INFORMATION UPDATE
July 6, 2010
PLEASE NOTE: THE OVARIAN CANCER AWARENESS TAG WILL NOT BE AVAILABLE SINCE THERE WAS NOT A SUFFICIENT NUMBER OF APPLICATIONS SUBMITTED.
April 10, 2012
Dr. Walker spoke to the support group this morning about a grant she is working on. Please read over the email and attachments and pass the information along to other women. There will be more information on this as it develops.
Thanks,
Marilyn Dewey
Dr. Walker wrote:
I am working on a grant application to reduce the risk of ovarian cancer. It is based on the scientific plausibility that the cancer cells originate in the fallopian tube and by replacing tubal ligation with bilateral salpingectomy (removal of tubes) we can reduce the incidence and death rates from “ovarian cancer”. We will enroll two populations the average risk women wanting BTL and the high risk woman (BRCA 1&2 positive). I need your help, if you are willing.
Would love to talk to you.
Call any time
271-7770 (Tracey is secretary )
Cell phone 706-8600
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January 8, 2012
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June 2011
Are you interested in participating in our project promoting good sexual health and empowerment for women treated for breast cancer or
gynecologic cancer?
We are interested in YOUR opinion about a new sexual health educational booklet and would like you to read it over and answer a few questions about it.
If you are a woman who has been diagnosed with breast cancer or gynecologic cancer and want to find out more about this project, please go to http://nursing.ouhsc.edu/survey/AtoZ.cfm.
This project is funded in part by The American Cancer Society Grant #: 117514-PEP-09-200-01-PC
titled “Improving Communication about Sexual Health for Adults Living with Ovarian Cancer”
and has been approved by the University of Oklahoma Health Sciences Center IRB#15792.
Marianne Matzo, PhD, GNP-BC, FPCN, FAAN
Professor and Frances E. and A. Earl Ziegler Chair in Palliative Care Nursing
Sooner Palliative Care Institute: Dedicated to Excellence in Palliative Care Education, Research, and Practice
University of Oklahoma College of Nursing
Adjunct Professor, Department of Geriatric Medicine
1100 N. Stonewall Ave
Oklahoma City, OK 73117
(405) 271-1491, ext 49160 fax (405) 271-1224
Sooner Nursing: Integrity, Compassion, Excellence
April 2011
Update Ovarian Cancer License Car Tag
Last fall Senator Jim Halligan agreed to sponsor a bill for an Ovarian Cancer License tag. February 22, 2011 the bill passed the Senate 47-0, and was sent to the House of Representatives.
On March 9, 2011 Representative Lee Denney’s office advised that the bill will be assigned to a committee and if it passes the committee it will go to the floor for a vote. If that happens we will have 120 days to have the 100 pre-paid applications on file, if we don’t have the 100 pre-paid applications within that time frame, then the bill dies and goes away. If we have the applications needed it will go to the Governor to be signed.
If you want to purchase a tag please contact Connie Covington either by e-mail or telephone as she is keeping track of the total requested.
e-mail cbchope33@yahoo.com or call 405 282-2429 and please leave a message if necessary and she will return your call. Additional information will be forthcoming. If you have any questions please contact Connie and she will keep us updated “when” the bill passes.
THE OVARIAN CANCER NATIONAL ALLIANCE
APPLAUDS ENACTMENT OF JOHANNA'S LAW:
THE GYNECOLOGIC CANCER EDUCATION AND AWARENESS ACT
Washington D.C. - December 23, 2010. The Ovarian Cancer National Alliance is pleased that the President has signed and enacted Johanna's Law: The Gynecologic Cancer Education and Awareness Act. The 2010 version of Johanna's Law continues to authorize the Centers for Disease Control and Prevention (CDC) to develop and implement campaigns to raise awareness and educate women and medical professionals about the signs and symptoms of gynecologic cancers. The law allows the CDC to work with national organizations to leverage public-private partnerships and avoid duplication of services and materials. Further, in order to advance these efforts, CDC funding may be available to support public or private non-profit organizations in their efforts to increase awareness of gynecologic cancer symptoms. The Ovarian Cancer National Alliance continues to work with Congress to increase funding for - and support authorization of - Johanna's Law.
