Posts tagged ‘ovarian cancer’

Hearing Back from Rep. Waxman

Just thought you’d like to know what my congressman is up to!

Dear Ms. Goldsmith:

Thank you for contacting me to express your support for H. Res. 727, the National Ovarian Cancer Awareness Month resolution.  I was glad to hear from you.

I completely agree that we must do more to raise awareness about ovarian cancer and actively work to find effective treatments and a cure.  As you know, if ovarian cancer is diagnosed and treated at an early stage before the cancer spreads, the survival rate is as high as 90 percent.  I look forward to supporting H.Res. 727 and other efforts in Congress to promote early recognition of all forms of cancer.

One of the best ways to make progress in the fight against cancer is to adequately fund the National Institutes of Health (NIH).  Throughout my years in Congress, I have fought aggressively for the highest possible funding levels to research, treat and prevent illnesses, and have stressed the importance of understanding warning signs and the necessity of early testing. Earlier this year, I joined with other concerned Members of Congress in a letter to House appropriators requesting an increase of at least 7% in funding for NIH in Fiscal Year 2010.  You can view this letter at http://waxman.house.gov/approps/laborhhs.htm, and you can be sure I will do everything I can to ensure that NIH receives these funds.

With kind regards, I am

Sincerely,

HENRY A. WAXMAN

Member of Congress

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September 29, 2009 at 5:30 pm Leave a 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

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.

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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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