Health Care Confidential: Of Music And Miscarriages

The health-care reform debate has become so poison- and rhetoric-filled that it's really easy to lose sight of the primary issue: How are individuals affected by our current health-care system? Before we can support change, or dismiss the need, it's important to grasp what truths our neighbors and friends are living with daily, the realities they must accept. In these essays, four local adults describe their lives as shaped by their work and families, and their corresponding health-care coverage. From a doctor's lament to a firsthand reckoning of end-of-life counseling to an eyes-wide-open account of an uninsured heart attack waiting to happen, our essayists offer a very personal view of why changes are needed in our current health-care system.

Sarah Pirkle, 38, is a roots musician and fiddle instructor who lives in Walland with her number-one collaborator and husband of 12 years, Jeff Barbra.

I consider myself a local music practitioner, a meat and potatoes artist: I teach children (and adults) to play music. I perform in small venues where my job is to distract and entertain people who have put in a hard day's work and need to cut loose. I put myself in the same category with landscapers, stonemasons, hair dressers, massage therapists. Most of us are self-employed, we're performing a service, and paying for our health insurance and our Social Security taxes 100 percent on our own.

My husband is also a professional musician, Jeff Barbra. I met him at a "pickin' party." We live in the foothills of the Great Smoky Mountains, on a road named after his family. We're more than content that we have spring water on the property, room for a garden, and several critters.

We married when I was 25 and have both been self-employed our entire marriage. We were uninsured (for me it was ages 18-30) until 2002, when after much shopping around, we settled on Golden Rule. We took out a high-deductible ($3,600 a year) policy with a tax-deductible medical savings account. Maternity coverage was not included, and in fact I could not find a policy anywhere with maternity coverage we could afford. We had always hoped to start a family, but we put it off, hoping our situation would improve.

And then a few years ago our financial situation did change. Jeff got a regular gig performing five days a week in Pigeon Forge, a steady paycheck. I continued to teach a full schedule of private lessons, maintaining a waiting list. Almost immediately, Jeff started having episodes of vomiting, abdominal pain, and fever every two weeks or so. The docs never said, "We don't know what it is," but gave us several possible diagnoses, chronic conditions, all the kind of diseases that can make you "uninsurable." He was hospitalized for few days once, so sick that he had a mild cardiac event due to high fever. A few months later and the same thing happened, abdominal pain and fever, hospital, but no clear answer.

Then a new year passes, meaning a new $3,600 deductible. Months of tests, two colonoscopies, several CTs, an exploratory surgery where we were told that he might have a large section of his colon removed (he didn't), and then finally they yanked his gall bladder. That seems to have been the answer. Jeff says he was more worried about the deductibles and the possibility of being declared uninsurable than he was about never waking up from the surgeries. Meantime, our chances of switching to a plan with a lower deductible and maternity coverage were on hold for about three years. We are still paying on those two years' worth of deductibles today.

Finally, Jeff was free from illness for a full year. Golden Rule raised that deductible to $4,000, and our monthly premium had doubled, from $161 to $350. I started shopping again, hoping for maternity coverage. I found what looked like the best deal with the Farm Bureau (Blue Cross Blue Shield of Tennessee) in early 2008; it had a $500 deductible, paid 80 percent after that, $15 co-pay. After the policy was in place for nine months I would have maternity coverage. We took it.

But in July, at age 37, I unexpectedly turned up pregnant, three months before I was eligible for maternity benefits. I got Tenncare to cover my care until my insurance kicked in. I miscarried shortly after. I got pregnant on purpose in October 2008, but lost that baby, too. It has always been (in my mind and heart) a matter of "when" and not "if" I would be a mother. I cried uncontrollably both times until I thought I might dehydrate, no exaggeration.

After two losses and no live births, it is the standard of care for testing to be done to diagnose the problem. My doctor ordered what is called a "high-risk panel," all blood tests. The genetic portion of the testing revealed that I have a blood-clotting issue, a significant risk factor for early miscarriage. I will need a blood thinner during pregnancy to increase my chances of a successful outcome, and my odds are good with treatment.

BCBST flat out turned down all of the genetic testing, stating that my contract excludes "genetic testing or genetic counseling for preventive measures." There were three claims amounting to $3,500 that I would have to pay. Every month I would get bills in the mail for the testing "not covered," and I would have to call and say the words "recurrent miscarriage" over the phone to insurance agents to try to get someone to look at the whole picture, call my doctor, pick up letters, write letters. I made payments on five or six different accounts with doctors, labs, hospital, just to keep them from going to collection. Reliving my losses every time, but shoving it down, putting on my game face, and going to work. It took me eight months to get BCBST to pay those claims

Now my concern is that we could lose our coverage. That steady gig Jeff had for four years was lost due to the economy, but I still have a full schedule of students, and we are still in demand for weddings, parties, etc. But if either one of us were to get injured or sick and not be able to work, or if opportunities to work dried up, health insurance is one of the first things we would have to cut. Right now, our per-month premium is $432, about 15 percent of our net income. We do have a grace period, but we would be cancelled if we missed one payment with BCBST. And even with the coverage we do have, it's hard to think about going to the doctor with a $5,000 deductible, when you don't have $5,000 in your savings. It's really restrictive.

And I worry that my genetic risk of early miscarriages could make it harder to get more coverage, or impossible to get maternity coverage, if this policy were ever cancelled. Already there are three riders on our policy, excluding coverage for treatment for mental health, allergies, and for Jeff, any disease of the esophagus. Even then, I count us luckier than some, knowing there are people dealing with life-threatening illnesses (mine is not necessarily so) who have been battling their health insurance longer and harder than I have.

I have been able to advocate for myself, but what about those who are too ill to do so? Those of us in the lower middle-class tax bracket are in constant danger of bankruptcy because of medical costs, even if we are insured. We are paying dearly and not being served. Health care reform is long overdue in this country; we are in a crisis. President Obama's health care reform bill may not be the solution, but at least it has us all talking about this issue. I beg those opposed to HR3200 to quit spending energy on spreading misinformation and angry outbursts. Come up with a solution.