A Cancer Non-Profit Bashing Another? Why?

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Dear MetUp,

I lost my twin sister, Tracy Frank, to breast cancer in 2014. After two prior battles with breast cancer, I was diagnosed with Stage IV metastatic breast cancer six months after laying her to rest. Needless to say, “I get it.”

My favorite word in life right now is “choices.” I believe we all have choices regarding where we spend our time and money, how we fight for a cause, who we surrounded ourselves with, and what attitude we bring to each day. These are things in our control.

I am deeply disappointed about the choices the METUP leadership has and continues to take. What happened to your original vision?

 “METUP was born out of an idea for creating action. We began with strong leadership and have led with it ever since. It’s our goal to continue to inspire others to learn more and do as much as they can; whatever that looks like to them.”

I ceased my participation with MetUp years ago when MetUp stopped inspiring and started criticizing and being divisive. With the “anti-pink” strategy, the MetUp position was that too many funds are going to the early stages and not enough to “us” – those with Stage IV metastatic breast cancer. The logo of MetUp remains “Pink is not a cure.” Since pink triggers donations to breast cancer overall, why criticize it? Childhood cancer’s color is gold, Pancreatic cancer is purple, etc. I don’t see other organizations bashing the color of a wrist band or a tutu.

Fast forward to September 2019 and the launch of #CureKomen. I’m disturbed and concerned about your new campaign. I believe it hurts all of us Stage IV ‘metavivors’, all cancer patients, survivors, caregivers and families impacted by cancer. Your spin on the numbers and negativity hurts all cancers, too, not just breast cancer.

  • Every major breast cancer breakthrough in the past 50 years can be traced back to federally funded research. The largest funder of cancer research is the federal government. Despite strong public support for cancer research, funding for the National Cancer Institute (NCI) remains lower than it was before the 2008 recession when adjusted for inflation. Why can’t MetUp use its platform and voice to encourage Congress to increase funding to both the NCI and the National Institutes of Health (NIH)? This is an example of a positive impact; an example of advocacy, not protesting.
  • The American Cancer Society is the second-largest source of cancer research. It hosts consumer-facing awareness events (such as pink walks) as well as complex back-end research funding and initiatives. MetUp’s voice-through-advocacy with The American Cancer Society Cancer Action Network (ACSCAN) can make a positive impact as well. Here in the state of Washington, I lobbied with ACSCan on Capitol Hill and we passed a bill in state legislature raising the legal smoking age from 18 to 21. We are saving lives.
  • Why not an “and” vs. “or”? Why not an “us” vs. “we/they”? Our cancer world needs day-to-day programs for patients and their families AND research to kick cancer’s butt. Are MetUp members using the great programs offered by multiple non-profit organizations including Susan G. Komen, the American Cancer Society and more? Does MetUp see the value of the patient programs for underserved communities and everyone impacted by cancer?
  • Why attack Susan G. Komen? Why have an attack strategy at all? Why pick on one of many organizations trying to move the huge cancer needle in very different ways? Susan G. Komen, like so many other non-profits, works hard to improve their impact. They know the pressure they are under and how they are measured. I trust the leadership is taking them in the right direction. Have you studied their new and significant focus on metastatic and the 4 pillars of research, care, community, and action?

I find MetUp’s recent #CureKomen and subsequent protests distasteful and negative. This bullying is the very last thing we need as a cancer community. MetUp is hurting our combined efforts to crush cancer and help cancer patients today and tomorrow.

Yes, Stage IV metastatic breast cancer sucks. I don’t focus on dying; what matters is what we do while we are living. I choose positivity, hope, inspiration, advocacy, fundraising, and volunteerism. What is MetUp going to choose going forward?

Dana Manciagli

3-time Cancer Survivor, Metavivor, currently living with Stage IV metastatic

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9 thoughts on “A Cancer Non-Profit Bashing Another? Why?”

  4. You bring out so many good points. MetUp and the metastatic breast cancer community as a whole has one major goal – stop the dying from breast cancer. Organizations like Komen serve many needs of the entire breast cancer spectrum. At the local level, making sure underserved patients get the right care is as critical to their quantity and quality of life as is the next research breakthrough. We need both – boots on the ground leadership and research leadership. Yes, we need more money directed toward stopping the 40,000 deaths a year. But we won’t do it by splintering our efforts.

