Metastatic Breast Cancer Researchers Address MBC Alliance Meeting This Week

Advocates, researchers, industry and government representatives are at the Alliance’s meeting, including MBCN’s own Shirley Mertz

 

Metastatic Breast Cancer Alliance Research Task Force Meets Today in Dallas; Focus of Discussion is Improving Length and Quality of Life for People Living With Metastatic Disease

Dallas – February 1, 2016 – Metastatic breast cancer (MBC) is cancer that originated in the breast but has spread to other parts of the body, such as liver, lung, bones and brain. It causes >40,000 deaths every year in the U.S., a number that has remained unchanged for three decades.  

This alarming fact is driving the advocate-led Metastatic Breast Cancer Alliance (“the Alliance”) to convene 60 experts from patient advocacy, academia, industry and government to discuss barriers in MBC research and possible solutions to better coordinate and accelerate research and translation to help patients sooner.

“As a person living with MBC each day, I’m grateful for the scientists and experts who have taken time out of their busy schedules to help guide the Alliance in the most thoughtful directions for MBC research,” commented Shirley Mertz, President of the Metastatic Breast Cancer Network and Co-Chair of the Research Task Force.  

Dr. Danny R. Welch, Professor and Chair of Cancer Biology at the University of Kansas Cancer Center noted at the start of the meeting that “My career has been focused on research on metastasis and putting an end to breast cancer. I have never seen as much energy, collaboration and excitement to work together – across academic, patient advocacy, industry and government sectors- as I have by working with this Alliance.”  

“As Co-Chair of the Alliance Research Task Force, along with Shirley Mertz, we’ve been working with these experts for the last eight months [by phone and webinar] discussing barriers to MBC research,” said Stephanie Reffey, Managing Director, Evaluation and Outcomes at Susan G. Komen, today. “These prior meetings culminated in today’s “Think Tank” in Dallas, where we are devising specific, actionable projects the Alliance can lead to accelerate MBC research.”  

In 2014, the Alliance released its Changing the Landscape for People Living with Metastatic Breast Cancer Report, which analyzed 224 clinical trials, 2281 funded research grants, 7900 MBC patient responses to surveys and 175 literature articles on quality of life and epidemiological studies.  

“Our research of the scientific landscape found a number of gaps and challenges in lab research and clinical trials impeding progress in scientific research,” said Chair of the Alliance, Dr. Marc Hurlbert. “After today, the Alliance’s task is to now facilitate a cooperative effort to review the objectives from this meeting and develop actions that can be taken in the immediate term. Given the toll MBC takes on patients and their caregivers, we have a responsibility to waste no time acting on the direction from this important meeting.”  

Representatives at the meeting in Dallas include:
Advocate Nonprofits: Breast Cancer Research Foundation, BreastCancerTrials.org, Dr. Susan Love Research Foundation, Inflammatory Breast Cancer Research Foundation, Metastatic Breast Cancer Network, Patient Advocates In Research (PAIR), Research Advocacy Network, Susan G. Komen, Theresa’s Research Foundation  

Academic Institutions: Baylor College of Medicine, Broad Institute, Dana-Farber/ Harvard Cancer Center, Fred Hutchinson Cancer Research Center, Institute of Cancer Research (UK), Johns Hopkins University School of Medicine, NYU School of Medicine, Salk Institute for Biological Studies, Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, University of California San Francisco, University of Kansas Cancer Center, University of Michigan, University of Pittsburgh Cancer Institute, University of Southern California, University of Washington School of Medicine, University of Texas MD Anderson Cancer Center
 

Government: U.S. Food and Drug Administration, National Cancer Institute
 

Industry: Eli Lilly and Company, Genentech, Novartis Pharmaceutical Corporation, Pfizer Worldwide Research & Development
 

About the Metastatic Breast Cancer Alliance
The Metastatic Breast Cancer Alliance is led by advocates and, since forming with 15 groups in October 2013, has grown to be the largest breast cancer alliance in the U.S. with 40 of the leading cancer charities, advocacy groups and individuals and pharmaceutical industry partners. The Alliance vision is to transform and improve the lives of people living with metastatic breast cancer. The Alliance’s work focuses on three outcomes:
1. Advancing progress in scientific research
2. Increasing understanding of the disease and access to information and support
3. Building awareness of how metastatic disease differs from early stage breast cancer
 

