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Topic: Advocacy smorgasbord-Advocate 4 breast cancer, healthcare causes

Forum: Advocacy — Join here to discuss issues where we can have a voice!

Posted on: Feb 25, 2020 04:22PM

Lumpie wrote:

I think that many of us want a way to advocate for breast cancer and health care related causes. Sometimes we aren't sure where to begin. Sometimes the cause is ...or is not...a good fit. Recognizing that our time, energy, interests and other available resources vary, I thought it might be beneficial to start a thread that would allow us to share links that offer others an opportunity to speak up and be hear to the extent they are comfortable. Some may be "one minute activist" type. Others may require more time and effort. Share generously. Pick and choose what works for you. Advocacy smorgasbord!

In general, please share postings that relate to breast cancer causes or access to care for breast cancer. Please be respectful of members' varying outlooks and preferences.

Thanks for being part of the effort, the conversation and the solution!

"We must be willing to let go of the life we have planned, so as to have the life that is waiting for us." "If adventures will not befall a young lady in her own village, she must seek them abroad." "Buy the ticket, take the ride." Dx 2015, DCIS/IDC, Right, 3cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2+ (IHC) Targeted Therapy 1/14/2016 Herceptin (trastuzumab) Chemotherapy 1/14/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 2017, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+ Radiation Therapy Whole-breast: Breast Surgery Lumpectomy: Right Surgery Lumpectomy: Right
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Posts 31 - 42 (42 total)

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Mar 12, 2020 08:37PM Karenfizedbo15 wrote:

For info and advocacy re sick pay:

https://twitter.com/mccubbinkaren/status/1236061579671744518?s=21

Surgery 9/7/2007 Lymph node removal: Underarm/Axillary; Mastectomy: Right; Reconstruction (right): Latissimus dorsi flap Dx 4/2018, IDC, Right, Stage IV, metastasized to lungs, 1/17 nodes, ER+/PR+, HER2-
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Mar 12, 2020 09:04PM Lumpie wrote:

Karenfizedbo15: Seems like sometimes they get in a hurry to put out fires (which often do need to be put out) and don't think much about equitable balance. Hope things work out for everyone!

"We must be willing to let go of the life we have planned, so as to have the life that is waiting for us." "If adventures will not befall a young lady in her own village, she must seek them abroad." "Buy the ticket, take the ride." Dx 2015, DCIS/IDC, Right, 3cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2+ (IHC) Targeted Therapy 1/14/2016 Herceptin (trastuzumab) Chemotherapy 1/14/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 2017, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+ Radiation Therapy Whole-breast: Breast Surgery Lumpectomy: Right Surgery Lumpectomy: Right
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Mar 16, 2020 10:04PM Lumpie wrote:

Lymphedema Treatment Act advocacy

For those who did not see it, lymphedematreatmentact.org put out an announcement today. Here are a couple of highlights:

Another, much larger emergency response package in addition to the one currently awaiting passage in the Senate is expected in the coming weeks. We ask that you stand ready to act quickly if we issue an urgent call to action to contact your own members of Congress, or those from select Congressional Committees. We may have a very small window of opportunity to persuade lawmakers to include the LTA.

We also encourage you to join your state's advocacy team if you have not already done so. Team members receive additional resources for contacting Congressional staff, and also have direct access to members of our Advocacy Training Committee. And, you can increase your impact while doing everything from home via phone and email.

The link above will allow you to sign up for your state's advocacy group if you are so inclined.

"We must be willing to let go of the life we have planned, so as to have the life that is waiting for us." "If adventures will not befall a young lady in her own village, she must seek them abroad." "Buy the ticket, take the ride." Dx 2015, DCIS/IDC, Right, 3cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2+ (IHC) Targeted Therapy 1/14/2016 Herceptin (trastuzumab) Chemotherapy 1/14/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 2017, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+ Radiation Therapy Whole-breast: Breast Surgery Lumpectomy: Right Surgery Lumpectomy: Right
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Mar 16, 2020 11:25PM Lumpie wrote:

3/16/2020: A National Breast Cancer Coalition communication says: Thank your (U.S.) Representatives and Senators for Supporting the DOD BCRP

Thanks to your advocacy efforts 199 Representatives signed the letter to the House Defense Appropriations Subcommittee and 24 Senators signed the letter to the Senate Appropriations Committee calling for $150 million for the Department of Defense (DOD) Breast Cancer Research Program (BCRP) for FY2021.