This is a reauthorization of a previous law. The law was originally enacted in 2007 and provided up to $16.5 million over three years to the CDC for awareness and education through a national public service campaign that includes written materials and public service announcements. The CDC-led campaign, Inside Knowledge: Get the Facts about Gynecologic Cancer, seeks to raise awareness of the five main types of gynecologic cancer: ovarian, cervical, uterine, vaginal and vulvar. Since 2007, champions and advocates worked to secure funding to implement the law through the annual appropriations process.
Rosa DeLauro, Representative from Connecticut and ovarian cancer survivor was one of the champions of the bill. "No one should have to depend on luck, and this bill will help to educate women, raise awareness of health care providers, and ultimately, save lives," she said.
"As a cosponsor, I am very pleased with the passage of Johanna's Law. I believe it will help inform young ladies as well as physicians about gynecological cancers," stated Representative Dan Burton. "It is extremely important that this be caught early. That is why this law is so important, because it gives women the opportunity to find out about the problems they may face so their survival rate can be increased substantially. A lot of women have lost their lives or had their lives shortened because they were misdiagnosed or the cancer was not noticed at all. This legislation not only improves awareness for the public but also for professionals in the medical field."
According to Dr. Karen Orloff Kaplan, CEO of the Ovarian Cancer National Alliance, "Johanna's Law is absolutely essential because it provides for robust educational programs for women and those who care for and about them - the only way currently to reduce the number of deaths from this hideous disease." Death rates from ovarian cancer have remained unacceptably high for more than 30 years; currently, fewer than half of women survive five years from diagnosis. Because there is no reliable early detection test, awareness of symptoms is key to detecting ovarian cancer. "Because ovarian cancer is the deadliest gynecologic cancer, it is crucial that the message about symptoms be front and center in this campaign."
The Ovarian Cancer National Alliance is the foremost advocate for women with ovarian cancer in the United States. To advance the interests of women with ovarian cancer, the organization advocates at a national level for increases in research funding for the development of an early detection test, improved health care practices, and life-saving treatment protocols. The Ovarian Cancer National Alliance educates health care professionals and raises public awareness of the signs and symptoms of ovarian cancer. The Ovarian Cancer National Alliance is a 501 (c) (3) organization established in 1997. |
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Ovarian Cancer National Alliance
910 17th Street, NW Suite 1190
Washington, DC 20006
(202)331-1332
ocna@ovariancancer.org |
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December 22, 2009: Action Alert! Legislative Update -- 2010 Appropriations More Info
Despite Strong Advocacy Efforts, FY 2010 Appropriations Low for Ovarian Cancer Programs
(WASHINGTON, DC) Last week, President Obama signed several spending bills outlining appropriations for Fiscal Year (FY) 2010, revealing disappointingly low funding levels for ovarian cancer awareness and research programs.
Earlier this year, the Ovarian Cancer National Alliance recommended that Congress appropriate $10 million to the Centers for Disease Control and Prevention's (CDC) Ovarian Cancer Control Initiative, a program that works to increase early detection and improve treatment options for ovarian cancer survivors. The Initiative was appropriated $5.7 million, 6 percent higher than the FY 2009 appropriation.
The Alliance also recommended that Johanna's Law: The Gynecologic Cancer Education and Awareness Act receive $10 million for FY 2010, but Congress appropriated $6.8 million - an increase of only 0.2 percent from FY 2009 levels. Johanna's Law authorizes the CDC to create and implement a national media campaign to spread awareness of the signs and symptoms of ovarian cancer.
Funding for the National Institutes of Health (NIH) was increased by 2.3 percent to $31 billion. The National Cancer Institute (NCI) was appropriated $5.1 billion, an increase of 2.8 percent. Both the NIH and NCI have received significant additional funding through the American Recovery and Reinvestment Act (ARRA): the NIH received $8.2 billion specifically for scientific research, of which $1.26 billion is set aside for NCI.
