How to Create Meaningful PBM Reform

On May 2, Chairman Bernie Sanders, Ranking Member Bill Cassidy, and the Senate HELP Committee has an opportunity to protect the 160 million Americans who are living with a chronic disease – including me. It begins with breaking down barriers that PBMs put between patients and their medications. It is crucial to the health of nearly half the U.S. population that the bipartisan HELP Copays Act and Safe Step Act are included in the Pharmacy Benefit Manager (PBM) package currently under consideration.

PBMs control the prescription drug benefits process for health plans, including insurer sponsored and commercial plans. Recently, Congress investigated PBMs for artificially inflating drug prices and using inappropriate practices to collect more rebates.

The Safe Step Act and Help Ensure Lower Patient (HELP) Copays Act each provide critical assistance for patients by addressing two insurance practices that make essential prescription drugs unaffordable for 159 million Americans on employer sponsored and commercial plans: step therapy and copay accumulator programs. The patient-centered and bipartisan reforms in these bills are the perfect complement to efforts to reduce costs further upstream in the health care system.

The National Psoriasis Foundation (NPF) represents more than 8 million Americans living with psoriasis and psoriatic disease today. Thanks to modern treatment options and biologic medications, many patients in our community are able manage or avoid the more severe symptoms of this systemic disease that cause pain, bleeding, itching, and cracked, flakey skin. Psoriasis and psoriatic arthritis (PsA) are also associated with several diseases like heart disease, type 2 diabetes, and depression.

After a 12-year journey, my friend and NPF volunteer Tami Seretti was on a treatment that kept the body-wide inflammation of her psoriasis and PsA in control. It came at a cost that put she and her husband at the edge of their budget, but the relief was well worth it for a woman who had experienced complete hair loss and permanent joint damage.

After Tami’s husband started a new job, her new health insurance denied access to her prescribed biologic and instead forced Tami to try medications that were less effective or ineffective – many of which she had failed before – until she had sufficiently failed each of them under the new plan.

In that time, scalp psoriasis took all of Tami’s hair again. Joints in her thumbs were so damaged from the unmanaged PsA that they required replacement. A simple, artificial barrier in her health plan upended her journey and life. If we had the Safe Step Act at this time, Tami could have been spared all this.

Still, she persisted. After failing countless prior medications, Tami eventually found an effective treatment and once again gained control of her symptoms.. That’s when a surprise pharmacy bill sent her on another devastating journey.

The treatments that keep this devious disease manageable are expensive, and for decades the cost of care has fallen increasingly and disproportionately on patients. So much so, that pharmaceutical manufacturers and other third parties have stepped in to help people afford their care. Tami, and people like her, used copay assistance to help cover the cost of the prescription. By the time the copay assistance ran out, she would typically have met her deductible for the year.

This worked out well enough, until insurers found a way to double dip, by not counting copay assistance toward the deductible and out-of-pocket maximum.

Tami’s medication costs went from $35 a month to a financially overwhelming $1,500 a month. The bipartisan HELP Copays Act addresses this by requiring insurers to count copay assistance toward patient cost-sharing requirements.

Tami is a kind, strong woman who advocates for people with chronic diseases. Unfortunately, her story is not an isolated case, but demonstrates how challenging it can be for patients to navigate a system controlled by PBMs.  According to research from the Arthritis Foundation, of people on an employer sponsored health plan who are on biologic treatment, 90% use copay assistance today.

Step therapy is unfortunately also a common experience for the people in my community; over 90% of step therapy protocols for psoriasis are stricter than clinical guidelines.

Biologic treatments are incredibly important, highly effective, and extremely expensive. Thanks to the work of scientists, researchers, and manufacturers, innovative medicines offer people with chronic diseases like Crohn’s disease, psoriasis, arthritis, and even cancer a chance to live with greatly reduced disease impacts.

Now we are closer than ever to the cures, remissions, and disease-management therapies that we have strived toward for decades, but it is all for naught if anyone who is prescribed a treatment is denied access or cannot afford it.

The Safe Step Act and HELP Copays Act each protect critical treatment access for millions of Americans. PBM reform without these patient-centered solutions is incomplete and could even allow practices to continue that harm patients like Tami. The Senate must act now to pass these reforms and create meaningful change for the people who need it most.

Leah M. Howard, J.D., is the president & CEO of the National Psoriasis Foundation.