Saturday, August 22, 2009

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 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.

16 people had something to say...:

Natalia Ritchie said...

Glad you posted this Ronnie!

I am not an American, so I cannot speak of the system that you have. But I have say I faw things about the Canadian system. Toronto has one of the best CF clinics in the world. I go to the clinic as much as need to, right now it's once a week. My doctor speaks all over the world, including the US, I have access to all the newest drugs, medicine, and care avaiable. Now I am getting a transplant at THE best place in the world (where transplants started), The life exectancy is the same for CF as the US and leading in post tx, and the fact is I have never seen a bill. Ever. So as much as I understand fear of such a reform, it can be done. We cannot assume that equal care for everyone, means worst care. Clearly that is not the case in Canada.

Thanks for posting a great topic Ronnie!

Anonymous said...

Hi Erica! I definitely respect your opinion and I too have great insurance through my husband's employer. On the other hand, have you thought about what will happen if your husband lost his job or even what will happen when your little boy grows up and is no longer covered under your husband's insurance? Before my husband started at the job he has now we had a terrible time trying to get me insurance. I do not qualify for Medicare because I don't have enough work credits, yet if you have any assets ($3000 which includes cars, savings accounts, etc) at all you can not get Medicaid. What is a cfer to do? No way could I afford private insurance on my own with my preexisting condition. Therefore, my husband had to give up his dream of becoming a dentist and go straight into the workforce after graduating from college just so I could have health insurance.

Another point is that you say that people wouldn't go into bankruptcy if they would plan for medical problems in advance. But do you know that insurance companies can change your policy at the drop of a hat. I just received notice that in January my copays that were normally $50-$80 would be changing to 30% of whatever the price of the med is. Could you afford to pay 30% of $10000 pulmozyme every 3 months? Even if I set money aside there is no way I can afford that and still be financially stable. I had really good insurance too--but that can change at any time and I promise you it will happen to you.

Please think about those that are not as fortunate as us--yes we may have great coverage (now), but there are others that do not. I feel like it is my responsibility to fight for them too. There could be another little boy with CF just your son's age who doesn't get all the wonderful health care you describe just because his dad was not blessed with an awesome job with awesome benefits. That is why I feel like there needs to be a different option. Not because I need it, but because there are others out there that do.

Thanks for you taking the time to share your opinion! That definitely does take courage!
gingerloveslife @ cf2chat

Mary ElizaBeth Peters said...

Thank you for posting your view, and I look forward to posting my formal opinion on later this week. You have inspired me to write my counterpoint sooner than I thought I had time to.

I respect your opinion and of course the sacrifices you and your husband have made for your child.

However, I am struck that most of your opinion of security in your health care rests on your employee-based plan, and that you made not have considered that this same plan will not be guaranteed to your son the day he reaches the age of 18, 21 or 25, depending on what your plan defines.

One of the aspects of the current bill put to congress is that is requires insurance companies to guarantee coverage to dependents to the age of 25, which will be good for your son.

Also, I wonder what financial situation your family would be in if, Heaven forbid, your husband would lose his job. I also wonder if you have yet had any struggles in getting care paid for for your son. I hate to be so definitive in telling you this, but you will simply not always have a health provider that is so agreeable to paying for your son's care. I have never met a CF adult who didn't have to fight a good battle or 10 for their care with a private insurer.

Right now, you are forced to stay under the care of whichever health insurance company your husband's employer chooses. If they start denying Samuel's care, you will be just like an uninsured mother, fighting the good fight against a system that does not value your son's life the way that it should.

There are not enough legal protections for you to be ensured that your current health insurance situation will not change tomorrow. People on the side of care for ALL Americans, simply want to ensure that there are.

Thank you,
Cystic Gal, Mary ElizaBeth Peters

Anonymous said...


You're my hero. I keep hearing from people with insurance how things don't need to change. What happens when they lose their insurance? Not to mention as you say, co-pays keep rising.

Anonymous said...

