Advocacy smorgasbord-Advocate 4 breast cancer, healthcare causes
Comments
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One Minute Activist:
Susan G. Komen communication on May 7, 2020:
Too often, patients receive a surprise medical bill for treatment they expected to be covered by insurance. It's a harmful practice that throws millions of Americans into financial crisis, and one that consistently affects those impacted by breast cancer. This problem is even more widespread. More than half of Americans have received a surprise medical bill, but you can help change that by contacting your members of Congress today!
Now more than ever – amidst a global pandemic – patients could be forced to an out-of-network hospital if their in-network option is overcrowded or unavailable. As Congress works to pass multiple COVID-19 economic relief packages for hard-working Americans, it is time to stop surprise medical billing once and for all to protect patients from financially crippling medical bills.
If you have been faced with a surprise medical bill, we need to hear your story. Share it with us here.
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(US residents:) Quick link to a list of bills on the Hill regarding anything to do with BC, screenings, Covid bill, etc. that Komen follows.
https://p2a.co/cgXisY6Also I have heard that Komen is looking for patients to Share any story regarding over billing and medical bills but I do not have a link. Could probably locate on if this matter is of concern to you.
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Lymphedema Treatment Act organisation offers this opportunity to be active in your state:
If you would enjoy connecting with other lymphedema patient advocates in your area, we encourage you to join your state's team if you have not already done so.
There is no cost involved and no required time commitment. After completing this simple sign-up form you will be introduced to the other members in your state via email.As a team member you will also receive additional materials and guidance to contact your members of Congress in support of the Lymphedema Treatment Act. If your Representative and Senators are already cosponsors you can assist others in reaching that goal.
{If you encounter challenges with the links, I can post those seperately.}
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One minute advocate:
Take Action to End Surprise Medical Billing and Protect Patients
Patients often receive a surprise medical bill for treatment they expected to be covered by insurance. It's a harmful practice that throws millions of Americans into financial crisis, and one that those impacted by breast cancer experience.
During the current global pandemic, patients are being directed to other health care facilities if their in-network option is overcrowded or unavailable. Now is the time to end surprise medical billing once and for all and protect patients from financially crippling medical bills.
Effort promoted by Susan G Komen Center for Public Policy
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Patients' Access Webinar
Join us on Wednesday, June 24th at 12pm CST/1pm EST for the next webinar in our Patients' Access series discussing the role of public policies in response to the COVID-19 pandemic. This webinar will provide information and resources to our advocates on the legislation and regulations that have been enacted in response to COVID-19, the effect on current and future federal and state policies, and how this crisis has impacted patients. Register today!
No charge to register, Program offered by Susan G Komen Center for Public Policy
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The Virtual CPAT Symposium - Join Us
What you have experienced, endured, and learned matters to not just you, but to everyone who has and will be touched by cancer. Your story, and how you tell it, can shape how decision makers provide quality cancer care to millions of cancer survivors. That is why NCCS invites you to the annual Cancer Policy and Advocacy Team Symposium, virtually on June 15-16 and June 22nd-23rd from noon to 3:30 p.m. ET. each day, including a virtual Hill Week June 22nd-26th.
Advocates from around the country will connect to listen and understand your journey. There will be three different tracks so you can choose your own Symposium experience, whether you're new to advocacy or a seasoned Symposium attendee.
You'll also:
- Hear from health care and policy experts about the future of cancer care, managing stress and anxiety, how to "return" to work, and more;
- Participate in a roundtable on what survivorship means for people with metastatic cancer and help shape the conversation around metastatic survivorship;
- Hear from Washington insiders about health policy during the COVID-19 pandemic; and
- Prepare for and attend meetings with Congressional staff through the virtual Hill Week June 22-26.
{No charge to register.}0 -
Stage IV Stampede
The Stage IV Stampede is part of a grassroots advocacy effort designed to raise attention to our issues with members of Congress. The Stampede brings together patients, caregivers, and supporters, including family members, friends, and those who have lost a loved one to metastatic breast cancer, to advocate for advancing Stage IV metastatic cancer research and improving access to quality healthcare and benefits for individuals impacted by MBC.
