College students who have come of age during the COVID-19 pandemic and the Supreme Court decision to overturn Roe v. Wade recognize two very big things: first, that access to high-quality health care is not something to take for granted, and second, geography matters. Unfortunately, these are lessons I have understood since early childhood when I developed juvenile arthritis after catching a seemingly innocuous virus, parvo, which triggers an immune reaction that unleashes the condition in less than 1 percent of patients. As a result, while most 20-somethings worry about access to reproductive services and medicines, I also deal with the unintended consequences of policy and politics crashing into our health care system — and the role pharmacy benefit managers play in exacerbating those consequences. Prescription benefit managers determine which medicines will be covered by health insurance plans and how much patients will pay for their prescription drugs.
For instance, hydroxychloroquine is a medication that I’ve taken for years, but after people began to use it as an off-label, misguided treatment for COVID-19, supplies ran short and the out-of-pocket cost increased from $45 to $600 for a 90-day supply. Or methotrexate, an inexpensive, decades-old chemotherapy treatment often used in combination with other medications to control arthritis symptoms; it is also prescribed to terminate pregnancies. After Roe was overturned, access was limited in certain states with restrictive abortion policies.
You would think in a global health care center like Boston that patients with serious but treatable chronic or acute health issues would have easy access to such medications. But thanks to bureaucratic behemoths like Express Scripts, Accredo, and CVS Specialty, and the cost-conscious employers and insurers that outsource important services to them, you’d be wrong. The profit model of the PBM industry — and it is an industry — incentivizes the delay and denial of prescription coverage with no accountability to or recourse for patients.
For months this winter, a PBM failed to fill my arthritis prescription with one excuse after another. Ultimately, after hours on the phone, unnecessary pain, and dangerous disruptions in my care, it was discovered that there were computer system errors with Blue Cross Blue Shield of Illinois’s interface with the PBM causing the delays. Yet the PBM had no obligation under Massachusetts law to tell me or Blue Cross Blue Shield of Massachusetts this even though that was who my insurance premiums were paid through. Even worse, I had no other way to secure my medication.
There is no pharmacy or hospital that I can go to and pay out of pocket for these medications, even if I wanted to. And there is no one to call to help. In the past two weeks alone, in an attempt to secure my prescriptions, I’ve spent hours on the phone with my doctor’s office and their hospital’s benefits department, my primary insurance company, and the PBM my insurance company requires I use for prescription coverage. I’ve also spoken with the specialty pharmacy the PBM requires me to use to fill my medication and the medication’s copay assistance program (run by the company that manufactures the medication).
No one is holding PBMs accountable to actually ensure patients receive the medications they’re prescribed and need to lead healthy lives — or in my case, simply get out of bed in the morning.
The biggest irony of all? I am one of the lucky ones. I have one of the best rheumatologists in the country and the ability to pay for an expensive insurance plan. I have a job where I can step away from my desk to spend an hour on the phone with call-center employees who work for insurance companies and PBMs. I have a dedicated and politically connected parent — former acting governor Jane Swift — who has been managing my care alongside me for a decade. What about the vast majority of Massachusetts and US residents who don’t have any of these privileges, much less all of them?
Our leaders have done a good job protecting a woman’s right to choose in Massachusetts. But in a few short years, Gen Z will begin thinking more about health care as they have families of their own, care for elderly parents, and develop their own health needs. As Massachusetts policymakers consider the future of health care access in the Commonwealth, there are several PBM-related bills before the legislature, including H1215, An Act Relative to Pharmacy Benefit Managers, filed by Rep. John J. Lawn, Jr., This legislation would mandate that PBMs be licensed by the state, among other reforms, and restore some power to consumers who rely on life-saving medications. It’s time to make access to critical health care services a reality for my generation. We are paying attention.
Lauren Hunt is a 2023 graduate of Northwestern University.