Why oh why is everything related to government bad in the states?
I come from Denmark and have a 2 year old with CF. Our care in Denmark is among the best in the world... With a life expectancy in the mid forties and growing by the minute.
My doctor told me a the time of diagnosis, that I could start to plan my sons retirement at age 67 because he would most likely need it *LOL*. In other words my son is today expected to have a full and happy life not to be cut short by CF.
And in Denmark healthcare is free! We pay over our taxes and I won't have to spend a dime until he is 18, the funds even cover additional cost as extra food and washing of sweatty clothes. When he turns 18 there is a nominal copay of approx. 600us$ every year, so very affordable. Should he need a transplant it's free too.
Eventhough its free the standard of care is exellent he is seen as often as we want/he needs, a minimum of once a month for cultures an a general checkup.
If at one point he will need to be admitted either me or my husband will have a government paid leave to stay with him for the duration and is it seriuos we will both have a paid leave to take good care of him.
So yes I pay approx. 40% of my earnings to the government but I recieve so much:
Free healthcare
Free schools, including universities
Free schollarships to all for universities
Free care for the elderly (and free retirement homes)
Very cheap daycare for my children
Very cheap unemployment insurance that will sustain my familly for 4 years+ should I loss my job
One year paid maternaty leave for each child
and so on and so forth...

You may call this socialist but it works, hell I can even get free LASIK to fix my nearsightedness sould I want to!

Samuel's Mommy said...

Thanks for posting your opinions. I respect your side and appreciate your comments and perspective.

Yes, I have considered what will happen when:

a) Samuel wants to go to college but we won't be able to afford it because we've spent his college savings on co-pays and other products and services not covered by our private insurance.

b) Our insurance policy changes, just as our credit card terms change. When it happens, I'll call them again.

c) With all due respect, people give up their dreams all the time to do what's bets for their family. Life isn't fair. If it was, I wouldn't even need to be writing this.

I'm shocked at your faith in giving the government control of health care. How would that eliminate the need to fight "the good fight against a system that does not value your son's life the way that it should." Do you honestly think the government will value YOUR life in the the way it should? Just wondering.

Mary ElizaBeth Peters said...

Thanks for your thoughts, I'll address them on my blog in the coming days so that we leave Ronnie's comments section open for everyone.

Anonymous said...

Well, with all due respect have you thought about what you will do when your insurance company stops valuing your son's life like it should? It may only be a matter of time before they realize they can't afford to keep covering your son just like is with the case of my insurance. Furthermore insurance companies are for profit, while a government option will not be. But you are right, it stinks in both cases that our life is in the hands of someone else whether it is a private insurer or the government. I just have trouble with the fact that some people are not blessed with private or government controlled insurance--That is who I am fighting for.

gingerloveslife @ cf2chat

fondasue said...

Erica, I think you are on to something here. The problem is access to health care under the new system.

First, no health care is free. Somebody pays for health care, whether through a federal program, or through private insurers. The U.S. government already provides for about fifty percent of health care coverage in this country.

Second, the United States was built on capitalism, and with universal health care, removing the provider's incentive to provide health care would send our current system into a tail spin. Remove the incentives, and same day service could be a thing of the past.

I am a health care professional, and believe me, every item we purchase for our department is carefully examined for the best price and the best quality. Relinquishing our control to the government with the expectation that optimum efficiency will be provided, I think, is just not a reasonable expectation.

Thank you, Erica, for your post, and for having the courage to address this difficult subject.

Thank you, Ronnie, for providing this forum for excellent dialogue.

Anonymous said...

With all due respect, what about when Samuel is 21 or 25 and has to give up his dreams so he can have a job with health insurance?

Anonymous said...

