They Can’t Handle the Truth

So, you all know that I’m a co-founder of METUP, and I’m proud of the work they do. I’ve stepped away from active leadership in the group because of treatment, and the current leadership is a group that is incredibly capable and dedicated. But despite stepping away a bit, I remain deeply committed to METUP and its mission: changing the landscape of metastatic cancer through direct action.

What does that mean, direct action? Well, sometimes it’s having a die-in next to the Liberty Bell on Congress’s doorstep. Other times, it’s holding signs in front of a breast cancer symposium remind researchers that we’re not dead yet. And, it’s also going to social media to complain when someone who’s supposed to be helping cancer patients is doing the opposite, and demand that they start doing right by us.

That doesn’t always make us friends. When we point out that Komen spends a tiny portion of their budget on research and a huge portion of their budget on “public health education” that includes $40 million in marketing, does that make Komen happy? I doubt it. But it’s the truth, and it’s a reason why MBC continues to kill 40,000 Americans every year. When we point out that Novartis made $11 billion in profits last year and charges exorbitant prices for cancer drugs, does that make Novartis happy? My guess is no. But it’s the truth, and it’s a reason why people die of financial toxicity.

I don’t think any lives are saved when patient activists won’t talk about these issues. And literally the only goal of my advocacy is to save lives. And if it’s not another organization’s goal, well, then I think they’re part of the problem and not the solution. So METUP and I and other patients will continue to call out bullshit when we see it.

Which brings me to what’s been going on for the last year, and how it’s recently turned out. I want to take a moment to say that what I’m saying now, I’m not saying on behalf of METUP. I’m saying it in my own voice and I’m expressing my own opinion and it’ll come with a hell of a lot of swearing, because I’m mad as fuck. So, don’t read this blog post as commentary from METUP. It’s commentary from me.

Jennie Grimes and other METUP members and I decided it would be a good idea for METUP to apply for membership in the Metastatic Breast Cancer Alliance back in February 2015. We were encouraged to apply by the head of one of the member organizations, and we thought we could bring an important voice to the Alliance that we felt wasn’t strong enough: the voice of patients. There are very few patient members of the Alliance; Metastatic Breast Cancer Network is a member, and a few of the other members have metastatic patients as their representative to the Alliance. But at the Alliance meeting I attended in December 2015, the patient voice was noticeably absent from the room–especially patients whose health was unstable. In addition, we felt we could bring our strength in lobbying and policy work to the Alliance, which doesn’t have any member organizations with lobbying experience, beyond what Pharma does.

So, we filled out the application, and about a month later, Jennie and I had a conversation with two members of the executive board. They discussed our application and we discussed METUP’s mission and advocacy strategy, including our commitment to demanding change when we see a problem that’s harming people with cancer. We committed to never criticizing the work of the Alliance publicly, but we made it clear we would continue to criticize the actions of the member organizations when we felt we needed to do so. The two executive board members said they would discuss our application with the rest of the board, and let us know within a few weeks whether our application had been accepted.

The following month, April, was the Living Beyond Breast Cancer MBC patient conference (an event I always encourage patients to attend if they’re able!), and several of the Alliance’s member organizations were there. A representative of one of the organizations came up to me and begged me not to let METUP join the Alliance. Through tears, this person said “I’m afraid if you join, they’ll try to silence you, and we need your voice.” I said that if that happened, we’d just quit the Alliance, and the person said, “But that would destroy the Alliance’s image in the mets community. People look up to you and Jennie, you’re rock stars to the community, and if you leave, people will think the Alliance isn’t doing good work, and it is.” I told the person I’d think about it.

And I did, and I discussed it with the rest of the METUP leadership, and we decided not to withdraw our application. We still felt that the Alliance needed a stronger patient voice at its table, and we still wanted to see the Alliance begin to lobby and advocate for policy changes. So, we patiently waited for a response to our application. And we heard nothing.

June brought the ASCO Annual Meeting in Chicago, and with it the many patient advocates who attend. Jennie and I sat down with the person who initially encouraged us to join the Alliance to find out what the holdup was. This person said, “Oh, does METUP still want to join? We weren’t sure you did.” WHAT THE FUCK. Jennie assured the person that we did, and said “METUP has clearly done its due diligence. When are you going to give us an answer on our application?” The person assured us that we’d hear within a few weeks.

For the next several months, we repeatedly emailed this person asking when we could expect a response on our application, with no response. Finally I got fed up and contacted Marc Hurlburt, head of the Alliance, to find out when we would get a response on our application. He said he was on his way to to Europe for a major cancer conference, but would call me the following week after he’d had a chance to speak with some members of their executive board members and find out what was holding up our application. I thanked him. And never heard from him again.

Meanwhile, we watched quite a few other organizations gain membership in the Alliance. Tigerlily Foundation, Male Breast Cancer Coalition, The Cancer Couch Foundation…but nothing about METUP. 

Finally, our new president, April Knowles, took over the duty of trying to find out if we were ever going to receive a response to our application. She spoke with Alliance members at the San Antonio Breast Cancer Symposium, but still didn’t receive a final decision until this month: the answer was no. After dragging out a decision on our application for a year, after promising repeatedly to give us a response soon, after we met all the requirements of membership, they rejected the only metastatic patient advocacy group engaged in direct action. 

