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National Ovarian Cancer Awareness Month 2009

The Ovarian Cancer National Alliance sent the following press release.  They’ve also said that this Friday, September 4th, is the day we’re to wear the ovarian cancer color, teal.  Best wishes to you all!

THE WHITE HOUSE

Office of the Press Secretary
For Immediate Release August 31, 2009

– – – – – – –
BY THE PRESIDENT OF THE UNITED STATES OF AMERICA

A PROCLAMATION

Ovarian cancer remains the leading cause of death from
gynecologic cancer among women in the United States. Every
year, thousands are diagnosed and go on to fight the disease
with grace and dignity. National Ovarian Cancer Awareness
Month honors all those affected by this cancer and renews our
commitment to fighting an illness that takes the lives of too
many in our Nation.

Women are often diagnosed with ovarian cancer when it is
already at an advanced stage. This problem can be attributed to
a lack of effective early detection technologies and minimal or
no specific symptoms associated with the disease. By learning
more about risk factors and maintaining regular physician
consultations, women have their best chance of early detection
of ovarian cancer.

Science continues to expand our knowledge about this
illness, promising hope to those who, years ago, would be
without it. Through dedicated research, treatment outcomes
have improved for many, and we are building a foundation for
the development of evidence-based screening, which can help
diagnose the disease at the earliest possible stage when the
likelihood of cure is high.

This month we recommit to supporting the women who continue
to battle valiantly against this malady as well as all families
who are affected. National Ovarian Cancer Awareness Month helps
educate women and men about the importance of knowing common
signs and symptoms, scheduling routine doctor visits, and
continuing robust scientific research. As a Nation, we are
united in our resolve to reduce incidence and improve the lives
of all those affected.

NOW, THEREFORE, I, BARACK OBAMA, President of the
United States of America, by virtue of the authority vested in
me by the Constitution and laws of the United States, do hereby
proclaim September 2009 as National Ovarian Cancer Awareness
Month. I encourage citizens, Government agencies, private
businesses, nonprofit organizations, and other interested groups
to join in activities that will increase awareness of what
Americans can do to prevent and control ovarian cancer.

IN WITNESS WHEREOF, I have hereunto set my hand this
thirty-first day of August, in the year of our Lord
two thousand nine, and of the Independence of the United States
of America the two hundred and thirty-fourth.

BARACK OBAMA

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September 1, 2009 at 8:11 pm 1 comment

Making The “Army of Women” Idea Even Better

Last fall, I learned of Dr. Susan Love’s “Army of Women.”   This cause is moving in the direction of proactive civic participation with the breast cancer community.  From their site:

Women who are interested register on the Love/Avon Army of Women website, providing very basic information such as name, age, city, and state of residence.  Army of Women members will receive email updates from the Love/Avon Army of Women announcing new research studies looking for volunteers just like you.  The email will detail the research project and who and what the researchers need.  If you fit the criteria and you’d like to participate, all you need to do is reply to the email and let us know you’ve accepted our “Call to Action.”

This is a great first step, but it still keeps all the research proprietary.  In other words, there won’t be a centralized database kept on all participants across all studies they’ve participated in.  Why?  It’s likely, at least in part, due to the politics of funding medical research.

The result?  The September 15, 2008 Newsweek article entitled “We Fought Cancer…and Cancer Won” said that it is “indeed possible (and common) for cancer researchers to achieve extraordinary acclaim and success, measured by grants, awards, professorships, and papers in leading journals, without ever helping a single patient gain a single extra day of life.  There is no pressure within science to make that happen.”

While I think the AOW is a great idea, it can be made better.  Doctors need to share their data.  After all,  I own my medical history.  If I want to make my answers “public” to other medical investigators, why can’t I?  It would be a shame if egos trumped finding much needed cures.

Please click on the StandUp2Cancer badge on the main blog page.  For every completed click, this charity receives money from my sponsor.

July 13, 2009 at 1:15 am Leave a comment

NYT: Grant System Leads Cancer Researchers to Play It Safe

An outstanding NYT article to be found by clicking here.

A couple of excellent points made by readers in response to this piece:

HJBoitel talks about using super-computers to “mine” our health data for patterns.

“The United States will start getting serious about medical research and will start getting meaningful results when it is acknowledged that prevention and cure is not about doctors or institutions or competition or money — it is about data. We spend large amounts of money to track a small number of patients in a limited and often inconsistent way, and the results often are what you would expect in a pin the tall on the donkey approach.”

With HJBoitel’s approach, would everything that needs to be captured get captured?  I’m not sure.  But it’s one more thought along the same lines as what I proposed before.  Click here to find his entire, thoughtful comment.

My favorite comment came from Norma Greenfield, a cancer researcher and survivor.  She had a similar experience to mine with regard being interviewed for a study and being disappointed in its scope.

“While I was undergoing the chemotherapy treatment I was asked to participate in a survey about potential environmental causes of cancer. Since I had been exposed to many carcinogens in my life I was eager to participate in the survey…I expected that the study would ask about my exposure to carcinogens, birth control bills and the effects of estrogen replacement therapy. Instead I was asked whether I had been sexually molested when I was a child before puberty (I had not been) and I was asked detailed questions about my weekly consumption of green peppers and sweet potatoes. I was disgusted that grant money funded the study that I participated in…Too much funding depends on knowing the right people (mainly an old boys network), and not whether one is doing innovated, relevant research.”

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July 1, 2009 at 9:46 pm Leave a comment

Can We Help Make Cancer Research Better?

I tried to volunteer.  I wanted to volunteer.  But there was no place for me to go.  That’s what I was told after participating in a study for LA County as a newly diagnosed ovarian cancer patient.

How does this make sense?  A small group of women get this disease and, unfortunately, the survival rate isn’t good.  Why wouldn’t the scientists want to learn as much as they could about us, rather than waiting for more women to get ill?  I came up with an idea to change this, and I’d like to know what you think.

Would you volunteer for an on-going investigational (non-clinical) medical research panel? The purpose would be to assist the medical community in its investigational research efforts about gynecological cancer prevention, risk assessment, and early detection; its focus would not be on clinical (drug) trials.

The basic assumptions:

  • It would be completely private and secure.
  • The entire undertaking would be non-profit.  (No buying or selling.)
  • It’s up to you to opt-in.  (You’d likely get an invitation from the government agency you were reported to at the time of your diagnosis asking you to join; this group would not be allowed to share your contact info with anyone.)
  • Only approved investigational researchers would be able to submit questions or make requests to examine answers given in prior surveys.  This would likely be done through a central agency, such as the NCI or NIH.
  • Questions would be sent roughly once a month.  You would enter your answers online or by phone using a PIN.

The benefits of this new approach are numerous, but the primary one is this:  for an individual study, data could be collected in months rather than years using this national database of volunteers.  Simply put, we’d get answers sooner and we could save more lives.

***

What do you think?  Please take part in the poll below.  Thank you!

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June 18, 2009 at 5:15 pm Leave a comment


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