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  6. METUP is trying to continue Beth Caldwells original mission. We are just asking for more of their funds to be spent towards all research for all stages of cancer. I just wish they would flip the numbers around and spend 70% on research and 19% on awareness which they have accomplished in a huge way already. This truly is one cancer, and we all need to work together and acknowledge each other struggles. Time is running out for so many of my friends, and I’ve watched so many people die in the last two years, we are just trying to change things for all breast cancer patients. It honestly is too little too late for most of us metastatic breast cancer patients. Any accomplishments that we make will be for the people who are not yet metastatic and are early stages now. I personally think that direct action is called for sometimes just to shake up the status quo and gets everybody’s attention. Just my opinion .

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    • Misty, thank you. I was a MetUp member and knew the co-founders and their vision. I don’t agree with the “how” and I don’t believe a “wish to flip the numbers” is realistic; it implies that dollars should be reduced in other critical areas of what all of these organizations are doing. Programs need to continue to support ALL cancer patients and awareness still has a long way to go, especially for our disadvantaged populations.

      I’m also disappointed with the primary messages emphasizing counting deaths, “time is running out” and “it’s too late…”. The status quo (your words) does not need “shaking up” this way…it needs advocacy, voices, support, donations and people like you and me to make a difference in a positive way. These organizations need us.

      This article JUST came out in TIME: https://time.com/5689570/metastatic-breast-cancer-research-treatment/

      Some highlights from experts:

      1. True, “Despite the billions of dollars collected and spent on breast-cancer research over the past half-century, relatively little has been devoted to studying metastatic-breast-cancer patients or their particular forms of the disease.”Doctors do not know why some breast cancers eventually form deadly metastases or how to quash the disease once it has spread.”

      2. “Doctors do not know why some breast cancers eventually form deadly metastases or how to quash the disease once it has spread.”

      3. “Three-quarters of women with metastatic breast cancer were originally diagnosed with early-stage disease. The idea that breast cancer “came back” after initial treatment is a bit misleading.”

      There is so much more from expert cancer researchers at Stanford, the National Cancer Institute (NCI), Fred Hutch, Benaroya Research and elsewhere.

      Misty, please know that we are all in violent agreement that more needs to be done for our stage IV disease. But spending all that negative energy on bullying Komen is fracturing and has the opposite effect desired. My wish is that NO cancer non-profit, Susan G. Komen, American Cancer Society and any should be targetted by a smear campaign and protests.

      I do value your opinion, Misty, and wish you health, wellness, and happiness. Happy to talk live, too! Maybe we can innovate to find a unique way to make an impact together! Regards, Dana

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  7. While it true that each individual organization has their goals, it is also true that each organization has its own blindspots. Reasonable minds can differ. Talking about issues and disparities and then taking direct action is one approach. Joining an organization whose goals are divergent from yours to change it from within in another approach. Both have merit. Keep speaking up about issues you note and advocate for doing things differently. All voices are important and your viewpoint is valid. Just because we might disagree on something doesn’t make either of us wrong. Love and light to you.

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  8. I thought this has been posted as a reply but it looks like it disappeared?

    Dear Ms. Manciagli,

    Let me introduce myself. I am J Caldwell, Beth Caldwell’s widower. She is one of the co-founders of MetUp. You begin a discussion about choices, I want to circle back on that, but first I want to address the quote you dropped in about wishing Metup stayed true to its original vision.

    “METUP was born out of an idea for creating action. We began with strong leadership and have led with it ever since. It’s our goal to continue to inspire others to learn more and do as much as they can; whatever that looks like to them.”

    MetUp is styled on ActUp. One cannot claim to have been in MetUp; know the co-founders; know their vision and not know this. One of the first acts of in what was seeds that grew into MetUp was an act of protest. Not something dressed in pink, but a die-in where 108 people laid down during a conference to show what 108 people dying a day looks like. If you notice, that 108 number was also referenced in the post you reference from Susanne also uses that number. That is the old number of deaths per day from metastatic breast cancer. Women and men. The new number is 116 people a day. The number has gone up every year that I have been aware of it. It is going to go up next year too as the tracking mechanisms get better, so we are actually accurately capturing complete data, or we discover that the number of people is actually climbing and it’s not the gaps in data that are a problem. Oh…because you didn’t know, Susanne died a year ago, to the day of my initial draft of a response which is October 1st 2019, from metastatic breast cancer. So that is how current your information you are choosing to base your disagreement on is.
    You ask “Why can’t MetUp use its platform and voice to encourage Congress to increase funding to both the NCI and the National Institutes of Health (NIH)?” They do. Every year that I can remember, they go an participate in lobbying at both state and federal levels. They did this when Beth was alive, and they do it still. They will continue to do so because, as you rightly point out, what MetUp is raising the issue of with the #CureKomen campaign, is that it is research that provides treatments; lowers toxicity; extends lives and that Komen is not living up to what they claim to be for, which is “The Cure” based of their funding priorities. I can say they will continue to do so as I will push them to do so as that is part of their mission. Susan G Komen died almost 40 years ago. The number of people dying from metastatic breast cancer is going up. Where is the cure? Where has all that money gone?
    What is MetUp’s mission you may ask? Well, from the MetUp About Page:

