Recently I've had the opportunity to learn a lot about how the new Health Care reform will affect my family's situation. Unfortunately, there is still more to learn and that will require going through the motions to gain that unwanted experience. Before I share more you need to know more about our story.
In May of 2008 my oldest son Brisan was 3.5 years old. Parker was 2 and Duncan was barely approaching six months of age. As long as we could remember Brisan always had a runny nose with sinus problems along with a learning disability, enlarge liver and spleen. We were having surgery that month to remove his tonsils and adenoids and felt by electing to do this surgery that this could provide some relief for him. Now keep in mind, he had far bigger issues brewing but at that given time they had diagnosed him with several things that didn't quite seem to fit him to a tee. Something wasn't right. The diagnoses wasn't “fitting”.
After surgery was done they sent his tonsils and adenoids off to pathology which is normal protocol. What jumped out to the doctor was these white foamy macrophages on the tonsils and adenoids. Foamy macrophages are indicative of some type of Lysosomal Storage Disease we later found out.
Within the week we were informed that they wanted to do testing for Hunter's Disease, Niemann-Pick Type C, and another one I cannot remember because of their findings. We were told that they were pretty sure it was Niemann-Pick Type C but don't go home and Google it. That is the first thing my wife did and briefly afterwards the worst case scenario came to life instilling panic and fear. It's fatal at a young age.
August 8, 2008 will be remembered for the opening ceremonies of the Summer Olympics in Beijing but in our minds that is the day absolute reality set in. We received a phone call from the doctor asking us to come in later that day. Typically the doctor themselves do not place a call to schedule an unexpected appointment. Without even hearing the answer to the test we knew the answer.
Sitting at the hospital with our family she began to give us the diagnosis and facts about Niemann-Pick Type C. It was fatal, no cure or treatment, and unwavering in its pursuit in destroying the bodies nervous system due to the root cause of the cells inability to metabolize cholesterol. We had a simple question for her: What can we do? Her response was captivating in the sense it felt cold; Take them home and love them the best you can.
A month later Parker our middle son was also diagnosed with Niemann-Pick Type C. He was nearly identical in symptoms but had a much more rough start to life than Brisan did. Duncan is just a carrier of the gene like me and Jennifer are. It takes two bad genes to activate this deadly disease on Chromosome 18. Please visit here to learn more about Niemann-Pick Type C disease more in detail.
Two years later and a layoff in July 2009 forced us to pay COBRA premiums to keep our medical insurance. It was a great plan and we knew that losing it would mean a lot of changes. My new employment was out of state (worked from home) but since I worked out of state I wasn't eligible for their health insurance. Now I wasn't disappointed because the insurance plan was absurd. It would have been going from a Porsche to a wagon. Since then my position was eliminated from that company and now I am essentially self-employed. There are so many benefits minus the health insurance piece.
Obama's Health Care Reform started at the end of September 2010 for pre-existing conditions for children by telling health insurance companies that they couldn't deny for that reason. This was extremely important for our family.
Our COBRA was set to end February 2011 but we had anticipated finding a plan to start in January. Alarming news took place when Jennifer went to get Brisan and Parker's prescriptions that Humana said we were ineligible October 8th. I called and was told that my previous company had closed its doors and canceled the plan! Outraged that we were not informed nor any option to continue the plan I started to put in motion our end of the year plan.
With Brisan and Parker being both non-insurable due to their fatal disease I knew it wasn't going to be cheap. After all we were paying COBRA premiums which was more than our mortgage payment. I mean, it couldn't be more expensive than that right? WRONG!
I completed this week the application with Humana and had to speak with an underwriter because I answered “yes” to some of the questions. I know, shocking right? After her questioning she preceded to tell me that she couldn't deny us coverage but had to rate all three boys 500% each!!!!!!!!!!!! They even were rating Jennifer because she has had some discomfort in her lower back in the recent past. The premiums were over $3,000 per month.
Now they sure can't deny you coverage but they can make it so astronomical that you can't afford to pay it. How is this Health Care Reform? It isn'i doing anything for my family because I am priced right out of the market. I understand that insurance companies are a “for profit” business but they sure knew how they would get around this new law by are good ol' friend Obama.
Next I preceded to contact Missouri's High Risk Insurance Pool division administered by Blue Cross and Blue Shield. You can only apply if your non insurable. If you pick the lowest deducible the cost is $277 per child (Brisan and Parker). It is an 80/20 plan plus prescriptions has a deductible and co-pays to meet. That sure is better than Humana's quote but not ideal because that still leaves myself, my wife, and Duncan without health insurance. Heres the kicker: You need to submit 2 denial of coverage letters with your application. Now how is that possible when the new law says they can't decline children? It won't be the insurance company denying me, it would be us denying them! This appears totally not to be working!
I still think there might be a chance based upon this “eligibility” criteria specified on their site. We didn't end the policy on our own. Someone else decided that for us.
Any person whose health insurance coverage is involuntarily terminated for any reason other than nonpayment of premium or fraud, and who is not otherwise ineligible for this program;
I will need to do more work on this but if they are rating Duncan then having a separate policy is going to be expensive too! In my view point the new Health Care Reform is not working for my family. I don't understand why a bill of this magnitude needed over 2,000 pages to explain what most people can summarize in a few pages. There is a lot of waste going other places that shouldn't be involved in this bill. It's like putting lipstick on a pig…it's still a pig, just call it purrtty.
Brisan and Parker do have MO Healthnet which is Medicaid in Missouri. I won't have time to write another 10 pages about the challenges with that program. It was secondary and supplemental to our private insurance but now being primary will cause a lot of headaches and less coverages.
Obama and politicians alike need to listen to the people and not listen to the bank rolling of the big corporations swaying their decisions. I am just disappointed in how this seems not to be working out for my family. Working another part time job to provide benefits seems impossible with the care needed for two terminally ill children plus a third child. My wife isn't superwoman!