Your Health or Your Wallet? The "Choice" is Yours.

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. To see last week's post, "Health Care We Can Afford? Not Likely." please click here. 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.

This blog post is brought to us by Talana who is "27, married, with CF from Oregon, former teacher, uh uh uh, and I have a lot of fur children, I mean cats!"

To be alive with Cystic Fibrosis at 27 is an achievement to be proud of. But there is only one reason that I’m still here, 27 years later, and that is by the grace of God, I’ve had medical insurance that entire time. It’s never been easy, I’ve compromised my health to keep it, and I’ve spent more hours fighting with them through mail and phone than I’ve spent communicating with close relatives. These, and countless other reasons, are why I’m a strong advocate in having every single American insured, despite their health, work status, and the blows that life has given them.

My first brush with insurance denying vital care came when I was only four years old. After my diagnosis, I enjoyed good health. All I needed was the occasional oral antibiotics, the “thumps” of cpt on my chest by my parents, and my ‘”zymers” with food. Then I came down with a severe case of appendicitis. Hospitalized for a week, after an extensive surgery to remove my appendix, my parents counted on their insurance to help pay for the cost. Months went by, then a year, without a bill, and they figured that the insurance paid for my procedure and stay in full. Then a bill arrived… for the full amount. Not a single penny covered by my insurance. Why? Because they determined that my appendectomy was a pre-existing condition of cystic fibrosis. A blatant lie, as the two are as unrelated as an iguana is to a monkey, but they decided that they were not paying for it based on that. Also, I had been covered by insurance since birth, which should have exempted me from the pre-existing condition issue entirely. It was only after demanding the name and medical license number of the doctor at the insurance company did they decide to pay for my bills in full. The insurance company tried to use a 4-year-old girl to make a dime, lying by doing so, and it was only the vigilance of my parents that stopped such a gross abuse.

My childhood memories are also colored by worry over paying for my care. Neither of my parents have a college degree, but my father made a good living, working in the lumber mills, something that is a deep tradition in my family. My mother stayed at home, tending to my sister and me, as well as medical needs. Then the bust of the timber industry rippled through Oregon. I watched the fear in my parents’ eyes as my father lost his job. Not only were they worried about how to put food on our table, but they also had great fears because if I went without insurance, I would never be able to be covered again by a private insurer. Thankfully, we always found a way to keep me covered, but the pain and the struggle was not something that any family should ever face.

I went on to college, knowing that once I graduated, I would be on my own for care. I didn’t qualify financially for any state coverage in my state, so I knew I would have to have a job that offered care, and I began looking for such job when I was only a sophomore in college. I found a retail job that offered insurance if I could work 24 hours a week at minimum, but many weeks it came much closer to forty hours, in addition to being a full time student. My senior year I started my student teaching. I was leaving my house at 6:45 in the morning, teaching all day, driving an hour to work, working nearly six hours, arriving at my home at 11pm, so I could lesson plan and sleep. My care for my CF went totally by the wayside as I simply didn’t have time, but I also didn’t have any choice. If I stopped working, then I would not have coverage in a few short months, a death sentence for a CFer. If I stopped student teaching, I would lose my scholarship, owe money to my college, and watch my dreams go up in smoke. I was forced to literally work myself to the bone, in the name of keeping insurance. Nobody should have to do that, but it goes on everyday in this country.

Insurance companies are also far more concerned about making money than they are taking care of subscribers. Our current system locks you into whoever you get through your employer. Competition would be an amazing thing for our market, but doesn’t happen, so they get away with whatever they want. Over the years I’ve had them deny several drugs, some of them after several appeals, charge several thousand dollars for a year of drugs, a piece of medical equipment, or a hospital stay. All of these charges after my premium was paid, my deductible met, but still, it was more and more money bleeding out. I have triple digit copays on more than one of my medications. My vest, which helps me clear the mucus choking out my lungs, was only covered at $5,000 of the $16,000 cost. Without a grant, I would not have my vest. Every time I’ve gone into the hospital the last several years, I know that a $1,500-$3,000 bill will be waiting for me… believe me, I’ve held off going into the hospital because I knew I couldn’t afford it. My choices in my care should not be made by my pocket book, but they are, all the time. I haven’t even began to mention the struggle it took me under more than one plan to get my pulmozyme or tobi, or under another plan my azithromycin.

