THE CHRONICLE SEASON OF SHARING FUND:
Medicare Drug Gap Has Woman Scrambling
By Carrie Sturrock
San Francisco Chronicle
December 13, 2006
As Shar Carlyle sees it, her problem isn't that she needs immunosuppressant drugs every 12 hours for the rest of her life so her body doesn't reject its new kidney.
Her problem is that she doesn't know how to pay for them. Her insurance recently ran out, and she couldn't find anything affordable to replace it. So she went on Medicare. Medicare's prescription drug plan, however, won't cover any of her annual drug expenses that exceed $2,251 but are less than $5,100. Another 90-day supply of medicine costs $2,972. Because she hasn't exceeded this year's $5,100 threshold yet, Medicare won't help pay for it.
So she has found herself using skills developed during three decades of working -- from organizational skills to writing persuasively -- to figure a way out of her financial distress.
"This is a huge nationwide problem -- it's not a Shar Carlyle problem," she said. "I have a fair amount of skill and drive. How many people would throw up their hands?"
Carlyle, 52, suffers from polycystic kidney disease, a genetic disease the PKD Foundation reports afflicts more people than hemophilia, Down syndrome, muscular dystrophy, cystic fibrosis and sickle cell anemia combined -- about 600,000 Americans and 12.5 million people worldwide. The kidneys of people with PKD create fluid-filled cysts that can lead to renal failure and death. Carlyle's father died of PKD in 1982. The disease killed one of her two brothers in 2001 while he awaited a kidney transplant. Her other brother suffers from it, too.
Carlyle's passion is working to increase the number of living kidney donors, but at the moment much of her strength is spent figuring out how to pay for the prescription medications she needs to live now that she no longer has insurance.
"It's sapping the creative juices out of me," she said.
She lives in San Rafael on Social Security Disability and a small other stream of income, but it's not enough to cover her rent as well as her medications. The Season of Sharing Fund is helping offset some of Carlyle's rent. As for her pricey medications, Carlyle submitted a lengthy application to the pharmaceutical company that makes one of her immunosuppressants requesting a one-year supply. It was rejected, but she followed up until the company decided to give her the drugs. She is now working on the other drug company to supply her with a year of its immunosuppressant. But that's just one year. She needs the drugs for the rest of her life.
"I can't figure out what's going to happen next year," she said. "I'm trying to figure out what's going to happen next month."
When she learned her dad had the disease, doctors found that she had it too, but the symptoms of exhaustion and nausea didn't begin manifesting until she reached her late 30s. She was able to work until two years ago, when she collapsed on the job. Not long after that -- in March 2005 -- a friend donated a kidney, which allows Carlyle to live. But because it can be a risky procedure to remove diseased kidneys, hers are still in her body, causing her chronic pain and discomfort.
Carlyle, a dancer, can remember a time when her body was lithe and strong. She earned a bachelor's degree in psychology at the University of Redlands in Southern California and later a master's degree in movement therapy at the now-closed Immaculate Heart College in Los Angeles. Her various jobs included helping children with special needs and senior citizens with stress reduction. She is clearly uncomfortable talking about herself and repeatedly goes back to the need for more living kidney donors.
Most people don't realize, she said, that a donor's remaining kidney ends up doing the work of two. And since matches are hard to find even within families, advocates like Carlyle are talking up a new practice of "paired donation" -- having families swap kidneys when each side has a good match for the other.
"I feel a passion for and a desire to give back to others who might be feeling despair awaiting transplants," she said. "I want to encourage living organ donation and paired donation."
And despite all the pain and frustration, she says she is blessed with the gift of life.
"I'm one of the lucky ones."