Janetnews.com Blog

I just got this in my email:

OCTOBER 1, 2008 (WASHINGTON, DC): On September 30, President Bush signed a funding measure which included $20 million for the Department of Defense (DoD) Ovarian Cancer Research Program. This is an amazing accomplishment for the advocates and partners who have been fighting for an increase in federal funding for the past six years. Earlier in 2008, the House of Representatives draft bill contained $25 million in Fiscal Year 2009 (FY09) to the DoD Ovarian Cancer Research Program to help maintain current research and expand innovative investigations into early detection and screening tools. While $20 million is not the full $25 originally requested, the ovarian cancer community is pleased that Congress has recognized the importance of the DoD program and the need for increased funds for ovarian cancer research.

Since 1997, the DoD has had a Congressionally Directed Medical Research Program to eliminate ovarian cancer - the Ovarian Cancer Research Program. The Ovarian Cancer Research Program is a peer-reviewed and highly competitive bid program. In 2008, the DoD program was only able to award approximately 17 of the 250 scored grants on the $10 million appropriation. Since 2004, this program has received $10 million per year to fulfill its goal of eliminating ovarian cancer by stimulating and supporting innovative, multidisciplinary research efforts that will lead to better understanding, detection, diagnosis, prevention and control of ovarian cancer. The accomplishments of this fund include:

• Researchers discovered biomarkers for early stage ovarian cancer
• Development of animal models to study ovarian cancer
• Discovery of biomarkers that predict survival
• Establishment of tissue repository and registry
• Published 164 papers in gynecology oncology
• Discovery of the type of cells that control ovarian cancer
• Understanding of platinum drug uptake, which will be used to address chemotherapy resistance

“The Ovarian Cancer National Alliance is very pleased with the $20 million appropriation,” says Karen Orloff Kaplan, Sc.D. Chief Executive Officer of OCNA. “This money serves as a life line to ovarian cancer research and provides medical scientists and professionals the resources they need to help find an early detection test and eventually, a cure.”

More research and funding for ovarian cancer are essential because diagnosing the disease is so daunting; only 20% of women diagnosed are in Stage I. In the more than 30 years since the War on Cancer was declared, ovarian cancer mortality rates have not significantly improved. About 22,000 American women will be diagnosed with ovarian cancer in 2008 and 15,000 women will die from the disease.

Congress plays an integral role in the DoD program by maintaining the structure of the Ovarian Cancer Research Program as an independent, site-specific, dedicated research. Furthermore, Congress determines the appropriations level each year.

“The DoD’s $20 million dollar appropriation comes at a time when the House and Senate just passed Awareness Resolutions officially proclaiming September as ovarian cancer awareness month,” says Cara Tenenbaum, Senior Policy Director of OCNA. “Capitol Hill is making large and small milestones toward the fight against ovarian cancer and we look forward to working with Congress to keep the momentum going.”

Here’s an interesting article about the fight against cancer.  I really like what the oncologist says below.  Don’t refer to cancer as a fight–because it implies someone or something will win.

Rethinking the war on cancer

We also tell you about Mayberry because of something Boston oncologist (and cancer survivor) Therese Mulvey told us. She has seen real progress in her 19 years in practice, but the upbeat focus on cancer survivors, cancer breakthroughs and miracle drugs bothers her. “The metaphor of fighting cancer implies the possibility of winning,” she said after seeing the last of that day’s patients one afternoon. “But some people are just not going to be cured. We’ve made tremendous strides against some cancers, but on others we’re stuck, and even our successes buy some people only a little more time before they die of cancer anyway.” She pauses, musing on how the uplifting stories and statistics—death rates from female breast cancer have fallen steadily since 1990; fecal occult blood testing and colonoscopy have helped avert some 80,000 deaths from colorectal cancer since 1990—can send the wrong message. “With cancer,” says Mulvey, “sometimes death is not optional.”

One year later, and it still hurts.  Losing my mom(Patricia Jean Johnson) to ovarian cancer was the most painful experience of my life.  I don’t want anyone to forget her.  I want her memory to still live on.  I miss her laughter, her advice and most of all her love.  If I had one wish, it would be to cure cancer so mothers like mine would never have to suffer like she did.  