My story is not unique, sadly it is very common. I have married friends right now living hours apart, one working to keep their insurance, the other taking care of an elderly family member. They don’t have a choice, because they need to keep the insurance. I’ve watched friends not get married, because if they made a bit more money they would lose their government coverage and not be able to get access to care. I’ve watched others stay in loveless marriages to keep insured. I almost had to marry a friend to get on his insurance once, but met the love of my life and married him. I didn’t get my dream wedding because we got married as soon as we could so I could get on his coverage and stop paying over $600 a month in COBRA insurance because my retail job, that I worked so hard to keep, decided to stop offering insurance to employees, leaving me in a lurch, both with insurance and financially. I still made too much to get any state or federal help and I didn’t qualify for other programs because I had the option of COBRA. Without the help of my parents, I would not have made it through that very dark time. Even with their help, I often rationed care, not buying vitamins, not going to the dentist or the eye doctor, because there was no way I could pay.

I have several friends right now who are too sick to work, but continue to do so, because it is their only way to get insurance. They qualify for disability, but can’t take it, because they can’t wait two years for Medicare to start covering them. That’s right… you are too sick to work, but you can’t get insurance for two years. If we had a public option, the pre-existing condition was struck, and fair pricing despite level of health, my friends would be able to focus on their health, but instead they have to continue to compromise it to stay alive.

When I talk to friends in other countries, they all have said the same thing. “I would never trade my care for what you have to deal with in the US with insurance companies.” That to me says it all about this debate. People just as sick as I am are not scared of how they are going to pay their bills. They focus on their health. I’ve watched friends go through expensive procedures like lung transplant, and their care wasn’t rationed, like so many talking heads would like you to believe. Yes, non-emergent care may have to be waited for, but it is here as well. But when you really do need care? You get it. My CF friends went into the hospital when they needed it, they got their drugs without having to play phone tag with a nameless insurance person for hours. They didn’t have to have their doctors send countless letters documenting why the care was needed. Doctors focus on healing, patients focus on living… a utopia in my mind.

Lastly, I don’t understand how any human can look at another human and say, “you don’t deserve care because my health is more important.” My health is just as important as every other person, and their health affects me. If they don’t go to the doctor for a bad infection, because they can’t pay for the visit to get a few dollars in antibiotics, they could get me sick. The hours long wait in an emergency room filled with those without insurance affects me… filled with people that had a simple UTI turn into a bladder infection. Filled with those who have care, but couldn’t afford a co-pay or worried that taking a day off of work to tend to their health would cause them to lose their job, then in turn cause them to lose their insurance. The every growing number of bankruptcies because of medical care affects me, from rising interest rates on loans and credit cards, to less interest on my savings… and I was nearly one of those that became bankrupt had it not been the intervention of my parents.

We need to strike all pre-existing condition clauses. We need to make sure everyone is covered, from day one of life. We need to make insurance companies compete for business instead of lording the fact that they are the only choice over subscribers then dropping them when they become too expensive. Lifetime caps need to be abolished. Runaway out of pocket costs have to be reined in. Food or drugs should never have to be a choice. They only way I see this happening is if there is a government option, one that forces insurance companies to start actually insuring rather than stuffing the pocket books of their executives, shareholders, and lobbyists.

P.S. – This was written during another day of “health in America” from my trip to the pharmacy this morning, where I had to refuse to pick up several drugs because they are going to be cheaper through mail order under my new coverage. Written while answering my phone four times to speak with the clinic that is doing my sleep study tomorrow, trying to figure out my insurance, and what will be covered. I now get to call the insurance company and find out how to transfer my deductible that I’ve already paid this year to this new coverage, write a check for the uncovered part of my sleep study tomorrow, and wait for the next shoe to drop, and wonder if this time my choice will be my health or my pocketbook.

To view Talana's blog, please click here or go http://talanaf.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.

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.