By Chris Ingram
|Chris Ingram and family|
There was a time when we could choose a specialty pharmacy that not only could obtain the factor brand we needed, but understood hemophilia, knew us personally, and gave us the best customer service we had ever received. How did they understand hemophilia and its challenges so well? Maybe someone at that pharmacy or their loved one had hemophilia. We were always connected by the common diagnosis. To me, it seems like those times were just a fairytale.
Now specialty pharmacies are being chosen more often by the insurance company, run by healthcare professionals who claim to understand hemophilia. I am here to tell my story about how much of a nightmare it can be to have a specialty pharmacy that does not “get” hemophilia and our needs. I hope in the future no one ever goes through what I did just to get factor.
The hemophilia specialty pharmacy I had been using for two years, operated by people with hemophilia, closed. I decided to try another one (I’ll call it “Hemophilia Pharmacy”), also operated by people with hemophilia. I found out that they were not in network and my insurance company (I’ll call it “Big Payer”) wanted me to use their own specialty pharmacy (“Payer SP”). Hemophilia Pharmacy started getting contracted with Big Payer, which is a lengthy process. In the meantime, I still needed a specialty pharmacy.
I called “Salud SP” here in Arizona. They started the process to get the precertification so they could service me. They were not in network. So that is now two pharmacies I have looked into with no luck. On to the next pharmacy.
I then decided to contact “National SP,” which knows hemophilia well and is contracted with my plan. By this time I was running really low on factor; I had only three doses left and just had oral surgery two weeks prior. National SP could not get my factor brand! I guessed it was due to my using a new factor brand that was only recently made available. National SP told me I had better use “Pet SP,” the payer’s specialty pharmacy.
So that was the third specialty pharmacy that I had struck out on!
Every time I tried to use a specialty pharmacy that knew hemophilia, I was told that Big Payer wanted me to use Pet SP. So I called Pet SP and start the enrollment process with them. I also told them that I need the factor to be processed under the medical benefit not the pharmacy. They told me that they bill under the pharmacy, unless it does not get approved (then they will bill under medical). Under pharmacy, I would be responsible for 50% of my factor costs! My out of pocket cost would be $45,000 every month. I did get transferred to a representative who listened to me, and said if I ask to process under medical, then they will do that first. Then he told me something unbelievable. Pet SP cannot get my factor brand!
I must use Pet SP but it cannot get my factor! So Pet SP told me to use their sister specialty pharmacy, “Sister SP.” I called Sister SP, related my story, and asked about my factor brand. They told me I was given wrong information. They ended up calling Pet SP, and asking them why I was told this information when it was false.
At this point I was furious. I called up Big Payer; I told them I want answers. Why is it no specialty pharmacy can obtain my medicine? They said they would look into it, an answer I thought was unacceptable. I firmly told them they have until tomorrow to give me an answer or I will be calling the state insurance commissioner to step in and I will also be calling a lawyer.
When I hung up I began researching different lawyers and trying to get a consult to see if I have a case. I had been working with Big Payer for three weeks with no solution; I felt like I was being neglected. I did not hear anything from Big Payer the next day. The following day I took the day off of work to make more calls. The state insurance commissioner called back to learn more, and two different lawyers called who were interested in the case. The supervisor for Big Payer called, and said she was going to make sure this got taken care of. By now I was out of factor.
Several hours passed by and I finally got a call from the Big Payer supervisor. She found a specialty pharmacy in California that could get my factor to me the next day.
I told her this was unacceptable; I needed factor today-- no exceptions. I had told them that Salud SP was in Arizona and could get me my factor brand within hours of getting an approval. The situation escalated to involve Big Payer’s medical director, who approved a one-time, 30 day authorization for Salud SP. I had my factor two hours later!
This is not the first time I’ve had an issue with my insurance company, but this is the first time it involved my factor brand accessibility. Is choice of specialty pharmacy—and maybe factor brand—just a fairytale now?
Chris Ingram is a certified professional coder (CPC) who
currently works at UnisLink. He’s worked as a medical biller
and coder for the following medical specialties: anesthesiology,
urgent care, pain management, gastroenterology, internal
medicine, pediatrics, ob/gyn, orthopedics, and trauma surgeons.
He has also taught medical billing and coding at two colleges.
In his spare time, Chris loves attending car shows and doing
car detailing for family and friends. Chris has severe hemophilia
A and lives in Arizona. Contact Chris at email@example.com.