Last May I participated in Brain Tumor Action Week in Washington DC. I received training from the North American Brain Tumor Coalition in how to lobby congress. We visited our Senators and Representatives just before Lance Armstrong and Elizabeth Edwards testified before full congress. Our part was to encourage our senators and representatives to do three things. The first was to end the Medicare waiting period for people who are declared permanently medically disabled because of diseases like cancer. Right now it takes 2 years after a person becomes permanently medically disabled for them to qualify for Medicare. The financial results are often disastrous. The second thing we asked is that May be declared Brain Tumor Awareness Month. The third was for a 6 percent increase in funding for the National Institute of Health (NIH), which has not had an increase since 2002.
When I went to talk with Senator Feinstein’s and Representative Richardson’s health aides, I told them about a friend of mine who was recently widowed. Her husband had succumbed to Melanoma. She was left with substantial debts. The sting of that reality recently hit home again.
I started off Monday after getting back from the LIVESTRONG Summit by signing papers to refinance the house. We’re grateful that we still have a house to live in 3 ½ years after my brain cancer diagnosis. I had some problems with the necessity to draw on what is left of our equity, especially after the housing market has tanked. The fact is, it became necessary. Like most people that find themselves in our situation, we weren’t able to keep up with the bills without accruing some debt. Fortunately we had equity in the house. Hopefully all is set right now. I am still grateful for what we have, but this was a tough pill to swallow.
While I will avoid sharing dirty laundry on this blog and will keep the focus of my communications positive and proactive, I want to share these details from my life to illustrate that cancer has a huge financial footprint. One in two men and one in three women will experience cancer at some time in their lives. If you don’t get it, you will almost certainly know someone who does and may end up being a support person.
I was lucky enough to have income insurance that provided us with a financial foothold when things got slippery. I’ve got 60% of my 2005 earnings, including Social Security Disability and what my policy pays. It has been tough making things work, but somehow they have. Thank goodness I wasn't the only income source in the house. I was able to get Medical to help us through the two year Medicare waiting period. It was a fight. I had to learn a whole new skill set, but eventually I got covered. We were lucky to be California residents. Many other states don’t have this kind of a safety net. If we hadn’t had that, we probably would have lost the house by now.
I strongly encourage anyone who reading this to call our write your Senators and Representatives and make sure they support ending the Medicare waiting period for people who are medically totally medically disabled. I hope you will also encourage them to support increased funding for the NIH. Research to end cancer and many other serious diseases has been slowed down considerably by the halt in funding increases that has occurred during the Bush Administration. On and encouraging note, May has already been declared Brain Tumor Awareness month. With Edward Kennedy’s unfortunate diagnosis, things began to speed up moving in the right direction.
Finally, if you are working and you haven’t already invested in a long-term disability policy, and there is any way you can afford one, they are worth the sacrifice. If we didn’t have that policy, we wouldn’t still be in the house at this point. So this week began with a lesson. I learned it without whole lot of joy, but I’m again trying to remember to be grateful for what I have.
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