More information about the Alliance is available at www.mbcalliance.org
Facebook: https://www.facebook.com/mbcalliance/
Twitter: @mbcalliance #MBCResearch
YouTube: http://www.youtube.com/mbcalliance

RIP Laurie Becklund: Journalist Wanted Big Data to Tackle Metastatic Breast Cancer

Laurie’s 2014 MedX talk

Journalist Laurie Becklund died on February 8, 2015 from metastatic breast cancer at age 66. On February 20, 2015, Laurie’s byline appeared in the Los Angeles Times for the last time.

In an Op-Ed piece called “As I Lay Dying,“ Laurie explained how she came to be one of 150,000 US people living with metastatic breast cancer and one of the 40,000 Americans this incurable disease will kill this year.

As Laurie noted in her opening sentence, metastatic breast cancer is the kind that kills people–no one dies from early-stage breast cancer. But as Laurie discovered, cancer can come back–even decades after someone successfully completes their treatment. In Laurie’s case, her breast cancer came back 13 years after her initial diagnosis. Scans revealed the cancer was now in her bones, liver, lungs and brain. When cancer spreads outside the breast, it is no longer curable–with metastatic breast cancer the goal is to control the disease for as long as possible.

For the past six years, Laurie, like most people diagnosed with metastatic  breast cancer, lived her life in three-month increments. Every 90 days or so, someone with MBC  faces a battery of scans to see what the cancer is doing. If the current drug is working, you stay on it. If it isn’t working, you try the next line of treatment. The average patient may receive eight or 10 different treatment regimens in sequence. Eventually all treatments stop working.

In December 2014, Laurie learned there was nothing left to do or try.

“I am dying, literally, at my home in Hollywood, of metastatic breast cancer,” Laurie wrote. “For six years I’ve known I was going to die. I just didn’t know when.”

Laurie made her family and friends promise not to describe her as having fought a courageous battle with breast cancer:  “This tired, trite line dishonors the dead and the dying by suggesting that we, the victims, are responsible for our deaths or that the fight we were in was ever fair.”

In her Op-Ed, Laurie recalled attending the Metastatic Breast Cancer Network’s  2010 conference in Indianapolis. “In one of the most powerful rituals I have ever seen, the group’s president asked all of us to stand, then sit back down when she reached the number of years since our diagnosis. At two years, most had to sit down.”

Laurie asked to be excluded from any photos or videos from that conference. As she explained in her editorial, in 2010 she didn’t want to call attention to herself or the disease. “Who would ever sign another book contract with a dying woman? Or remember Laurie Becklund, valedictorian, Fulbright scholar, former Times staff writer who exposed the Salvadoran death squads and helped The Times win a Pulitzer Prize for coverage of the 1992 L.A. riots? More important, and more honest, who would ever again look at me just as Laurie?”

It is probably fair to say meeting hundreds of other people living with metastatic breast cancer at that 2010 event gave Laurie a fresh perspective. In her LA Times essay, she describes meeting MBCN’s then president Ellen Moskowitz and former vice president Suzanne Hebert. (Ellen and Suzanne died within weeks of each other in 2012.)

By September 2014, Laurie had evolved from a reluctant conference participant to passionate metastatic breast cancer research advocate.  She was among the e-patients selected to address  Stanford’s Medicine X conference. Her presentation was called “Treat Me Like a Statistic and Save My Life.” 

In August 2014,  as she was working on her MedX speech, Laurie contacted MBCN for some supporting materials. “I am doing a presentation  in two weeks about metastatic breast cancer,” she told us. “It’s a pitch for big data projects. I’m also going to write an LA Times Op-Ed, primarily about the need to revise what breast cancer ‘awareness’ should mean today. I’d also LOVE to loop a copy of a video of the people in the audience being asked to stand, then sit down as the count of years alive goes up. do you have one? It really is one of the most compelling statements about MBC I’ve ever seen. Happy to credit MBCN.”

