Progress of the Huntington's Disease Parity Act

Well, it seems progress has been made. The Huntington's Disease Parity Act of 2011 has been referred to a committee to determine if it should move forward to the floor in the House of Representatives. While that is progress, it is still not enough. If this bill is not put to a vote before then end of the Congressional Session next year, it will be considered dead and we must start again. That has already happened in the last two sessions of Congress.  The committee never reported on it and so it never went to the floor for a vote.
Both the Senate and the House of Representatives have a bill before committees for approval that will help the many families affected by HD obtain disability funding before it is too late. And since we just got a new batch of paperwork from the Social Security Administration that we must fill out for Bill in the appeal process, this can not happen soon enough.

I have read many different blogs about the devastating financial aspects the disease has on a family. So far, we are lucky that we have a good insurance plan through my company that can drop us because of Robert's diagnoses.  He is able to have a CT Scan done each year for minimal costs to monitor the deterioration of his brain.  He is able to obtain medication that help to slow the progress of the disease and prevent the leg movements that sometimes result in me kicking him out bed. And, as long as I am able to work for the company I am currently employed by, I will be able to provide this insurance.  When it reaches a point where Robert can no longer work, though, it will become a burden to us financially. Fighting with the Social Security Administration is not something I am looking forward to.

Bill is not so lucky.  He is no longer able to work for a wide variety of reasons.  He does not have health care.  He is suffering from the disease more than either Robert or Debbie are. As the oldest, his body has more of the mutated gene running through him and it has affected him. Plus, since he does not have access to the expensive medications that will help slow the progress of the disease, he is at a disadvantage there as well. Robert and I can provide a roof over his head for a time, but we cannot provide him with the doctor's care and the medications he needs.  Without insurance, we cannot afford it.  Plus, there will come a time where he will have to be moved to a nursing home or assisted living facility.  Even if we compiled our resources with those of their sister, Debbie, we would never be able to afford to put him in a home that he could live in and still maintain some since of dignity.

I hope you will join the fight with me and let your Senators and Representatives know how important this bill is and why it must be passed and not wind up dead for the third session in a row.