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BLOG: My Purple Trip to Washington

As one of 650 people to advocate for cure for pancreatic cancer, the author's trip to Washington, D.C. was an eye-opening experience.

I have always loved politics. In high school, I was very involved in Get Out The Vote campaigns, ran for treasurer of the school (my immitation of George Bush in my campaign speech and not my ability to manage money helped secure me the nod) attended the Republican National Convention (some of my teacher friends just fell over in their chairs as they read that). Eventually, I was a politicial science major at Rutgers University - or as I would like to call it, a lawyer in training.

Maybe it was my time at the State University of New Jersey that caused me to grow a bit disillusioned with the political process. Then again, maybe any 30 minute segment on any national newscast that would have done that. Either way, I always considered going into politics to make the world a better place for my fellow citizens. The whole law school thing didn't work out either (sorry, mom).

On June 26, I was given the opportunity to make my voice heard by meeting with my legislators in Washington, D.C. and letting them know about something that is very important in my life; beating pancreatic cancer.

To give you a little background, I lost my father to pancreatic cancer on July 2, 2002. For those doing the math at home, this is the 10th anniversary of my father's death to this insidious disease. If you're friends with me on a social media outlet, you're probably well aware of this since I have posted it almost as much as some of your friends have alerted the populous about what their Farmville community needs, what your horoscope is for today, or what random things they're doing in the bathroom.

I have three letters for you: TMI.

When we lost my father to a disease that has a 5-year relative survival rate of ONLY six percent, my family's life was jolted like we were hit by lightning (not that I know what it's like to get hit by lightning...I was hit with a kickball once
and even that sent me to the nurse).

So, rather than sit back and let others pick up the slack, I decided to try and do something about it, joining a new affiliate of the Pancreatic Cancer Action Network, the national organization creating hope in a comprehensive way through research, patient support, community outreach and advocacy for a cure. I've become very involved with the organization, and the Northern New Jersey affiliate which won the award for Large Market Affiliate of the Year in March.

Our national color is purple and I have slowly transitioned my wardrobe from blue and yellow to purple.

I almost feel like I'm a Barney groupie.

In my five years with the affiliate, I have tried to take my family's misfortune and tried to make a positive out of it. I've helped arrange  (including one on Sunday, July 15) walks, golf outings, purple days at my school, silent auctions, and more. Basically, I am taking lemons and making lemonade. Purple lemonade.

One thing I had never done was advocate on Capitol Hill. And now I finally had my chance.

Nearly 650 people from 49 states (Alaska gets a pass...the largest state is quite a ways from D.C.) attended the Sixth Annual Pancreatic Cancer Advocacy Day. Many of the people in attendance I have known due to my involvement with the national organization. I was excited to see some new faces like pancreatic cancer survivor Charlotte Rae from the 1980s show “The Facts of Life” and 15-year-old prodigy and award winner Jack Andraka

We were all there for the same reason: to tell Congress “It is time to pass the Pancreatic Cancer Research & Education Act (S. 362/H.R. 733)!

This legislation would require the National Cancer Institute (NCI) to develop a long-term comprehensive strategic research plan that would help develop early detection methods and treatment options for patients and would ultimately increase survival rates for pancreatic cancer. Unlike other cancers, incidences of pancreatic cancer have actually increased and five years from now, approximately almost 200,000 Americans will have been diagnosed with the disease, but only 10,000 of them will survive beyond five years.

If you haven't heard much about pancreatic cancer, it makes sense. With no early detection tools or effective treatment options, pancreatic cancer is usually
diagnosed at a late stage, taking the lives of many public figures  like Michael Landon, former New Jersey Nets coach Chuck Daly, actor Patrick Swayze and Apple CEO Steve Jobs.

Heading into Advocacy Day, we had 247 members of the House and 50 members of the Senate signed on to the bill. All of the New Jersey Representatives except two (Rep. Rob Andrews in District 1 and Rep. Scott Garrett in District 5) had co-sponsored H.R. 733. By the end of the day on Tuesday, Rep. Andrews had signed on. Rep. Garrett? Not so much.

We were able to meet with aides from Sen. Frank Lautenberg and Sen. Robert Menendez's offices. Both have co-sponsored S. 362. In addition, I had the opportunity to  speak directly with my Congressman, Rep. Leonard Lance (NJ-7), who is the lead author of the bill in the House! His leadership on this issue is absolutely incredible and I feel lucky to have him as my Representative.   

Despite the strong support from the New Jersey federal delegation, the bigger issue is getting Congress to actually vote on it. Even with the support of a majority of both houses of Congress (now over 265 members in the House and 55 in the Senate), we need the committees of jurisdiction to mark up the bill and bring it up for a vote.

While almost no members of Congress seem opposed to it,  some of the most powerful leaders in Washington do not want to see this legislation move forward. One of the arguments against the bill is that no specific disease should have its own bill. Well, cancer itself is terrible, but pancreatic cancer is unique in that there are no early detection methods or effective treatments for fighting the disease. Further, while the five-year survival rate for all cancers has gone from 50 percent to 67 percent over the last 40 years, the survival rate for those with pancreatic cancer has remained virtually unchanged at a meager six percent.

Another argument is that in this difficult economy more money should not be spent. But this bill does NOT call for an increase in spending for pancreatic cancer research; it simply requests a strategic plan within the National Cancer
Institute (NCI) to oversee existing pancreatic cancer research funds.

Currently, the NCI allocates just 2 percent of its funding for pancreatic cancer research. So if this was a Thanksgiving meal, we wouldn't be allowed at the adult table or the kids table. We'd probably be told to linger outside in the cold, taking advantage of any scraps left for us by the others. Obviously, this is not acceptable for any of the more than 37,000 people who will die of this disease this year.

I left Washington, D.C. with mixed feelings. While I am glad my voice was heard, it is very upsetting that a few elected representatives have so much influence  over what bills get through and which never see the light of day. We've all had cancer touch our lives in some way, but I guess those afflicted by pancreatic cancer can truly realize the devastation of this disease.

We still have plenty of work to do to beat this thing. Our group has a baseball game with the Somerset Patriots on July 15 at 5 p.m. (Tickets are $10 apiece and can be purchased by this link ) and a walk in November (pancan.org/newjersey).

With the current session of Congress about to come to a conclusion, I am hoping the hard work that thousands around the country have put in to get this passed hasn't gone for naught.

We have too much to gain and are too close to let this chance slip away.

Lauren Mazzarella July 13, 2012 at 01:34 AM
Todd always working so hard or a cure! Kudos!
Cindy Elgrably July 13, 2012 at 03:31 AM
Your dad would be so proud of all the amazing things you do for the cause. Keep putting up "the fight" because one day.. you will be the victorious winner!
Rona Greenwald July 13, 2012 at 02:05 PM
Way to go Todd...so eloquently written
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