We responded that we didn’t have film of the audience, but sent her a link to the speaker’s portion.  (Ellen Moskowitz polls the crowd  at the 9 minute mark of this video.)

Laurie then offered some additional insights about her talk:

My main focus is that we need to restate ‘awareness.’ I mean, after 25 or 30 years? Would be nice. Under umbrella of what early stage (I was Stage1) cancer (all of us) needs to be aware of. Have you or anyone else posted anything that says here, these 3 or 4 points are most important? Have any of the organizations done that specifically? I’d love to be able to have a short, central message that includes questions that we all believe journalists should be asking for the NEW awareness. (Wish I had a better name.)

Another thing:

This is really about big data. I’m planning to stand up there and say (now that I’m at last out of the closet professionally) Use us. Use me or lose me. These big data people have so many conflicts, 30 different types of documents, inc in writing, competition among hospitals and companies for patents, etc, privacy issues, that I think it will be years before this really takes off.

It would be an organizing challenge, but i don’t think it would be hard to teach us and all those volunteer runners to do some data input on to a universal open source platform.

Things I’ve thought of:

— patients’ own record of side effects, including on specific drugs.

— putting in your own basic data as at doctors’ offices, including ER and PR but also FISH etc.genomic tests if done.

We sent Laurie the following:

13 Things Everyone Should Know About Metastatic Breast Cancer

Why Mets Matter PowerPoint (M Mayer, 2011)

What Have We Learned About Metastatic Breast Cancer (Patient’s Cheat Sheet to the Basics)

ASCO and Cancer and Big Data:

100 Stories About People Living With Metastatic Breast Cancer

Friends We Lost to MBC in 2013

Dumb Stuff People Say to People With Metastatic Breast Cancer

Two months after Laurie gave her talk, on October 13–National Metastatic Breast Cancer Awareness Day– the Metastatic Breast Cancer Alliance released the results of its Landscape Report, Changing the Landscape for People Living with Metastatic Breast Cancer. The Alliance, which represents 29 cancer organizations, conducted a comprehensive analysis of current MBC research and patient needs, as well as information and services. As we reviewed the executive summary, it seemed to us that Laurie Becklund could have written it:

Learn more: http://www.mbcalliance.org/

In her Op-Ed, Laurie wrote: “We now know that breast cancer is not one disease. What works for one person might not for another: There is no one “cure.” We are each, in effect, one-person clinical trials. Yet the knowledge generated from those trials will die with us because there is no comprehensive database of metastatic breast cancer patients, their characteristics and what treatments did and didn’t help them.”

Laurie Becklund was a gifted and widely admired journalist. We can think of no finer tribute than for her journalism colleagues to continue Laurie’s crusade.

As Laurie said: Use us.

For People Living With Metastatic Breast Cancer: Change is Coming

Marc Hurlbert, Alliance project leader; Karen Durham, patient advocate, DeAngelo Williams, Carolina Panthers; Shirley Mertz, MBCN

By Katherine O’Brien, MBCN Secretary

 

This past Monday, I joined MBCN board members Shirley Mertz and Ginny Knackmuhs in New York City for a press conference. On October 13–National Metastatic Breast Cancer Awareness Day– the MBC Alliance released the results of its Landscape Report, Changing the Landscape for People Living with Metastatic Breast Cancer.

Over the past the year, the Alliance, which represents 29 cancer organization, conducted a comprehensive analysis of current MBC research and patient needs, as well as information and services. As I listened to the presentations, I was reminded of something John F. Kennedy said about the early days of his presidency: “When we got into office, the thing that surprised me most was to find that things were just as bad as we’d been saying they are.”

