Video summary
Cancer advocates from across the nation gathered in Washington D.C. to urge Congress to maintain and increase funding for cancer research, emphasizing that financial support is essential for advancing medical science. Representing West Virginia, speakers highlighted their consistent engagement with local representatives and senators to ensure maximum allocation for research initiatives. They clarified that while organizations like ACS CAN serve as resources for this funding, the primary goal is not profit but rather directing these funds effectively to where they are needed most to improve patient outcomes.
A central focus of their advocacy is a new legislative effort known as the Clinical Trial Modernization Act, which aims to significantly benefit rural communities in Central Appalachia, including West Virginia and Kentucky. The proposed bill would allow participants to defer certain costs associated with joining clinical trials, such as travel, lodging, and childcare expenses. For many residents in these areas, the burden of traveling long distances to access cutting-edge treatments is a major barrier; by alleviating these financial hurdles, the legislation seeks to make life-saving research opportunities more accessible to those who currently cannot afford them.
The importance of this funding was poignantly illustrated through personal stories, particularly regarding pancreatic cancer and the potential for extending lives even by a few months. One advocate shared the tragic experience of her mother, who passed away from pancreatic cancer in June despite being eligible for a new drug that could have added several months to her life. She explained that without the ability to travel to a clinical trial location, her mother missed out on treatment that could have allowed her to see another Christmas with her grandchildren. This narrative underscores how financial barriers directly impact survival rates and quality of life, reinforcing the argument that supporting research funding is not just about finding a cure but also about providing viable treatments that extend and improve lives today.
In conclusion, the advocates are calling on representatives to co-sponsor this critical bill without raising taxes, ensuring that both patients can reach trials and trials can reach patients effectively. They emphasize that clinical trials and research funding go hand in hand, as the journey toward a cure often yields immediate treatments that save lives and enhance daily living conditions. For those interested in tracking the progress of this legislation and other cancer-related issues, the group directs the public to fightcancer.org under the public policy section for updates on research funding and drug development.
Read the full video transcript
Advocates from all over the nation
gathered in Washington D.C. today to ask
Congress to continue funding cancer
research.
>> Every year ACS CAN meets for what we
call lovingly a lobby day.
And as a representative or as an
ambassador from West Virginia, we
actually have it really good in that we
take meetings with every one of our
representatives. So, we have two
representatives, two senators. And at
these meetings, what we do is we ask
them one to fund the maximum amount for
cancer research. And what's great about
ACS CAN is we are a resource for that
funding, but we don't
we don't want it. We just want the
cancer research funding to go to where
it needs to go to.
>> Right now, ACS CAN is pushing for a bill
that will benefit rural areas like
Central Appalachia.
>> We are asking them to co-sponsor a bill,
the Clinical Trial Modernization Act,
which is a mouthful to say. But this
could be a real game-changer for people
in West Virginia and Kentucky, rural
areas. What it will do is it will allow
anyone who wants to participate in a
clinical trial to have some of those
costs deferred. The costs that prevent
us from going because you know, most
people, especially in West Virginia,
have to travel to get to a clinical
trial. And so, you have travel costs,
you have lodging, you have childcare,
all these things. And this is going to
help some relieve some of those costs
and make clinical trials more accessible
for us. And it's really exciting. So, we
would like for our representatives to
co-sponsor that.
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>> Summers explained why clinical trials
are so important to those dealing with
cancer.
>> Clinical trials and money for research
all go hand in hand, right? And while we
always want or we always seem to focus
on finding a cure, and of course we want
to find a cure.
What we don't realize is on the way to
finding a cure, we find treatments that
extend life and better life. Take for
instance pancreatic cancer. The new drug
that recently came out was shown to
extend a life by a matter of months.
Now, I know that's kind of seems like,
okay, a matter of months, but my mother
passed away this June from pancreatic
cancer. She would have been eligible for
that drug,
but it didn't get out in time.
And she had nowhere to go for the
clinical trial. And so a matter of
months to us and her grandchildren meant
maybe another Christmas. So, this act
not only helps offset the cost, and it
will not raise taxes, it's nothing like
that. It, you know, will help patients
get to the trial, but will also help the
trial get to the patients as well.
>> You can keep up with this bill and other
cancer-related issues by going to
fightcancer.org.
Click on public policy, then use the
drop-down menu to find research funding
and drug development. Reporting from
Mountain Top News, I'm Robin Tillman.