Due to Covid-19, meetings with Congressional offices will be held virtually. Volunteer advocates will be asked to undertake one of the following outreach activities in lieu of an "in-person" meeting with congressional staff:
- Sending a personalized letter to your member of Congress
- E-mailing key congressional staff
- Calling the offices of your congressional representatives
If you are interested in taking part, we encourage you to watch the webinars and other links...and to submit your registration.
https://www.metavivor.org/take-action/stage-iv-sta...
{"Friends" and family members are welcome. This advocacy effort is not limited to stage 4 "metavivors."}
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NPR has occasionally aired personal stories on "surprise" medical bills. It seems to happen quite a bit. In a few cases after NPR contacted insurance or maybe provider, bill lowered. They know how to ask those probing questions.
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Lumpie, I wanted to let you know that as a direct result of this thread, on Tuesday I am scheduled to have a zoom call with an aide to my Senator to lobby on behalf of the NBCC. The #1 priority is $150 million in funding for the Dep of Defense Breast Cancer Research Program, the #2 priority is to remove the waiting periods for MBC peeps to get Medicare and Disability.
I hope I can do a good job representing all the BC people! Thank you for taking the time to do this thread I don't know that I would have gotten involved w/o it - and frankly in this case it's a COVID Silver lining as I can do a virtual lobby day but would not have been able to participate if I had to go to DC.
Your Rock !
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2019whatayear: Yeah! Oh my gosh - that is great! You absolutely will do a great job of communicating why these issues are so important to you and to other MBC'ers. As they say..."tell your story." That is one of the best ways to communicate the impact to you as a constituent.
Do you know if your Senator has taken action on the MBC Access to Care bill? (That is the one about eliminating the waiting periods for SSDI and Medicare.) If not, you can check here:
https://www.congress.gov/bill/116th-congress/senat...
As you noted, the "Stampede" is going virtual this year. That should give more people the opportunity to participate. They are doing a series of approximately weekly video conferences to help people get trained and ready. If you miss the live session, you can see a recording here:
https://www.metavivor.org/take-action/stage-iv-stampede/
(Scroll about 3/4 of the way down the page for links to those presentations. There are additional helpful resources at the bottom of this page. You can also register for the Stampede from a link on this page. There is no charge to register. The resources may be useful to you in preparation for your meeting and I hope that others reading will be inspired to take a look, as well.)
Thank you, 2019whatayear, for your work on this issue and for your kind words. Together, I know that we can make an impression on our legislators. "Go get 'em!"
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My Senator -Dick Durbin has not yet Co-Sponsord the bill -fingers crossed that should change soon....
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Legislator: "Where is Your Name? We are Dying to Know."
Congress Urged to Support
The Metastatic Breast Cancer Access to Care Act H.R. 2178/S. 1374
Tomorrow {16 June 2020} during the National Breast Cancer Coalition's annual Lobby Day breast cancer survivors and advocates from across the United States are targeting their Representatives and Senators to ask them to co-sponsor the bipartisan Metastatic Breast Cancer Access to Care Act H.R. 2178/S. 1374. which has been co-sponsored by more than 137 members of the House and 16 Senators. Learn more by watching this {45 second} video: https://vimeo.com/428321292
The Metastatic Breast Cancer Access to Care Act, initiated by the National Breast Cancer Coalition, is a bill to waive the 24-month waiting period for Medicare and the 5-month waiting period for Social Security Disability Insurance (SSDI) benefits for eligible individuals with, and dying from, Metastatic Breast Cancer.
The bill would enable those who have already been deemed eligible for Medicare and SSDI, to have immediate access to the benefits for which they are entitled. We urge the House and Senate to pass this legislation and remove what is essentially an arbitrary waiting period that creates undue hardship and financial burden on those with breast cancer whose lives are already being tragically cut short. People with Metastatic Breast Cancer should receive both Medicare and Social Security Benefits without delay; there is simply no time to wait.
Breast cancer affects millions of people, and when they can no longer work, many lose their health insurance when they need it the most. Metastatic breast cancer is stage 4 breast cancer that has spread from the breast to the bones, lungs, liver, brain or other distant parts of the body. While there are treatments, they are focused on extending survival for women and men with metastatic breast cancer. 90% of breast cancer deaths are as a result of metastatic disease. There is no cure.
