The Quest for Quality Healthcare
By Deanna Glick
My daughter finally started walking on her own — just two months shy of her second birthday.
It was the final achievement in a series of physical milestones that came far beyond the normal timeframe for babies and toddlers as a result of a diagnosis she received at 4 months old.
Torticollis. Basically, it means she had a tight neck muscle on her right side. It is believed to be a result of in utero positioning. Think sleeping wrong for nine months. But treatment involves a lot more than a massage with the latest trend in smelly muscle rub. The condition causes babies to resist movement and favor the unaffected side of their bodies. Affected babies typically sit up, roll over, crawl, stand, and walk later than normal. They tilt their heads and tend to sleep with their heads turned to one side, which can cause plagiocephaly, which is the fancy word for misshapen head. Treatment for torticollis involved an exercise regimen several times daily and weekly physical therapy; and for the resulting plagiocephaly, wearing a helmet type device for a few months.
During this time I still had to manage my diabetes. And my husband had knee surgery. And my mom was diagnosed with ALS, perhaps more popularly known as Lou Gehrig’s disease.
The psychological impact, out-of-pocket financial burden of a pre-approved and later denied claim based on "reasonable and customary" costs on top of already pricey co-pays, and the time and energy taken to appeal it (unsuccessfully) was overwhelming at best. And the experience ruined a fantasized theory I had developed soon after my own diagnosis. I imagined I and perhaps my whole family, had reached some sort of disease quota. We had our share of chronic illness and financial contributions to the health care system. I guess I was mistaken that we lived in a world of socialized disease acquisition. Not that I hoped for everyone to be sick. It just seemed that surely it wouldn’t be fair for our family to have to deal with more than we already had. Amongst my extended family, we already had diabetes, addiction, cancer, depression and related disorders, HIV/AIDS, a seizure disorder. I may be forgetting a few.
The fantasy obviously died. Advocacy seems to have taken its place and occupies a far bigger place in my being. In the almost 15 years since my diagnosis, I have personally witnessed dramatic changes in the healthcare industry. I recall an appeal hearing I attended when I was just 21 and fighting for coverage of diabetic supplies through my HMO. At the time, the company paid nothing toward the almost $200 per month I was spending on glucose meter strips. One of the three head honchos sitting at the vast conference room table on the third floor remarked that her grandmother “didn’t take care of herself. Most people with diabetes aren’t going to use the strips the way you are.” So, what are they going to do? Make the insurance company pay and then squirrel them away in a closet?
Coverage for diabetic supplies has improved. So has technology. But it’s expensive. And the epidemic has exploded, the uninsured population has skyrocketed and even covered patient care and coverage itself can be questionable. The healthcare problem has become expensive enough to receive bipartisan lip service on Capitol Hill. But the solution remains elusive.
Love her or hate her, Oprah recently made an interesting point.
As she was interviewing filmmaker Michael Moore on a recent episode of her namesake television show about his latest creation, “Sicko,” spotlighting the ills of the healthcare industry and set to debut in theaters June 29, she shared the results of one of her famous “Aha!” moments.
People get easily unsettled by the notion of “socialized medicine,” despite our enjoying and championing various “socialized” public services like police and fire departments. You know, those people that provide basic needs such as saving our lives. Oprah uttered the obvious question: “Isn’t that what health care is supposed to do?”
“Sicko” was actually inspired by a segment of a previously aired cable television series about a diabetic seeking a pancreas transplant. Suddenly my plight for a few strips seems a bit silly. As does my narrow-minded diabetes advocacy. It’s not just about my diabetes anymore. Because my daughter and everyone else lives in a world where quotas on medical misfortune truly are a fantasy, but access to good health care and the means by which to take care of themselves doesn’t have to be.
Visit her website www.deannaglick.com.
dLife's Daily Living columnists are not all medical experts, but everyday people living with diabetes and sharing their personal experiences. While their method of diabetes management may work for them, everyone is different. Please consult with your diabetes care team to find out what will work best for you.
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