Peaceful Protest Protection Fund

FOR IMMEDIATE RELEASE:

METUP was born out of the intention to affect change for the men and women living with Metastatic Breast Cancer by any means necessary. We believe strongly in the power of direct action, peaceful protests, and demonstrations. 

Our co-founder, Beth Caldwell, was a civil rights attorney before her MBC diagnosis. She wrote about a conversation she had with her son regarding the Ferguson protests in 2014. Today, Beth would be standing side by side with the people in her home town of Seattle to protest the injustices still rampant.

It’s in that deep-rooted principle that METUP has established the Peaceful Protest Protection Fund. This fund is to aid and provide relief to metastatic breast cancer patients whose participation in social and peaceful protests on behalf of the metastatic breast cancer community or those living with metastatic breast cancer who protest to bridge disparity gaps that affect MBC results in their subsequent arrest, fines or other loss of income (including legal fees) resulting from protesting. Awards up to $500.

To see if you qualify and apply for the Peaceful Protest Protection Fund, complete this form.

So that we may continue to assist the MBC change-makers in their efforts to drive real and meaningful change in the areas of metastatic breast cancer and disparities affecting those living with the disease donations to the Peaceful Protest Protection Fund accepted here

METUP is proud to support those that are able to affect change in any way they can.

** This fund is to be used for peaceful protests and subsequent legal implications that arise from them. METUP does not encourage, promote, or condone the use of violence that causes danger to the life or health of patients or the community. 

Tribute To Larry Kramer

All of us at METUP were saddened to learn of the passing of one of the most progressive activists, the founder of ACTUP, Larry Kramer. With dramatic and disruptive events, under the direction of Larry, ACTUP was able to force the federal government to take notice of the alarming number of deaths because of HIV/AIDS. These actions led to an increased research budget, additional aggressive research, and, ultimately, a significant decrease in the number of deaths from AIDS.

ACTUP has become one of the largest international grassroots political organization as other like-minded LGBTQ activists have continued to join.

It is because of Larry and the success that ACTUP has had for their community that our founders, Beth Caldwell and Jennie Grimes, were inspired to create METUP for the metastatic community. That inspiration keeps us going. 

Our hearts go out to ACTUP NY, it’s members all over the globe, and Larry’s close friends and family. We know he is resting in power, and his legacy will continue.

Susan Rahn, President

In the last 40 years, the Metastatic Breast Cancer death toll has not changed significantly. Nor has the mean survival rate of 3 years. We have spent almost half a century trying to fund research for a cure, and what we got instead was pink ribbon campaigns. Our pink ribbon has been singed gray by the memory of those we have lost. It is our turn now. I’m not asking us to all lay down in protest. I am simply asking that we no longer just lay down in defeat. I ask that we no longer lose 108 Americans every day. I AM asking us to “METUP. “ Jennie Grimes, Co-Founder, Metup.org, 2015

“How can you know us if you don’t count us.” Metastatic Patient Wants Changes to SEER

Martha Carlson, in this piece in CURE, outlines problems with the SEER database, especially for Metastatic patients.

The current data say that 89.9% of people diagnosed with breast cancer are alive at five years, but because recurrence data are not collected we don’t know how many of that 89.9% are living with stage 4 breast cancer. Though factually correct, the data misleads us. Since SEER doesn’t track cancer recurrences, including metastatic spread, a person who was stage 2 is always stage 2, even if she is alive at five years with metastatic progression that will eventually cause death.

We at METUP echo Martha’s frustration. The National Cancer Institute must find the resources to fix these glaring omissions in the SEER database. Only with accurate data can we start to find a cure.

Read the entire article here.

October 11 Die-in on the Capitol Lawn was the Largest One Yet

On October 11, 2019, METUP held its fifth annual Die-in on the Capitol Lawn. Over 200 men and women gathered to mourn for the 116 who die every day from Metastatic Breast Cancer, and to fight for those still living with the disease. 

The Capitol Lawn Die-in began in October of 2015, after the success of an impromptu Die-In at the LBBC conference in Philadelphia

Shannon Curtis appeared in person to sing The Day That They Hear Us. Shannon wrote the song in 2015 to honor the Metastatic community.


The Phyllis Groskin SABCS19 Activist Grant

Phyllis Groskin
The Phyllis Groskin SABCS19 Activist Grant

Phyllis Groskin, an early leader within METUP, recognized that the breast cancer advocacy world needed drastic changes. She was one of the brave people who stood alongside other men & women in silent protest at the worlds largest breast cancer conference in San Antonio. These yearly protests brought, and continue to bring both national and international attention to the lack of research being done expressly for those dying of breast cancer.

Phyllis was the author of a well-received paper which also gained national attention called Metastatic Patients and Clinical Trials. Her passion was to make sure future generations of men and women would have a better outcome after being diagnosed with metastatic breast cancer.

