- - Thursday, October 2, 2014

ANALYSIS/OPINION:

As the mother of two chronically ill children, I have long faced high health care costs. My sons suffer from a rare bone-marrow failure syndrome called Shwachman-Diamond syndrome and have secondary mitochondrial disease that requires treatment with a broad range of expensive medications. We averaged $10,000 to $12,000 a year in billed out-of-pocket medical expenses before Obamacare became law. In 2013, we incurred just over $27,000 in out-of-pocket medical expenses. President Obama’s signature piece of legislation has more than doubled our yearly medical costs.

Having read the then-proposed Affordable Care Act in 2010, I was skeptical of the legislation from the start. I knew that a vast expansion of government involvement in health care would create unintended consequences, and I publicly warned my own senator, Kay R. Hagan, North Carolina Democrat, about the impact the legislation would have on my children. Though she denied the truth of my claims at the time, almost everything I imagined would happen because of the law has come to fruition.

Prior to 2011, our insurance provider covered all of my sons’ treatments, surgeries and hospitalizations without one instance of a denied claim. I always considered our family very fortunate for the medical availability that we had before the law made its impact. As the founder of a nonprofit organization designed to support research and education for Shwachman-Diamond syndrome, I saw over the years the lack of medical access opportunity for families contacting me from Canada and England. They frequently reported difficulty obtaining necessary medications and even receiving routine diagnostic testing owing to denied coverage. One injectable medication my youngest son gets to boost his white blood cell count before surgery was denied to families in these countries because the medication was considered too expensive. Since Obamacare passed, what I saw happen to those other families is now happening to my own family right here in the United States.

With the imposition of new taxes and mandates as a result of Obamacare, employers and insurance providers have been forced to look for ways to cut costs. My husband’s employer is facing an increase of $7.4 million in health care expenses for 2014, alone owing to the mandates. We first noticed changes for our family in 2011. For us, it started with higher premiums, deductibles, out-of-pocket maximums and co-pays. The co-pay for a medication that protects my youngest son’s kidneys from damage had been $131 for a three-month supply for five to six years before the law passed. In 2011, the medication suddenly more than doubled. We watched in horror as it skyrocketed to $532 by the middle of 2013, while at the same time trying to get a medical-necessity exception. Obamacare not only made everything less affordable, it created more work for families and providers. We have witnessed a corresponding decrease in quality of care because of the extra administrative demands placed on physicians and their staff.

During the past month, some of our sons’ most important medications have been discontinued from coverage altogether. Their specialist wrote a letter to the insurance company to inform them that if my sons are not able to continue their medications owing to the lack of coverage, it could lead to neurodegenerative symptoms, which can result in death. Despite the clearly communicated consequences, we were informed that the insurance company could not file an appeal on our behalf until our plan changes (again). The president and Mrs. Hagan repeatedly told us, “if you like your plan, you can keep your plan.” We now know that is not true.

My husband has a good job, but it doesn’t pay nearly enough to cover all of the increased expenses. Yet he earns too much for us to qualify for relief programs from pharmaceutical companies because government regulations dictate who the private companies are allowed to help. His employer is burdened with extra financial costs because of the law. Employees are burdened and, as I’ve stated previously, physicians and their staff are burdened by the cumbersome mandates, as well.

Today we find ourselves deeply in debt and drowning in the paperwork of what has become a full-time fight to restore coverage of essential, lifesaving treatments for our sons. This year alone, we have been billed tens of thousands of dollars in health care costs out-of-pocket. Our credit cards are maxed out and our insurer, bound by rigid government rules, is unable to help us. Obamacare has been far from the salvation that was promised. For us, it has been nothing less than a nightmare of skyrocketing health care costs that threaten to bankrupt our family and keep our sons from receiving the lifesaving treatments they need.

Our situation has now become precisely what Obamacare supporters claimed they were trying to address. The policy debates in Washington have consequences in the real world — consequences that include losing access to lifesaving medications and treatments. These changes brought about by the law could have deadly consequences for my sons. Furthermore, if our family is dumped into the Obamacare exchanges, as we fear may happen, our children will lose access to the doctors who specialize in Shwachman-Diamond syndrome and mitochondrial disease. Mrs. Hagan’s deciding vote on Obamacare has meant disaster for our family and for families like ours. One-size-fits-all government programs, like Obamacare, will always have unintended consequences that will bring devastation to many American families.

Pattie Curran is a North Carolina mother of two children born with a rare bone-marrow dysfunction and founder of a nonprofit research and education organization related to the condition.

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