Last Wednesday was a very important day in the lives of Brain Tumor patients (whether they know it or not). Let's see....where do I begin? About 3 years ago, Daniel (my late husband) and I met a wonderful man named Jack Cullather. Jack heard our story of battling the insurance company for a "wonderful" 11 months (at least) in order to get Daniel down to be seen by the doctors at Duke.
This news prompted Jack to contact some delegates that he had connections with and they proposed a bill that would mandate Insurance companies to allow BT patients to go to comprehensive care centers within 300 miles of their homes. This would mean that BT patients living in Richmond would be allowed to go to either John's Hopkins or Duke University to get second opinions - Both of which are comprehensive care centers (especially good centers for BT research).
Okay, so that is the short version of how the bill came about. Well, last Wednesday was the hearing at the General Assembly in front of the Insurance Commission to try and get the bill passed. I must admit, it is extremly frustrating to go there for these hearings (this is the 2nd one I have been to). I was asked to testify and I did, to the best of my ability, hoping that somehow my story can make a difference. Please pray for this bill and that as the Lord sees fit, it will be passed and allow so many patients to have a chance that right now they currently don't have. If you live in Richmond (or any other place where there is no comprehensive care center), it should be your right to get the best care possible. Some argue that MCV or UVA have the expertise necessary, but those people are sadly mistaken. There is NO Neuro-Oncologist in the state of VA!
When you are told you have a BT, you are given a life span (usually at most) of 6 months. Duke allowed me to hold on to Daniel for an additional 10 months with their treatments. A bunch of healthy people sitting behind desks getting paid way too much, should not be the deciding factor of whether or not you should have a good chance at survival. It is frustrating, I am passionate about it, and we will continue fighting, especially for those that are told they have no fighting chance!
Here is an excerpt of my testimony.....
"My late husband and I have had many friends that have been diagnosed with brain tumors, many of which have lost their battles, only to leave their families or spouses with large amounts of medical debt. They chose to get the best care, where their insurances companies otherwise let them down. I encourage you today, when condisering to pass this bill, look at the bigger picture. I realize that as companies you are striving to create capital gain and run a business, but that is all my late husband was trying to do. Be a normal 25 year old man, run a business, be a loving husband, son, brother, and uncle. In one instant, that all changed. I ask you today to reevaluate your goals as insurance companies, are you out to protect your members or to merely gain financial security? I urge you to pass this bill, to give these patients, YOUR patients, a better chance at survival!"
The voting for this bill has not taken place yet, but when it does, I will let you all know the (positive) outcome! :)
Thanks for the prayers!
Mom w/ Pierce :)
