Ovarian cancer national alliance

MIOCA NEWS

MIOCA in the news:

On WXYZ, WGVU - Family Health Matters , WDET - The Craig Fahle Show , 1290 WLBY - The Lucy Ann Lance Show , WEMU, 107one - The Martin Bandyke Program, WTKA Sports Talk 1050 - The Michigan Insider, U of M Nursing School website , Ann Arbor.com , Observer & Eccentric,  Rochester Post , Northville Record , Detroit Free Press , MLive , Detroit Jewish News , WZZM13 , WXZY and Sunday Edition on: WXYT-FM & AM, WOMC-FM, WYCD-FM, & WDZH-FM

Read about MSU alumni director, Scott Westerman, challenging Spartan faithful in response to “Go Blue” over MSU stadium, raising thousands of dollars for the Michigan Ovarian Cancer Alliance: Detroit Free Press , Mlive and more on the news page.

 Ovarian Cancer National Alliance Annual Conference

This year’s conference in Washington DC marked the 15th anniversary of the Alliance and MIOCA Vice President Marcie Paul attended. The 4-day national event featured informational sessions on clinical trials, research updates, drug shortages, genetics, Healthcare Reform as it relates to cancer patients and much more. One of the many highlights was high school student Jack Andraka, winner of the Intel International Science and Engineering Fair, discussing his award-winning test for ovarian cancer detection. The conference concluded with a full slate of Advocacy Day meetings on Capitol Hill. Marcie met with several Michigan and Indiana legislators, including Senator Debbie Stabenow.

View conference materials and read more about the topics, speakers and Advocacy Day meetings in EVENTS (scroll down to PAST EVENTS).

Meeting with Senator Stabenow's Staff

Alex Scheff, Senator Stabenow’s Health Policy Legislative Assistant made his annual visit to Michigan last month to meet with a select few constituent groups, which included MIOCA. Pam Dahlmann, Marcie Paul, Peggy Pitt and Terrie Karebian represented us at the meeting. Barb McCallahan, Senator Stabenow’s Director of Community Affairs also attended. Several issues of critical importance to women with ovarian cancer were discussed. This included federal research funding and the national shortage of some life saving medications (chemotherapy and anesthesia) required to treat ovarian cancer.

One legislative attempt to help mitigate the drug shortages is the reauthorization of the Prescription Drug User Fee Act, which Congress passed at the end of May and Senator Stabenow supported. It has new provisions that improve the FDA’s inspection process for foreign manufacturing facilities and calls for advance notice of potential shortages. However, we discussed how some problems would likely remain and that it is important to keep attention on the issue. For this reason we will continue to work with the Alliance and the American Cancer Society to ensure government responsiveness, but we need your help. Please continue to tell your legislators how these shortages are threatening patient care and by sharing your story with us, we can help make sure Congress hears your voice.

Regarding research funding, we thanked Senator Stabenow for responding to our call to sign onto the Menendez-Snowe letter requesting an increase in DoD funding for FY 2013. But we also talked about the need to continue to contact Congress throughout the appropriations process to ensure the final budget contains the $20 million funding level.

Alex indicated that Senator Stabenow would again sponsor a resolution designating September as Ovarian Cancer Awareness Month. We are very appreciative of this, as well as the opportunity to meet with her staff and hear our concerns.

MIOCA on the air

MIOCA Vice President, Marcie Paul recently appeared on WGVU’s Family Health Matters, which aired in the western Michigan area following the documentary, “The Whisper: The Silent Crisis of Ovarian Cancer”.  WGVU is a PBS affiliate located in Grand Rapids and for more than a decade, Family Health Matters has offered an in-depth examination of health issues affecting people in western Michigan. The half hour television show, with host Shelley Irwin, covered several topics related to ovarian cancer ranging from survivorship issues to the challenge of early detection. It provided a valuable forum for increasing awareness about this deadly disease and MIOCA’s efforts to fight back.

TEAL OUT benefits MIOCA

We are immensely grateful to the St Mary Catholic Central High School and Airport High School Interact Clubs for organizing a massive TEAL OUT at their recent basketball game. Many thanks to Ray Lauers of St Mary’s and Gail Meyer of Airport for their leadership as well as the basketball teams and entire community for ice cream social, raffle and t-shirt sales that benefited MIOCA. We were honored to be presented with the donation at halftime of this spirited rivalry.

