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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) Chemotherapy 1/14/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 1/14/2016 Herceptin (trastuzumab) Dx 2017, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+ Surgery Lumpectomy: Right Surgery Lumpectomy: Right Radiation Therapy Whole-breast: Breast
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Feb 25, 2020 04:25PM - edited Feb 25, 2020 04:25PM by Lumpie

One minute activist:

Even with insurance, patients pay sky-high prices for prescription drugs and medically necessary devices, such as compression garments for lymphedema.
Tell your Senators to vote YES on the Lower Drug Costs Now Act (H.R. 3).

https://p2a.co/5znCXTI

{Links for a pre-populated letter.}

"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) Chemotherapy 1/14/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 1/14/2016 Herceptin (trastuzumab) Dx 2017, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+ Surgery Lumpectomy: Right Surgery Lumpectomy: Right Radiation Therapy Whole-breast: Breast
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Feb 25, 2020 04:34PM Lumpie wrote:

One minute activist:

Support the Metastatic Breast Cancer Access to Care Act

There are currently more than 155,000 women and men living with metastatic breast cancer in the United States. While metastatic breast cancer can be treated, there is no cure. Under current regulations, metastatic breast cancer patients are subject to a
5-month waiting period for Social Security Disability Insurance and a 24-month waiting period for eligible Medicare benefits.

The Metastatic Breast Cancer Access to Care Act will provide metastatic breast cancer patients access to the care they need by waiving the 5-month waiting period for Social Security Disability insurance and the 24-month waiting period for eligible Medicare benefits. If you support the initiative, then contact your local officials with just one click.

https://p2a.co/1IAk8fo


"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) Chemotherapy 1/14/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 1/14/2016 Herceptin (trastuzumab) Dx 2017, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+ Surgery Lumpectomy: Right Surgery Lumpectomy: Right Radiation Therapy Whole-breast: Breast
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Feb 25, 2020 04:39PM Lumpie wrote:

Save the Date - Susan G. Komen Advocacy Summit 2020

The 2020 Susan G. Komen Center for Public Policy Advocacy Summit that will be held June 8 to 10, 2020, at the Crystal Gateway Marriott in Arlington, VA.

This annual event ensures that all facets of Komen - our Affiliates, advocates, researchers and key partners from across the country - gain a comprehensive understanding of current advocacy initiatives and furthers the organization's mission by conducting outreach and education to federal lawmakers.

More information will be provided in the coming months, including details for pre-conference breakout sessions that include: Speak Truth to Power: Advocating to Achieve Health Equity, Metastatic Breast Cancer Advocacy, and Community Health Programming.

https://web.cvent.com/event/8984af07-5f86-4124-987...


"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) Chemotherapy 1/14/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 1/14/2016 Herceptin (trastuzumab) Dx 2017, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+ Surgery Lumpectomy: Right Surgery Lumpectomy: Right Radiation Therapy Whole-breast: Breast
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Feb 25, 2020 04:45PM - edited Feb 25, 2020 04:47PM by Lumpie

FYI:

Sens. Roy Blunt (R-MO) and Jeanne Shaheen (D-NH) have introduced the Access to Breast Cancer Diagnosis (ABCD) Act.

Under current law, insurers are only required to cover 100 percent of the cost of screening mammograms, pushing no costs onto patients. But if that mammogram reveals an abnormality, patients then must pay out-of-pocket for any additional medically-necessary diagnostic imaging. Those tests can involve an ultrasound, breast MRI or diagnostic mammogram to determine if a biopsy is required.

The legislation would eliminate out-of-pocket costs for medically-necessary diagnostic imaging.

The House bill was introduced by Rep. Debbie Dingell [D-MI-12].

Senate bill is 3216 and the House bill is 2428. You can find the proposed legislation here:

https://www.congress.gov/bill/116th-congress/senat...

and here:

https://www.congress.gov/bill/116th-congress/house...



"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) Chemotherapy 1/14/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 1/14/2016 Herceptin (trastuzumab) Dx 2017, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+ Surgery Lumpectomy: Right Surgery Lumpectomy: Right Radiation Therapy Whole-breast: Breast
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Feb 25, 2020 07:33PM - edited Feb 25, 2020 07:56PM by Lumpie

"Notice of Benefit and Payment Parameters" Could Impact Health Care in Major Ways

Every year, the federal government issues new rules for most individual and small group health plans, including plans sold through healthcare.gov and state insurance marketplaces. Unfortunately, the Trump Administration's proposal this year would weaken health care coverage and access, and might make it harder for individuals and families to get the care they need. Included in the proposal are changes to how individuals are reenrolled in insurance plans and new rules that will make prescription drugs more costly.

