Six years ago, my cousin and his wife learned that their daughter, who had just turned 1, had a tumor on her liver which had metastasized into her lungs. She needed chemotherapy to get the cancer in her lungs, and a liver transplant. She went through many rounds of chemo and once all the cancer cells were gone from her lungs, she was placed on the transplant list. She was blessed to receive a new liver, and when they removed the old liver, they found the tumor was taking up 3/4 of it. Just the transplant alone was over $1,000,000.00. (My lifetime maximum on my current policy is one million dollars.) They were blessed to have excellent insurance through his job at Nintendo. After some time, the cancer came back. She had to go through chemo again. The chemo destroyed her new liver and she was once again placed on the transplant list. She received another liver. My cousin found a job in Utah and began working for the state. He is now working 2 jobs, his wife is working 1, and they have placed their little girl on Medicare as a secondary insurance to help with the costs of her ongoing treatment, as she will always be monitored closely. He is working 2 jobs just to pay for the costs of her medication. She becomes resistant to the medications after time so she must always be on the newest medications out there. The insurance companies wont cover those medications, even though they are the only ones that work. So he works two jobs and sacrifices every day so that he can keep his precious little girl alive and well. This is a VERY condensed version of the story, but this is only one of the stories I am going to share.
My uncle has cystic fibrosis. I am posting the definition of cystic fibrosis for those of you who aren't familiar with the genetic condition.
What is cystic fibrosis?
Cystic fibrosis (CF) is an inherited disease of your mucus and sweat glands. It affects mostly your lungs, pancreas, liver, intestines, sinuses, and sex organs.
Normally, mucus is watery. It keeps the linings of certain organs moist and prevents them from drying out or getting infected. But in CF, an abnormal gene causes mucus to become thick and sticky.
The mucus builds up in your lungs and blocks the airways. This makes it easy for bacteria to grow and leads to repeated serious lung infections. Over time, these infections can cause serious damage to your lungs.
The thick, sticky mucus can also block tubes, or ducts, in your pancreas. As a result, digestive enzymes that are produced by your pancreas cannot reach your small intestine. These enzymes help break down the food that you eat. Without them, your intestines cannot absorb fats and proteins fully.
As a result:
- Nutrients leave your body unused, and you can become malnourished.
- Your stools become bulky.
- You may not get enough vitamins A, D, E, and K .
- You may have intestinal gas, a swollen belly, and pain or discomfort.
The abnormal gene also causes your sweat to become extremely salty. As a result, when you perspire, your body loses large amounts of salt. This can upset the balance of minerals in your blood. The imbalance may cause you to have a heat emergency.
CF can also cause infertility (mostly in men).
The symptoms and severity of CF vary from person to person. Some people with CF have serious lung and digestive problems. Other people have more mild disease that doesn't show up until they are adolescents or young adults.
Respiratory failure is the most common cause of death in people with CF.
Until the 1980s, most deaths from CF occurred in children and teenagers. Today, with improved treatments, people with CF live, on average, to be more than 35 years old.-------------------------------------------------------------------------------------------------
My uncle is 54. He worked as a chemical engineer until they decided he was too sick to continue working and the company forced him into long-term disability, which happened when I was only 5 or 6. He has saved his entire life to be able to pay for a lung transplant someday, which he was fortunate enough to receive a few months ago. He has insurance, but with our current system, it isn't enough.
I have poly-cystic ovarian syndrome, endometriosis, and non-classic cystic fibrosis (which was the cause of my pancreatitis along with a list of other problems that are CF related). Last year, I turned 26 which meant that I could no longer be on my parents insurance. I was engaged to be married, but at the time my wedding date was August 8, 2008. So for 6-months I would be left uninsured. For me, this is not an acceptable option. I wasn't working, as I was going to school at the time and my fiance was supporting both of us. We looked and looked for an acceptable insurance option, but I was told more than once that I was "uninsurable" on an individually underwritten policy. I also learned that while there is a pre-existing condition grace period of 60 or 90-days when going from group policy to group policy, the same does not apply when going from a group policy to an individually underwritten policy. We moved our wedding date up to June 6, 2008 and decided that the best option would be for me to go on Cobra until we were married and I could get on his policy. I was blessed to have family help cover the exceptionally high costs of Cobra for 3-months, as BJ and I could not have done so on our own.
It was very lucky that we did that, as we discovered on April 4, 2008 that I was pregnant with our first child. However, I was uninsured for 5 days - which I was not aware of at the time, I thought the coverage ran through the 5th of each month, that was not the case. During that 5-day period of time, I had some pre-natal testing done. The costs of the one day of tests for me, because I was not insured and thus had no price negotiating power, was over $1300.00, which I am still paying for. In November, I gave birth to a beautiful baby boy. My cost for that was $1500.00. In January, I was rushed to the hospital in an ambulance as my oxygen levels dropped to 65 (anything below 90 is considered bad) and I was turning blue. I am still paying the out of pocket medical bills for that as well. This may not seem like a lot to some, but when you are working on a single income to raise a family, this really adds up. We blew through all $1500 of our flex spending by May of this year and we still have well over $3000.00 in medical bills that we are making payments on.
On August 28, 2009 my husband was laid off from his job, as his company decided to save money and outsource their IT department. I am currently 4-months pregnant. It has already been established that I am uninsurable under the current system. Because I am pregnant, I will qualify for Medicaid when the severance Cobra runs out; however, I have never been on state assistance for anything and would prefer to have an option to actually pay a reasonable premium for quality medical care. And then what will happen after I have the baby if, God forbid, my husband is still unemployed? Will I be able to stay on Medicaid if we can't afford to continue Cobra? These are things that worry me deeply.
Obama recently passed a plan to help make Cobra more affordable, and I thank God that he did so. Without the discount associated with the Obama plan, our monthly Cobra premiums would be $916.00 a month, with his discount it is down to $320.00.
We are praying that BJ is able to find a job quickly. He is intelligent and excellent at what he does, but the pregnant woman in me is preparing for the worst case scenario. I am now one of the millions in this great country that could be without insurance. That seems unacceptable to me. Not just for selfish reasons, but for all of those other people out there who face similar circumstances.
I have worked in the insurance industry. I know how inefficient the system is. I know how often claims are denied for the silliest of reasons. We desperately need reform with a public option of some kind. There needs to be competition out there. There needs to be change. We cannot continue the path we are on. One of the leading causes for bankruptcy in this country is medical bills. As a nation, we love to say how we are the best, the greatest, the most prosperous nation on earth. Yet how can a great nation leave so many without affordable health care? I have heard talk of subsidies and vouchers, but that does not come close to making health care affordable. The average person has no idea of the cost of any procedure or office visit prior to the visit. We cannot make informed decisions on our own. We do not have negotiating power to lower prices. The insurance companies do not pay the amount billed, they have a contractual agreement with providers which lowers prices. The uninsured do not have this option. What does one do when they can't afford the premiums to get on an individually underwritten policy or when the insurance they can afford doesn't cover enough which leaves them with huge out of pocket expenses?
I know this is an exceptionally long post, but this is something that I truly believe in. This is something that I feel is so important for our country. I believe in personal accountability, but I also believe that it is wrong to allow people in this country to suffer and die because they can't afford health care. Many still get health care, but the cost is passed on to those with insurance by increased costs for medical care. It is easy to be disconnected from this issue, it is easy to say "well I'm healthy so why should I pay for someone who is sick?" because someday, you could be the unlucky and unfortunate one to get sick. We all pay for Medicare and seniors love it. We should take as good of care for the rest of our citizens as we do for our seniors.