For many survivors and patients, a cancer diagnosis is often a matter of choosing between bankruptcy or death. That’s what I was told by a survivor last spring. It has haunted me ever since. This legislative session, state lawmakers can ease that burden on Utahns by supporting HB52, sponsored by Utah House Rep. Candice B. Pierucci.
If enacted, the legislation would ensure prescription drug copay assistance is counted toward patients’ out-of-pocket cost obligations. In return, biomedical research could be more impactful and critical medications could become more accessible to the state’s most vulnerable patients.
As an Oncological Sciences Ph.D. candidate at the University of Utah, cancer research is essentially my full-time job. I’m pursuing high-level training in biomedical research because I want to utilize my education to lead impactful work and help people fighting diseases. The research I do is critical in the development of novel specialized drugs and clinical studies. Significant effort, time and money are needed for the creation of these types of drugs for patients with chronic disease — especially those with cancer diagnoses.
The costs of these new specialized drugs have become unfathomably high and, thus, many Americans rely on copay assistance programs to help pay for these medications. Typically, this assistance comes from the drug manufacturer, which patients can put toward the cost of their treatments to make them more affordable. Yet, unfortunately, current state law in Utah allows health insurers to block copay assistance from benefitting patients in the intended way. Through these mechanisms, copay assistance is not counted toward the patient’s deductible or out-of-pocket maximum. As a result, when the assistance runs out, many patients are no longer able to afford their medication. This sometimes makes the individual, who already must deal with the anxiety of managing a troublesome disease like cancer, decide between “bankruptcy or death.”
These mechanisms used by insurance companies to pocket a patient’s copay assistance versus allowing them to put it toward their annual out-of-pocket costs are called “copay accumulator adjustment” programs. Realizing that many health insurers are doing this, several states have already implemented countermeasures to protect patients. As of June 2024, 21 states have implemented policies that prohibit copay accumulator adjustment programs. Several more states, including Utah, are considering copay accumulator adjustment legislation this year. Lawmakers in our state have failed to pass a similar bill in previous legislative sessions.
I’m concerned with our legislators’ lack of action on prohibiting copay accumulator adjustment programs. While I acknowledge the accessibility of therapeutic drugs is multifaceted and a complex issue, prohibiting copay accumulator adjustment programs is a layup for Utah’s legislature. With all the effort, time and money the biomedical researcher community puts into their work — what is the point if, at the end of the day, the new therapies established from this industrious work are inaccessible to the individuals who need them the most?
Despite medicine being available to help treat their disease, 30% of adults noted in a study by Kaiser report not taking their prescriptions due to high costs. Even with a diagnosis of cancer, a disease that must be aggressively treated for prolonged survival, a fifth of patients still report skipping or delaying treatments due to drug costs. These numbers are even higher among Black, Hispanic, Asian and low-income patients. For reasons like these, it’s no surprise that affordability is the leading policy priority for volunteer advocates with the American Cancer Society Cancer Action Network (ACS CAN). While enacting HB52 is not an all-encompassing resolution to chronic disease treatment affordability, it would be a significant step in the right direction and display the Legislature’s commitment to the health and wellbeing of Utahns.
I urge lawmakers to join the emerging community of states that are prohibiting copay accumulator adjustment programs. I’ll once again be joining cancer survivors, patients and caregivers at ACS CAN’s Cancer Action Day at the state Capitol on Feb. 11. I look forward to meeting with lawmakers and expressing my support for HB52. The benefit of passing this legislation is twofold; it will make the efforts of biomedical research more impactful and improve the health outcomes of the most vulnerable patients in our state.