Since the Affordable Care Act went into effect on Aug. 1, I've heard a lot about how it will affect my ladyparts, providing coverage for things like Pap tests, prenatal care and mammograms. And while all of my parts are appropriately grateful, I've been thinking about how Obamacare is really about these two little girls I know.
One is Cassidy Freeman, whose picture you may have seen on Facebook. The 8-year-old is one of three gorgeous daughters of a hardworking couple who, when I met them over a decade ago, were in ministry in the Church of Christ.
Scott was a preacher, and Tracy had worked for Republican politicans before becoming a full-time mom. It would be fair to describe their politics then as socially conservative, though to me they were always more interested in following Jesus than any political party.
At age four, Cassie was diagnosed with juvenile arthritis, and since then she's been denied medical coverage four times due to her pre-existing condition. Obamacare can't fix her arthritis, but it's already cured some of the family's anxiety.
The other girl on my mind is Kelsey Fuller, whose family lives in my South Jersey town. Now 15, Kelsey was born with a rare condition called Juvenile Neuronal Ceroid Lipofuscinosis, or Batten Disease.
Batten is a neurological disorder that results in worsening seizures, mental impairment, loss of speech and motor function. It is always fatal. The form of the disease Kelsey has usually results in death before age 30.
Her family, which includes two other children, cares for Kelsey the best they can and tries to make her life as fulfilling as possible. She goes to school each day, at the Archbishop Damiano School at St. John of God in Westville Grove. With both parents working full time, Kelsey's aging grandparents also help out when they can.
But her condition is getting worse -- she's now legally blind, struggles to speak, struggles to walk and wakes several times a night. The family has tried to get in-home skilled nursing services to help with Kelsey's care. Their insurance company refused, Kelsey's mother said, because her condition isn't advanced enough yet -- Kelsey can still do some things, like feed herself, with assistance.
That will change.
"This disease is absolutely horrible. The brain basically shuts down and the rest of the body deteriorates because of this, leaving them bedridden until death," her mother, Kim, told me. "These kids are dying a slow, painful death and there's not a damn thing we can do. Most of these kids are so heavily medicated, they become like zombies. Research continues, but because this is a rare 'orphan' disease, funding is extremely hard to get."
With repeated denials from their insurance company, the family's next step is applying for Medicaid, but first they'll have to burn through nearly all of their retirement savings to meet the asset threshhold -- sacrificing the rest of the family's future security to care for Kelsey in the present.
For me, Kelsey's case is an illustration of how Obamacare likely doesn't go far enough. It's an example of how medical insurance companies turn sick children into a series of little boxes to be clicked off, categories to be satisfied, benchmarks to be met.
But Kelsey's story will only end one way. Everything else, all that comes before, is what her family will have to hold on to at the end. Fighting with an insurance company for help shouldn't eat up another minute of that precious time.
