Unpopular Opinion: Part 2

If you missed the first part of this blog on my younger son’s diagnosis experience with Ulcerative Colitis, you could check it out here.

When we scheduled my son’s day of procedures (he had an endoscopy and a colonoscopy in one day) we also were proactive and scheduled a follow-up visit two weeks later. The procedure day went smoothly, and we were left with information that we would likely be looking at Crohn’s, but possibly Ulcerative Colitis. Even though those both are lifelong struggles, it was such a relief to hear it wasn’t colon cancer. As I believe I shared in the first post, around this same time, my husband's sister was going through treatment for stage 3 colon cancer.

So, within a day or two of the procedure, we start getting calls from the hospital to reschedule the follow-up appointment. This was only the beginning of our chaos that would follow. Within one week of the procedure, we rescheduled the appointment a few times. First the reschedule was a few days past the original follow up with the doctor he saw before the procedures, then the appointment was rescheduled for two weeks past the original follow up date with yet a different doctor. The third call came in within a week of his procedure to try to reschedule for a different provider. I shared that I was frustrated with the continuous changes of both doctors and dates. They apologized and said this time would be with the doctor who performed the procedures at the hospital and she would become his primary GI doctor. We found out that she had times available on our original appointment date which was two weeks after the procedure, or one week after this phone call, which was a blessing.

The appointment came without a hitch and was a smooth easy day for us. The doctor presented us with biopsy results and said she was confident now it was Ulcerative Colitis, which made sense to us since my husband also has UC. Our son was presented with two treatment options - an infusion every 8 weeks at a hospital which would last approximately 3-4 hours each visit or an injection pen-based medicine he could take at home every other week. After thinking about the options, our son decided for the at home injections. He also received a prescription for prednisone and an antacid to take for 6 weeks as a tapering dose to serve as a bridge to get the biologic medicine in his system and working. The doctor said she had predicted his decision would be for the at home pens, so she had already started the prescription process (which could have easily been cancelled if our son had chosen the other medicine) because it could take a while to get the medicine. What we didn’t know was how much of a fight we were about to endure.

The hospital followed our insurance instructions and submitted the request for the medicine to the preferred provider, CVS Specialty Pharmacy. CVS contacted me with prescription information, delivery date, and we all thought we were set. Then we get a cancellation notice of our prescription and three more prescription requests to the same pharmacy. I contact the hospital and the nurse said they were figuring out dosing info as he was close to the weight border between two doses. We get another cancellation notice and are asked by message on my cell phone by our insurance to call them back. When we call, they say they need to speak with the doctor and cannot talk to me. I asked why I was called and not the hospital. The insurance representative told me their procedure was to call the patient, and they could only call the hospital if we gave them permission (which sounded strange to me.) Obviously, I gave the pharmacy permission to call the hospital. Over the next week, I continue to receive calls from insurance to call them back, and am always told I can’t answer their questions, that they need to talk to the hospital. Our nurse at the hospital says he has been answering all questions, but that he has not been contacted since the initial prescription that was cancelled. After about a week, the hospital gets a denial from CVS that says our insurance will not cover the medication through them. The nurse at the hospital tells us that he cannot get an answer as to which pharmacy our plan will allow, and he asks if we have that information. I call our insurance and am told “any pharmacy will work.” I hear this explanation no fewer than five times from various representatives at our insurance over the next few weeks. As I’m sure you can guess from the length of space remaining in this post, that was not the truth.

Then we start receiving calls on my husband’s cell phone from another pharmacy, Accredo, telling us they have our prescription information and need to talk to the hospital to confirm dosage, etc. We are told the hospital is not responsive and that we should contact our doctor to ask them to follow up. So, we message our nurse through the provider portal, and he states he has not had any communication with that pharmacy, nor has he had any requests for information. He says he is working with our insurance's prescription provider (Express Scripts) to try to find out who will be allowed to fill the medication. Accredo begins to call daily to ask us to get the hospital to talk to them. I finally hear my husband on the phone with them, and I ask how they got our information. We were told by the Accredo representative, “we can see the prescription is with CVS Specialty Pharmacy and we want you to choose us.” I ask if they work through our insurance, and the only answers I get begin with “if you choose us.” There is never an answer on if they work with Express Scripts following those words, and I ask for a yes or no response. I am then told I do not understand what she is trying to do or trying to tell me. I end the call and reach out to our hospital nurse. He says he has still not heard from Accredo and has been trying to find alternate sources from the medicine for us - even the hospital’s own specialty pharmacy. Insurance has denied that attempt as well, so I call insurance again and am told “any pharmacy will work” so I ask for a specific pharmacy name and tell them the denials we have been through so far. The agent doubles down on "any pharmacy will work."

