Tag Archives: Clinical trials

NCI’s Pat Steeg: Let’s Redesign Clinical Trials to Test Therapies That Prevent Metastasis

More than 200 people with metastatic breast cancer and their supporters came to Chicago for the 2012 National Metastatic Breast Cancer Conference held on Oct. 13th, National Metastatic Breast Cancer Awareness Day. Photo credit: Ellen Schor

As hundreds of metastatic breast cancer patients offered a standing ovation, the Metastatic Breast Cancer Network (MBCN) presented Dr. Patricia Steeg with the Ellen Moskowitz and Suzanne Hebert Leadership Grant Award. The award was given at MBCN’s 6th Annual National Conference which took place Oct. 13, 2012 at Northwestern’s Lurie Cancer Center in Chicago.

“For the last 20 years, in her laboratory at the National Cancer Institute, in Bethesda, Maryland, Dr. Patricia Steeg has been researching how cancer cells from the primary tumor in the breast travel to vital organs, in particular the brain,” said Shirley Mertz, MBCN board member and prominent patient advocate. “Dr. Steeg identified the first cancer suppressor gene and has done pioneering work on brain metastasis. Although metastatic research is difficult and involves long and complex experiments, Dr. Steeg remains undeterred. She exerts strong leadership in the research community nationally and internationally.”

 

Shirley Mertz with NCI’s Pat Steeg

The award—which includes a monetary grant to be used for metastatic research—is named after MBCN’s former President, Ellen Moskowitz, and former Vice-President, Suzanne Hebert.  “Ellen and Suzanne worked side by side for five years to establish MBCN as the voice of people living with metastatic breast cancer,” said Mertz. “Together, they pushed for change and inspired many to take action to promote awareness and provide education for metastatic breast cancer patients and professionals alike.”

The MBCN board wanted to honor these remarkable women by recognizing a scientist and researcher whose persistent leadership and work embodies what Ellen and Suzanne fought for—research about metastatic disease that could result in treatments to extend the lives of metastatic breast cancer patients.

Mertz presented the award to Steeg “with great appreciation and anticipation for the future…along with our deep thanks for your dedication and persistence in metastasis research.”

Prior to accepting the award, Steeg gave a presentation on “Research on Treatment to Contain Metastatic Growth.” The researcher made a case for redesigning clinical trials to do what she termed “phase II randomized metastasis-prevention trials.” Currently, phase I and phase II clinical trials are done in patients with advanced, refractory metastatic cancer, patients who have had many therapies. In phase II trials, researchers typically are trying to determine if a drug shrinks metastases.

“But a drug that prevents metastasis may not shrink a large, refractory tumor,” said Steeg. “It has a different mechanism of action that is not picked up by the clinical trial system.” (Steeg referenced a perspective piece, “The Right Trials,” she wrote for Nature this past May: http://www.nature.com/nature/journal/v485/n7400_supp/full/485S58a.html)

Conference chair and MBCN board member Deb Tincher noted that many attendees cited Steeg as their favorite speaker at the 2012 event. “One person described Dr. Steeg as ‘spectacular and passionate’ and we certainly agree,” Tincher said. “We also agreed with the rest of her comment: ‘Dr. Steeg is in the trenches helping us and it showed!’ We are proud to recognize and support Dr. Steeg’s work.”

“I’m glad Dr. Steeg is on our side!” said one metastatic breast cancer patient at the 6th Annual MBCN Conference.

 

ABOUT MBCN’s ANNUAL CONFERENCE

MBCN held its first conference at Memorial Sloan-Kettering Cancer Center in 2006. Subsequent conferences have been held at M.D. Anderson, Dana-Farber, Indiana University’s Simon Cancer Center and at Johns Hopkins.

 

ABOUT THE METASTATIC BREAST CANCER NETWORK

MBCN is a national, independent, nonprofit, patient advocacy group dedicated to the unique concerns of the women and men living with metastatic breast cancer. MBCN was founded in 2004 by Jane Soyer and Nina Schulman. When diagnosed with advanced breast cancer, they experienced feelings of isolation from the very groups established to provide support. They felt the stigma of being a “failure” in the breast cancer community. Their belief that cancer cannot be viewed as a disease from which one is either a “survivor” or to which one has succumbed, fueled their desire to advocate for change.  See www.mbcn.org.

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More Cause for Applause

Earlier I wrote about MBCN,   a national, independent, patient-led, nonprofit advocacy group for people with metastatic breast cancer. Here are five other groups worthy of wider recognition. (What group(s) would you suggest? Leave a comment and let me know!)

