Just Keep Evolving: My Patient Advocate Story

How did I get started as an advocate for people living with metastatic breast cancer? It’s a long story–I have to start from the start.

When I was diagnosed with MBC in 2009 at age 43, after the shock and disbelief wore off, I felt a deep-seated anger. I think fear fueled some of this rage—I had seen my mom die from inflammatory metastatic breast cancer weeks after my high school graduation.  I was afraid of dying. (And I still am.)

I was working full-time. Colleagues treated me strangely as news of my diagnosis got around. It was awkward and I had no outlet to vent my pent-up emotions. Not only could I not walk through the office yelling “I AM AFRAID OF DYING AND YOU PEOPLE ARE TREATING ME LIKE THAT’S ALREADY HAPPENING,” at that time I didn’t know any other Stage IV people.

I had not yet found MBCN or any of the online support groups. I could not take to Facebook because neither it nor Twitter were widely used.

It was 2009 and the Affordable Health Care Act hadn’t been enacted. It was clear a layoff loomed in my future–my entire division would eventually be let go–it was only a question of when.

My insurance situation kept me up at night. Had I been let go in 2009, my pre-existing condition meant I would have to go into a high risk pool–provided I could get into one. I went to a presentation at Gilda’s Club on Cancer & Insurance. It sounded pretty bad.

I worried about supporting myself. I worked in a small industry—who was going to hire a woman with Stage IV cancer?  If I couldn’t continue to work, how would I get by? My insomnia worsened.

In this vacuum, my fear and anger festered. I am embarrassed in hindsight, to admit  to some things that seemed like a good idea late at night, when I couldn’t sleep, and felt compelled to rail against what I perceived as stupid and useless fluffy breast cancer initiatives. Mercifully, most of these postings have vanished into the ether.

I blush to recall one such post-midnight sortie when I found Eric Brinker’s email address. (Eric’s mom is Nancy Brinker.) I think it was on a press release for wherever he was working at the time. Anyhow, I sent Eric a note. I can’t remember exactly what I said, but I am sure I didn’t invite him to join my book club. I probably just said I felt more could be done to address the needs of people living with metastatic breast cancer. I believe his response was “How did you get this email?”

While it provided a small measure of satisfaction, part of me knew I wasn’t accomplishing much. It did ultimately lead me to getting involved with the Metastatic Breast Cancer Network. The president in 2009, who has since died, must have had the world’s best-filtered Google Alerts. I had just posted an outraged response to yet another dumb online breast cancer article. It was in some obscure newspaper—I remember hitting “post” and thinking “Well, no one will ever see that.” But thanks to her Google Alert, the MBCN president did—and she asked me to address some similar articles on her behalf.

I did and that ultimately led to me getting more involved with MBCN. Finding MBCN was such a blessing. Initially, I was skeptical—I was 43 years old—and most of the MBCN leadership seemed pretty old to a youngster such as myself. I debated attending its national conference—I was still working and why would I want to spend my precious weekend hanging out with senior citizens talking about cancer?

How very wrong I was. That MBCN  conference was a lifesaver—I could SEE I wasn’t alone. There were a wide range of attendees and I was far from the youngest. I learned so much from the speakers (led by Dr. George Sledge and Dr. Kathy Miller) and the patient stories inspired me.

That’s how I got started as a patient advocate.

I have participated in a wide range of advocacy activities. I’ve been part of NBCC’s Lobby Day, participated in LBBC’s and YSC’s conferences, written dozens of articles about issues facing people living with MBC, attended FDA hearings and been a part of many focus groups.

While MBCN is my advocacy “home,” I try to help where I can. I made a video for the MBC Project.  I partcipated in Beth Fairchild’s Project Hashtag on Mets Monday in 2015.I couldn’t go to Washington DC, but with the help of a friend, I made three videos promoting METUP’s die in.

This one was on behalf of the people who wanted to be there but couldn’t go.

 

More people who couldn’t attend:

 

And some of the far too many who have died–their friends sent in their pictures, which were also displayed on posters.

 

Two of my fellow MBCN board members, Shirley Mertz and Ginny Knackmuhs, joined me at the inaugural die in Philadelphia. Ginny came of age in the 1960s—she was thrilled to participate—she had left the LBBC conference site but she quickly turned her car around and came back after Shirley called her.

Just prior to the event, a woman representing a pharmaceutical company came up to where I was standing with Ginny and Shirley.  “This is morbid!” she said. She appealed to Shirley, as the leader of our group. “Don’t you agree? ” she asked. “We should stop this!”

Shirley looked at her and calmly replied: “I think this is necessary and it should happen.”

And it did.

Shirley has never been known to keep silent for political expediency. One year at ASCO, I was in a packed hotel ballroom and I heard her call out a pharmaceutical executive for his inaccurate (and frankly insulting) characterization of the Affordable Care Act. Shirley Mertz has never faltered  in the courage of her convictions. (She recently appealed to her fellow MBC patients to contact their elected officials to explain accessible care isn’t affordable care--and why that is so important to people with Stage IV breast cancer.)

