“In November 2016, we noticed some benefit changes to one plan around co-pay assistance and it not accumulating toward a patient’s out-of-pocket deductible,” Kollet Koulianos, vice president of payer relations at the National Hemophilia Foundation, said in an interview. Accumulator programs shift costs to patients, and critics say they amount to double-dipping because the plan is getting both the value of the co-pay and the patient deductible. One such restriction that has impacted Loving’s family is a co-pay accumulator, in which any co-pay assistance would not count, or accumulate, toward the family’s deductible. Over the past several years, PBMs have implemented restrictions that put more of the costs of specialty medications on patients such as Loving and her family. “We were not educated to know and listen to some of the cues, and we did not treat my son, because treating him would be costly.” Patients Face Access Challenges Her choice: She didn’t immediately take her 9-year-old son, Kason, who also has von Willebrand disease, to the doctor when he complained about shoulder pain after he had fallen on the playground. “Unfortunately, in the last 6 months, I was hit with the fact that I had made a bad mom choice.” “I can count numerous times where we’ve had to pick between getting groceries for the week or doing a treatment,” Loving said. It should be simple.”Īfter these changes, the most recent co-pay for Loving’s daughter Katy’s medication was $5000 for 4 weeks of medicine. I didn’t still don’t feel I understand any of this mess. “Originally, we thought it would make more sense, but this may have been an uneducated decision. “We needed to meet the deductible to assist with all the other appointments and meds we utilize as a family,” Loving said. 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).
Loving and her family decided not to use the co-pay assistance because it did not count toward their deductible. (The family’s specialty pharmacy is Accredo.) “When that ran out, our portion was about $300 a week,” she said.īut 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.
In previous years, Loving explained, they would use the co-pay card when it counted toward their out-of-pocket deductible. It’s expensive, but CSL Behring, the manufacturer of Humate-P, offers co-pay assistance of $10,000 a year. Two of Loving’s children take Humate-P, a von Willebrand factor/factor VIII replacement therapy. 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. Brooke Loving doesn’t take the medication that would keep her von Willebrand disease under control.
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