Metavivor: Making a Difference for People with MBC

In June 2008 Dian “CJ” M. Corneliussen-James attended a breast cancer seminar with three friends. Numerous attendees rose in turn to celebrate their survivorship. They credited their status to being vigilant, courageous and  having the will to live. The moderator said it was wonderful breast cancer was no longer a secret and  invited all of the survivors present to stand.

“My friends and I looked at each other.  We were definitely ‘vigilant,’ we were certainly ‘courageous’ and our ‘will to live’ was absolute,” recalls Corneliussen-James. “But … no longer a secret?’ Survivors? We shook our heads. Those terms did not pertain to us.  Should we stand?  Should we speak out? It was clear this was going to be like so many other conferences.”

Corneliussen-James and her friends decided they would speak out. They formed Metavivor, a nonprofit, volunteer-run group. In addition to providing support and awareness for people with MBC, the group funds an annual research grant.

“We ask that the organizers of breast cancer conferences include speakers on metastatic breast cancer,” Corneliussen-James says.  “We ask that they have literature available on the disease and that they receive and respond in detail to questions asked concerning our condition.  We ask that in addition to applauding the 2.5 million ‘survivors,’ those valiantly battling stage IV breast cancer also be applauded.  And we ask that there is a moment of silence for the millions who have died of the disease. “Further, we ask that ‘survivors’ be sensitive when they speak at conferences and public forums and be ever cognizant of the fact that many do not survive this disease and persons struggling with stage IV breast cancer might well be in the audience. ”

When people are donating to cancer research, Metavivor asks them to consider supporting organizations that have a posted policy to award a specific share of monies received to research aimed at eradicating  cancer that has metastasized.

Last year the Annapolis, MD-based group raised $50,000 to fund the work of Dr. Danny Welch, a leading metastatic researcher who has observed that MBC accounts for 90% of the morbitity/mortality but gets 5% of breast cancer funding.

The Metavivor financial statement is  simple: $50,000 raised and 100 percent of those funds investedin MBC research. They are holding a fundraiser this week.

Driving Miss Darby: Supporting Clinical Trial Participants

In 2004, at age 34,  Darby Steadman presented with DCIS. In 20o7, she learned her cancer had metastasized.

Steadman participated in  Dr. Leisha Emens’ breast cancer vaccine trial several years ago at  Johns Hopkins.

“We (all the trial participants) were all at Stage IV by that point,” she said. “It was our last hope.”

Steadman lived within driving distance of Johns Hopkins, but many of her fellow trial participants traveled much further. “I  learned that many of them had maxed out their credit card bills to pay for their airline tickets, meals and car rentals,” she told a reporter. “Others commuted, five, six, seven hours each way and would head back the same day so they [could minimize time off from work].”

Steadman and her friends created the foundation  to defray clinical trial participants’ travel, lodging and medical expenses. The groups summarizes its goals as: Awareness, Accrual & Assistance.

Chronic Disease Fund Helps Patients Foot Their Bills

Established in 2003, the Chronic Disease Fund ensures that underinsured patients have access to the new, breakthrough medications and treatments that help patients live longer, happier, more productive lives.

Chronic Disease Fund quickly became the largest copay organization in the country. In 2009, it helped more then 60,000 people get the medications they needed.

The Abigail Alliance: Getting Promising New Drugs to  Market Sooner

Abigail Burroughs died at age 21 because she couldn’t get  an experimental cancer drug. After Abigail’s death, her father Frank Burroughs, formed the Abigail Alliance for Better Access to Developmental  
Drugs.

The Abigail Alliance is committed to helping create wider access to developmental cancer drugs and other drugs for serious life-threatening illnesses. It promotes creative ways of increasing expanded access and compassionate use programs.

The group was recently featured in what Burroughs calls one of the best pieces done on the group. The Abigail Alliance is the second interview at http://www.biocenturytv.com.

Sisters Network: Stopping the Silence

Karen Eubanks Jackson is the founder & CEO of Sisters Network Inc. (SNI),  the only African American breast cancer survivorship organization. She is a 15-year breast cancer survivor.

She created SNI  in 1994 in response to a lack of sisterhood in traditional organizations, a staggering breast cancer mortality rate for African American and limited culturally sensitive material.

Jackson’s primary motivation was to break through the silence and shame of breast cancer that immobilizes African American women, restricts their ability to receive support services, interferes with early detection, and ultimately affects their survival rates. SNI currently has 42 survivor-run affiliate chapters, serving more than 3000 members and associate members nationwide.

The 12th Annual National African American Breast Cancer  Conference will take place May 12-15, 2011 in Baton Rouge.


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