In 2013, I took on new advocacy challenges when MBCN joined with 16 nonprofits and five pharmaceutical companies to co-found the Metastatic Breast Cancer Alliance. Shirley, an MBC patient, chaired the press conference announcing the event. Two MBC patients shared their stories—we also heard from some researchers about the challenges of MBC.  Today there are 48 members—as well as individual members such as Eliza Adams, Teri Pollastro, Kelly Shanahan and Anne Loeser.

Shirley is the co-chair of the Alliance Resarch Task Force. With LBBC’s Catherine  Ormerod, I co-chair the Awareness Committee (each committee has at least one patient representative).

For the past two years, the Alliance was fortunate to have the pro bono services of an NYC creative agency which helped develop other components of its awareness campaign. If you attended the LBBC mets conference in 2015—you probably met some of the agency staffers—they interviewed hundreds of patients on site and via online surveys.

I am gratified to be a part of the Alliance team that created this Change.org petition calling for our cancer databases to start counting all people with metastatic breast cancer.  It was truly a group effort. Please sign it and share it!

I am proud of the work the Alliance is doing and happy to play a role in it. I admit sometimes I am overwhelmed and even frustrated—there is so much to do and I want things to move faster. But I can see things changing. I am not alone in that sentiment.

Dr. Danny R. Welch, Professor and Chair of Cancer Biology at the University of Kansas Cancer Center attended the February 2016 Task Force meeting–he was among the representatives from 15 academic institutions.

“My career has been focused on research on metastasis and putting an end to breast cancer,” said Dr. Welch. “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.”

I am in active treatment—as I believe all patients who participate in the MBC Alliance are. I would hope that no one would evaluate my or any other patient’s effectiveness as advocates based on our physical appearance and perceived treatment history.

As a patient advocate, I can never forget I am a patient for life. Sometimes my disease is quiet–but like most MBC patients I am  familiar with the crisis of progression.I have been blessed with more good days than bad. Not everyone is so fortunate. I am determined to make good use of my time–for myself and for others.

I have attended SABCS every December for the past several years. December 2015 is etched in my mind because I was in a world of hurt—my cancer had spread to my liver and three successive treatments had failed.

I contemplated a clinical trial, but was ineligible due to the prior drugs I had received. Eventually the trial would be expanding its criteria—but I could not wait months for that to happen. I sought two second opinions, made my choice and had just started my new treatment.

The MBC Alliance met in San Antonio—and of course I participated in that meeting. Aside from my own health issues, attending SABCS was particularly difficult in 2015, because my usual conference roommate, Ginny, wasn’t there. Ginny had lobular triple negative disease and was experiencing many setbacks—including brain mets. She died in 2016.

Ginny served on the Alliance’s Information Task Force Committee. She was involved in developing the Alliance’s clinical trials search tool, Metastatic Trial Search, serving as the MBCN liaison to the Metastatic Trial Search project. She participated actively in the group discussions that led to the design of MTS and its subsequent inclusion on the MBCN site.

“Ginny was incisive, asking difficult questions to ensure that the Alliance was founded and moved forward with a clear focus on people living with MBC,” said Marc Hurlbert. “In December 2013 and March 2014, she helped shape our comprehensive Landscape Analysis report that has informed all of the projects of the Alliance.”

Ginny was an active person—before her health deteriorated, she loved to travel and play golf. She was a doting grandmother. Knowing her time was limited, why did she spend a great deal of it in Alliance committee meetings and serving on MBCN’s board?

Because she cared and she wanted to make a difference.

The same can be said of Amy Bonoff, Marcia Taylor and Rochelle Shoretz—all patients who served on Alliance committees and all of whom died in 2015.

Many people have influenced my advocacy. I try to learn from everyone and keep an open mind.  I never want to be static–in my beliefs or in my actions. I am determined to keep learning, to keep evolving.

Some observers may believe there is only room for one kind of advocacy—that one is forced to choose between being what AIDS chronicler John-Manuel Andriote terms “coat-and-tie” advocates and “street activists.”

But as my experience and Adriote’s article make clear, that isn’t the case. Both are invaluable to each other.

“The two ‘sides’ were clearly essential,” says Andriote. “The street activists forced the media to focus on AIDS, using colorful and made-for-TV demonstrations, while the lobbyists helped write the laws delivering a lot of what the protesters were calling for. They all played vital roles.”

It’s also instructive to note that most advocacy groups evolve over time. On Sept. 13, 1990 ACT UP/San Francisco split into two chapters: ACT UP/Golden Gate, devoted to treatment, and ACT UP/San Francisco, which remained committed to broader social change beyond merely pushing medical science to find a cure for AIDS. In 1992 key members of ACT UP’s NYC Treatment and Data committee left to form the Treatment Action Group (TAG).

I think I have evolved, too. No more midnight poison pen letters!

Neither a single group nor any conglomeration can possibly address all facets of metastatic breast cancer. We need all the help we can get. We may not always agree. But we need look no further than the AIDS movement to see that keys groups often didn’t always share the same views or tactics in accomplishing their goals—but each had a vital role to play and none would achieved all that they did without the existence of the others.
We need each other. Let’s make it work.

Scenes from our 2012 Conference