The "Where is Your Name? We Are Dying to Know." campaign is coordinated by The National Breast Cancer Coalition and breast cancer survivors who are reaching out to those Representatives and Senators who have not yet sponsored the Metastatic Breast Cancer Access to Care Act.
{This action is promoted by the National Breast Cancer Coalition. You can download the video and post it on FB or Twitter if you are into that kind of thing.}0 -
Brief video commentary by Hillary Clinton re breast cancer advocay:
"I've always been inspired by NBCC and very grateful for your tireless work on an issue that's touched so many lives, including mine… We need you more than ever, out there pushing for bold solutions, bringing your advocacy to Capitol Hill and the White House, to researchers and regulators. Thank you for all you do to get us closer to a future we hope and pray for—a future without breast cancer." You can watch the full video here.
In an exclusive video, former Secretary of State Hillary Clinton delivered a personal message of motivation and appreciation to more than 200 NBCC advocates attending the 2020 Virtual Advocacy Summit.0 -
H.R. 1425 The Patient Protection and Affordable Care Enhancement Act is expected to come to the House floor for a vote on Monday, June 29. This legislation will, among other things, strengthen and expand upon the Affordable Care Act (ACA), shore up the Medicaid program, and lower prescription drug prices to the benefit of all Americans.
Here is the summary from Congress.gov:
This bill establishes the Improve Health Insurance Affordability Fund. States must use allocated funds to (1) issue reinsurance payments to health insurers (i.e., reimbursements to protect insurers against exceedingly high claims) for individual health insurance coverage, or (2) provide other assistance to reduce out-of-pocket costs (e.g., copayments, coinsurance, and deductibles) for qualified health plans offered in the individual market.
You may read more about the bill and see co-sponsors here:
https://www.congress.gov/bill/116th-congress/house-bill/1425
NBCC has signed on to support this legislation. You can see their letter of support here:
http://act.stopbreastcancer.org/site/DocServer/HR_1425_Letter_of_Support.pdf?docID=8543
{A key function of this legislation would be stabilizing the market by providing funding for "reinsurance." Reinsurance provides relief to health insurers when they have expensive patients - like those who need expensive cancer treatments - so that there is not a huge disincentive for them to provide care to those patients. Without re-insurance, cancer patients will face ongoing barriers to accessing high quality coverage and care.}
*US Residents may want to contact their Representative to encourage them to vote for this legislation.*
If you want to dig in to the wonky details, you can read more here:
https://www.healthaffairs.org/do/10.1377/hblog20190307.432910/full/
https://www.healthaffairs.org/do/10.1377/hblog20200624.197845/full/
Cross-posting on the ACA thread.
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One minute activist:
ANA VIRTUAL LOBBY DAY
The American Nurses Association (ANA) hosted a virtual advocacy day Thursday, June 25 as part of its nationwide campaign to reinvest in public health infrastructure and the workforce as the country begins to recover from the COVID-19 pandemic.
The ANA has drafted language that's ready for you to use, so ...even if you are not a nurse....all you have to do is visit the website ...tweek the language....and hit send! Tell your representatives in Congress to focus on rebuilding the public health workforce and infrastructure by funding community-based care and the CDC so our nation can better withstand the COVID-19 pandemic and the next national health crisis.
Share your participation using the hashtag #RNAction.0 -
NBCC's Public Policy Newsletter
{Really good so I am posting the whole newsletter FYI.}
June 22, 2020
Virtual Lobby Day: 170 Visits!
There are no advocates like NBCC advocates! On June 16, despite being unable to visit their members of Congress in person, over 200 NBCC advocates from 30 states completed more than 170 virtual hill meetings.
What was on the agenda? NBCC's legislative priorities. Advocates thanked those members who had signed onto the DOD BCRP Dear Colleague letters and those who had co-sponsored the Metastatic Breast Cancer Access to Care Act, H.R. 2178/S. 1374. And they made a forceful case for support to everyone else.
In response, S. 1374 has four new co-sponsors: Senators Collins, Ernst, Feinstein, and Merkley and H.R. 2178 has 6: Representatives Cardenas, Cisneros, Costa, Lofgren, Ocasio-Cortez, and Vargas. We are confident that even more new co-sponsors will sign on soon.
Our relentless advocates continue to follow up.
We need your voice!
Has your member signed on to the bipartisan Metastatic Breast Cancer Access to Care Act? We are Dying to Know.
