where we would be

I love a man with serious chronic illnesses—yes, plural—so when I started my current job 5 years ago I bought the best health insurance my employer, UCSF, had to offer: Blue Shield PPO. The PPO allowed us to see whomever doctor wherever, without having to worry about networks or referrals or prior approvals. The PPO paid for Robert’s tacrolimus and mycophenolate without hesitation or much of a co-pay, even if my out-of-network-physician self wrote the prescriptions, which I started doing some time ago. He had been on stable doses for years and it was just easier than having him wait for an appointment, take off work to go to the appointment, and wait some more at the kidney transplant clinic to get the same prescriptions written by a transplant nephrologist. pillsTacrolimus and mycophenolate are two of Robert’s three transplant medications. Immunosuppressants. Immun-o-suppress-ants: drugs that muzzle the immune system like a rabid dog, tamping down it’s natural tendency to attack and destroy anything foreign to self—like my kidney transplanted into Robert. Without these medications or just without enough of these medications, the rabid dog immune system resurges to full attack.

This year UCSF required that I change our plan. There were 3 options. UC Care, a Blue Shield PPO, appeared to be the equivalent to what we already had. Well, not so much.

Now I can’t be the prescribing physician. I called my colleague, a UC Care network nephrologist, who has seen Robert in clinic from time to time. He was on vacation, on cruise ship to Alaska, but he answered my call.

“No problem,” he said, “I’ll be back on Saturday and will take care of it then. Just send me the information.”

I emailed him Robert’s entire medication list and doses, specifying that the tacrolimus and mycophenalate needed to be brand name only, Prograf and Cellcept. For as long as Robert had a transplant the kidney transplant nephrologists had always insisted upon brand names.

My colleague completed the paperwork and mailed it in that Saturday as promised.

But a few days later we learned that a 3-month supply of Prograf and Cellcept would cost us $8,000—the difference in cost from the generic form. Eight thousand dollars and we could pay for three months worth of just 2 of his medications.

Or we could feed a family of four. For a year.

Now, Robert and I are professional people, but we ain’t got it like that. So I asked a kidney transplant nephrologist colleague if generics were considered acceptable now. Yes, he said, but you have to check the tacrolimus level every week to make sure the amount of drug in the blood is adequate. And you have to stay with the same generic manufacturer because the drug levels vary from manufacturer to manufacturer in unpredictable ways. There are dozens of generic tacrolimus manufacturers.

I texted my nephrologist colleague, asking him to change the order, specifying the need to stay with the same manufacturer. He took care of it within the hour.

I ordered the weekly lab test for tacrolimus levels. For 9 years, Robert’s Prograf drug level has been 6. After the first week with the generic form, his level was 3 and it took 3 days to get the result. A lightning bolt of anxiety zigzagged through my body, ricocheting from my eyes seeing the number to my throat then to my heart then to my belly where it settled in a smoldering burn. Was the rabid dog chewing through its muzzle?

I sent Robert a text. There would be no worry in a text. Just the words: “Your tacrolimus level is 3. You need to increase your dose from 3 pills twice daily, to 4 twice daily.”

“OK,” he responded, camouflaging whatever he was feeling too.

The next week, the level was 5.5 and 4 the week after that. He had his blood drawn yesterday. On Monday I will start calling the lab for the result.

As we continue to play with Robert's drug doses and he continues to go to the lab for a blood draw every week, I wonder which manufacturer's drug they will send next time. I wonder how long it will take to get the dose right and if Robert’s rabid dog can be held at bay until we do. Because our health insurance changed.

I am also wondering where would we be right now if I couldn’t just call up a nephrologist on vacation and he answer my call, and respond to my email and to my text? Where would we be if no one found out about his tacrolimus level until the results arrived in the mail a week after the blood was drawn? Where would we be if we didn’t have the best private health insurance that my employer has to offer? I wonder.

That’s a lie. I don’t have to wonder. I know exactly where we would be. We would be in the hospital with a failing kidney transplant, wondering if Robert would go back to dialysis at the same unit where he was more than 9 years ago. But maybe I just worry too much.