You can let the Administration know how you feel about these proposals. Submit your comments to the Federal Register today.

Comments are due by March 2, 2020.

More details on how to comment here:

https://nationalhealthlawprogram.salsalabs.org/nbp...

You can read more about this proposal on Health Law's blog at:

https://healthlaw.org/more-attacks-on-the-aca-the-...


"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) Chemotherapy 1/14/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 1/14/2016 Herceptin (trastuzumab) Dx 2017, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+ Surgery Lumpectomy: Right Surgery Lumpectomy: Right Radiation Therapy Whole-breast: Breast
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Feb 25, 2020 10:12PM 2019whatayear wrote:

thank you so much for putting this thread together. I was just thinking earlier today that I want to start advocating for our needs !

5/6/2019 IDC 2cm, micromet 1/9 nodes, BRCA2+, ER+, PR+, HER- BMX 6/2019, A/C & Taxol 2019, Radiation, BSO - preventative 2/2020, Letrozole 3/1/2020, Started Lynparza for 1 year preventative on 7/18/2021
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Feb 25, 2020 10:40PM Lumpie wrote:

Yeah! Glad to have you on board, 2019whatayear!

"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) Chemotherapy 1/14/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 1/14/2016 Herceptin (trastuzumab) Dx 2017, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+ Surgery Lumpectomy: Right Surgery Lumpectomy: Right Radiation Therapy Whole-breast: Breast
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Feb 25, 2020 10:44PM Lumpie wrote:

Issue brief:

Stalled Federal Efforts to End Surprise Billing — The Role of Private Equity

Though U.S. legislation targeting the problem of surprise medical bills advanced out of key congressional committees in 2019 with support from leaders in both parties, Congress ultimately failed to pass a law to end surprise medical bills.

An estimated 20% of U.S. emergency-department visits, 9% of inpatient admissions, and more than half of ambulance or air-ambulance transports involve an out-of-network provider. {FYI: you rarely have a choice about where the ambulance take you!}

More than half of U.S. states have enacted some protections against surprise medical bills. States have tried a variety of approaches to protect the public. State regulations do not protect people covered by a self-insured employer plans because of the federal Employee Retirement Income Security Act (ERISA).

The key sticking point to enacting federal legislation is determining how much health plans would pay an out-of-network provider in surprise-billing situations. In December 2019, the Senate HELP and House E&C committees reached a compromise regarding how to accomplish this. The Congressional Budget Office estimated that both the Senate HELP and House E&C bills would reduce the federal deficit by more than $20 billion over a decade! Less than a week after the compromise was announced, the House Ways & Means (W&M) committee modified its position and Congress ended the year without passing any legislation on this issue.

The strongest opposition came from a shadowy lobbying effort by private-equity–backed physician-staffing companies that profit from out-of-network billing strategies. One group spent $28 million in ads opposing the legislation. The House W&M leaders who thwarted the compromise appeared to be influenced by the large donations and lobbying pressure.

Congress has resumed efforts to curb surprise medical bills in 2020. Deep-pocketed private equity firms continue to oppose any legislation that cuts into their profits.

Article author: Erin C. Fuse Brown, J.D., M.P.H., Georgia State University College of Law, Atlanta. The article was published on February 19, 2020, at NEJM.org.

https://www.nejm.org/doi/full/10.1056/NEJMp1916443...

{NEJM offers free registration and access to 3 articles per month without a paid subscription. Libraries may offer access.}

{Call and write you legislators! If anyone locates a link to a "one minute activist" tool, please post it. Thanks.}
"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) Chemotherapy 1/14/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 1/14/2016 Herceptin (trastuzumab) Dx 2017, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+ Surgery Lumpectomy: Right Surgery Lumpectomy: Right Radiation Therapy Whole-breast: Breast
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Feb 26, 2020 06:30PM - edited Feb 26, 2020 06:30PM by Karenfizedbo15

Inhere too Lumpie... great idea - well done!

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- Dx 2021, Stage IV, metastasized to bone Chemotherapy 2/4/2021 Xeloda (capecitabine) Hormonal Therapy Femara (letrozole) Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib)
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Feb 26, 2020 08:00PM Lumpie wrote:

Yeah! Welcome Karenfizedbo15!

"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) Chemotherapy 1/14/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 1/14/2016 Herceptin (trastuzumab) Dx 2017, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+ Surgery Lumpectomy: Right Surgery Lumpectomy: Right Radiation Therapy Whole-breast: Breast
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Feb 26, 2020 08:03PM Lumpie wrote:

FYI:

This just in from Cancer Support Community:

Join advocates from across the country on March 4 for the Cancer Support Community's Virtual Advocacy Day!