The final spending bill, the Defense Appropriations Bill, was signed by the President yesterday. The Defense Appropriations Bill includes spending levels for the Department of Defense's Ovarian Cancer Research Program (OCRP). The Senate recommended that the OCRP receive $10 million in 2010, while the House version of the bill contained $25 million for the program. The final version of the bill contains $18.75 million for the OCRP in FY 2010 - a $1.75 million decrease from the FY 2009 appropriation.
The Ovarian Cancer National Alliance and advocates from across the nation were joined by more than 90 Members of Congress to oppose the Senate's proposed cut to the OCRP. A letter to the Chairmen and Ranking Members of the Conference Committee, originating from the offices of Senator Menendez and Representatives Rosa DeLauro and Dan Burton, called upon the Conference Committee to allow the proposed House number of $25 million to prevail over the $10 million set by the Senate. The letter, sent in early November, was signed by 14 Senators, including Defense Appropriations Subcommittee Members Senator Feinstein and Senator Kohl, and 77 Members of the House.
Help us increase funding for ovarian cancer programs for 2011. Join us on Capitol Hill for Lobby Day on July 13, 2010 as a part of our annual Ovarian Cancer National Alliance Conference. To sign up, or for more information about Lobby Day, contact David Zook at dzook@ovariancancer.org.
If you would like to support the advocacy work of the Ovarian Cancer National Alliance, please donate by going to the following link: www.ovariancancer.org/party
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April 3, 2009
 The Ovarian Cancer National Alliance Plays Significant Role in Advocating PET Scan coverage for Medicare Patients
Friday, April 3, 2009 (WASHINGTON, DC): The Centers for Medicare & Medicaid Services (CMS) announced its decision earlier today to cover Positron Emission Tomography (PET scan) for ovarian cancer patients. In contrast, many other cancer patients who receive care through Medicare will be covered for only one PET scan as part of initial treatment strategy development. Those patients can receive subsequent PET scans from Medicare only through a large clinical trial designed to collect data for a process known as Coverage with Evidence Development (CED). Ovarian cancer is an exemption to this decision and ovarian cancer patients will be able to access PET scans whenever their providers determine that it is medically necessary in the context of subsequent treatment strategy. The Ovarian Cancer National Alliance worked diligently with CMS and the cancer community to ensure that CMS's decision supported ovarian cancer patients and is pleased with the resulting decision.
CMS already provides full coverage of PET scans for nine types of cancer: breast, cervical, lymphoma, melanoma, non-small cell lung, colorectal, esophageal and head and neck cancer. This coverage will be continued.
The Ovarian Cancer National Alliance was the only cancer patient advocacy group to testify at the Medicare Evidence Development and Coverage and Analysis Group meeting in August 2008. Cara Tenenbaum, Senior Policy Director for the Ovarian Cancer National Alliance, participated in the hearing. Tenenbaum noted that, "Our organization supports all evidence-based medicine and believes PET scans are a proven method for ovarian cancer patients when it comes to treating women who need restaging and or monitoring for recurrence or response to treatment. CMS's decision today will aid doctors and patients in having a full and accurate measure of ovarian cancer, not only assisting with more accurate treatments, but ultimately helping to save lives."
The National Oncologic PET Registry (NOPR) was a driving force behind the recent CMS decision because it proved thorough medical evidence that PET scans play a significant role in treating patients with cancer. The NOPR data showed that one-third of its PET scans led doctors to a change in treatment. For ovarian cancer patients, the data from the NOPR supports what patients already know - that PET scans are incredibly useful for restaging and monitoring recurrence:
- Overall, for the more than 4,500 ovarian cancer patients who had PET scans through the NOPR for any reason, approximately 40 percent had a change in treatment decision based on the results of the test.
- More than one-third of ovarian cancer patients who were enrolled in NOPR had a change in management from non-treatment to treatment, and 7 percent went from treatment to non-treatment.
- Of the women who received PET scans for staging purposes, 43 percent had a change in management. Of those who received PET scans for restaging, 37 percent had a change in management. And, of those receiving PET for recurrence, 44 percent had a change in management.
