount price available to public employee health plan members, a $100 cap. The bill also directs the Utah Insurance Department to conduct a study on insulin pricing.

“Drug cost is probably one of the top three or four issues every year. It has been ever since I’ve been up here,” said bill sponsor Rep. Norm Thurston, R-Provo.

“Not everybody struggles with drug costs, there are a lot of people who don’t, but everyone knows somebody that this is a problem for. And it’s also a problem for the system. When drug prices are high, it drives up the costs of premiums for everybody.”

A recent University of Utah study found that many diabetics are donating and receiving insulin, often online, due to skyrocketing prices. The American Diabetes Association calls it the “gray market,” where many are turning to seek lifesaving medications and supplies from strangers and friends, rather than official sources.

While state legislators can only do so much — as costs are driven by monopolies, patents and federal issues — Thurston believes they can work to make the market “more competitive” and put pressure on manufacturers to charge reasonable prices.

HB207 also gives pharmacists the ability to dispense up to a 60 day supply on an emergency basis even if the patient’s prescription is for a different brand, expired, or out of refills as well as created four pathways for insurers to comply with a low cost plan option.

Finch said the bill will help alleviate the burden on the family.

For future action on drug costs, Thurston said he hopes to research why prices are lower in Mexico and Canada.

“And also, understanding why drug prices go up so quickly,” Thurston said. “Certainly, over the interim, I think we need to have a lot of conversations about drug costs and drug policy.”

Pharmacy benefit managers, price transparency

“I mean, a lot of Utahns can’t afford their drugs. They just can’t afford them,” said Rep. Paul Ray, R-Clearfield, who’s sponsoring price transparency bill HB272 this session.

“You know, if I didn’t have insurance — I’m on a blood thinner — there’d be probably times through my life that I would’ve had to not take the blood thinner, which could’ve caused me to die. We have people on insulin rationing, taking half doses, trading it amongst each other because they can’t afford it.”

HB272 would require the Utah Insurance Department to annually publish prescription drug information and costs, and to make rules enabling people to compare those costs. The bill passed the Senate on Tuesday with amendments, moving it back to the House for final passage.

HB272l would also require the department to publish the total value of rebates and administrative fees received by a pharmacy benefit manager — who negotiates with manufacturers on behalf of insurers — from a manufacturer.

Ray explained in February that, after two years of research, he came to believe pharmacy benefit managers are behind the increasingly high drug prices.

The bill would also ensure pharmacies get “fair reimbursement” and receive the same treatment as pharmacy benefit managers’ own pharmacies, he said. That will also protect local pharmacies from being pushed out of the market, according to Ray.

“Those two things combined are going to drive your prices down.”

Ray originally filed the bill with the intent of requiring pharmacy benefit managers to pass rebates to consumers — instead of splitting them with insurers — at the point of sale, with insurers still receiving agreed upon sums. That part had to be taken out of the bill because rebates are preempted by the federal government, Ray said. But he said he will work with the Trump administration to ban rebates federally.

“I think this is a bill that he can sign if we can get Congress to get off their lazy (expletive) and do their job,” Ray said.

Most cost concerns fall into brand name and specialty drugs, said Senate Majority Leader Evan Vickers, R-Cedar City, co-sponsor of HB272 and a pharmacist by trade.

Obamacare took incentives out of research in the traditional drug market such as oral medications, he said. The cost of generic drugs, meanwhile, has dropped 39% overall in the last three years at wholesale and pharmacy levels. But at the insurance plan level, it’s gone up, according to Vickers.

“So there’s a disconnect there, something that’s going on between the (pharmacy benefit manager) and the plan,” Vickers said.

HB272 would give the state better access to data to start identifying those drugs that are causing a significant impact on premiums and health care costs.

While Vickers said drug affordability isn’t among the top five issues he hears from his southern Utah constituents, it does “rise to a noticeable level.”

SB138, also sponsored by Vickers, seeks to further regulate pharmacy benefit managers by prohibiting them from charging an insured customer more for using a pharmacy that offers to mail or deliver a prescription drug to an enrollee.

SB138 passed in the Senate but never received a hearing in a House committee.

The bill would also prohibit pharmacy benefit managers from varying the amount they reimburse a pharmacy for a drug on the basis of whether the drug is a 340B drug or whether the pharmacy is a 340B entity. The federal 340B program allows certain providers to obtain discounts on certain drugs from manufacturers.

Pharmacies that sell medications to 340B clinics buy the medications at a significant discount, Vickers said, and then keep that medication separate from that purchased at a regular price. When dispensed, the medication goes through an insurance plan, and the difference between the cost and what the insurance plan pays is recouped by the 340B clinic, which reinvests the money back into its health plan.

Pharmacy benefit managers have indicated they want to “capture” some of that money, Vickers said, and the bill would not allow that.

“That one is protecting the ability of these kinds of clinics ... to still be able to provide medications to patients at a much lower cost, and still keep the benefits from that, and use it to reinvest to provide better health care to their members,” Vickers said.

Prescription recycling program

Meanwhile, SB157 would expand eligibility for the state’s Charitable Prescription Drug Recycling Program and allow people to take certain unused prescription drugs to a physician’s office for donation to a pharmacy. The bill received a favorable recommendation from a Senate committee and awaits a vote in the full Senate.

Already, the law allows those either uninsured or on Medicare or Medicaid to receive donated medication — the bill would increase eligibility to those with private insurance who lack the means to pay for the prescription themselves.

While the program so far hasn’t received wide use, Vickers, SB157 sponsor, said a few pharmacies have recently indicated they would like to participate. The medications would need to be donated in sealed containers.

“It does allow for some medications that are very costly that can be reused with patients that need them, that may not be able to afford them. So it does definitely help drive down the health care costs for certain people in the state,” Vickers said.

The bill was motivated by the needs of cancer patients, he said.