Please contact the Representatives and Senators in your state who signed the letters and thank them for supporting the DOD BCRP.

Thank you for all your hard work! We could not have done this without you.

{These appropriations comprise a significant amount of funding for breast cancer research. I also took the opportunity to ask my representative to co-sponsor the Metastatic Breast Cancer Access to Care Act (HR 2178/S 1374).}

"We must be willing to let go of the life we have planned, so as to have the life that is waiting for us." "If adventures will not befall a young lady in her own village, she must seek them abroad." "Buy the ticket, take the ride." Dx 2015, DCIS/IDC, Right, 3cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2+ (IHC) Targeted Therapy 1/14/2016 Herceptin (trastuzumab) Chemotherapy 1/14/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 2017, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+ Radiation Therapy Whole-breast: Breast Surgery Lumpectomy: Right Surgery Lumpectomy: Right
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Mar 19, 2020 12:15PM Lumpie wrote:

One minute advocate:

19th March 2020

This from the American Cancer Society Cancer Action Network:

Right now – literally – the U.S. Senate is discussing the next coronavirus relief package. We need to make sure your senators know that community-based charitable organizations should be part of that package.

Please send a message to your U.S. Senators asking them to provide support for the organizations whose mission is to serve the people in their community. It takes less than a minute using our easy action form.

https://secure.fightcancer.org/site/Advocacy?pagen...


"We must be willing to let go of the life we have planned, so as to have the life that is waiting for us." "If adventures will not befall a young lady in her own village, she must seek them abroad." "Buy the ticket, take the ride." Dx 2015, DCIS/IDC, Right, 3cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2+ (IHC) Targeted Therapy 1/14/2016 Herceptin (trastuzumab) Chemotherapy 1/14/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 2017, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+ Radiation Therapy Whole-breast: Breast Surgery Lumpectomy: Right Surgery Lumpectomy: Right
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Mar 25, 2020 12:53AM Lumpie wrote:

Over 100 Lawmakers Call on Administration to Open Special Enrollment Period Now to Combat COVID-19

https://doggett.house.gov/media-center/press-relea...

This link goes to a Congressional Representative's website. It outlines his position in favor of a special enrollment period. The text of a letter to The Secretary of HHS, which oversees the federal marketplace, is on the page. If you wish to advocate for a special enrollment period, you could use this language as a template/model to petition Secretary Azar and to ask your own congressional representatives to encourage the Secretary to open a special enrollment period.

"We must be willing to let go of the life we have planned, so as to have the life that is waiting for us." "If adventures will not befall a young lady in her own village, she must seek them abroad." "Buy the ticket, take the ride." Dx 2015, DCIS/IDC, Right, 3cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2+ (IHC) Targeted Therapy 1/14/2016 Herceptin (trastuzumab) Chemotherapy 1/14/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 2017, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+ Radiation Therapy Whole-breast: Breast Surgery Lumpectomy: Right Surgery Lumpectomy: Right
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Mar 25, 2020 12:59AM Lumpie wrote:

H.R. 6201, FAMILIES FIRST CORONAVIRUS RESPONSE ACT Emergency Paid Sick Leave.

This memo outlines the provisions of the House version of Emergency Sick Leave legislation. The bill has passed the House but has not yet passed the Senate. Some of you may be interested in reviewing the substance of the proposed legislation. Others may wish to reach out to Senators to advocate for or against certain provisions.

https://appropriations.house.gov/sites/democrats.a...


"We must be willing to let go of the life we have planned, so as to have the life that is waiting for us." "If adventures will not befall a young lady in her own village, she must seek them abroad." "Buy the ticket, take the ride." Dx 2015, DCIS/IDC, Right, 3cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2+ (IHC) Targeted Therapy 1/14/2016 Herceptin (trastuzumab) Chemotherapy 1/14/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 2017, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+ Radiation Therapy Whole-breast: Breast Surgery Lumpectomy: Right Surgery Lumpectomy: Right
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Mar 27, 2020 04:56PM Lumpie wrote:

The 2020 (U.S.) Census is now live! And it has never been easier to respond on your own, whether online, over the phone or by mail—all without having to meet a census taker. Go to 2020Census.gov right now to fill out your census.

