Mark Armstrong, who has battled the rare blood cancer polycythemia vera for years, experienced dramatic improvement after his doctor prescribed Jakafi, a newer but expensive treatment. Armstrong said by the end of the month he was feeling great, with reduced swelling in his legs, bearable headaches, and improved skin condition. His hematologist was amazed by the results. Armstrong's previous daily oral chemotherapy drug had become very toxic, causing severe side effects including major headaches, fatigue, skin ulcers, and splenic attacks.
Armstrong cannot keep using Jakafi because of a co-pay accumulator policy from his insurer, Oscar Health. Drug companies often help patients pay for expensive medications, but under a co-pay accumulator policy, insurers do not count that manufacturer assistance toward a patient's deductible. In Armstrong's case, the drug maker paid nearly $9,000 for his first prescription. When he tried to refill it, Oscar Health said he still owed his $7,700 deductible. Armstrong said he did not understand how the insurer could accept $8,600 from a manufacturer and still tell him he owed $7,700. The Armstrongs explained that if the money had come from a family member instead of the drug manufacturer, there would have been no problem.
Co-pay accumulators are so controversial that half of states in the United States have already banned them, according to a recent investigation by KFF Health News. Florida is not one of them, despite several legislative attempts. Dr. Jay Wolfson, a health policy expert at USF Health, said the insurance practice raises serious fairness concerns and called it a double dip by insurance companies. Pharmacy benefit managers and insurance companies argue a ban could drive up patient costs. A federal rule is supposed to protect patients when there is no generic equivalent for a drug, but a lack of federal guidance and enforcement means insurers are largely ignoring it. Jakafi does not have a generic equivalent.
After Investigative Reporter Katie LaGrone contacted Oscar Health, Mark Armstrong received his new medication, though how, why, and who is paying for it remains unclear. A spokesperson for Oscar Health provided a statement but its contents were not detailed. Armstrong said the situation almost feels like fraud. His wife Michele said watching her husband fight for medication that was clearly working has been horrible and questioned how insurance company executives sleep at night.