The thing is..the american system can be reformed,and a capitalist country CAN have a socialist medical system,without raising taxes too much and penalizing working class families.Here(canada)companies pay into our govnts programs instead of into private companies.Goods and service we buy pay into it as well.If youre lower get that money back.The person in my life who had CF had medical expenses,but the drugs,the transplant,the hospital care...all covered.NOT ONE BILL.In my opinion I would rather sacrifice a bit save my loved ones possible financial ruin years down the road.Its a wonderful feeling to know what when youre sick,you get what you need,and at a care level thats as good as anywhere else.I dont like Obama,but I do love his healthcare plan

Andy said...

Wow, so many comments to which to respond.

First, the person who wrote "you can be a capitalist country and have a socialist health care system" must not have a clue about what both systems are about. Capitalism is the function of an economy where the government plays a minimal role, whereas a socialist economy is where the government plays a domineering role. By definition, you cannot have both.

Second, if Canada's health care system is so grand, why are there so many folks coming here to the US for health care? Well, probably because they're tired of waiting for treatment they can get in a fraction of the time here in the US. See this article from US News:

Next, Americans and Canadians are different in that we simply DON'T WANT the government interference in our lives. If you like the government telling what you can eat or drink, keep it to yourself. But frankly I don't want some fat slob of a senator, or a President who smokes, or an obese surgeon general telling me what's good for me. I'll decide what's good for me and they can piss off! We don't want these people who "know better" deciding what we can eat, what we can't eat, what we can do, what we can't do, and so on. They can eat crap. Besides, where is it written in the Constitution, or the Bill of Rights, or the Declaration of Independence, or any other founding document that they have the Constitutional right to run our lives? It doesn't say that anywhere. In fact, the Constitution provides only limited rights for their interference in our lives at all. We're *NOT* a socialist country.

Concerning government "insurance". There is no such thing. How can the US government, which is in debt to the tune of $56 TRILLION dollars (yes, you read correctly - $56 TRILLION dollars) afford to pay for anything?! They can't. But even if they could, their blank checks won't solve the problem.

The cost of health care will be lowered when we open the market to competition. Currently, people use health care services with no regard to cost, mainly because they're not the ones paying the bills -- the insurance companies do that. So, when you go to the doctor for a checkup, you have to file an insurance claim. By definition, this is not insurance. Insurance is when you have to pay a great deal of money for things you don't anticipate happening; for example, being in an accident, crashing your car and needing to replace it. Since there are no market forces (i.e. people don't pay much for the services they use) people use the services they think they need, file claims for check-ups, etc and voila - prices are through the roof. Now, suppose the government is paying the bills. Do you think medical care providers are going to lower their costs, knowing the government is going to pay them?! Not quite! When people assume a greater responsibility for their health care needs, more than likely they will use fewer of those services, which will reduce demand, which will reduce costs.

As for Erica's case, medical insurance *should* cover the case of her son; again, this is the definition of insurance -- covering the high cost of something you do not anticipate occurring. I'm sure her husband and she did not expect such massive medical bills when their son was born. Please note the distinction; medical insurance should NOT cover day-to-day, routine check-ups, etc. But the case for Cyctic Fibrosis treatment is neither day-to-day nor routine. This disease is a special case and was unexpected, which fits the definition of insurance perfectly.

Finally, please take the time to read a discussion on the matter from Arthur Foulkes, who provides an excellent discussion on how insurance laws actually drive up the cost of medical treatment:

Scott said...

Here's a simple cartoon/illustration that illustrates why health care needs to be reformed.

Jack Stone said...


Oh Scott, you are so brilliant. If only I had known all that before. Why, I didn't know if we just SPEND MORE MONEY, suddenly we're all going to be better. Hey everybody! Scott says there will be no more sick people if we can just get our government to SPEND MORE MONEY.

Seriously, you come here and post some dumb cartoon, produced by a civics flunky to explain why insurance companies are so evil? Tell us, Scott, are insurance companies supposed to operate in the red, just like the government, just so we'll all suddenly be "better"??! And what's the relationship between profits and wellness, anyway? There is none. So your stupid cartoon that says we'll all somehow be magically better again, just because our government (which is in debt to the tune of $58 TRILLION dollars) takes over the medical industry, is really nothing but complete farce and a misunderstanding of reality.