Learn more by watching this video: https://vimeo.com/428321292
We need your help to follow-up with your Representatives and Senators and make sure they co-sponsor this important legislation. Check the current co-sponsor lists for H.R. 2178 and S. 1374. If your Representative or Senator is not on the list, contact them today and ask them to sign on.
The Metastatic Breast Cancer Access to Care Act, initiated by the National Breast Cancer Coalition, is a bill to waive the 24-month waiting period for Medicare and the 5-month waiting period for Social Security Disability Insurance (SSDI) benefits for eligible individuals with, and dying from, Metastatic Breast Cancer. It is important to note that these women and men have already been through the application process and were deemed eligible for benefits. Why should they have to wait? The waiting periods are arbitrary and create undue hardship and financial burden on those with metastatic breast cancer.
Summit Public Policy Roundup
On May 19, we launched our first-ever virtual Advocate Leadership Summit. As always, the Summit was a blend of education, training, science, and public policy. NBCC advocates heard from policy experts and lawmakers during the 2020 Virtual Leadership Summit. Workshops during the Summit covered strategies for smart advocacy on Capitol Hill, using social media to enhance your advocacy efforts, an overview of the Department of Defense appropriations process, and review of the NBCC toolkit for engaging voters and candidates during the 2020 elections.
The Political Plenary kicked off with a video address by former Secretary of State and First Lady, Hillary Clinton. She spoke of her long relationship with NBCC and the importance of our cause and shared stories of our long-term partnership.
The plenary panel featured Carolyn Clancy, Deputy Under Secretary for Health, Veterans Health Administration, Cindy Pearson, Executive Director, National Women's Health Network, former Congresswoman Donna Edwards, pollster Doug Usher and advocate Nancy Ryan, NBCC New Hampshire field coordinator. In two panels, advocates heard about the systemic changes needed in the U.S. healthcare system and the voter trends and issues impacting the 2020 elections and the need for advocacy involvement.
Rep. Adam Schiff (D-CA) delivered the Keynote Address at the annual membership meeting and took time to answer advocates' questions.
Measuring the Coronavirus Impact on the Breast Cancer Community
Even if you responded to prior NBCC surveys, we are asking you to help us share the Breast Cancer and Coronavirus survey with your network, so that NBCC can assess the impact of the coronavirus pandemic (COVID-19) in real-time.
On an ongoing basis, NBCC is working to determine what public policies we should be focusing on to make certain the needs of the breast cancer community are met. We need your help and would like to hear more about the challenges breast cancer patients and caregivers are facing because of the pandemic, including accessing care in their community.
Please click here to answer this quick survey. We will analyze and publish the results to determine what policy steps NBCC can take moving forward.
Join Us
Join the tens of thousands like you who want an end to breast cancer. For just $35 a year, you can become an NBCC member and receive exclusive benefits. For more information about being a member, click here.
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Lymphedema Treatment Act
Only 29 Senators and 60 House members have yet to cosponsor the Lymphedema Treatment Act! They are listed below. If you see any of your members on the list please contact them again.
Congress has been moving slow on putting together their next legislative package. First it was anticipated in May, then June, and now July. In the meantime, let's encourage these 89 members to join their 454 Congressional colleagues who are already supporting the LTA. Every additional cosponsor helps increase our chances of getting into the next legislative package!
Together, we will pass the Lymphedema Treatment Act!
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org
Tips on how to personalize your phone message
are at the bottom of this newsletter.SENATE CALL SCRIPT:
"I am a constituent calling in support of the Lymphedema Treatment Act, which was passed in the house in December. This bipartisan bill has 70 Senate cosponsors and I would like for Senator [name] to join as a cosponsor as well. This issue is important to me because... [2-3 brief sentences]. If there has ever been a time to prioritize preventative care and make sure patients have the medical supplies they need to manage their condition at home and stay out of the hospital it is now! Please ask Senator [name] to cosponsor Senate bill number S.518, the Lymphedema Treatment Act."
HOUSE CALL SCRIPT:
"I am a constituent calling in support of the Lymphedema Treatment Act, which was passed in the House in December. This bipartisan bill has over 380 House cosponsors and I would like for Representative [name] to join as a cosponsor as well. This issue is important to me because… [2-3 brief sentences]. If there has ever been a time to prioritize preventative care and make sure patients have the medical supplies they need to manage their condition at home and stay out of the hospital it is now! Please ask Representative [name] to cosponsor House bill number H.R.1948, the Lymphedema Treatment Act."
