Patients Often Lose in the Battle Between Pharmaceutical Companies and PBMs

Brooke Loving doesn’t take the medication that would keep her von Willebrand disease under control. Because of the cost, she has made the decision to focus on treating her children instead: Loving and 3 of her 8 children have been diagnosed with von Willebrand disease, a bleeding disorder that is characterized by low levels of von Willebrand factor, a protein that helps blood clot.

Two of Loving’s children take Humate-P, a von Willebrand factor/factor VIII replacement therapy. It’s expensive, but CSL Behring, the manufacturer of Humate-P, offers co-pay assistance of $10,000 a year. In previous years, Loving explained, they would use the co-pay card when it counted toward their out-of-pocket deductible. “When that ran out, our portion was about $300 a week,” she said.

But Blue Cross Blue Shield of Alabama, Loving’s insurance company, and the pharmacy benefit manager (PBM) Express Scripts changed their policy and have implemented a program in which the co-pay assistance doesn’t count toward the family’s deductible. (The family’s specialty pharmacy is Accredo.)

Loving and her family decided not to use the co-pay assistance because it did not count toward their deductible. The family has a high-deductible plan through the employer of Loving’s husband: $9100 for an individual and $18,200 for the family, the out-of-pocket maximums set by the Affordable Care Act (ACA).1

“We needed to meet the deductible to assist with all the other appointments and meds we utilize as a family,” Loving said. “Originally, we thought it would make more sense, but this may have been an uneducated decision. I didn’t [and] still don’t feel I understand any of this mess. It should be simple.”

After these changes, the most recent co-pay for Loving’s daughter Katy’s medication was $5000 for 4 weeks of medicine. “I can count numerous times where we’ve had to pick between getting groceries for the week or doing a treatment,” Loving said. “Unfortunately, in the last 6 months, I was hit with the fact that I had made a bad mom choice.”

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