Hoping That the Rules of Health Insurance Change Soon

03/18/2010 05:12 am 05:12:02 | Updated May 25, 2011

Sometimes I feel that the best way to be optimistic is to have low expectations. That way so many more things will seem incredible and wonderful to you. That is not to say that incredible and wonderful things never happen. My family was the recipient of a magic moment over a month ago, when we were featured in the roll-out offering of the Impact section on The Huffington Post and over 900 people came out with donations to help us cope with our medical bills.

When we lived in Ohio, we tried going the "independent-at-all-costs" approach. The approach came from a mixture of hubris, a need to be independent and free from debt to family, friends and (especially) banks, and a dim view of the generosity of current state of humanity. After losing a car, our retirement account, our kids' college money and our house, we finally decided to change course, after I accepted a position in Florida.

The score: Medical Bills - 1, Stein Family - 0. But in this struggle, the game isn't over until you concede defeat or the rules finally change.

I headed down to Florida first, after closing down our Internet business (which was running in the red, anyway). Monique, my wife, was going to start it back up herself after the school year was over and she could move everything down to Tampa.

I found a nice-looking house being rented at a reasonable price. The owner, who bought it as an investment to flip and got caught in the burst of the Florida housing bubble, panicked when he received zero offers to buy in the first six months. He tried to sell it and decided to rent at a rate below his monthly mortgage payment. I took some time off, flew back up to Cincinnati, helped finish the packing, rented a big truck and got ready to start a new chapter (or inning, to avoid mixing metaphors).

Two days after we arrived, we got one more blow from our staunch independence in Ohio. The appointments that Monique decided to forgo to keep up with the kids' medical care had a delayed reaction. The retina on her only working eye detached, due to fluid building up behind it, and thus began a cascade of events that has left her nearly blind.

More than once in our lives, we have had to make healthcare decisions based on finances. Each time, the results were disastrous. Either our finances suffer or our health does. This scenario plays itself out everyday across our great nation and a change has to come.

In a recent report by the Urban Institute, called The Cost of Failure to Enact Health Reform: Implications for States, this worst-case scenario was laid out:

Between now and 2019, if the health system is not reformed, the number of people without insurance would increase by more than 30 percent in 29 states. In every state, the number of uninsured would increase by at least 10 percent. Businesses would see their premiums increase -- more than doubling in 27 states. Even in the best case scenario, employers in 46 states would see premiums increase by more than 60 percent...Every state would see a smaller share of its population getting health care through their job. Half of the states would see the number of people with Employer-Sponsored Insurance (ESI) fall by more than 10 percent. Every state would see spending for Medicaid/Children's Health Insurance Program (CHIP) rise by more than 75 percent...The amount of uncompensated care in the health system would more than double in 45 states.

In essence, nearly everyone will be impacted in one way or another: working or unemployed, young or elderly, middle or lower class. And God help us if we get truly sick, or begin to go blind, or be born with severe health problems, like my daughters.

In 1988, when my oldest was born, my insurance from work did not cover obstetrics, and we had to pay up front, making payments with each prenatal visit. Then we got hit with the payment after delivery, when we were supposed to be paying off the crib and buying diapers.

In 1996, when my middle daughter was born, the scenario was different, but not better. Insurance covered the delivery, but they also insisted that mother and child be discharged from the hospital in less than 24 hours, since that was all that insurance would pay for. Her hematocrit was way too high, and by the time that the insurance-covered home-visit nurse arrived for her brief appearance, we had already been to the emergency room when the baby's color turned from pink to orange to greenish-yellow as her bilirubin climbed and she was sent to Children's Hospital with notations of "Failure to Thrive" and "Rule Out Abuse."

They didn't even diagnose her or my wife with Stickler syndrome, which has so greatly affected our lives. It wasn't until our third child was born that the diagnosis was made, and by then it was too late.

What did our great health care system, with the insurance company at the wheel, do for us? Our youngest had a trach for six and a half years, complete with 16 hours of nursing care, and thousands of dollars of medical disposables and never-ending rent of pumps, vacuums, oxygen tanks, worry and grief.

Our story often seems too incredible. Even relatives have told us that we "wouldn't be in this financial mess" if we didn't decide to have three girls when we have this genetic disorder hanging over our heads. We had three girls because I had a fair-paying job in public health, and the doctors that we trusted didn't probe deep enough to properly diagnose Monique and the girls, and insurance had a part in how they worked.

As long as insurance has that much control over our health care system, patients and even doctors will be affected. Insurance companies are, by nature, for-profit organizations. They make more money by denying more care, and by reducing doctor's compensation. Health care facilities cover their costs by raising every cost they can, and reducing the pay of nurses and staff. The cycle of pain goes on and on.

In our household, it had resulted in near-financial ruin and my sweet Monique losing the ability to see the faces of her husband and children, and all because we were forced to make choices we should never have had to make.

Thanks to the extreme kindness and generosity of the readers of the St. Petersburg Times and The Huffington Post, we have been able to pay the bills that we continue to negotiate, recover some losses and have some funds to help out with current doctor visits. Monique and I recently traveled from Tampa to Miami to go to the Bascom-Palmer Institute to see the same doctors that did that bizarre tooth-in-eye procedure last month that made the international news. We went with the hope that they might be able to help Monique before she loses the last remnants of her rapidly failing eyesight that she gave in order to make certain that our girls were cared for.

I am writing this blog post to inform, educate and keep the Huffington Post readers apprised of our situation, one that so many had offered to help. It is my way of "paying it forward," and I will continue to fight for reform by speaking out as a private citizen and a patriot.

Once again, if you can, please give to the National Association of Free Clinics. They help so many. I join my fellow health care reform warrior Keith Olbermann in asking everyone who can to be a part of the solution. Help those who need healthcare now until the reform comes, and contact your legislator to demand that it happens.


Read the post on the Stein family that inspired the Huffington Post community to donate more than $30,000 to their cause. Also watch their follow-up video to Impact readers.