We are now about 3 weeks into this process, and my husband and/or I are on the phone up to all 7 days a week (yes, some Sundays too) with the hospital, insurance, and/or pharmacies. I start to tell people on the phone “please just tell me which pharmacy will be approved, I don’t care if Charles Manson himself brings the medicine to my house at this point, I just want the medicine for my son.” I am hoping my poor attempt at humor will get someone to just answer the question. It doesn't seem like it should be that hard. It is clear at this point that it is not true that any pharmacy will work and for some reason, no one will give any of us straight answers. I decide to reach out to our relatives in Mexico to see if the medicine is available there and to also contact my friend living in a different state whose father worked in a pharmacy to see if he could find out who we could get the medicine from via his contacts. He and a current pharmacist at his preferred pharmacy call to try to get answers for us, to no avail. For some reason no one with our insurance nor our pharmacy provider can answer who is capable of filling our prescription. They continue to make calls, and our hospital finally hears from our insurance that Walgreens Specialty Pharmacy can fill our prescription, but I have to call a certain number first to register for a savings plan.

I call the number and am able to register for the savings program, but I’m asked which pharmacy and which prescription to use. I ask what he means and he says he sees an option with Accredo for Medicine A trying to fill our prescription and an option with Walgreens pharmacy for Medicine B in another state. I tell him about my issues with the process so far, and he calls Express Scripts to get a representative on the line to help figure it out. They confirm that Accredo is a preferred partner, the choice we should go to, and that prescription should work and Medicine A should also be approved. He also gets verification from Accredo while on the call. We’re all enrolled in the savings plan, and I profusely thank him for helping us out, and send all of the updated info to our hospital. Oh, if this were the end of the story. But NO! We can’t be that lucky.

We then get a call from Accredo after discussions with the hospital, to tell us that Accredo does not have the ability fill the prescription requested for my son. - YES, you read that correctly. This company that has been calling us non-stop to ask us to "choose them" cannot. even. fill. the. prescription! - So, back we go to discussions with the hospital staff. The nurse has finally gotten word from insurance to have me call the savings plan again and give them direct instruction to change my enrollment to Medicine B (which is actually like the 5th or 6th attempt at a different biosimilar to the name brand medicine) and to tell them it has to be through Walgreens Specialty Pharmacy regardless of Accredo continuously pushing to get my prescription. We go that route and I am happy to say that 30 days after this drama all started, I hear from a Walgreens Specialty Pharmacy in my state to try to get the medication ordered for my son. Only… the savings plan I was supposedly registered for didn’t show information. I again call the savings plan number and ask for help. They assure me that I should be able to immediately use the plan and it is active. Back to a phone call with Walgreens and no, the savings plan does not show up in their system, and the pharmacist offers to take some time to look for a different savings option. She finally figures out a way to get the medicine for us. When I get a call back later, she apologizes that the medicine will have to be ordered, so it will take a few days to get to us but gives me a date that I should have the medicine by. She also goes over care instructions and administration information, and I finally start to see a glimmer of hope, but I’m hesitant to really feel like this horrible journey is past us until we have medicine in hand. Thankfully, I can report we did get the medicine for our son (just before his 6 weeks of prednisone ran out) on that specified day and we have been set ever since. Woohoo!!!

Now, if you have read any of my blogs on my own personal health journey, you know I have a lot going on with my own health. About halfway through this fight for my son’s medicine happened to line up with a rough spot in scheduling at my part time lifeguarding job, where I had several 7-hour shifts in a short amount of time and sometimes had no rotating guard, which meant 7-hour days with no bathroom or food breaks at times. Thankfully some of the days had breaks with no one in the pool, so I would lock up and take a break, or one of our directors would be there and allow us one or two breaks in the shift, but it was not consistent. The combination of it all led my body to say enough is enough and I had a hard stop anxiety driven shut down. I lost 10 pounds in a matter of days thanks to extreme nausea (not even small sips of water want to stay down) and could only get on the path of recovery when a severe pain near my appendix appeared and we went to the emergency room to get me checked. They insisted on giving me fluids and extra anxiety and nausea medicine in addition to doing the torso scans, which helped me finally start to recover. But my recovery has taken a while and included me giving up my lifeguarding job - I’m now two and a half months out from the onset of the attack and still generally limiting myself to one major or two small events a day. I try to separate outings by a day if possible and am still taking a nap many days. I am SO EXTREMELY THANKFUL that my husband is the most loving and supporting partner I could imagine, and he took on all of the day-to-day work for our family without missing a beat or ever complaining. He actually babies me a little too much during these times and spoils me to the point I have to sneak to do small things for myself to try to move ahead in recovery.

But now we are all on the right path. We have received the initial dosing of the medicine, plus two refills, so I am hoping the drama is all behind us. The medicine seems to be working well so far for our son, and I even felt good enough to go to an escape room with our kids and two of their friends today. Thank you for making it to the end of our LONG journey, and if you’re in a position to help with any level of healthcare/insurance/prescription reform, please make this process easier for parents and children needing these very important medications.