One Week Down – May 7, 2012

I have now been pulling up for a week.  And many of you have joined me.  Do we remember why we are doing this?  Some are doing it for me, and thank you for that.  But we are also doing it for something much bigger.  We are pulling for a cure – to drive awareness around this horrible disease, which is so debilitating.  Remember the facts from the National Brain Tumor Society:

• There are over 600,000 people in the US living with a primary brain tumor diagnosis.
• More than 60,000 adults and children will be newly diagnosed this year.   This year alone!
• Because brain tumors are located at the control center for thought, emotion and movement, their effects on an individual's physical and cognitive abilities can be devastating.  I know about this first-hand, and work on improvements every day.  I have been blessed that my situation was not worse.
• Brain tumors are the leading cause of death from solid tumors in children under the age of 20, and are the third leading cause of death from cancer in young adults ages 20-39.   Leading cause of death in children…  No child should have to experience this.  Third leading cause of death from cancer in young adults…  Third.
• Brain tumors may be either malignant or non-malignant (“benign”), but can be life-threatening in either case.  Depending on the location in the brain, even benign tumors can be life-threatening.

Today I received this email from the National Brain Tumor Society (NBTS):

Tomorrow (May 8)  is Head to the Hill, the National Brain Tumor Society’s annual advocacy day cosponsored by Accelerate Brain Cancer Cure. One hundred brain tumor advocates from 21 states will meet with their Senators and Representatives in Washington, DC to advocate for public policy issues that are critical to the brain tumor community. We need you to be a part of this important effort, and we’ve put together the tools you’ll need to join us right from home tomorrow.

The Head to the Hill participants are talking to their legislators about two issues that the brain tumor community needs Congressional support on:

NIH Funding: The National Institutes of Health (NIH), the largest funder of brain tumor research in the country, must continue to receive the funding it needs to support brain tumor research.

Oral Chemotherapy Parity: We know that many brain tumor patients rely on temozolomide, an oral chemotherapy, as the only available form of chemotherapy treatment and that some health insurance cost-sharing schemes can create significant cost burden. There is legislation in the House of Representatives, HR 2746  The Cancer Drug Coverage Parity Act, that would require insurance companies that cover oral chemotherapy to do so on a no less favorable basis than they cover intravenous chemo. Currently, there is no companion version in the Senate.

Please call the offices of your Representative and two Senators tomorrow and tell them that you stand with your fellow brain tumor advocates in DC. We’ve created a tool that provides you with the phone numbers of your legislators’ offices and a script to help you get your message across. Please fill in the report form when you’re done and let us know how your calls went.

You may not have been able to travel to DC this week, but you are a critical part of this effort. Let’s kick off Brain Tumor Awareness Month together by standing strong for important brain tumor issues in Congress.

Thank you for your advocacy.

David Arons
Director of Public Policy

I will be making some phone calls tomorrow.  If you feel so inclined, you can as well.  I have a perspective on the cost for the drug, temozolomide, as this is what I have taken.  It is very expensive.  I also do not want to see the NIH lose any funding and instead would like to see this increased.  A few simple calls for a cure, and a few more pull-ups.  So, if you have the time and feel so inclined, make the calls.  The NBTS has made it easy to get the phone numbers and has provided a script.  Just follow the link in the email above.