ST. JOSEPH — Lisa Aiken has good days and bad days. When she's feeling good, she can chase her kids in the front yard with silly string. She cooks dinner and goes a few rounds on the elliptical. On bad days, Ms. Aiken's spinal injury hurts her so much she can't walk. Her family eats takeout from the gas station within walking distance of their home.
Her Medicaid coverage promises more bad days.
Seven years ago, the Union Star resident had a car accident that tore her spinal cord and caused syringohydromyelia, a condition that causes vertical cavities to form in the spinal cord. She also has six herniated or broken discs in her spinal cord.
Ms. Aiken compares her injury to what Christopher Reeve had. The Superman actor tore his spinal cord horizontally, which left him paralyzed. Ms. Aiken's vertical tear affords her painful, limited range of motion. An internal pain pump the size of a Walkman cassette player bypasses the bloodstream and sends pain medication through a tube to her spinal cord. The pain pump allows her to use less medication than she would need to take orally and spares her liver the harmful side effects of pain medication.
For several years, Ms. Aiken used the non-narcotic Prialt because she's allergic to most pain medications. On Prialt she held a steady job at the state hospital and lived her life the best she could. For Ms. Aiken, that meant she still couldn't pick things up off the floor or sit in one place too long, but she could go bowling with her daughters, Arianna and Jennifer, and drive to visit family outside of Houston, Texas.
Then Ms. Aiken lost her job at the state hospital and the insurance that covered Prialt. She went on Medicaid in April and discovered her new insurance plan refused to pay for the drug.
"I called them to find out what's going on, and they tell me it's in my doctor's hands. My doctor calls and tells me they can't get pre-authorization, that they're not covering it," she says.
Her doctor refills the medication in her pain pump every six weeks through a port in the device. Without insurance coverage, Prialt would cost around $7,000 per refill.
Ms. Aiken talked to her doctor about a payment plan for Prialt, but her physician says he would need at least half of the cost of treatment upfront, which Ms. Aiken cannot swing on her $674 a month disability check.
Upsetting though it may be, according to the American Pain Foundation, Ms. Aiken's situation is common among the estimated 76.5 million Americans who live with chronic pain. Insurance companies often limit access to pain medications as a precaution against prescription drug abuse.
Missouri's state policies on pain medication use also might be affecting Ms. Aiken's situation. A 2008 study conducted by the Pain & Policy Studies Group measured how states balanced regulation of prescription drug abuse and access to pain medication for those who needed it and graded them. Missouri received a C+.
Now, Ms. Aiken finds herself straddling the life she knows she can have and the life she can afford. And she already lives her life on a precipice. Her spinal injury is fragile. Should Ms. Aiken turn her head too fast, the tear in her spinal cord could move horizontally and turn the mother of two into a quadriplegic. She moves with care, and without Prialt, she moves less.
Instead of scrapbooking with Arianna, 7, and Jennifer, 14, liked she used to, Ms. Aiken watches movies and television shows with them. She observes rather than participates in the games they play on the family's Wii gaming console.
Her boyfriend, Mike Rockett, feels the difference, too.
"Lisa is the kind of person who is very tenacious," Mr. Rockett says. He says that although her body can't keep up, Ms. Aiken still has a 'grab life by the horns' personality.
Currently, Ms. Aiken has a cocktail of drugs in her pain pump to reduce muscle spasms. Ms. Aiken will go back to morphine for her pain management. She will soon be taking a liquid dose of morphine orally to see if her body can handle the opiate. If it can, the drug will go into her pain pump.
Ms. Aiken is apprehensive of morphine's side effects. Her pain pump allows the medicine to go straight to her spinal cord instead of through her bloodstream, but the body can still become addicted to the morphine. The last time, withdrawal from the drug almost killed her. In the course of a couple of weeks, she lost 40 pounds because she couldn't keep anything down.
Alternatives look bleak. If the reason Medicaid won't cover Prialt is on the doctor's end as Medicaid representatives suggested, Ms. Aiken would have a hard time finding another physician. She searched for her current doctor for more than a month and drives to Independence to see him. She says many doctors hesitate to take over another physician's pain pump. Ms. Aiken had hers implanted in Las Vegas, where she was living at the time of the car crash.
Finding another insurance company is also a challenge. Ms. Aiken has a pre-existing condition that makes her hard to cover. Mr. Rockett can't afford to put her on his insurance plan.
Both Mr. Rockett and Ms. Aiken feel as though she's slipped through the cracks in the system.
"As much as the government does to help with health care, it's not good enough. She's proof of that," Mr. Rockett says.
Most frustrating to Ms. Aiken is that she doesn't feel she's asking for too much. She just wants what everyone wants: to be self-sufficient and to have more good days.