CALLING is the most effective, but you can also send emails HERE.
NON-COSPONSORING MEMBERS OF CONGRESS:
AL-Senate: Richard Shelby, 202-224-5744
AL-02 Martha Roby 202-225-2901
AL-03 Mike Rogers 202-225-3261
AL-06 Gary Palmer 202-225-4921
AZ-05 Andy Biggs 202-225-2635
CA-04 Tom McClintock 202-225-2511
CA-12 Nancy Pelosi 202-225-4965 *
CA-18 Anna Eshoo 202-225-8104 *
CA-22 Devin Nunes 202-225-2523 *
CA-23 Kevin McCarthy 202-225-2915 *
CA-34 Jimmy Gomez 202-225-6235
CA-39 Gilbert Cisneros 202-225-4111
CO-Senate: Cory Gardner, 202-224-5941
CO-04 Ken Buck 202-225-4676
GA-Senate: David Perdue, 202-224-3521
GA-Senate: Kelly Loeffler, 202- 224-3643
IA-Senate: Chuck Grassley, 202-224-3744 *
ID-Senate: Jim Risch, 202-224-2752
ID-Senate: Mike Crapo, 202-224-6142
ID-01 Russ Fulcher 202-225-6611
GU (Guam) Michael San Nicolas 202-225-1188
IN-Senate: Mike Braun, 202-224-4814
IL-15 John Shimkus 202-225-5271
KS-Senate: Pat Roberts, 202-224-4774
KY-Senate: Rand Paul, 202-224-4343
KY-Senate: Mitch McConnell, 202-224-2541 *
KY-06 Andy Barr 202-225-4706
LA-Senate: Bill Cassidy, 202-224-5824
LA-Senate: John Kennedy, 202-224-4623
LA-01 Steve Scalise 202-225-3015
LA-03 Clay Higgins 202-225-2031
MA-01 Richard Neal 202-225-5601
MD-05 Steny Hoyer 202-225-4131
ME-Senate: Susan Collins, 202-224-2523
MI-03 Justin Amash 202-225-3831
MI-06 Fred Upton 202-225-3761
NC-Senate: Richard Burr, 202-224-3154, then enter #2
NC-05 Viginia Foxx 202-225-2071
NC-06 Mark Walker 202-225-3065
NC-09 Dan Bishop 202-225-1976
NC-10 Patrick McHenry 202-225-2576
NE-Senate: Ben Sasse, 202-224-4224
NJ-06 Frank Pallone Jr. 202-225-4671 *
NV-04 Steven Horsford 202-225-9894
NY-23 Tom Reed 202-225-3161
OH-Senate: Rob Portman, 202-224-3353
OH-01 Steve Chabot 202-225-2216
OH-04 Jim Jordan 202-225-2676
OH-08 Warren Davidson 202-225-6205
OH-16 Anthony Gonzalez 202-225-3876
OR-Senate: Ron Wyden, 202-224-5244 *
OR-02 Greg Walden 202-225-6730
PA-Senate: Pat Toomey, 202-224-4254 *
PA-09 Daniel Meuser 202-225-6511
PA-10 Scott Perry 202-225-5836
SC-03 Jeff Duncan 202-225-5301
SC-04 William Timmons 202-225-6030
SC-05 Ralph Norman 202-225-5501
SC-06 James E. Clyburn 202-225-3315
SD-Senate: John Thune, 202-224-2321
TN-Senate: Marsha Blackburn, 202-224-3344
TN-Senate: Lamar Alexander, 202-224-4944
TN-06 John Rose 202-225-4231
TN-07 Mark Green 202-225-2811
TN-08 David Kustoff 202-225-4714
TX-Senate: Ted Cruz, 202-224-5922
TX-Senate: John Cornyn, 202-224-2934
TX-02 Dan Crenshaw 202-225-6565
TX-08 Kevin Brady 202-225-4901 *
TX-10 Michael McCaul 202-225-2401
TX-21 Chip Roy 202-225-4236
TX-22 Pete Olson 202-225-5951
TX-26 Michael Burgess, MD 202-225-7772 *
TX-27 Michael Cloud 202-225-7742
TX-31 John Carter 202-225-3864
TX-33 Marc Veasey 202-225-9897
UT-Senate: Mike Lee, 202-224-5444
UT-Senate: Mitt Romney, 202-224-5251
UT-04 Ben McAdams 202-225-3011
VA-06 Benjamin Cline 202-225-5431
VA-10 Jennifer Wexton 202-225-5136
WV-Senate: Joe Manchin, 202-224-3954
WV-02 Alex Mooney 202-225-2711
WY-Senate: Mike Enzi, 202-224-3424
WY-Senate: John Barrasso, 202-224-6441
TIPS ON PERSONALIZING YOUR MESSAGE:
The most effective things you can convey are why your doctor prescribed compression garments are essential to your health and quality of life. The focus should be on their medical necessity, and how they enable you to manage your lymphedema at home, prevent complications like infections, and keep you able to work, take care of your family, etc. - whatever is most applicable for you.