Thank you and Go Jets, Falcons and Team Teal!

Heaven’s Newest Little Angel

MIOCA deeply mourns the death of 8 year old Mariel Almendras. She was diagnosed with Sertoli-Leydig ovarian cancer in 2009 at the age of 6 and was taken from us on Thanksgiving Day.  
Mariel first brought joy to MIOCA when she helped during our first Turn The Towns Teal campaign for National Ovarian Cancer Month. She had many dreams to advance ovarian cancer treatment, awareness and fundraising. We hope to make them a reality for her and all of our fallen heroines. Please join us in supporting Mariel’s family with prayers and continued ovarian cancer awareness.

Read more about Mariel.

Thank you for Swimming for a Cure

MIOCA sends a special thanks to the Dundee Varsity Girls Swim Team for the tremendously successful fundraising effort, “Swimming for a Cure”. Leading the effort were Baleigh Schuler, in honor of her mother and ovarian cancer survivor Janet Schuler, in addition to Co-captains Brooke Edwards and Hailey Buhl and their parents. MIOCA salutes them; they are all champions both in and out of the water!

News

Michigan Ranked 28th in US on Provision of Care to Ovarian Cancer Patients

The study reports that Michigan law helps women access quality care for ovarian cancer by requiring coverage of routine costs of care for those enrolled in clinical trials and off-label use of prescription drugs. There is also a fair amount of education and awareness efforts in the state, including the newly established Partner Member, MIOCA and participation in the Survivors Teaching Students® program.
Ovarian cancer affects one in 71 women in the United States; approximately 22,280 women will be diagnosed with ovarian cancer this year, including an estimated 820 women in Michigan. With no early detection test and a high mortality rate, it is essential that women have access to the care they need to diagnose and treat ovarian cancer. As this new report shows, where a woman lives can have a dramatic effect on her access to health care and support services related to her disease.
“Every state has room for improvement when it comes to women with ovarian cancer,” notes Cara Tenenbaum, Vice President for Policy and External Affairs at the Ovarian Cancer National Alliance. “The good news is that we have some programs that work—from laws ensuring coverage of second opinions to local groups providing support services and education around ovarian cancer,” Pam Dahlmann, MIOCA President, commented. “However, our legislature could further help ovarian cancer patients by passing laws that ensure coverage for medically appropriate diagnostic testing and by strengthening the our genetic discrimination laws.”
Ovarian Cancer: A Call for State Action examined laws, policies and programs in four broad categories.
 Access to Care—Optimal care for women who are suspected of having ovarian cancer includes prompt diagnosis, surgery performed by a gynecologic oncologist and access to the full range of care along the continuum of their disease. This encompasses monitoring high-risk women and those in remission, treating those with active disease, providing support services at all points and assisting with end-of-life issues.
 Education—Educating women and providers about the symptoms and risk factors of this disease would improve the odds that a woman would seek appropriate medical care and be diagnosed promptly.
 Quality of Life—Support services that help a woman cope with her diagnosis and treatment are an essential component of quality care for ovarian cancer. In addition to patients, family members and caregivers often need emotional, financial and/or medical help.
 Research—Despite improvements in diagnosing and treating ovarian cancer, death rates have not changed significantly in the more than 40 years since the War on Cancer was declared. Research is essential to find better tools for diagnosing and treating this disease.
An advisory committee composed of experts in policy, women’s health and oncology determined the criteria and their relative weights in the scoring system. States were ranked based on their overall score. Also included in the report are recommendations for advocates and legislators, as well as sample legislation addressing many of the variables used to evaluate states’ provision of care to women with ovarian cancer. “Our goal is to start a conversation about how policies and programs within a state affect ovarian cancer patients,” according to Cara Tenenbaum, Vice President for Policy and External Affairs at the Ovarian Cancer National Alliance “We hope this report will stimulate advocates and legislators in Michigan to improve their environment for anyone struggling with a serious illness—not just women with ovarian cancer. The Ovarian Cancer National Alliance and our national network of supporters stand ready to assist anyone who wants to implement the policies and programs we recommend in this report.”
Ovarian Cancer: A Call for State Action is available at ovariancancer.org/report-card.