TAKING IT TO THE HILL: HOW THREE WOMEN ARE HONORING THEIR FRIEND THROUGH LEGISLATION CHANGE
METAvivor’s Capitol Hill Day comes just a week after its President lost a dear friend and fellow advocate to the disease
WASHINGTON - Several dozen volunteers, metastatic breast cancer patients and researchers will be participating in METAvivor’s Capitol Hill Day Tuesday and Wednesday, April 4 and 5. The event provides an opportunity for individuals to meet with their Senators and Representatives in a grassroots effort to further advocate for advancing medical research and continuing access to healthcare for those affected by metastatic breast cancer.
Among those will be METAvivor President Beth Fairchild. Ms. Fairchild, along with Academy-Award winner Mira Sorvino and #Cancerland founder Champagne Joy, led the Stage IV Stampede this past October which involved a march through Washington D.C., followed by a Die-In on the Capitol lawn and an afternoon of meetings with members of the House and Senate.
Together, they were hoping this week to continue to educate the Hill about the terminal disease and the critical need for continued research and accessible healthcare; healthcare that would be challenged if the ACA were repealed or if the NIH were defunded. But the trio’s reunion was halted a week ago when Ms. Joy died suddenly from complications of metastatic breast cancer.
“Following the sudden death of my lifelong friend and stellar metastatic breast cancer activist Champagne Joy, the need to find a cure for this life-robbing scourge that takes 113 women and men every day couldn’t be more urgent,” Ms. Sorvino says. “Almost everyone has lost someone dear, someone essential to them to stage IV breast cancer. Enough is enough! It is time to end this sickening disregard for our citizens.”
Sadly, in the six months since they marched on the Hill together, little to nothing has changed with regard to research or legislative measures. For Ms. Sorvino and Ms. Fairchild, saying goodbye to their friend, a tireless advocate for METAvivor and metastatic breast cancer, underscored the need to appeal to our nation’s lawmakers.
“Our government needs to take immediate action and put MORE money into funding stage IV research. And, it certainly should not defund the NIH,” Ms. Sorvino continues. “Right To Try laws must be passed to allow patients with a terminal diagnosis to participate in clinical drug trials; these could be life-saving answers to their conditions and their participation should not affect the outcome of the trials. Human lives are more important than the drug industry’s gain. It is time to become a country of compassion and action for others again.”
Another long-time advocate, Ms. Fairchild also knows first-hand the challenges and fears facing those with a stage IV breast cancer diagnosis. She is among the thousands of individuals each year who receive a de novo stage IV diagnosis; an initial breast cancer diagnosis already at the advanced terminal stage, despite age, genetics, breast cancer awareness, early intervention or mammograms. Currently in treatment for metastatic breast cancer, she understands how difficult it can be to get insurance or what it is like to fight for drug coverage that can save your life. She strongly feels with the political climate the way it is, there is an even greater sense of urgency to invoke reform and change how the disease is funded and treated.
“Healthcare issues are currently front of mind in the public’s attention, so now is a good time for us to continue our efforts to educate Congressional leaders about the specific needs of people with stage IV metastatic cancer, and impress upon them the importance of change,” says Ms. Fairchild. “We will be continuing to ask Congress to increase funding for metastatic cancer research, to improve access to innovative, potentially life-saving therapies and to continue access to healthcare insurance and benefits, Medicaid and Medicare and prescription or clinical trial drug coverage to help those with chronic and terminal illness.”
Ms. Sorvino, Ms. Fairchild and Ms. Joy were alongside lingerie designer Dana Donofree when metastatic breast cancer was front-and-center in the entertainment and style headlines worldwide this past February. Ms. Joy championed a New York Fashion Week show with Ms. Donofree, whose company AnaOno offers collections of bras and loungewear specifically engineered for those affected by breast cancer. The show not only raised money for Ms. Joy’s foundation #Cancerland, but it was also the first of its kind to have only individuals affected by breast cancer walking the runway at the global fashion event.
It was also the last time all four of them were together.
“I’ve lost two dear, dear friends, both selfless and amazing women, to metastatic breast cancer within the past year. And I am not alone. Hundreds of families, friends and coworkers lose those they love and care about to breast cancer every single day,” says Ms. Donofree who was with Ms. Joy, Ms. Sorvino and Ms. Fairchild on the Hill this past October, and will be traveling to Capitol Hill Day this week. “Metastatic breast cancer has become an epidemic in this country and worldwide, and funding for research and opening access to clinical trials is paramount to finding an end to this disease. Champagne always spoke how this epidemic mirrors the AIDS crisis. And that like HIV and AIDS, terminal metastatic breast cancer will require a cocktail of drugs to manage it, and to first make it a chronic condition, before advancing to stage V: an actual cure.
“Those with metastatic disease are rarely spoken of when we talk about breast cancer; instead we use pink ribbons, we talk about spreading awareness to perform monthly breast exams, we even use the word ‘cured.’ There is no cure. And, as Champagne would say, we’re plenty aware of breast cancer; now’s the time to be aware that people are dying, and we need to find a way to end that.”
Ms. Joy’s tireless advocacy for “stage V” - a cure for the disease that claimed her life - will most certainly be amplified during the meetings this week.
“Champagne Joy was a champion for metastatic breast cancer and its community, and while we are saddened by her passing, we know we must march on without her,” Ms. Fairchild says. “She needed to see the beginning of change in the metastatic breast cancer community, and I believe she did. Her death comes as a devastating blow, but also as fuel to my fire. I’ll make sure those things set in motion keep their momentum. There has been, and continues to be, too much death. It’s time to stop this.”
For more information, or to arrange for interviews, please contact Amy Lee Mayer at 858-705-2868 (firstname.lastname@example.org) or Dana Donofree at 912-308-2184 (email@example.com).
The Capitol Hill Day Schedule of Events:
Tuesday, April 4th
11:15 am – 12:45 pm - Advocacy Training Luncheon - Room 562, Dirksen Senate Building
11:30 – 11:45 - Welcome Remarks and Team Introductions
11:45 – 12:30 - Issue Review and Congressional Visit Training
12:30 – 12:45 Recognize Community Congressional Champions
1:00 PM – 3:30 PM - Teams Depart for Meetings with Senate Offices
4:00 PM - Optional Debriefing Session Basement Cafeteria, Dirksen Senate Building
Wednesday, April 5th
11:15 AM – 11:45 AM Teams Gather for Meetings with the House of Representatives - Room 121, Cannon House Office Building
12:00 – 3:30 Teams Depart for Meetings with House Offices
4:00 - Optional Debriefing Session - Basement Cafeteria, Longworth House Office Building
ABOUT METAvivor: METAvivor is dedicated to the specific fight of women and men living with stage IV metastatic breast cancer. At the time of METAvivor’s founding, no organization was dedicated to funding research for the disease and no patient groups were speaking out about the dearth of stage IV cancer research. While more and more people have taken up the cry for more stage IV research, METAvivor remains the sole US organization dedicated to awarding annual stage IV breast cancer research.
ABOUT #CANCERLAND: We are on a mission - to live and love and get all the Ladies of #Cancerland to a better place. The organization (and subsequent documentary series) we created is called #Cancerland - a handful of fabulous women across this country who juggle their already amazing lives with their breast cancer diagnosis. Since our founding, our 501(c)(3) charity, has been doing global outreach and advocacy, along with tons of press. We’ve given our two cents, shot videos, drove people to chemo, recorded a theme song, raised a lot of money for breast cancer research/patient care and gained sponsors. And we walked at New York Fashion Week with AnaOno while raising money and awareness for metastatic breast cancer.