Key findings of the Changing the Landscape report include:

• Research: More funds need to be directed to MBC-focused research. $1.0B invested since 2000 in research grants specifically focused on MBC was identified, or only 7%, of the $15-billion invested in breast cancer research grants included in our study. The majority focused on understanding the key processes of metastasis.
• Clinical trials: 169 clinical trials testing ‘targeted’ therapies for MBC were identified, addressing 7 common traits shared by all cancers. Opportunities exist to reduce barriers to patient participation in trials and to update the design of trials to address endpoints important for MBC.
• Quality of Life: More needs to be done to meet the needs of patients and families. Patients with metastatic breast cancer have unique emotional, physical and psychosocial needs, many of which are unmet by health care providers and support organizations. There is limited quality of life research conducted on the needs of minority or poor populations living with MBC.
• Patient education and support services: MBC Alliance members provide significant support and information to people living with MBC. However, opportunities exist to make information about MBC across agencies more consistent and easily understood, to develop metrics that measure the reach and impact of programs and services, and to reach into underserved communities regardless of socioeconomic status, race, gender, culture or geography.
• Epidemiology: Improving care requires documenting the number of MBC patients, how long they live, and how well they respond to treatments. Population-based data are needed on early breast cancer patients who experience a recurrence after early stage diagnosis.

In the course of my professional career as a journalist covering the printing industry, I must have attended hundreds of press conferences. It is my job–I routinely cover such events objectively and impersonally. Of course this press conference was very different. As I sat in the audience, I had to stop myself several time from yelling out such things as “Amen!” or “Tell it!” or “Thank you!” But I gave silent voice to all of those comments.

I experienced a wide range of emotions–I felt a surge of pride as Shirley Mertz stepped up to the microphone to chair the event. MBCN is a founding member of the MBC Alliance–and Shirley has worked so hard to make this happen, as has Ginny Knackmuhs, our fellow board member and Shirley’s fellow steering committee member.

I also had a feeling of disbelief–after years, was this finally happening? I am a relative newcomer to the cause–I have only been here five years. But when MBCN was founded 10 years ago, there was no support–let alone acknowledgement–of people living with MBC. On Monday, we all thought of MBCN’s late former president, Ellen Moskowitz. “What would Ellen have said?” we all wondered.

I felt validated–particularly as I heard  patient advocate Karen Durham tell her story. Karen, who lives near Dallas, was diagnosed with an aggressive stage II invasive breast cancer at the age of 38. Her cancer came back some two decades later.  Like me, she has been living with metastatic breast cancer since 2009. She said that many friends don’t really understand what she’s going through. “When you’re living with metastatic breast cancer, every month counts,” she said, as noted in this Forbes article. “Crummy is my new normal. And I’m glad to have that.”

Dr. Ruth Oratz and Dr. Robert Schneider,  both of the New York University School of Medicine, offered their views of the report. Dr  Oratz noted that the quality of life chart showed that needs for people with MBC have not changed since 2006. She praised the multidisciplinary effort, noting that it covered all modalities.

Dr. Schneider called the report “remarkable.”  “It’s an extraordinary report, one that quantifies what we’ve all suspected,” he said. “It gives us momentum for moving forward.”  He went on to say that although the Alliance research pegs the amount of MBC-focused research at 7%, he puts it closer to 3%. “There’s a lot of largely tissue culture work,” he said. “That does not advance [our knowledge]; almost none of that is translational research.” He called for a clearinghouse of mouse models to be created, for rare diseases such as inflammatory breast cancer to be studied and for academia and industry to step up to overcome NIH funding cuts as well as the agency’s reluctance to support research that does not fit within certain narrow confines.

Metastatic breast cancer has no celebrity spokesperson. At the Alliance press conference we met an excellent candidate for the job:  NFL player DeAngelo Williams. Williams, a running back with the Carolina Panthers lost his mom to MBC this past May. Although DeAngelo also has lost four aunts to breast cancer, it wasn’t until recently that he heard the term metastatic breast cancer. “We gravitate toward what effects us,” DeAngelo said, explaining why he contacted the Alliance.

Finally, I felt a sense of urgency.

As Shirley Mertz said, our lives depend on what the Alliance does. I am both sobered to think of the work to come and excited to help do it.

 

The full landscape report can be found at http://www.avonfoundation.org/assets/images/2014/mbca_full-report.pdf.