Health Care We Can Afford? Not Likely.

Note from Ronnie: I'd like to present as many different views as I can over the coming months about this debate on Health Care Reform. If you would like to chime in on this topic, please contact me and we may be able to use your commentary on this blog. Comments and questions are encouraged, I just ask that you keep them constructive and respectful. Thanks.

First things first: What an honor to be a guest blogger on RunSickboyRun! Ronnie, thanks for asking me to participate. As much as I hate confrontation, I’m thrilled to be writing about something so important and is sure to change all our lives in one way or another.

Just a short into: My name is Erica. My son, Samuel, is almost two and has cystic fibrosis. Samuel was diagnosed at just 14 days old through mandatory newborn screening in our state. My husband and I had no idea we were carriers of the mutated gene as there was no history of cystic fibrosis on either side of our family.

Let’s be honest: cystic fibrosis is an expensive disease. Medications are abundant, treatments are frequent and highly specialized. There are continual doctor visits, numerous hospital stays and, quite possibly, transplant surgery, to name just a few. When the need for care arises in an emergency, a person with cystic fibrosis requires highly specialized care in a timely fashion.

I saw a sign the other day on the podium at which President Obama was speaking. It read "Health care our working families can afford". This proposed legislation is something that my working family canNOT afford. There is no way this plan can or will give the required quality of care to Samuel. Let me explain why.

Right now, we are blessed to have health insurance through my husband's employer. Even before Samuel was born, we knew we had access to healthcare for the good health and wellness of our family. We are fortunate to have this for our family, however, our health plan still requires us to pay a portion, so it's not free. We happily pay our portion because we are grateful for the quality care Samuel receives. We know he is being seen by the very best physicians, receiving the best care we can get for him. We have chosen to sacrifice some things so we can provide this high level of care. For some to say they become bankrupt because of health care or lack of insurance is simply untrue. The real issue is lack of proper financial planning to prepare for health issues.

I always hear how good Samuel looks. People constantly tell me “He looks so healthy!” I always say thanks and fill them in on the details: we have great caregivers. Samuel’s pediatrician, pulmonologist, nurse, nutritionist, respiratory therapist, along with the many others on the team, coordinate efforts to make sure he is receiving appropriate, integrated care. When something is wrong, I know I can count on this team at our local cystic fibrosis care center to answer my questions the same day I call. We get the best care because it is what we expect from them, along with our insurance company. The Cystic Fibrosis Foundation funds and accredits over 115 care centers across the nation and sets the standard of care at the accredited facilities.

I know the current heath insurance system is flawed. It's not perfect and I don't know of anyone who will say it is. However, let me point out what it has done for me. Our insurance company has negotiated, on behalf of Samuel, the purchase of his high frequency chest compression vest, affectionately known in our house as “the vest”. We would have never been able to afford this on our own, as many families just like our in Ireland have experienced. We also received, the same day it was ordered, his nebulizer, delivered to our home so we could begin treatments that very day. You see, with cystic fibrosis, proactive treatment and nutrition really is the best care.

Because of the cystic fibrosis center working with our insurance agency, Samuel was diagnosed very early in his life. A sweat test performed at 14 days old, confirmed what newborn screening initially picked up. Once we got the diagnosis, we were able to tackle this disease head on with proactive treatments and nutrition. Without our insurance company working on our behalf to get early tests and proactive care, we could have easily missed this vital window of opportunity. We are also permitted to participate in clinical trials to improve treatments for people with cystic fibrosis, not only adding years to life, but life to years.

The people of the U.S. have access to the best medical care in the world. It’s no wonder people from around the globe come here for specific medical attention. Heart care, cancer treatments and other highly specialized surgical procedures are sought after here in the United States. With a system so flawed the government feels the need to take over, how can this be? And, furthermore, how can we, as citizens of the United States, expect the best medical care for the lesser among us, when the federal government takes over. History, economic principals tell us decisions will inevitably be made based on dollars, not days, on protocol, certainly not passion.

Advancements made in the treatment of cystic fibrosis have come a long way in the past 50 years. Clinical trials, of which my son is about to begin participating in, are common for people with cystic fibrosis as new treatments and drugs are consistently being developed and pushed through the pipeline. Unfortunately, those on Medicaid cannot participate in these trials. I can only imagine, should this proposal pass, this would be the expectation. Without constant progress, who then, would lead in drug and treatment development? What nation would take our place as leaders in high quality medical care?

Socialized medicine, almost certainly, would lower a cystic fibrosis patient's already too short life expectancy of 37 years. At the very best, it would stay the same. I want to be able to look at my son in 5 years and honestly say, "Samuel, when you were born, the life expectancy of someone with your condition was 10 years less than it is now. We've come a long way!"

If you're looking for health care the working family can afford, this isn't it. This is the plan we can't at all afford.

To view Erica's blog, please click here or go to thekelleys119.blogspot.com. Remember, keep all comments constructive and respectful. This is a chance at some open dialogue between people who will be directly impacted by new policies formed in the Health Care arena.