The most important thing to avoid saying is that they are expensive. Cost, or a person's ability to afford to pay out of pocket, is not a reason why something should be covered by insurance, only medical necessity is. Keep the focus on compression garments being essential for the treatment and management of lymphedema, just as insulin is for a diabetic.
* KEY MEMBERS:
Due to their Leadership or Committee positions, it is unlikely that these members will cosponsor the bill, but because they are in powerful positions it's especially important that they hear from constituents! Rather than asking them to cosponsor the bill you, ask these members to make sure the LTA is included in the next legislative package. If you have any questions about corresponding with these offices feel free to reply to this email.0 -
LBBC Young Advocate Program now accepting applicants
Living Beyond Breast Cancer is now accepting applications for our Young Advocate Program and we hope you can help us spread the word to your patients and clients.
The Young Advocate Program works with women diagnosed with breast cancer before the age of 45 to advocate for themselves and others who have been impacted by breast cancer. Living Beyond Breast Cancer provides Young Advocates with tools and training to use their own personal experience and raise awareness about breast cancer in their own communities.
"This experience has allowed me to turn the most trying situation of my life, into something empowering for myself and others. I am forever grateful for the practical knowledge, amazing connections, skills and support I have gained this year."
This year's training will be held virtually with remote training sessions being held on August 26, September 12, and September 13. This program is open to women diagnosed with early stage and metastatic breast cancer before age 45 who live in the United States. We are seeking a diverse pool of applicants, including applicants from all ethnic and racial backgrounds, sexual orientations and gender identities, and economic status.
Please share this downloadable flyer with your patients and clients or hang it in your workplace. The deadline for applicants to apply is Friday, July 17.
If you have any questions or need more information about the Young Advocate Program, please contact us at ywi@lbbc.org or (855) 807-6386 ext. 129.
{This program has an excellent reputation for those interested in networking and strengthening advocacy skills.}
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Komen's first ever virtual Advocacy Summit September 1, 2020
Register and advocate!
Thank you to everyone who has expressed continued interest in taking the fight against breast cancer to our federal lawmakers with the 2020 Virtual Advocacy Summit on September 1, 2020. With so many difficult challenges facing our nation, with so many tough choices that must be made—and with so much at stake—this is a vital time for us to make sure our priorities are heard in D.C. Our mission is more important than ever, which is why we are dedicated to continuing our advocacy engagement and ensuring the voice of the breast cancer community is heard.
Over the past few months we have been hard at work behind the scenes organizing Komen's first ever virtual Advocacy Summit and we are happy to share updated details around the event.
In order to effectively advocate for policies that will benefit the breast cancer community, the Center for Public Policy will host a series of trainings to prepare advocates for the Virtual Summit. Should you be unable to attend the live events, the trainings will be made available as a recording on our Virtual Advocacy Summit Hub.
- Government 101-July 29th 1:00 pm EST
Listen in for a breakdown on how our federal government works and how our advocacy can affect the process. This training is targeted towards first time attendees or those wanting a refresher course. Register here.
- Advocacy 101-August 5th 1:00 pm EST
Join us as the Public Policy and Advocacy team provides a comprehensive review of advocacy at the federal level and how advocates can get involved on our day of action. This training is targeted towards first time attendees or those wanting a refresher course. Register here.
