Eight Weeks

Eight weeks. This picture was eight weeks in the making. I had a change in insurance this summer, which entailed navigating a new insurance company, with its different rules, exclusions, co-pays, providers, and coinsurance rates for medical devices/testing/etc. Most notably (and painfully), it meant different contracted pharmacies and Rx rules. We were incredibly fortunate to obtain a coveted endocrine appointment the same week our new insurance took effect. Yes, it involved a lot of calls and various people advocating on our behalf. And it involved an amazing, flexible, dedicated, hard-working endocrine team.

After dealing with five different pharmacies over the course of eight weeks, my son finally has all of his prescriptions. I am so grateful to the endocrine team who helped us navigate the prescription issues and search for solutions, especially when it seemed that everyone on the other end of the insurance phone calls gave conflicting answers. I lost count of the number of times they submitted and resubmitted prescriptions. Throughout this process they were accessible, helpful, and empathetic. Each time I felt as if I was bludgeoning my head against a wall, they went the extra step to help.

All things considered, even despite a nearly herculean effort, we are luckier than many. With the skyrocketing price of insulin, had we been without insurance, no amount of navigational help would have spared us the $1200 price tag for a one month supply of my son’s insulin. And that price is up 50% from when he was first diagnosed three short years ago. 

In case that reality is not humbling enough, consider a few other factors.

1. I have private health insurance

2. English is my first language

3. I like to believe that I am reasonably well-educated 

4. I have experience working with medically complex patients and, as such, some limited experience dealing with insurance companies, vendors, pharmacies, etc.

5. I have transportation, which increases my access to doctors and pharmacies (including being able to go back and forth to the pharmacy more times than I care to admit)

My point is not to brag about my relative good fortune of “only” struggling for eight weeks or “only” losing “x” number of hours on the phone. Insider secret: do not, under any circumstances, keep a running tally of the number of hours/days/weeks of productive life lost to phone calls to insurance, vendors, pharmacies, and the like. Unless, of course, you also want to find yourself navigating the mental health system as you slowly lose your grip on reality! To that end, I am very grateful for both external help from my son’s providers, access to care, divine providence, the universe, karma, and some luck. 

But as a pediatrician, mother, and in solidarity with a larger community of caregivers, I have an obligation to state that the current global situation surrounding insulin pricing is floridly unethical. November 14th is World Diabetes Day, a date chosen because it is the birth date of Sir Frederick Banting, who won the 1923 Nobel Prize for being the first person to extract insulin from the pancreas. Banting’s discovery is what keeps the 1.25 million Americans with Type 1 Diabetes alive every single day. Banting’s discovery is what is keeping my son alive tonight, as he lays sleeping in his bed while I write this. And on the eve of World Diabetes Day and Banting’s birthday eve, I feel he would roll over in his grave if he knew that 1 in 4 patients with T1D admits to rationing insulin. I will even go on record and say that I have done it. Something has to change in this country for the more than 1 million patients living with T1D. And while I know that change is coming, I hope and pray it will be expedient, as many patients with T1D do not have eight weeks to wait. Happy World Diabetes Day! May both your insulin and your coffee be long-lasting!