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

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.

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3 Responses to For People Living With Metastatic Breast Cancer: Change is Coming

  1. The Accidental Amazon says:

    Katherine, excellent report. I think there’s been a huge and continuing sigh of relief since the landscape analysis came out this past Monday. And hope that it will provide a springboard for further action, and, ultimately, fewer deaths.

  2. […] The Metastatic Breast Cancer Alliance released the results of its Changing the Landscape for People Living with Metastatic Breast Cancer report and you can read more on this on the MBCN blog. […]

  3. Drucilla Clemons says:

    I to am living with MBC. I found out about your organization in a CURE magazine at my oncologist office. I had my first occurrence in 2011 along with my husband being diagnosed with brain cancer. Hindsight is 20/20. I now see the importance of education and research!! Had I known the things I know now. I would have went for more aggressive treatment at that time. I’ve since learned that we have to be our own advocates and be aggressive with our Oncologists and seek second opinions aggressively . I now try to inform anyone I’m in contact with of this. Thanks for sharing and allowing us access to your website. I find lots of valuable information to share as well!!

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