And, did they give us a letter explaining their decision? No. Did they apologize for the incredibly unprofessional way they’d treated us by failing to decide on our application for over a year? No. Did they promise to ensure patients in active treatment will be represented in the Alliance in other ways? No. Instead, they decided that saving their precious egos from criticism when they do shitty work is more important that actually listening to people with metastatic breast cancer. They decided that hoarding their own power is more important that collaborating with the people they claim they’re helping.

Why would they make this choice? Well, my belief is that it’s because their pharma overlords were uncomfortable listening to the truths about their industry. Since pharma pays for all the Alliance’s work, it’s unsurprising that the Alliance hasn’t done anything to increase research into metastasis, to reduce exorbitant drug prices, or to improve compassionate use access for the many patients who don’t qualify for clinical trials. 

Instead, since the landscape analysis that came out over 2 years ago, they’ve worked on a lame public awareness campaign–because awareness sure has done a lot to save breast cancer lives for the last 30 years–and a patient information brochure with information that was already available from dozens of breast cancer organizations, including several of the Alliance members. If we were in the room, there’s no way we would have said, “Sure, an awareness campaign is a great idea and I’m sure it’ll save a lot of lives. Also, redo all the work that already exists on patient information because that’s a great use of your time.”

When we applied, Jennie and I knew we had a LOT more to offer the Alliance than they had to offer us. We already work with and have good relationships with respected breast cancer organizations like Metavivor and The Cancer Couch Foundation and Living Beyond Breast Cancer and Tigerlily Foundation. We don’t need the Alliance for networking because we do that ourselves. We also don’t take pharma money, so we didn’t need a connection to them to ask for funding. No, what we had to offer was much more valuable than what we would have gotten from them. We would have brought them instant street cred with the metastatic community, been able to help them lobby government, and given them a solid understanding of the real needs of people with MBC.

The Alliance members rejected all that in exchange for making sure nobody hurts their feelings.

You know, the thing that pisses me off the most in the world of cancer is that too few people keep their eyes on the prize: saving lives. There is nothing more important than saving lives. No ego, no money, no fame, no power is more important than a single human life. And if you have money and power and you spend it making yourself look good instead of trying to save lives, you are immoral. Period. We don’t have time for infighting and keeping our mouths shut so no one’s feelings are hurt. PEOPLE ARE DYING. WE ARE DYING.

So, fuck you, Metastatic Breast Cancer Alliance. We see you for what you are now: an organization that refuses to listen to patients and only cares about its own self-aggrandizement. I sincerely hope your member organizations who AREN’T more concerned with their own power than they are about saving lives will speak out about the way the Alliance has treated METUP, and demand that the Alliance do better in the future. Because, METUP stands ready to work with any organization that genuinely wants to save lives. 

How many women are living with mets today?

Today, the metastatic breast cancer community is lighting up social media with the hashtags #MetsMonday #BCKills and #dontignorestageiv because we want more funding to go to research that will save our lives. I encourage all of you to help us out by tweeting, particularly at the Cancer charities who are still spending too much on awareness and not enough on research, and by signing Ann Silberman’s petition asking Komen, the biggest breast cancer charity, to spend at least half its money on research.

How bad is the research situation? It’s pretty bad. 

Recently a heartbreaking article by Laurie Becklund, written as she literally lay dying from metastatic breast cancer, made the rounds on the internet. I think it’s fair to say that all of us with mets said “amen sister” when we read her words. I can imagine exactly the pain her family is feeling right now, and I wish I could hug them.

In her piece, Laurie wrote about how we don’t know how many women in America are living with metastatic breast cancer today. A lot of my friends were shocked to hear that. 

Let me explain what’s going on: the database that tracks everyone in America who has cancer is called the SEER database. For breast cancer, it tracks your stage at diagnosis, and it tracks when you die, but it doesn’t track when you progress from early stage to metastatic disease.

Someone like me who was mets from diagnosis is listed as stage 4 in the database, but most women who have metastatic disease weren’t mets from diagnosis. 

So, say, for example, you’re a 45 year old woman and you’re diagnosed with stage 1 breast cancer. You get a lumpectomy, you have some chemo, you have some radiation, and if your cancer is ER positive, you start on hormone therapy, like the Hormonal Sunset I’m on. And then 3 years later, you have a terrible headache that turns out to be a metastatic breast cancer tumor in your brain. Now you’re stage 4. But in the database, you’d still be listed as stage 1.

What this means is this: we literally don’t know how many women are living with metastatic breast cancer right now. We have an estimate based on how many women are mets from diagnosis and how many women die of their disease–the current estimate is about 150,000. The Metastatic Breast Cancer Alliance wrote about the problem in their big report that came out last October. 

Right now, the nice folks at the American Society of Clinical Oncology, or ASCO for short, are trying to rectify the problem. They want to create a database for all kinds of cancer, including breast cancer, that would include treatment information, disease progression–way more data than we’re collecting now. But that kind of database takes time and money to set up, so it’s still a few years away from being a reality. 

I feel like this is the poster child for what a craptacular job we’re doing working towards a cure. We know so little about metastatic disease–the mechanics of how metastasis happens, what cancer types are most likely to metastasize. And we literally do not even know how many people have metastatic breast cancer, let alone what treatments they’re getting and how effective they’ve been.

When women with metastatic breast cancer talk about the lack of research funding going to metastatic disease, this is one of things we’re talking about. And why it’s so incredibly frustrating to watch good money being thrown after bad ineffective awareness campaigns that are doing nothing to save our lives. 

We feel like we don’t count because we are not even being counted.