Hello and apologies for abandoning you. While there have been events happening, I have been in the doldrums of apathy, numbing my mind with senseless computer video games.
As it turns out, Duopa is not a cure. In fact, it is the same medicine I’ve been on since 2010, albeit delivered in a less sporadic way to my brain. Oh, and it is more easily fine-tuned and adjusted. I’m grateful for that.
While I’ve been anesthetizing my mind, a Facebook friend whose mother suffers from PD has been fighting the good fight. She took on Abbvie, Medicare, and Medicaid and won!
Based in part on me sharing my experience, Sherrie’s mother began using the Duopa gel and pump in January. She had some complications and spent several weeks in the hospital. She did much better on the Duopa than on regular carbidopa/levodopa yet required skilled nursing care rather than her usual care at home. Transfer from a hospital to a nursing home is not usually a big deal. The Duopa became a huge issue because the pump that delivers it is considered an infusion pump by the FDA, even though it is not one in the same way that an insulin infusion pump or a morphine infusion pump is.
Sherrie finally found a skilled nursing facility that would accept her mom and discovered another huge hurdle. The process of FDA approval did nothing to determine which letter of the Medicare alphabet soup would be responsible for paying for the expensive Duopa cassettes when a patient was not able to live at home. For a short time, the pharmacy that was providing the gel cassettes refused to send any more until the billing was figured out, and Sherrie’s mom had to go back on oral carbidopa/levodopa.
Sherrie persevered, calling Abbvie, the DuoConnect case manager and folks higher-up, and several Medicare representatives until the problem was resolved. At last report, Sherrie’s mom’s Duopa will now be paid for by Medicare Part D while she is in the skilled nursing facility. All that will come out of her mom’s cash flow is the price of the syringe adapters. Though that is still one-third of her mom’s monthly cash allowance, Sherrie considers it a very small price to pay for peace of mind and her mother’s quality of life.
My thanks to Sherrie Mercurio for allowing me to share this important information with you.