- Policy Issue Briefing-Week of August 10th
Learn more about the issues most important to Komen this legislative session, understand the current state of play on Capitol Hill, and how that informs our advocacy. Time and further details will be announced
- Grassroots Advocacy 101- Week of August 17th
Hear how your story can be used to influence our lawmakers and the different ways you can take action. Time and further details will be announced.
We'll also be launching a Virtual Advocacy Summit Hub that will have several different resources all conveniently in one location, including:
- Act: An opportunity to take action and contact with your lawmakers through email.
- Learn: Additional information on our priority issues with fact sheets.
- Empower: Links to the recordings of the trainings that will be held, as well as additional resources.
- Connect: A way to easily find your lawmakers and learn more about the issues they support.
- Share: A chance to share your story.
In the coming weeks, we will begin reaching out to targeted advocates for participation in virtual congressional meetings. With the transition to virtual, we have limitations on the number of attendees that can participate in each meeting. As we continue to work through the details and determine logistics with Congressional offices, we'll be contacting those advocates directly so please keep this in mind as calendars begin to fill up for September 1.
Keep an eye on your inbox for more details on the Virtual Summit and additional engagement opportunities over the coming weeks and month. As always you can sign up to be an Advocacy Insider on Komen's Action Center and follow us on social media (Facebook-@SusanGKomenAdvocacy, Twitter-@KomenAdvocacy). We look forward to what we are able to achieve together!
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Thanks Lumpie, "The Young Advocate Program " I do not know if the Social Services person who started up sessions at the hospital she worked at is just on hold with Covid19 or if there are plans to start up the group she initiated. They were helpful, just talking with other cancer survivors. I will send this to her as well as asking my MO about posting it in her office. I'm not young any more, but finding local support is hard. Several ideas a nurse gave me at the MO office just was not what I was looking for.
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BlueGirlRedState: Hope it is helpful! It seems like it is a matter of persistently chipping away at the isolation and policy matters. But I really believe that every little improvement helps. So glad we have these forums for sharing. In the age before the internet, I would be feeling the full weight of isolation, but with it, I feel like there are a lot of others out there. Good luck! Keep up the struggle!
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I recommend the book "Rebel Cinderella: From Rags to Riches to Radical, the Epic Journey of Rose Pastor Stokes." ,by Adam Hochschild. Unfortunately I had to return it when I was only about 1/3 of the way through. Her activism was in the early 1900s. At one point, after she has married one of the wealthiest men in New York, an obnoxious politician suggests that maybe if she removed her gloves, he could see her calluses. To which she replied, and maybe if you dropped your pants, we'd see your calluses.
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Oh, my! I'll have to look for that. She sounds like quite a character.
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Lymphedema Treatment Act
In recognition of Chronic Disease Day 2020, which took place last Friday, we called on Congress to include the Lymphedema Treatment Act in the next legislative package. The below announcement was sent to all 535 House and Senate Congressional offices.
Ensuring that patients have access to the medical supplies they need to manage their lymphedema at home and reduce their risk of complications or hospitalization has never been more important.
In our last newsletter we listed the 89 members of Congress who are not yet supporting the LTA. Every additional cosponsor increases our chances of getting into the next legislative package, so please continue to contact these offices and ask your family and friends to do the same.
The list of members that need to be contacted, along with all of the information to call and email their offices, can be found online HERE. We also have a printable handout version of this information available HERE.
Together, we will pass the Lymphedema Treatment Act!0 -
Expand Eligibility for Paid Leave to Include Cancer Survivors
Even though the Hill Week's success of 60 advocates speaking with more than 80 Congressional offices is behind us, it is still CRITICAL that your voices be heard about the policies needed for cancer survivors during the COVID-19 pandemic.
TAKE ACTION
We urge Congress to expand eligibility for paid family and medical leave to include people with chronic conditions, such as cancer, and working members of their households.
Because of survivors' history of cancer, patients are especially vulnerable to COVID-19. Cancer survivors may be at higher risk of health complications from COVID-19 and may experience more serious infection, if acquired. Expanding eligibility for the paid family and medical leave program to include individuals the Centers for Disease Control (CDC) considers at high risk will allow cancer patients to remain home for the duration of the COVID-19 pandemic and will help ensure their health and safety.
