Medical parents will know exactly where I’m going the second I say the following, “January is coming.” January is easily the hardest month for any medically complex family. In this month it does not matter if we have employer sponsored insurance, private insurance, Medicare or Medicaid—we all are all rendered equal in our work-load.
Why is January so hard for us? There is an annual avalanche of work created for us and our medical providers office by our insurers.
In my family of five there are two of us that are medically complex. I have a rare auto-immune disease called Behcet's as well as a rare blood clotting disorder. My 7-year-old son Jack has Cystic Fibrosis; a progressive and fatal disease that affects most of his major organs. To meet us, you would never know we fight illness. We both look and seem healthy. By contrast, when you see our medical claims, you would think we were on death's door.
Every January I spend between ten and eighteen hours making calls to insurance companies, providers, pharmacies, and facilities. This work happens whether we have an insurance change or not. Where do we start? We first check our plan benefits and formulary (list of covered medications) to see if there have been any changes. If our plan has changed pharmacy contracts, we must call and set ourselves up with our new local, mail order, and specialty pharmacy, then if there are formulary changes and insurance is dictating an alternate similar medication, I call the doctor's office to request a new prescription as well as all the other prescriptions be sent to the new pharmacies. While we are on the phone for that we are requesting new prior authorizations for all our expensive medications.
Most of our medications require a prior authorization so that insurance will cover them. Prior authorizations can take anywhere from 24 hours to ten days to complete depending on whether appeals are needed or not. If appeals are needed, then my work increases and I spend hours proving that my child’s medications are medically necessary. The irony of that is the person making the determination is rarely clinically licensed.
Next, we move to calling each of our medical provider’s offices. Between my son and I, that is 11 different facilities I contact. Many families with medical complexities rely on grants and co-pay assistance programs which must be re-applied for annually and often provide new identifiers and cards. As soon as we are approved for those items, we make all the calls again.
Many of us incur a little extra work if we elected different insurance during Annual Enrollment, as I did this year. I filled our medications on 12/28/18 with my previous insurance and will fill them again with the new insurance on the first day it is effective 1/7/19. This is because we always need to have a 60-day supply on-hand in the event that we go through a lengthy appeals process, there is a natural disaster, or shipping is impacted. At all times, I must think ahead with every decision we make because without his medication, my son will die. I cannot hope to have enough. It must be here, ready and on-hand.
This year my family’s insurance has changed, which means I’ll spend closer to 18 hours getting everything updated, ordered, approved, and shipped. The other thing I must be weary of is the dreaded gap. My old plan ends on 12/31/18, the new one begins 1/6/19. This creates a five-day gap where if a claim is submitted for medical care or medications I pay toward my deductible and out-of-pocket on the old plan which will not be attributed to the new plan. If we need medical care in those five days, we are increasing our annual out of pocket over the maximum.
January is full of research, phone calls, planning and care coordination. It is a complex mosaic that sets us up for relative success for the remainder of the plan year. On the other side, our medical providers are working just as hard to update our information and provide the items we need. If you happen to be a person that does not have the same January stress as the medically complex you may instead be a person that notices your doctor’s office running a little differently. The phone queue may be longer, you may have a longer wait for your appointment or a return call. Every piece of work we, as patients, are met with, the doctor's office meets in-kind.