College students who came of age during the COVID-19 pandemic and the Supreme Court’s decision to overturn Roe v. Wade acknowledge two very important things: first, access to high-quality health care is not something to be taken for granted, and second, geography matters. Unfortunately, these are lessons I learned from early childhood, when I developed juvenile arthritis after contracting a seemingly harmless virus, parvo, which triggers an immune reaction that triggers the condition in less than 1 percent of patients. As a result, while most 20-somethings are concerned with access to reproductive services and medications, I am also concerned with the unintended consequences of policy and politics impacting our health care system and the role pharmaceutical benefit managers play in exacerbating those consequences. Prescription benefit managers determine which drugs will be covered by health insurance plans and how much patients will pay for their prescription drugs.
For example, hydroxychloroquine is a drug I’ve taken for years, but after people started using it as an off-label, misguided treatment for COVID-19, supplies ran out and the out-of-pocket cost increased from $45 at $600 for a 90 day supply. Or methotrexate, an inexpensive, decades-old chemotherapy treatment often used in combination with other drugs to control arthritis symptoms; it is also prescribed to terminate pregnancies. After Roe was overturned, access was restricted in some states with restrictive abortion policies.
In a global health center like Boston you would think that patients with severe but treatable chronic or acute health problems 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 outsourcing critical services to them, you’d be wrong. The profit model of the PBM industry and is an industry incentivizes the delay and denial of prescription coverage without accountability or recourse for patients.
For months this winter, a PBM failed to fill my arthritis prescription with one excuse after another. Finally, after hours on the phone, needless pain, and dangerous interruptions in my care, it was discovered that there were computer system errors with the Illinois Blue Cross Blue Shield interface with the PBM causing the delays. Yet PBM was under no obligation under Massachusetts law to tell me or Blue Cross Blue Shield of Massachusetts, even though it was through them that my insurance premiums were paid. Worse, I had no other way to secure my meds.
There is no pharmacy or hospital where I can go and pay out of pocket for these drugs, even if I wanted to. And there is no one to call for help. In the last couple of weeks alone, in trying to get my prescriptions, I’ve spent hours on the phone with my doctor’s office and hospitals benefits department, my main insurance company, and the PBM my insurance company requires me to use to prescription coverage. I have also talked to the specialty pharmacy that the PBM requires me to use to fill my medications and the drug copay assistance program (run by the company that makes the drug).
No one holds PBMs accountable for actually ensuring that patients get the medications they have been prescribed and need to lead a healthy life or, in my case, just get out of bed in the morning.
The greatest 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 walk 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 devoted and politically connected parent, former acting governor Jane Swift, who has been managing my care with me for a decade. What about the vast majority of Massachusetts and United States residents who have none of these privileges, much less all of them?
Our leaders have done a good job protecting women’s right to choose in Massachusetts. But in a few years, Generation Z will start thinking more about health care as they will have families of their own, care for aging 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 under consideration by the legislator, including H1215, An Act Relative to Pharmacy Benefit Managers, introduced by the Rep. John J. Lawn, Jr., This legislation would require PBMs to be licensed by the state, among other reforms, and would restore some power to consumers who rely on life-saving drugs. It’s time to make access to critical health services a reality for my generation. We are paying attention.
Lauren Hunt is a 2023 graduate of Northwestern University.
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