After Action Report

A few people have asked me how it went on the Hill.  I haven’t really been able to respond because I have mixed feelings.  I’ve tried sitting down to write this entry almost every night since then, and I’ve been struggling to do so. 

I think the foundation did a great job organizing everything, and it was an amazing group of people there.  Most of the group hung around for a second day for a Gastric Cancer “Patient Journey Day” with a pharmaceutical company.  It was an exhausting two days, but I’m glad we were able to participate and tell our story, and I’m glad that Janet, Tristen, and Donna were there with me.  Getting through those two days was tiring and not something I’d want to relive very often, but it was do-able.  What’s been tougher has been dealing with the new thoughts and emotions that have surfaced as a result of participating.  I really can’t believe it was just two weeks ago, it feels like it’s been two months since then.  But let me start by giving a recap.

On Sunday night we all met at the hotel for a dinner.  I was a little skeptical about getting a free meal for this, but it quickly became clear that it was going to be a working dinner.  They handed out a bunch of papers and gave us a crash course on how to approach our meetings the next day.  It was a firehose of information, but it was probably better than going in blind. 

The next morning we walked a few blocks and took some pictures together on the steps of the Capitol.  Then we all took off in different directions for our first meetings.  I had no clue that you could literally just walk right into the office of your representative.  I figured you would have to get a visitor badge or something, but nope, just figure out what building you want to go to, walk through a metal detector (note: if you’re going to be entering and exiting 5 times, it probably helps to not wear a belt that sets off the detector), and then try to figure out where the office is.  Our first meeting was literally in the basement of one building, and the office was so crowded that we sat down at a few chairs in the hallway.  But the other meetings were in nicer, less crowded offices, and we met in conference rooms.  In the afternoon I managed to get lost in a basement tunnel by myself, trying to run to another meeting.  The servicemen down there looked at me a little funny.

The meetings themselves were interesting.  I met with health assistants for the two Virginia Senators and my Congressional representative, and then also sat in with my mom on two meetings with New Jersey representatives.  They went about 15-20 minutes each, during which time we relayed our story and why we think it’s important to prioritize the under-funded cancers, specifically stomach cancer.

We heard over and over again how no one has ever come to meet with them about stomach cancer before.  One of them said “you don’t know how many breast cancer groups I need to meet with every year.”  But they said that this is what we need to be doing for the cause, “pounding the pavement” and spreading awareness.  This is where the large organizations for other cancers started out 10 or 15 years ago.  They said it would likely take time, but thought that the statistics we were presenting were pretty strong, and they wondered aloud why they never hear anything about stomach cancer, even though the statistics are so similar to other cancers like brain and ovarian. 

I think we connected with a few of the folks we met with.   They were sympathetic, and seemed interested in how this was impacting people.  But of course, then politics got involved.  We had to transition to asking if the representative would sign onto a letter asking the NCI to raise the profile of stomach cancer research. Most of them said it was unlikely that their representative would sign it, because they don’t think they should be telling the NCI how to spend its research dollars.  I think I’m a pretty rational person, so when they laid it out like that, I could see their point of view.  But then two of them brought up this "Recalcitrant Cancer Act" that was passed just a few months ago.   We had no clue what it was, so I had to look it up between meetings.  Here is the explanation of that act, from the Democratic Committee on Energy and Commerce website:

“This bill expanded the focus of the introduced bill, the Pancreatic Cancer Research and Education Act, to recalcitrant cancers, or cancers that have high mortality rates (five-year relative survival rates below 50%) and have not seen substantial progress in the diagnosis or treatment.  Examples include cancers of the pancreas, liver, lung and bronchus, esophagus, stomach and ovary.  H.R. 733 directs the National Cancer Institute (NCI) to establish scientific frameworks that will guide research efforts on recalcitrant cancers by identifying unanswered medical and scientific questions.  The NCI Director is required to convene and participate in a working group of Federal and non-Federal experts to assist in the development of each framework.  The frameworks must include a review of the current literature, identification of relevant scientific advances and qualified researchers, a list of initiatives and partnerships that can advance coordination of research, and research resources.  H.R. 733 requires NCI to begin with frameworks for two recalcitrant cancers --pancreatic and lung cancer -- but gives the Institute discretion to pursue additional frameworks. The National Institutes of Health (NIH) is directed to issue a report to Congress with recommendations on the effectiveness of the framework model.”

The health assistants who brought this up thought that stomach cancer research should fall under this act.  According to the first two sentences above, it definitely should.  But when you read the specific language in the act, it becomes clear that the only thing that the NCI is required to do is to provide additional research funding to pancreatic and lung cancers.  That’s great, but wait – why are all these representatives saying that they don’t want to tell the NCI how to spend its research dollars, when clearly, that’s what this act just did?  This is where I get frustrated.  And I also get annoyed when they tell me that we really need someone on the Hill to champion the cause – literally stating that we need a high-level politician or celebrity to get stomach cancer.  That’s when I get more frustrated.  But when I hear the same thing over and over, it makes me realize that’s how these things work.  And if we’re not out there telling Megan’s story, then other folks will be telling their own stories and getting all of the funding.  I don’t think that our story is any more important than anyone else’s story, but I do think that the numbers indicate something more needs to be done for the thousands of people battling this disease right now.

It was a long day, telling our story several times, but it felt like the right thing to do.  At the same time, it was also both comforting and painful to meet the group of committed individuals who traveled to DC as advocates.  There was Debbie, the founder of the foundation, who has an amazing attitude and has become one of the 4% of Stage 4 patients that make it 5 years.  There were the caregivers and family members who lost their parents, their siblings, their spouses.  There were the other “warriors” who put their chemo on hold to be there, or were still trying to adapt to life without a stomach.  Over 30 people, each with a reason to be there, each inspiring in their own way.  But it was tough for me to talk with most of them, especially the people going through it right now.  It was tough for me try to be encouraging, and in a way, I almost felt bad being there, as a glaring reminder of what the statistics say. 

There was a videographer there on Monday, capturing the story of our campaign.  After we walked out of one of our afternoon meetings, he was waiting there in the hallway to ask us how it went.  My mom gave a good recap, and then the videographer turned the camera towards me and asked what the experience had been like, if it had been rewarding.  I was caught off-guard by his question and thought about it for a second.  I wanted to give him the answer he wanted to hear, but I just couldn’t.  I said no, it really hasn’t been rewarding at all.  It felt like the right thing to do, because I want other people to have more hope than we did.  But it wasn’t making me feel any better.

That being said, I’m glad we participated.  Even if we just reached one or two people, and even if it takes years to make some progress on the funding, I think it was probably worth it.  I think I will feel better about participating in events like this as time goes on.  But one of the things that’s really been eating at me since then is how badly I wish that Meg could have fought for herself in DC.  She would have been absolutely fantastic at it.  (Her coworkers at Covance could probably attest to that.)  But she wasn’t given enough time.  It took a few months before she was ready to do anything as an activist, and then the cancer came roaring back so fast.  Back in October, when I told her that a foundation was doing a stomach cancer walk, the first thing she said to me was “Can we create a team?”  I know that if she was able to live with a stable disease for a prolonged period of time, she could have done some amazing things.  And I know that if I was the one who got cancer, she would have carried the torch.  So maybe that’s why I’m glad we did this.  Because I’m 100% certain Meg would have done the same thing if the roles were reversed.