    “METUP is committed to changing the landscape of metastatic cancer through direct action. We protest and demonstrate; we meet with government and health officials and researchers; we support research into metastatic disease; and we speak out against the sexualizing of breast cancer. We are convinced that the deaths of women and men from metastatic breast cancer are a paramount issue, and we pledge ourselves to oppose all who deny the reality of the 522,000 people who will die from metastatic breast cancer globally every year while waiting for a cure to be found.”

    According to your own complaints, it looks like they are acting in accordance with their mission, and your overall response ignores that these are the specific goals of MetUp, again from their “about” page:

    “Legislative Goals
    1. We want the SEER database modified to begin tracking when someone with early stage disease metastasizes, so that every woman and man with metastatic disease is counted.
    2. We want additional research funding for all cancer types. The National Institute of Health (NIH) now only funds about 8% of the grant applications it receives. We want that number increased to at least 25%.
    3. We want at least 30% of federal breast cancer research dollars to be spent on metastatic disease, with a focus on translational research.
    Cultural Goals
    1. We want corporations that use our disease for profit to immediately cease doing so. Our deaths are not for sale.
    2. We want organizations that sexualize our disease, including breast cancer charities, to stop focusing on our breasts and start focusing on our lives. We oppose any breast cancer charity that partners with corporations or other organizations that sexualize our cancer.
    3. We want anyone associated with breast cancer, including breast cancer charities and any corporations that put pink ribbons on their merchandise, to provide accurate information about breast cancer’s death toll and to focus their efforts on reducing that toll through research, rather than continuing their now-pointless awareness campaigns that do nothing to save our lives.”

    In short, MetUp, beginning with their founders, has taken direct action to try to save lives and opposes people profiting from breast cancer by slapping pink on something and making a profit. They oppose continuing the status quo as the goal of organizations who raise massive amounts of money and spend much of that on endless campaigns on “awareness.” Honestly, unless the campaigns are targeting people of color to address the large disparities in treatments and access to care, all it is doing is adding to market saturation.
    You also mention in a response that flipping the numbers is not realistic in a response to Misty; and seem to be arguing that MetUp is trying to take things away in terms of either support and painting things as an either-or; or even that they want to take money away from support programs. All of those would be misrepresentations of what the #CureKomen campaign is, and what MetUp is trying to do. If the numbers do not flip, Komen should stop including any mention of “cure” in their branding and advertising and fundraising as it is a misrepresentation where money is actually being spent. They should use “for awareness” or for “education” based off how they spend the money they fundraise. People do not die of lower stage breast cancer. Lower stages, as you are well aware, can all progress to metastatic. Metastatic breast cancer is a statistical death sentence within the first 5 years of diagnosis. That is not a choice. That is the reality backed up by the numbers that we have. There are additional points I want to respond to but I’m choosing not to as I am tired and I am going to sleep because, like you, I am dealing with my own realities of having metastatic cancer involved in your life.
    I want to close with a response to choice. They are making choices. They are choosing action. They are choosing to try to save lives, and that includes challenging the status quo of Komen and where it spends its money. They are choosing strong leadership and being true to their mission, because research will save lives and choosing to decrease funding for research, which Komen has have been doing, and more specifically choosing to not fund research into the things that are actually killing people makes me, just as it made Beth, question if that organization’s priorities are correct.
    It is not bullying to raise awareness of how Komen is actually choosing to spend their funds and to challenge them on that. It is not bullying to protest at an event where they are raising money where the bulk of it will not go to research. It is advocacy. Plain and simple. Advocacy for the dead. Advocacy for the living. Advocacy for themselves to try to save their lives, their friends lives and yours as well. Advocacy for the 116 that are killed every day from metastatic breast cancer. Komen has had decades, and while “awareness” was important at the beginning, it is saving people’s lives that is the goal.
    I can say with certainty that my wife would approve of what they are doing and the actions that were being taken. I can say the same for Susanne, and if Jennie Grimes had and issue with it, I’m 100% sure I’d hear about it. I do not speak for MetUp. I am speaking for myself on this and challenging your misrepresentation of MetUp’s actions. I have heard this critique a lot lately, and I know my wife’s mind on this. Your post and the attention that the #CureKomen campaign has raised, which if you want to understand more please see http://curekomen.org/, tells me that MetUp is doing exactly what they are supposed to be doing.

    Sincerely,

    James H Caldwell III

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