By Sarah W.
Sarah is a member of MPN Advocacy & Education International’s Patient Advisory Council
I know there are good people who work at insurance companies, however, some are the bane of my existence. Every month I gear up for the fight to get my son, Jedi, his medicine. Jedi has an MPN. My hope is that my journey can be used to make this process easier and better for other patients and their families.
Hydroxyurea was the initial drug prescribed for my son. It wasn’t a difficult drug to get filled, even though it was a little overwhelming walking my son through the adult oncology unit at MD Anderson Cancer Center, to the “specialty pharmacy.” It was frightening for him to see adults that look so sickly skinny and with their bald heads from their treatments. However, the real frustration began when he was put on Pegasys. MD Anderson tried to call numerous pharmacies to his prescription filled, but they were unable to find a pharmacy that had it in stock. So we left the hospital with a handwritten script in search of the drug.
Read tips from Speciality Pharmacist/MPN Patient Jennifer Powers w/ links to treatment assistance programs
At that time, we were insured by United Health Care. This was my first introduction to a specialty drug. For background purposes, specialty drugs are a recent designation of pharmaceuticals that are classified as high-cost, high complexity and/or high touch, such as injectables. A chemotherapy that is administered orally, like Hydroxyurea, is covered as part of a normal prescription. A chemotherapy that is administered as a subcutaneous (jiggly fat) shot, like Pegasys, is not. In other words, it comes out of your deductible. For us, that means we owed approximately $4,000 for the first month of Pegasys. We had to prove to the insurance company that Pegasys had been approved for polycythemia vera. This was done by producing a memo my husband found on the internet from United Health Care specifically stating Pegasys was approved for polycythemia vera.
Then, our insurance was switched to Blue Cross Blue Shield of Texas (BCBSTX). (I will skip the conversation about trying to get our member number early so I could start the pre-approval process. I had been told in a Facebook group that it took about six weeks to approve Pegasys with BCBS. This was cause for concern because we could only get four weeks of medicine at a time.)
I started the pre-approval process with BCBS after we received a member ID number the first week of January. As expected, Pegasys was initially declined. In the state of Texas I should be able to submit an emergency appeal and get a response in three days, but I had to get the appeal submitted first. It is very difficult to get the appeal started. Not to mention that BCBSTX outsources the pharmaceuticals to Prime.
After a few weeks of deep frustration and the looming possibility we could run out of his medication, I finally posted the following on Blue Cross Blue Shield of Texas Facebook page:
January 15, 2019. Your appeals process is TERRIBLE. I have spent HOURS trying to figure this out. I have a 10 year old with CANCER. His medicine is out next week. I have to get it from a specialty pharmacy. His doctor called BCBS yesterday (a number I got after spending TWO HOURS on the phone last Friday) and was told that he has to wait 7-10 business days to start the process. Today I received a NEW peer-to-peer phone number. Does this start the process? No, it sets up an appointment for our doctor to talk to your doctors. Just to give you an idea. This medicine controls platelets. If his platelets go up he could have a heart attack, stroke, embolism for example. You can see my concern. My next steps are to ask my doctor to call AGAIN to START the appeals process – you know the one he tried to start yesterday? I will also have on my TO DO list to file a complaint with Texas Department of Insurance, contact my state Senator and Representative. Thank you for making this such a HARD process. Oh, by the way, the National Comprehensive Cancer Network, other BCBS insurance (different states), United Healthcare ALL have approved this medicine for his diagnosis
I received a phone call from BCBSTX within 24 hours of posting this. I was told I had made it to the “special escalation” team because I posted on social media. On one hand, I am grateful he was approved. On the other hand, I am sad that this is what it took. I think it also helped that I had gathered the information to make it easy for them to approve. I had whitepapers, Jedi’s medical records and the details from the National Comprehensive Cancer Network. (Click here to view).
I wish I could say this was the end of the drama. But this is a story for another day. Just writing this was overwhelming. I can’t imagine what people who are sick go through. I am the caregiver, not the patient. I do not have chemo brain and I am exhausted by the process and the stress and anxiety to ensure my child receives his treatment. I hope this information will help other families move through the process a little more smoothly and I will continue to write about the trial and tribulations I experience on my website.
View Videos from the MPN Pediatric & Young Adult Program in 2018
I used hydroxyurea to treat Polycythemia Vera several years ago since that was the only treatment available. I developed an ulcer on my big toe and did not know that this was a side effect of the drug. The ulcer did not heal and eventually became infective. I was sent to Georgetown Medical for treatment and eventually lost the toe. Luckily I was introduced to a great doctor there who was testing Pegasys for the treatment of this disease. I have had a lot of luck with the medicine (which the manufacturer use to cover until testing and approval of the drug). I have done very well on this medicine however I can only take the lowest does, 45mcg, per week. When they try to increase the drug I would get so anemic I had to have blood infusions so be very careful.