The census affects funding for all sorts of services, including health related services.

"We must be willing to let go of the life we have planned, so as to have the life that is waiting for us." "If adventures will not befall a young lady in her own village, she must seek them abroad." "Buy the ticket, take the ride." Dx 2015, DCIS/IDC, Right, 3cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2+ (IHC) Targeted Therapy 1/14/2016 Herceptin (trastuzumab) Chemotherapy 1/14/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 2017, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+ Radiation Therapy Whole-breast: Breast Surgery Lumpectomy: Right Surgery Lumpectomy: Right
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Mar 30, 2020 12:22PM Lumpie wrote:

One minute advocate:

See if your (U.S.) representative or senators have co-sponsored the Lymphedema Treatment Act and, if so, Tweet them a thank you:

Tweet a "Thank You" to our cosponsors! http://www.votervoice.net/Shares/B0XeOAp4AC9tRAgJB...

Share this campaign on your personal website:

http://www.votervoice.net/Shares/B0XeOAp4AC9tRAgJB...


"We must be willing to let go of the life we have planned, so as to have the life that is waiting for us." "If adventures will not befall a young lady in her own village, she must seek them abroad." "Buy the ticket, take the ride." Dx 2015, DCIS/IDC, Right, 3cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2+ (IHC) Targeted Therapy 1/14/2016 Herceptin (trastuzumab) Chemotherapy 1/14/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 2017, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+ Radiation Therapy Whole-breast: Breast Surgery Lumpectomy: Right Surgery Lumpectomy: Right
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Mar 30, 2020 02:36PM BlueGirlRedState wrote:

My representatives have not signed on to the Lymphedema bill of rights, and replies to my letter were pathetic. As my lymphedema sleeve/glove wear out, I am tempted to send them to one of them in particular. Fortunately I do have good private, and am trying to find out if it is true, that if Medicare does not cover, neither will my private. Then why keep the private I ask. Landscape keeps changing, and will no doubt change again when I have to make that decision in 2 1/2 years. CV-19 pandemic will raise Health Care to a new level.

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Mar 30, 2020 07:22PM Karenfizedbo15 wrote:

Just to say I had a 50min phone conversation with the clinical policy adviser to the UK dept of work and pensions (DWP) specifically around our our experiences dealing with their systems and processes ( the actual meeting was cancelled, clearly, but Marie Curie arranged for 9 of us across the UK to talk 1on 1 with DWP delegates).

I genuinely think she was shocked at just how inefficient and stressful the system is when you are on the receiving end. As a doctor with a background in palliative care she should be on our side. As I am still waiting on a decision as to whether I need to attend a ‘ fit for work’ interview - really? I have a very good job which I just can’t manage any more with MBC - she did ask if she could contact me back to see if the system actually made me go through with that. We’ll see....

Surgery 9/7/2007 Lymph node removal: Underarm/Axillary; Mastectomy: Right; Reconstruction (right): Latissimus dorsi flap Dx 4/2018, IDC, Right, Stage IV, metastasized to lungs, 1/17 nodes, ER+/PR+, HER2-
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Mar 30, 2020 11:03PM Lumpie wrote:

Karenfizedbo15:

So impressed that you got to speak with the clinical policy adviser @ DWP! Sounds like she showed appropriate concern. Even if things don't change right away, I find with the government here that making change can be like dislodging a boulder: You have to overcome a lot of inertia, but with persistence (and a few squeaky wheels), you can often get things moving. Good luck!

"We must be willing to let go of the life we have planned, so as to have the life that is waiting for us." "If adventures will not befall a young lady in her own village, she must seek them abroad." "Buy the ticket, take the ride." Dx 2015, DCIS/IDC, Right, 3cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2+ (IHC) Targeted Therapy 1/14/2016 Herceptin (trastuzumab) Chemotherapy 1/14/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 2017, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+ Radiation Therapy Whole-breast: Breast Surgery Lumpectomy: Right Surgery Lumpectomy: Right

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