A few months ago, I read the horrifying story in the New York Times written by a physician, Aaron Carroll entitled “Trapped in the System: A Sick Doctor’s Story”, about how difficult it was for him to get his prescription filled. At the time I joked with my husband that the story didn’t sound that bad to me. My daughter has been taking “specialty drugs” (expensive drugs that are used to treat complicated medical problems like cancer, rheumatoid arthritis and multiple sclerosis) for several years and we have had many frustrating experiences, especially trying to figure out the medical bills. Her recent switch to a new specialty drug has caused the biggest problems yet.
Most insurance plans use other companies, called pharmacy benefit managers or PBMs, to manage prescription drugs. And PBMs use companies called “specialty pharmacies” (often owned by them) to manage specialty drugs, which are a key factor in driving up healthcare costs.
My daughter is on our family insurance plan but lives in an apartment an hour away so I thought it best for her to manage the delivery of the new drug. The medication requires refrigeration and is shipped in a styrofoam cooler with ice packs each month. FedEx won’t leave the medication outside an apartment building (fearing it will get stolen and they will be held responsible), but my daughter’s work schedule is completely unpredictable so she is unable to be home to receive the deliveries. Each shipment so far has required intervention by me to either figure out where the undelivered drug ended up or to have it delivered to my house (so I could deliver it to my daughter). One shipment even required my mother to retrieve the package outside my house (and put it in my refrigerator) while I was out of town.
In the past, my daughter has received 3-month supplies of medications, so I requested that the specialty pharmacy do the same for the new drug. But when they went to process the 3-month prescription from the doctor it was declined. The one-month limit is likely to avoid wasting of medication (and perhaps to be able to charge monthly co-pays and fees). The specialty pharmacy referred me to the PBM who referred me to the insurance company who referred me back to the specialty pharmacy.
Because of my work, I know my way around the healthcare system but I was completely baffled. After many hours of phone calls I had no idea who was making the rules and who I needed to speak with to get a 3-month supply. The insurance company told me they were not responsible but that I could submit an appeal by fax (!!!) and would receive a written response within 30 days.
In a fit of frustration I tweeted:
The combination of @xxx [insurance company] plus @yyy [specialty pharmacy] plus @zzz [PBM] is a #patient experience nightmare. #FAIL
I got an almost immediate response from the PBM offering to help. After several more phone calls and lots more frustration, I think I have arranged to have 3-month supplies of the drug delivered to my house (so that I can drive them to my daughter 4 times a year instead of 12).
What would have happened if I were not so persistent, or did not think to use social media or if I lived in another state and could not drive the medication to my daughter? And I am not the patient – the stress of trying to arrange specialty drugs can’t possibly be good for the underlying diseases these drugs are treating.
Our health insurance system is complicated, uncoordinated and fragmented; insurance companies, PBMs and specialty pharmacies focus on making money and lowering their own costs.
And no one is thinking about the patient.