Going to the Hill

I’ve lived in the DC area for almost 10 years now.  Until this point, I’ve managed to avoid getting involved in politics about as much as anyone could while living here.  But tomorrow, I will be spending the day on Capitol Hill, meeting with staff from the offices of my elected representatives.  I will be representing Debbie’s Dream Foundation: Curing Stomach Cancer (they just changed the name from Can’t Stomach Cancer due to some legal issues, but this is the same foundation everyone donated money to in March).  30 other advocates from 14 states, including my mom and Megan’s mom and sister, will be there too.  We are going to be asking our representatives to make medical research funding a priority when generating the country's budget, and to participate with us in asking the National Cancer Institute (NCI) to raise the profile of Stomach Cancer research in relation to other types of cancer.  This type of lobbying happens every day on the Hill, often by groups and organizations much larger than we will be.  But it is believed that this will be the first organized call on Congress by stomach cancer advocates.  I can’t say that I am overly excited about this foray into a political arena, but the fact is, if we don’t go ask for funding then someone else will.  And while the last thing I want to imply is that our cause is more important than anyone else’s, I think we have a strong case for why stomach cancer needs more research funding.

Leading Causes of Death in US, 1975 vs 2008. 

Percent of All Causes of Death.

Source: http://seer.cancer.gov/csr/1975_2008/results_merged/topic_lead_cod.pdf

In general, cancer is responsible for a larger percentage of all deaths in the US now than it was 30 years ago.  While the medical community knows more about cancer now than it did in the 80’s, it is obvious that there is still so much work that needs to be done.  Some of the most common cancers have had lots of funding applied towards them, mainly because there have been amazing people volunteering their time towards raising money and generating awareness.  That has resulted in a lot of foundational research being performed that could allow new, more targeted therapies to be developed.  And in many cases, those lessons learned could then be applied to the less common cancers.  As far as chemotherapy goes, that’s what you will get if you have stomach cancer – drugs first developed for other cancers.  Irinotecan and 5-FU are two popular drugs used for stomach cancer, but they are really colon cancer drugs.  I believe that Herceptin and Xeloda were developed for breast cancer.  From my amateur viewpoint, I think it’s great that some of the drugs developed for the big cancers have been able to improve the survival rates for the less common cancers.  But they have usually been minimal improvements, and the overall survival rates for the less common cancers have generally not improved as much.  The primary chemo drug that Meg received has been around for 40 years!  They haven't been able to find anything better than that yet.  Research is the key towards improved survival, and until more is understood about stomach cancer, there is not going to be that “home run” drug that makes a dramatic difference. 

While overall stomach cancer incidence numbers have decreased over the past 50 years, there have been a few alarming trends recently.  One is that an NCI study found that the likelihood of being diagnosed with gastric cancer at age 25-39 years has increased by almost 70 percent since 1977.  Another is that a number of studies have reported that the incidence rate for cancerous tumors at the junction between the esophagus and stomach has been rising.  Megan was 31 when they found the tumor at her GE (gastro-esophageal) junction, so she fits squarely into both of these statistics.  There is concern among some professionals that there are new types of stomach cancer appearing, brought on by new causes.  But they just don’t know enough about it yet.  Heck, when we went to Sloan, the doctor there told us he would classify Meg as having Esophageal cancer.  Everyone else said Stomach or Gastric.  That scares me.  If they don’t even know what to call it, how do they know how to treat it? 

We met with Dr. Ronan Kelly at Johns Hopkins for the first time in January.  We wanted to hear about some clinical trials that Megan might be eligible for.  He mentioned a few potential options for the future, but they were essentially all generic cancer trials.  There was nothing specifically targeted at stomach cancer.  Dr. Kelly expressed his frustration to us, saying that he just can’t get the government to give him a grant for stomach cancer research.  You don’t realize how much it crushes your sprits to meet with doctors over and over again and hear about how there just isn’t any promising research on the horizon.  We went to these large cancer centers looking for hope, and all we received were condolences. 

Charts showing NCI research funding in relation to (A) Incidence, (B) Mortalities, and (C) Years of Life Lost.
Source: http://www.ncbi.nlm.nih.gov/pubmed/22800364

When the current NCI cancer funding levels are critically analyzed, stomach cancer falls into the “underfunded” category, along with other cancers like bladder, esophageal, liver, oral, pancreatic, and uterine.  In fact, stomach cancer receives the least amount of funding per cancer death in the US.  I got the chart above from a paper I liked, titled “A comparison of cancer burden and research spending reveals discrepancies in the distribution of research funding.”  The one thing I would change is that I wouldn't call any cancer "overfunded".  I would never argue that money should be taken from another cancer to be put towards stomach cancer.  But that fact is that there are some cancers that just aren’t getting enough research funding, and I believe that stomach cancer leads that list.  

So tomorrow we will attempt to convey this viewpoint to our representatives in DC, in honor of Megan.  This may seem like a personal cause for us, and I guess it is, but let’s be honest here: no amount of research is going to bring Megan back to us.  We’re doing this in honor of her, but it’s not really for her, and it’s not for us.  It’s for everyone else.  We lived through the pain that this disease inflicted, and there are too many other families that are dealing with the same tragedy that we did.  Megan fought through nine months of chemotherapy, but she was never given much of a chance.  The doctors told me that I should be thankful that she even made it that long.  I am thankful, but only because I know how grave this diagnosis can be.  In the U.S., more than 10,000 families will lose a loved one to gastric cancer this year.  I don't think that giving them a few months each is good enough.