January 3, 2024

My son had a routine CF clinic appointment today. His care team is at Johns Hopkins in Baltimore, roughly 1.5hrs from our house. We left home around 1pm, and just before 2:30, as we were about to pull into the parking garage, my phone rang. It was a call from a Children's Hospital of Philadelphia (CHOP) about an upcoming appointment that I had scheduled for my daughter. They didn't have enough information about her to create an electronic health record (EHR) and needed to ask me some questions. If I turned into the parking garage I would have dropped the call. So we sat on the side of the road while I answered a dozen or so questions about her and her health.

This call was about an appointment for a second opinion. Her endocrinologist at Penn State had left the practice and I had some concerns about her health status. I had asked to have new labs drawn and my suspicions were confirmed by the results I saw in her EHR. When I had the chance to speak with the clinic about these results, they did not share my concern - her provider had left, and she hadn't been seen by anyone else in the practice. I asked if we could schedule her to be seen with a new provider, and their first available appointment wasn't until May. I took the appointment and made a phone call to CHOP for a second opinion. Through the grace of god and the kindness of my first daughters endocrinologist, we were able to get an appointment scheduled for January 11th. That's what this incoming phone call was about. So there we sat on the side of the road answering questions to generate an electronic health record - something that already exists at several other institutions but isn't compatible with systems used by CHOP - so that she could be seen next week.

When the call wrapped up, we made our way into the clinic for my son to have bloodwork done ahead of his visit with his care team. We could have had the bloodwork done closer to home, but again, the Penn State EHR system is different than the Johns Hopkins system, and many, many headaches in the past where results don't make it from one clinic to another, we felt it easiest to keep all of his data in one place by utilizing the same system for both.

While waiting for his appointment, my phone rang again. This time it was our durable medical equipment (DME) company with a courtesy call reminding us that it was time to place his enteral feeding order. It sounds funny to even type that. He doesn't have a g-tube and just uses Ensure or Boost to add extra calories to his diet give the caloric needs his body has due to cystic fibrosis. The reason we have to use a DME is because when the Ensure is ordered by a physician, it is covered by our insurance. When we buy it ourselves at the grocery store, its $10 for a six pack, and he drinks about 6 per day.

This is a process we have been a part of for nearly 14 years. We have a prescription for 180 cans of Ensure every month. The DME we can use is determined by our pharmacy benefits manager (PBM), an absolutely unnecessary player in healthcare that does nothing other than add cost and headaches. Our PBM costs me the very most time out of everything that I do related to healthcare. Hate is a strong, strong word, but I passionately dislike them and they regularly reinforce this feeling.

I had tried to reorder our Ensure in December, but due to a nationwide shortage it was out of stock. They offered me the option of getting a new prescription from our provider for Boost, but after half a dozen phone calls and faxes, they happily let me know that they are now out of Boost but would be happy to provide Ensure just as soon as the provider sent in a new script. Maddening is an understatement. So I took their phone call in the waiting room of the CF clinic where they had me verify everything from his birthday to my preferred shipping date before telling me that Ensure is still on backorder with no current restocking date. That's 4 minutes of my life I will never get back. Isn't there a way to automate this? Why can't they call me when it's back in stock? Or better yet, why can't it just automatically refill when it's available? I need a prescription because its considered enteral feeding, even though he takes it by mouth. And I can also purchase this without a prescription at Costco or Target or wherever I darn well choose, but if I do that, insurance won't cover the cost. AHHHH! They suggested that I just call back weekly to see if it's in stock. Sure, no problem, i'll just add that to the list.

His appointment went well - growing nicely, sustaining lung function, no major concerns. We saw all of the team members that we wanted to and created a plan of action. They do a sputum culture at each visit and then we just have 5-10 anxiety filled days of waiting for the results to show up in MyChart, only my app was no longer showing me these results. At checkout, I inquired about this as I had always been able to see all of his information. The answer was simple - he turned 13 and they revoked my access. If we wanted to see test results and doctors notes (thank you OpenNotes) HE would now need to create an account and grant ME proxy access. I am all for programs that support a transition of care from parent to child and also provide children with a degree of privacy and authority over their own health care decision making, but taking away all parental rights to a thirteen year old's health information is absurd. Let's debate it in the comments. Additionally, now we have an additional version of his EHR - another username and login, another email, another account to dig through when we are asked to provide some information or solve a new mystery. This is making things worse for us, not better.

The prescription that his doctor had sent to our local pharmacy was out of stock and I was notified via text message. I'm hoping to receive another once they have it available again. They did ask at his appointment if we needed any refills, and the honest answer is that I don't know. I don't know how many refills we have left on anything! They all ship on different dates and have different requirements - some are 30 day, some are 90. Some come from a local pharmacy, some are mail order. Some are specialty! Some come from the DME. The rules change constantly and insurance required to notify us of changes (isn't that some shit!). I don't know what insurance will cover at 100% and what they will charge us for. I can't keep track of when we will hit our deductible and out of pocket max because all of these different places bill at different times and in different ways. I have to place more trust that the insurance and billing side of things works the way it is suppose to simply because I do not have the capacity to do more.

Overall his appointment went well and we won't go back for several months. We will wait with bated breath for his labs and sputum culture to come back.

We weren't able to complete the forms that CHOP requested through the patient portal for next week's appointment because my daughter is also 13 and they wouldn't send me a link to sign up for a MyChart account, it had to go to her. When she received the link, it was broken, says there is already an account associated with her phone number.