The decision reads: CMS has reviewed evidence on the use of FDG PET imaging to determine subsequent treatment strategy in patients with ovarian cancer. CMS has determined that the available evidence is adequate to determine that FDG PET imaging improves physician decision making in the determination of subsequent treatment strategy in Medicare beneficiaries who have ovarian cancer, improves health outcomes and is thus reasonable and necessary under§1862(a)(1)(A) of the Act. Therefore, CMS has determined that FDG PET imaging is nationally covered for this indication for this tumor type.
According to the American Cancer Society, 21,650 American women were diagnosed with ovarian cancer in 2008 and 15,520 died from it. Ovarian cancer is the deadliest gynecologic cancer and the fifth leading cause of cancer death among women in America. There is no reliable early detection test for ovarian cancer, a tumor which seeds and spreads easily throughout the peritoneal cavity. It is often difficult to measure response to treatment, the spread of the disease and possible recurrences. PET scans were considered so effective by doctors, that almost as many ovarian cancer patients were scanned through the NOPR as prostate cancer patients, even though there are 11 times more prostate cancer diagnoses per year than ovarian cancer diagnoses.
To learn more about the CMS PET scan announcement today or if you have additional questions, please contact Cara Tenenbaum, Senior Policy Director for the Ovarian Cancer National Alliance, by phone at 202.331.1332 or email at ctenenbaum@ovariancancer.org.
Established in 1997, the Ovarian Cancer National Alliance is the foremost advocate for ovarian cancer in the United States. The Ovarian Cancer National Alliance, a 501(c)(3) organization, leads the national initiative to conquer ovarian cancer. We unite individuals and organizations at the local, state, and national levels to advance ovarian cancer research, improve health care practices, and help raise public awareness of the symptoms about ovarian cancer. www.ovariancancer.org |
February 2, 2009
Dear Partner Members,
You may have seen the news articles about Medicare coverage of cancer drugs. A copy of the Wall Street Journal article is available on our web site – you can go to the “news” box on the right of www.ovariancancer.org or go directly to http://www.ovariancancer.org/index.cfm?fuseaction=Feature.showFeature&CategoryID=1&FeatureID=477.
The New York Times covered the same story here: http://www.nytimes.com/2009/01/27/health/27cancer.html?ref=politics. That article included this statement:
“In the case of Genentech’s Avastin, one of the world’s most expensive and widely used cancer drugs, Medicare rejected in 2007 nearly all of the estimated $16 million in requests from doctors’ offices to cover its off-label use for ovarian cancer, according to claims specialists who work with Medicare data but declined to be identified because of the controversy over the topic. Under the new rules, Avastin will be routinely covered for ovarian cancer — as will at least some other off-label uses, including for brain and kidney cancer.”
Under The Social Security Act Section 1861(t)(2)(B)(ii)(I), Medicare covers anticancer drugs and biologics which are indicated in the compendia. The article is referring to the fact that the Centers for Medicare and Medicaid Services recently added the NCCN compendium to the list of approved compendia.
The decision can be found here: http://www.cms.hhs.gov/mcd/ncpc_view_document.asp?id=14
So, the upshot is that Avastin, and anything else on the NCCN compendium (www.nccn.org), should be covered by your Medicare provider. I suggest double-checking the coverage before going ahead with a potentially costly treatment. If there are any snags in terms of coverage, please refer the administrator both to the above statute and CMS decision, which I believe should remedy any confusion easily. If not, please let me know!
I hope that this helps you and the women you serve.
Best,
Cara
Cara Tenenbaum, Esq.
Senior Policy Director
Ovarian Cancer National Alliance
202.331.1332 x300
www.ovariancancer.org
Join OCNA for its 4th annual benefit: TURN UP THE HEAT! A Celebration of Women Chef’s featuring TV Chef Sara Moulton
Tuesday, February 3, 2009 at 6:30 p.m., Ritz Carlton Hotel, Washington DC
Register at www.ovariancancer.org/benefit
November 17, 2008
Read the interesting article about Patrick Dempsey, Grey's Anatomy's Dr. McDreamy and his mother at: http://www.webmd.com/ovarian-cancer/features/patrick-dempsey-cancer-caregiver.
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November 11, 2008
President-Elect of the United States, Barack Obama, Endorses the Ovarian Cancer National Alliance
Having lost his mother to ovarian cancer, President-Elect Obama begins his term with a promise to reform healthcare and the War on Cancer.