Below is a picture of my Mom and Vince Gill.  It was a happy time when life was simple and happier.  I think this was Fall 2003 when she accidentally bumped into Vince Gill while getting BBQ in Nashville– just four years before anyone knew she would be gone.  How I wish I could jump into this picture and give her a hug!

I received this alert in my email today about more funding for Ovarian Cancer Research.

House Subcommittee Provides $25M for Ovarian Cancer Research

Yesterday the House Appropriations Subcommmittee on Defense marked-up the FY09 defense appropriations bill.  According to Chairman Murtha’s statement on the DOD appropriations bill, the bill includes $25M for ovarian cancer research.  The bill still has to be approved by the full House Appropriations Committee, the full House of Representatives and the Senate. We have a long way to go, but it is a great start.  We wouldn’t have such a great start without your hard work over the last several months urging Members to sign letters in support of an increase, to talk to Chairman Murtha, and to support the increase! (See more about our efforts below.)  You’ve called, you’ve e-mailed, you’ve made personal visits and your efforts paid off.

Thank you so very much!

Here’s a copy of a letter I sent to my U.S. Texas Senators and House Representatives to gain more support for Ovarian Cancer Research.

On Thursday, July 10, constituents visited your office seeking support for Ovarian Cancer research, prevention and education in FY 2009. I know my fellow constituents left you with literature about our request. Just in case, here is a quick summary of exactly what we need from you to help us fight Ovarian Cancer in FY 2009:

• Allocate $10 million in FY 2009 to the CDC Ovarian Cancer Control Initiative to expand activities that increase early detection, improve treatment options and enhance survivorship. The CDC’s highly-developed network of health care providers and cancer registries spearheads efforts in educating providers in identifying ovarian cancer symptoms and utilizing best practice guidelines.
• Support Ovarian Cancer Awareness Month and its goals (H.R. 671/Stabenow-Dole Resolution)
• Increase NCI funding by 9.5% to support and expand efforts to reduce cancer incidence and mortality and advance important research and awareness efforts that contribute significantly to our nation’s battle against ovarian cancer.
• Provide full funding in the amount of $16.5 million over three years, including $10 million in FY 2009, to support the implementation of “Johanna’s Law” (P.L. 109-475) – the Gynecologic Cancer Education and Awareness Act – which authorized a three-year national gynecologic cancer early detection and awareness campaign directed at women and healthcare providers.
• Provide $25 million in FY 2009 for the DoD Ovarian Cancer Research Program, which funds multidisciplinary research that employs innovative methods of investigation and grants awards to new investigators. In 2005, researchers discovered several biomarkers for early stage ovarian cancer, with the prospect of developing this information into an effective and much-needed early detection test. Additional funding will speed the development and clinical testing of a reliable, early detection tool – reducing and preventing suffering from ovarian cancer.

I would appreciate if you would inform me of the Congressman’s position on these initiatives.

On a more personal note, on Monday, I celebrated what would have been my mom’s 68th birthday. Her doctor ignored all the early detection symptoms that she described to him. I believe with all my heart that with the proper education for both my mom and her doctor it would have led to an earlier diagnosis of ovarian cancer. Unfortunately, she was diagnosed with Stage IV C ovarian cancer in May 2006 and died over a year later on August 2, 2007. This is why I encourage the Congressman to support research, prevention and education for Ovarian Cancer in FY 2009. It is vital to saving more mothers’ lives.

Please thank your office for taking the time to visit with the constituents on July 10, and I encourage the Congressman to support Ovarian Cancer Awareness month this September with a mention in the newsletter and Web site.

Best,
Janet Johnson

The Result: A phone call from one House Representative’s office telling me what they are doing to fight ovarian cancer and that we have an advocate on the Hill! Yay!