Not that facts matter to you, Scott, but 85% of Americans are HAPPY with their medical health insurance. So you're trying to tell me that we're going to takeover a $1 trillion industry, run by a government that can't run the VA hospitals, and that will fix the problems?! Don't piss on our legs and tell us it's raining, Scott! This worthless bunch can't run the VA hospitals, they can't run medicare, they can't run any of it! THEY ARE BROKE. Do you hear me?! BROKE!!!

Open your eyes, cartoon boy. This is a move by Obama to take over yet another industry, just like he has done with the automotive, insurance, banking, mortgage, and other industries. WE WILL NOT TAKE IT. If you want government health care, go to Canada. Go to Britain. Go to Denmark. Just go away. And take that sucky piece of crap youtube video with you when you go.

Anonymous said...

I would disagree that you cant have a capitalist country without some socialized programs. We have been doing this for many decades now. There are many socialized programs in place for the misfortuned, children and the poor. Yet, we are still the wealthiest "superpower" in the world, and have a thriving free market.

While I agree that we are in a deficiet and in hard times, I would argue that everyone is paying for everyone's healthcare anyway! The uninsured cant pay their bills when they get sick, and the hospitals have to forward those costs on to the rest us who have it in some way. Hence, our premiums keep on going up, and copays on expensive drugs keep going up.

I today's world, if a person w/CF or any other expensive illness applies to the rare small company that provides health insurance, dont kid yourself that small company will find how much their premiums will go up if they hire that person. Chances are pretty good he may not be hired. Good luck proving discrimination.

If you think your insurance company cares about you and your health, I think you might be kidding yourself. They are big business, and by that definition designed to make money-that's it. Not one of those CEO's has to look you in the eye and deny you or your child the drug or transplant or care he/she may need to survive. Someone on the phone or by letter gets to tell you that. Its inhumane. I have heard that some CF medications that have been covered by some insurance in the past are slowly being cut because they are too expensive and considered "specialized" and therefore they dont have to reimburse.

I would say that gambling on people's health for profit in inherintly wrong and immoral, and someone will get screwed in that senario, and it will be the sickest among us, the people that need the care the most.

I would rather give my money to a non-for profit organization or in my taxes to have the knowledge that I am not only guaranteeing that my son will always have the care he needs, but that you or your child will have it when you need it or whoever else maybe struck by a car or gets cancer or have something else catastrophic happen to them. I would rather know my hard earned money is going toward bettering lives of all people than lining the pockets of millionaire CEO's in insurance companys that do nothing to in any way to better the care of anyone.

Anonymous said...

Message to Jack Stone....
I don't think there is any need for personal attacks. Scott posted something that summed his beliefs. He didn't call Erica's post or opinions 'stupid' like you do in your rant. You don't know his situation. This a blog on a CF related website. As stated in Scott's video health care is essential. I think most people would agree with that. For CF Families it's the most essential thing in our lives. I would rather have healthcare for my son more than anything in the world. I can figure out how to feed him, cloth him and take care of his basic needs but without health care he could not continue. It's people like you that give your cause a bad name.

With that being said, I'm not sure where I stand on the issue. As I stated earlier my son has CF I am happy with his current care. But that care is heavily subsidized by the state we live in. I guess that's already a form of socialized medicine? No complaints so far....

I am also happy with my personal private care but am not happy with the costs. My company and I contribute roughly $15k for our plan. I find that absurd.

I do find it interesting that a majority of people who live in countries with 'socialized medicine'seem to really like their health care. Life expectancies are the same or greater than the US. I'm sure it's not perfect but neither is ours.

Oh and Jack, like it or not, some form of government healthcare will be implemented in the US in the near future and your taxes will be raised. So in the end you may be the one who needs to 'go away'. Make sure to write from your new place where the government isn't worthless and broke.

Best of luck to all.