NCCS was pleased to see the expansion of paid family and medical leave included in H.R. 6800, the HEROES Act. We urge the Senate to also protect cancer survivors, who may require time away from work due to the risk COVID-19 poses to their health or health of a loved one.
We urge Congress ensure people with underlying health conditions and working members of their household receive job protection and financial support that enables them to remain at home for the duration of the pandemic.
Take Action! Tell Congress to Expand Paid Leave for People With Chronic Heath Conditions
NCCS is here to help. Use the links below to call or email your Members of Congress, or contact Lindsay Houff and we are happy to help you.- Find your Senators' emails and phone numbers »
- Find your Representative's emails and phone numbers »
- Find who your Members of Congress are using your zip code »
Courtesy of the National Coalition for Cancer Survivorship.0 -
Thanks as always Lumpie. Glad you are continuing this important work! Just to say that BUPA ( with whom we have private heath insurance) state in their policy docs - UK - that they do not consider cancer to be a chronic condition. This is a positive for me because they will not cover chronic conditions as a rule, but will cover cancer treatment with no time or cost limits even if you become incurable. BUPA may be the only company here who will do that.
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Karenfizedbo15: I sometimes forget to specify that many of my posts pertain to US residents. But I am guessing people don't have much trouble figuring that out. Yours is good information to specify. I don't know much about private insurance in the UK but this may help others figure out aspects of access to care. As I am sure you know, it is a constant battle here for access and coverage. And every jurisdition has its own challenges.
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Absolutely Lumpie! I am constantly flabbergasted at some of the issues folk in the US have to deal with and grateful that our system, whilst not perfect by any means, at least is generally consistent.
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We have to keep "squeeking". One of my legislators wrote back with a lecture about what lymphedema was, blah blah blah, budgets, blah blah blah, not enought money to cover all the health care problems........ I felt like he was writing about road construction options. I wanted to strangle him with my compression sleeve. I think he had already dismissed a lot of what health care could and should cover. The others who wrote back made no committments, concerns about the rising cost of health care, but I felt that they had at least considered it.
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Regarding the Lymphedema Treatment Act (S.518) - your help is urgently needed!
Senator Cantwell, our bill sponsor, has informed us she is pushing hard to have the LTA included in the next legislative package, and has asked that our advocates contact their Senate offices now. Please use the information below to take action.
Your personalized email messages to your Senators' aides are the most powerful tool we have.
Thank you for your advocacy!
INSTRUCTIONS:
The below templates are written from the perspective of a patient. If you are a family member, clinician, etc., please modify accordingly. Copy and paste the template into a new email. The certain text below needs to be completed by youand changed to black. You should write each of your Senate offices separately.
SEND TO:
Attn The Health and/or Medicare Legislative Aide's for your senator. Find your Senator here:
https://www.senate.gov/general/contact_information/senators_cfm.cfm
EMAIL SUBJECT LINE:
Please Include the Lymphedema Treatment Act (S.518) in the Next COVID-19 Response Package
EMAIL TEMPLATE:
Dear (aide's name),
I am grateful that Senator (name) is a cosponsor of the Lymphedema Treatment Act (S.518). As your constituent, I am reaching out to ask that this bill be included in the next COVID-19 response package. Ensuring that patients have access to the medical compression supplies they need to effectively manage this condition at home and stay out of the hospital has never been more important.
**(Personalize your message here, beginning with one sentence stating your relationship to lymphedema. Emphasize that compression garments are vital. If the pandemic and shutdowns have impacted your ability to manage your lymphedema, please explain. For example, have your symptoms worsened? Have you been unable to obtain new garments or go to therapy? Has your financial situation been impacted, leaving you unable to pay for anything related to your lymphedema care? Have you had an infection or other complication and been unable to get it treated properly or in a timely fashion? Anything pandemic-related that has had an impact on your lymphedema can be included, and be mindful that stressing the medical necessity of your doctor prescribed compression garments is always important. You may include pictures if appropriate, but large attachments could cause your email to get blocked.)**
I hope that Senator (name) will talk to leadership about including this bipartisan healthcare bill, which has 70 Senate and 382 House cosponsors in the next COVID-19 response package. Please let me know if I can answer any questions. Thank you for your service during these challenging times!
Sincerely,
Your full name
Your full address
Your phone number
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