When we started this journey and created this blog, our
intention was to post regularly. We’d seen several people be active bloggers
but stop posting as they moved further out from surgery and we didn’t want to
do that, but that’s exactly what’s happened. Life has been blissfully normal
and quiet lately, so we really haven’t known what to post.
We did step out and do something out of the norm last week
though. We traveled to Washington D.C. and on February 11th we
gathered with almost 100 other stomach cancer patients, caregivers, and supporters
to participate in Debbie’s Dream Foundation’s 8th Annual Capitol Hill Stomach
Cancer Advocacy Day. You see, it’s expected this year that roughly 27,600
Americans will learn they have stomach cancer, and more than 11,000 will die
from the disease. The overall 5-year relative survival rate of people with
stomach cancer in the United States is 32 percent according to the American
Cancer Society. At Stage IV, the five-year survival rate is merely five
percent. The initial diagnosis of stomach cancer often is delayed because up to
80 percent of patients are asymptomatic during the early stages of stomach
cancer, leading to poor survival rates. At present, there are no established
screening tests for stomach cancer and there are very few treatment options to
offer those diagnosed with stomach cancer, particularly at late stage. These facts
and statistics are not okay, we must do better. That is why we met with members
of the House of Representatives, Senators, and legislative aides to discuss
topics directly affecting funding for stomach cancer research.
The first major topic of discussion was requesting their
support to keep stomach cancer on the Depart of Defense list of cancers for the
Peer Reviewed Cancer Research Program. This program exists to fund innovative
basic, applied, and translational cancer research to support service members,
their families, and the American public. Stomach cancer was added to the list
in 2015, and since that time the PRCRP has invested, through 34 awards, more
than $17.4 million in stomach cancer research. Studies funded by the PRCRP are
addressing critical research gaps and unresolved questions within the field of
stomach cancer. Our ask was simple, sign a letter to the Appropriations
Committee requesting stomach cancers ongoing inclusion on the PRCRP list.
Inclusion on the list one year does not guarantee your place the next year, so
every year it is important to go back and fight for our spot. We did get a
little push back from one aide that the DoD shouldn’t be funding medical research
but focus solely on defense matters; however, the reality of the situation is
that to give our country the best defense possible, we need our service members
healthy and well cared for. Stomach cancer is a service-connected malignancy
for service members who experienced hazardous exposure to ionizing radiation. Additionally,
due to past and present deployments, U.S. Service members and Veterans may have
an increased risk of stomach cancer, especially if diagnosed with H. pylori.
Studies suggest that the risk of H. pylori infection, the primary identified
cause of stomach cancer, increases among military personnel during long-term
deployment. For the most part everyone we met with was extremely positive and
supportive, I think we can all agree that ending cancer is a non-partisan
issue. Going into this year, only one representative from Alabama had ever
signed a letter to the Appropriations Committee supporting the inclusion of
stomach cancer on the PRCRP list. After last week, we except to see a few more
on the list for FY21.
The second ask we brought to our Congressional leaders was focused
on funding for the National Institute of Health (NIH) and National Cancer Institute
(NCI). Congress has historically been very supportive of cancer research and
funding for the NCI has consistently gone up. As the NCI budget goes up, so
does the number of research grant applications and the demand is still outpacing
the funding; there simply isn’t enough funding to support all the wonderful
research ideas out there. In order to support a robust suite of research
opportunities we asked Congress to fund the NIH at $44.7 billion for FY21, a $3
billion dollar increase from FY20. Of that amount, the request is for $6.9
billion for the NCI, a $500 million increase. In our home state of Alabama we
actually have a few institutes that have benefited from funds from the
NIH/NCI, including the University of Alabama at Birmingham (UAB) the hospital that
has taken care of Nicole and I since we were diagnosed with our CDH1 mutation. I
think this is the reason most of our Alabama representatives were so receptive
and supportive of funding the NIH and NCI, progressive, groundbreaking research
is taking place right here in our state.
One of the best parts of participating in these events is
time spent with others who have faced stomach cancer in a variety of ways. We
heard stories of survivors, current patients, caregivers, people who lost
spouses, children, and friends, and fellow CDH1 mutants. Most of these people
we only see or talk to once in a blue moon, but they are our family, we share a
bond that you can’t understand until you’ve been in the same trenches, faced
the same fears, celebrated the same milestones (like eating steak or drinking
your first glass of wine stomachless). While Nicole and I are called the “stomachless
sisters,” the truth is we have a whole group of sisters and brothers whom we
love dearly.
What’s on the horizon? We have several events and causes we’d
like to push forward in 2020-2021. Here in Alabama we’d like to push our state House
and Senate to pass a resolution officially declaring November “Stomach Cancer
Awareness Month” in the state. While this seems largely symbolic, the truth is
that stomach cancer is something most people don’t have on their radar, they
don’t know the early warning signs and as mentioned earlier, that leads to a
late stage diagnosis and lower survival rates. Any measure to draw attention to
the disease can only help improve public knowledge and even if it only leads to
one person pushing for early testing, one life saved would be worth every
effort. In October we will be back in DC for No Stomach for Cancer’s Spotlight
on Gastric Cancer event. This falls event will be very exciting as it is set to
include Dr. Parry Guilford, the man who discovered the CDH1 mutation and is
tirelessly working toward a better treatment alternative for our children. We
are also working with our team at UAB to hopefully host an event for NSFC here
in Birmingham in the near future. UAB is an amazing facility, one of the top 10
hospitals in the country, but somehow it doesn’t seem to get the attention or
credit it deserves, and we would love to see UAB recognized in a national
program supporting stomach cancer patients. Supporting fundraising efforts for
No Stomach for Cancer is always at the top of our list. With that said, we are
looking for ideas for fundraising events that are unique, that people would
want to participate in, and that could be carried out simultaneously across the
country by other NSFC supporters. Please bombard us with ideas and as we come
up with things, we will post them on our Facebook page for feedback.
Almost four years have passed since we started this crazy,
stomachless roller coaster. It seems odd to say that we are grateful for
surgeries and losing body parts, but at the end of the day this gave us the
best shot at a long, healthy life and that’s so much more than many people get.
We are also incredibly thankful to be surrounded by family and friends who support
us, take care of us on rough days, and always champion the cause of stomach
cancer. We love you guys!