November 5, 2008 (WASHINGTON, DC): The Ovarian Cancer National Alliance (OCNA) congratulates President-Elect Obama and looks forward to working with his administration in the fight against ovarian cancer. Mr. Obama has been a supporter of OCNA, endorsing the organization one year ago with the letter attached to this release.
President-Elect Obama’s personal experience with the toll of cancer – particularly ovarian cancer – has resulted in his support of various legislative objectives championed by OCNA. “Federal funding is critical in order to conquer ovarian cancer,” says Karen Orloff Kaplan, Chief Executive Officer of OCNA. “That is why we appreciate the early support of Senator Obama for the passage of Johanna’s Law: The Gynecologic Cancer Education and Awareness Act, as well as the Ovarian Cancer Research Program, one of the Congressionally Directed Medical Research Programs run by the Department of Defense.”
Increasing research, education, and awareness about ovarian cancer are essential because diagnosing the disease is difficult. The number of women diagnosed with ovarian cancer in its early stages is so small that the survival rates continue to be low. In more than 30 years since the War on Cancer was declared, ovarian cancer mortality rates have not significantly improved. Approximately 22,000 American women will be diagnosed with ovarian cancer in 2008 and about 15,000 will die from the disease.
The statistics on ovarian cancer are distressing and OCNA is pleased to see that the Obama-Biden plan on Strengthening Women’s Health provides a list of results-driven solutions that address women’s cancers and offers hope of more rapid movement toward conquering this disease including:
· Double federal funding for cancer research within 5 years
· Expanding access to lifesaving clinical trails
· Creating a new cancer survivorship initiative at the Centers for Disease Control (CDC)
· Ending insurance company discrimination against individuals with pre-existing conditions
· Continuing their long standing support on the Genetic Information Nondiscrimination Act, a measure recently signed into law that will prevent insurance companies from using information from genetic tests to restrict or deny coverage to individuals at risk from cancer and other diseases. This measure provides critical protection against losing health insurance or a job because of an elevated risk for some breast and ovarian cancers and as well as other disease that have probable genetic ties.
Copy of Barack Obama’s letter endorsing OCNA:
For more information about the Obama-Biden Strengthening Women’s Health Plan, click here.
For more information about the Obama-Biden Health Care Plan, click here.
For more information about the Obama-Biden overall Cancer Plan, click here.
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The Ovarian Cancer National Alliance (OCNA) mission is to conquer ovarian cancer to save women’s lives. Since its inception in 1997, ONCA has been the face and voice of a national network of ovarian cancer survivors and activists. OCNA advocates for increased federal funding for research that leads to an effective detection test, better treatments and ultimately a cure for the disease. OCNA also educates women and health care practitioners about ovarian cancer symptoms and risk factors to improve the chances that women will be diagnosed earlier. In addition, as the umbrella organization of 45 national, regional and local ovarian cancer groups, OCNA leverages the power of the growing number of voices demanding a different future for everyone who has been or will be touched by ovarian cancer. www.ovariancancer.org
Additional Information, contact:
Faryl Greller, Director of Communications and Marketing
Ovarian Cancer National Alliance (OCNA)
202.331.1332 (ext. 307) phone
fgreller@ovariancancer.org
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HOPE TO HELP FUND RESOURCE ROOM AT NEW CANCER INSTITUTE
At the recent HOPE board meeting, Laura Cross reminded us that it had been a special dream of Barbara Scheirman and Nancy Murphy, two of HOPE’s founding members, that the there could be a special place for patients and their families to attend lectures and programs relating to treatments, books and other media helping them understand their cancer and its treatment. To help make this dream a reality, and to honor Dr. Rhonda Johnson, who has given so much time and energy to the HOPE group, the Board voted to begin a fund to be designated as the “Rhonda Johnson Fund” to purchase furnishings, bookshelves, computers, etc. for a resource and education library in the new Cancer Institute where space has already been allocated. We hope to raise $20,000 eventually in order to name and supply the room and call it the “HOPE Patient Resources Room”.
Anyone wishing to contribute to this fund can specify “Resource Library” on their check.
