Washington Days 2012

Washington Days 2012 was held from March 8-9 of this year. What is Washington Days? It is an event that NHF puts on every year that is de-signed to get people in the bleeding disorders community to Capitol Hill to raise awareness of bleeding disorders and the issues that affect us. Most chapters send one to two people to represent their state, and if you have not ever done this, I would encourage you to go. It is one of the most empowering things I have ever been a part of. If we do not let our representatives know about hemophilia, how will they learn what we need? As I say a lot, I believe Hemophilia is one of the greatest gifts I was ever given, because there are so many things like this that I have been able to be a part of.

This year, our group, had a young man from San Antonio, named Patrick, with us. He is only 22 years old, and as I told Patrick, very few people his age have ever had the opportunity to experience something like this. Just think how much this will mature him and maybe even give him a kick start into his professional career. Parents, please get your kids involved and you will see them excel like never before with so many of the things they can do in the hemophilia community.

So, what did we lobby for this year? Because it is election year, it was pretty quiet compared to other years. This year we monitored several items in the healthcare reform act that, if it is somehow repealed, would affect or jeopardized things we have fought for. We talked about things like lifetime caps, preexisting conditions being exempt, the age 26 law (which says kids can stay on their parent’s policy until age 26) and the po-tential of an exchange insurance system in 2014, which is supposed to make it easier for people with a chronic disorders to obtain insurance. The good news that we heard from all of our appointments was that the things we really need, both parties agree on. So, I do not think the things we have gained from healthcare reform will go away! The Supreme Court is now debating about whether the Individual Mandate portion of the act is constitutional or not, and that will determine a lot of how healthcare reform matures into more of a reality.

Now we citizens will just have to wait, because they will not be making a ruling until June at the earliest. Why is this Individual Mandate so con-troversial? Well, a lot of people just do not like the idea of the government telling them that they have to purchase anything. But, the simple fact is that the government already tells us what we have to do in many areas of our lives. Whether you are against being forced to buy insurance or not, you must agree something has to be done or we will never get this insurance problem fixed. Right now we need more people buying insur-ance plans so that it will spread the risk and keep premiums affordable. But, what is happening is there are a lot of young people (between 21-30) that are “healthy” that are not buying insurance. Yes, there are people that indeed cannot afford insurance, but many of the young people can afford it, but instead choose to buy other wants…like a nice car, trendy clothes or the latest must have tech toy. They do not want to make the necessary sacrifices it would take to buy insurance. But what people do not understand is that everyone, with or without insurance, gets treated at the emergency room…so, who ends up paying for those that do not have insurance? People with insurance do. Especially, people like you and I that have to pay very high insurance premiums due to our bleeding disorder…we end up paying for the people that choose not to b

uy health insurance at all. They just “risk it” and hope that if something happens the hospital and/or government will take care of them. It is like buying homeowners insurance, you might pay for it for 25 years before ever needing to use it, but when you do need it, it is there. The more people who buy insurance, the more affordable it is. You c

ould also compare it to states forcing you to buy auto insurance to drive your car. Some say if you don’t want to buy car insurance then do not buy a car, so, if you do not want to buy health insurance do not expect to be accept-ed at the emergency room. Honestly, it is pretty hard to live in most cities in the U.S. without a car and it is pretty hard to just live without some day needing hospital care too.

Hopefully, this information was helpful to you, and I implore you to at least once go to Washington D.C. or at least your state capital and learn how

our political system works. It will make you feel much more a part of the system that governs you and if you ever need some big help with the state department or U.S. government, you will at least know where to start. I will keep you up to date on what is going on with Healthcare Reform, so stay tuned and live well!!


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