Two of the most common questions we receive after telling people about our decision to take Jonathan to California for treatment is how will we do it and is it expensive. The two topics really go hand in hand, so we’ll discuss them together.
Our family moved to the Detroit, Michigan area a couple of months ago from Iowa for Ken’s job. This job allowed us to reassess our family situation and how things might work when Jonathan was called off the wait list at SoCal. With this in mind and the fact that Jonathan had a couple allergy incidents at daycare in the past, we decided it was best for me to stop working. I spent 10 years in corporate finance, so this was a tough decision on my part. It might just be temporary, but only time will tell. It has definitely been an adjustment for myself and our family, but I like the idea of Jonathan being in a safe, controlled environment every day.
Staying at home will allow me the flexibility we will need to take Jonathan to and from appointments in California as necessary. I know a lot of families in the program have both parents work and are successful – it just would have been difficult for us. Ken will be able to stay at home with Clara during the school year or we will have friends and family stay with her while we are away.
Another logistical piece of the puzzle is daily maintenance and dosing. Once we are fully up and running in the program we will have morning maintenance and afternoon dosing. I will go into more specifics on this once we have Jonathan’s plan, but he will be required to eat different foods at different times. I’ve heard from other parents in the program that this aspect can be time consuming. Especially so in the morning as Jonathan’s list of maintenance foods starts to grow. Being at home full time will allow me to give him extra time if needed and give him foods at appropriate times.
Logistics aside, the cost of the program is the largest question and the largest unknown. The SoCal website has a great FAQ section where they discuss several commonly asked questions. They have a section regarding CPT/billing codes they use to bill insurance providers, a section regarding out of pocket costs should treatment not be covered by insurance, and a section on financial planning breaking down some of the individual visit costs.
The costs incurred by each patient really depends on which insurance provider they have. For us, we currently have a self-funded insurance provider that utilizes the Blue Cross/Blue Shield national provider network. In all honestly, we aren’t sure if any of the program costs will be covered by our insurance. I’ve called with the CPT codes and have been insured I don’t need prior authorization. The codes look like they are regular visits that have been covered in the past, but I feel like you don’t know until the appointment occurs. To add to this complication, we are going to be switching insurance companies in the coming months due to an organization change for Ken at work. We will be switching to a Cigna PPO, so we will have a brand new insurance company to navigate.
With all of these items and moving parts in mind, this is what we’ve determined. We’ve estimated the program will cost us anywhere from ~$80,000 if we fully pay for the program ourselves to ~$45,000 if we only have to pay for travel to and from California. We came up with these estimates using the self-pay rates above, understanding the yearly program fee of $4,500 and making other key assumptions.
The biggest assumption is the length of the program. According to SoCal, the average patient has 14 visits. This might be more or less for Jonathan, but we assumed he will have 15 visits spanning two years. For each visit, we assume we will be there for two nights (except for visit 1 and visit 2) and we assume three people go each time. Even though the trips might consist of just myself and Jonathan most of time, assuming 3 people each trip helps plan for when Ken goes or when Ken and Clara both go. We’ve tried to be conservative. We’ve also assumed he will need to go on SLIT or sublingual immunotherapy for his environmental allergies. Only time will tell if this is true.
We understand this is an enormous expense and one that we will need plan for in the future. However, we feel like the long term benefits are completely worth it for Jonathan and our family. Ken and I are both very into spreadsheets and planning things out, so we will be tracking and breaking down the cost for each trip as we go along. I will provide updates as we progress to give others who might be interested in the program an idea of actual costs. I will include costs we’ve incurred for travel, costs not covered by insurance and what was covered by insurance (if anything).
Let us know if you have any questions below. We are always more than welcome to answer any questions you many have about the program!