Here is what we need from Congress to allow more funding for education and funding for a screening test so ovarian cancer is detected before it’s too late:

Congressional Update
Budget Outlook for Fiscal Year 2009
The Alliance will be supporting our Policy Priorities for FY2009 which
include

* Passing the Ovarian Cancer Biomarker Research Act
* Appropriating $25 million for the Department of Defense Ovarian Cancer
Research Program
* Appropriating $10 million for the implementation of Johanna’s Law: the
Gynecologic Cancer Education and Awareness Act (P.L. 109-475)
* Appropriating $10 million for the Ovarian Cancer Control Initiative
* Increasing appropriations by 9.5% for the National Cancer Institute

Write your Congress representative today to help push these initiatives through to save lives. Statistics show 75% of women diagnosed with Ovarian Cancer die. Yes, die! This statistic is too high. Mortality rates are not decreasing as other known cancers. Help support funding for the fifth leading cause of death of women.

Take a moment today and call your U.S. Senators and U.S. Representative and let them know you support the Ovarian Cancer Research Program funding of $25 million for the Fiscal Year of 2009.

Here’s how you find numbers and what to ask for: Take Action!

It took me 10 minutes to talk to all three of my Congress reps. It’s not a long time, but it may turn up the volume on this silent killer.

The one regret about my mom’s illness is that she did not have “The Talk” by her doctor that her cancer was terminal.  In my heart I knew there were no more options but the doctor could have told us our next step.

Most cancer doctors avoid saying it’s the end

Only one-third of terminally ill cancer patients in a new, federally funded study said their doctors had discussed end-of-life care.

Surprisingly, patients who had these talks were no more likely to become depressed than those who did not, the study found. They were less likely to spend their final days in hospitals, tethered to machines. They avoided costly, futile care. And their loved ones were more at peace after they died.

 

Cancer Groups Testify regarding Department of Defense Research Programs 

Using those figures, ovarian cancer research is drastically underfunded (PDF). Last year the Congressional Directed Medical Research Programs funded $138 million for breast cancer research, $80 million for prostate cancer research and $10 million for ovarian cancer research. This funding represents $3,000 for each breast cancer or prostate cancer death—but only $650 for each ovarian cancer death.

Mark Carlebach, the widower of Lacey Gallagher, represented the Ovarian Cancer National Alliance in requesting $25 million for Fiscal Year 2009. Carlebach told Congress about his wife and her proposal that advocates should change their argument for research money. Before her death, Ms. Gallagher suggested that advocates look not at the total amount of money allocated by cancer type, or by cancer incidence, but by cancer mortality.

  I fully agree with looking at the cancer mortality.  There’s a problem that after 20 years, ovarian cancer mortality rates have NOT decreased.

I received this Alert in my email today. Click on Take Action below and a letter is prepared for you to email your Senators and House Representative in your area.

Congress is Considering Additional Funding for NIH & FDA
Support Additional Funds for NIH and FDA
Take Action!

Congress is considering the FY 2008 supplemental appropriations bill this week. The committee intends to include $400 million for the National Institutes of Health in this spending package. If successful, the committee would provide the National Cancer Institute with up to an additional $65 million on top of the $4.8 billion already appropriated in FY 2008. The inclusion of these funds in a supplemental funding bill is extremely rare and illustrates the strength of support that cancer research has in Congress.

In FY 2008, NCI received a budget increase of 0.3 percent over FY 2007, while biomedical inflation rose approximately 3.5 percent. Five years of flat funding have significantly hindered research progress and have forced NIH and NCI to make difficult funding decisions and to make painful cuts to ongoing research projects, including the delay and scaling back of clinical trials. When the NCI budget falls, we see that ovarian cancer research is cut back significantly.

This additional $400 million would be enough for NIH to support an additional 700 research grants in FY 2008 at institutions across the country. An additional $65 million to NCI is much needed and will help NCI to maintain support for research and much-needed access to valuable clinical trials.

Secondly, Senator Herbert Kohl (D-WI) has offered an amendment to include an additional $275 million for FDA in the supplemental which will help ensure patient access to safe and effective drugs and therapies. Funding for FDA has not kept pace with inflation in recent years so this additional funding is needed now more than ever.

Please contact your elected officials to tell them that you support increased funds for drug safety and cancer research.