Phyllis’ death, in 2018, has been a significant loss to the MBC community. Although she is gone, Phyllis wanted her work to continue and her torch carried by the next generation of activists.

The Phyllis Groskin Activist Grants will go to like-minded activists committed to changing the landscape of breast cancer to attend the San Antonio Breast Cancer Symposium this December 10th – 14th.

Eligibility requirements and application are HERE.

Applications are open until August 31, 2019.

METUP Statement RE: Komen Florida

On Saturday, December 22nd, Susan G Komen of Florida released a video featuring Susan Brown, Senior Director of Education & Patient Support. The 2:11 min. video entitled “Say This, Not That” leveraged Susan G Komen National’s partnership with the Metastatic Breast Cancer Alliance to take subtly aim at the widely accepted statistics regarding Metastatic Breast Cancer patients.

Ms. Brown begins by referencing a study authored by MBC Alliance and the National Research Center that used a model to determine the number of women living with MBC which is 154,000 and growing. She goes on to say the study concluded the increasing number of women living with Metastatic Breast Cancer is due to an aging population and better treatments.

Ms. Brown fails to include the Population Impact of the study, which is biggest takeaway from the study. The study concluded that The increasing burden of MBC highlights the importance of documenting recurrence to foster more research into the specific needs of this understudied population. Additionally, the death rate from Metastatic Breast Cancer has not significantly changed in over 30 yrs. It has actually increased 10% for both women and men since 2015. (ACS).

Ms. Brown then focuses directly on the widely accepted statistic that 20-30% of those diagnosed with early stage breast cancer can and do go on to develop Metastatic Disease. Ms. Brown proudly proclaims that Komen Florida doesn’t say that because there is no reliable source for that data. Additionally, she claims that many of those previously treated for early stage breast cancer won’t develop Metastatic Disease.

That is a very concerning and frankly highly irresponsible to be reporting information that contradicts many studies and even peer reviewed data presented by respected Researchers at the 2018 San Antonio Breast Cancer Symposium held earlier this month. A study entitled “Dynamics of breast cancer relapse reveal molecularly defined late recurring ER-positive subgroups: Results from the METABRIC Study,” was presented by Christina Curtis from Stanford University.

One of the most important slides from that presentation can be found here:

Presented by Christina Curtis from Stanford University.

The very first point clearly called out that “While prognosis from early stage Breast Cancer has improved dramatically, 20-30% of patients will recur with incurable disease.” While it’s common knowledge that SEER does not count Metastatic Breast Cancer Patients correctly, this statistic isn’t one that was pulled out of the air on a whim. There is no benefit in disputing this information, in fact to do so is counteractive to Komens “Bold Goal,” Metastatic marketing plan and new partnerships they have been trying to forge within the community to prove their sincerity.

If Susan G Komen wants the Metastatic Community at large to take them seriously, that they are really trying to change, they’ll correct this with their Florida affiliate. Responsible & respected non-profits don’t talk out of both sides of their mouth. They can’t have a “Bold Goal” campaign when the issue is turned into a half-hearted objective by local executives. Responsible & respected non-profits have the same cohesive message across the board.

It is the position of METUP that Komen Florida do the following:

1. Pull the “Say This Not That” video from all social networks and public viewing.

2. Ms. Susan Brown issue a public apology for using the Metastatic Breast Cancer Alliance as a platform for her agenda in which she tries to discredit the seriousness of a disease that kills 114 lives every day. As a Senior Director of Education & Patient Support, she is neither educating nor supporting patients in saying many early stage patients won’t ever recur.

Susan R – President &
METUP Executive Board Members

Accommodations the week of October 8

Looking for a place to stay for the week of October 8?

If you cannot find an affordable place to stay during the week of the Stampede, Die-in, and Beth’s East Coast celebration of ife, please contact Marissa Goldsmith. She will try to make accomodations in her home. Note, that may mean an air mattress on the living room floor.

Note: Marissa’s house is not exactly conveniently located near the events (with the exception of the celebration). And the Washington Metro system can be iffy at off-peak times, especially on the blue line. But there are several options:

  • If you’re willing to leave at 7:00am and come home around 4:00pm, Marissa’s husband can take you in on his way to work. He works around Capitol Hill.
  • There is a rush hour bus 3 blocks from the house that will take you to the Pentagon. From the Pentagon, it’s a pretty easy Metro ride into town.
  • The house is about two miles from the Sprinfield Metro. If Marissa is around, she can give lifts to and from
  • Uber’s abound in this area. An Uber ride to downtown can run $35-$55, depending on time of day. But you can do things like take an Uber to the Springfield metro
  • .

  • If you have your car, you can always drive into DC. You should expect to pay $20-$30 for parking. You might get lucky and find street parking, but it’s only good for 2 hours.