This is an opportunity to make an impact from home by reaching out to policy makers and elevating the voices of people impacted by cancer. Our goal is to ensure that the patient remains at the center of all policies and regulations related to health care and your participation in advocacy day will help to do just that!

More information about how to take action will be sent out to members of the Grassroots Network the morning of the 4th.

You can go here:

https://www.cancersupportcommunity.org/policy-advo...

and scroll about half way down the page to join their Grassroots Network.

If you are not so much a joiner, I will plan to post info here so you can decide what action(s) to take. It will all be a great surprise.


"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) Chemotherapy 1/14/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 1/14/2016 Herceptin (trastuzumab) Dx 2017, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+ Surgery Lumpectomy: Right Surgery Lumpectomy: Right Radiation Therapy Whole-breast: Breast
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Feb 26, 2020 08:08PM Lumpie wrote:

FYI

The American Cancer Society has a Cancer Action Network that advocates around a variety of cancer-related issues. You can learn more and decide whether to sign up here:

https://www.fightcancer.org/

Lots of good information on this site. You can also find state-specific information.

"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) Chemotherapy 1/14/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 1/14/2016 Herceptin (trastuzumab) Dx 2017, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+ Surgery Lumpectomy: Right Surgery Lumpectomy: Right Radiation Therapy Whole-breast: Breast
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Feb 26, 2020 08:31PM Lumpie wrote:

FYI:

Virginia is voting on whether to allow those eligible for Medicare and under age 65 to access a Medigap policy. The legislation appears to be progressing which would be HUGE for Virginians. Info on the bill here:

https://lis.virginia.gov/cgi-bin/legp604.exe?201+sum+SB250

{You may have to copy and paste that. For some reason the full string will not hyperlink. Sorry.}


"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) Chemotherapy 1/14/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 1/14/2016 Herceptin (trastuzumab) Dx 2017, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+ Surgery Lumpectomy: Right Surgery Lumpectomy: Right Radiation Therapy Whole-breast: Breast
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Feb 26, 2020 08:37PM Lumpie wrote:

One minute activist for Virginians:

Please ask your state legislators to pass SB 172 and finally end balance billing.

This session, the Virginia General Assembly has an opportunity to protect patients from surprise bills for emergency medical services — but your legislator needs to hear from you.

Senator Barbara Favola has sponsored legislation, SB 172, that will protect patients and require insurance companies to pay their fair share.

The Virginia Senate has already passed SB 172 once this year, but we need your help to get it through the House of Delegates and onto the Governor's desk so it can become law. The General Assembly is scheduled to adjourn on March 7, so we are running out of time to pass this critical legislation. That's why it is critical for your legislators to hear from you today! Please e-mail your state legislators and ask them to vote yes on SB 172!

{Note: I have not carefully investigated the specific provisions of this proposed legislation, but given its sponsors, I am inclined to think that it will be an improvement over not having the legislation.}

Virginia Hospital & Healthcare Association Action Center

https://app.muster.com/take-action/L2vGjvd8Pr/


"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) Chemotherapy 1/14/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 1/14/2016 Herceptin (trastuzumab) Dx 2017, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+ Surgery Lumpectomy: Right Surgery Lumpectomy: Right Radiation Therapy Whole-breast: Breast
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Feb 26, 2020 09:24PM - edited Feb 26, 2020 09:27PM by Lumpie

Resource:

Concerned about coverage by insurance of medically necessary compression supplies for lymphedema?

The Lymphedema Treatment Act is an active bill in the current, 116th Congress, which runs from the beginning of 2019 to the end of 2020.

On 12/12/2019 the Lymphedema Treatment Act was passed in the House of Representatives as part of H.R.3, the House Drug Pricing bill.

Senate bill is S.518. Senator Maria Cantwell, D-WA (lead sponsor); Senator Todd Young, R-IN (co-lead). It has 70 co-sponsors! Which means it should be a guaranteed pass if the Senate will just vote on it. Bill details here:

https://www.congress.gov/bill/116th-congress/senat...

Visit the Lymphedema Treatment Act website to learn more and decide whether to get alerts.

https://lymphedematreatmentact.org/


{Thanks to BlueGirlRedState for reminding us about this resource!}

"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) Chemotherapy 1/14/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 1/14/2016 Herceptin (trastuzumab) Dx 2017, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+ Surgery Lumpectomy: Right Surgery Lumpectomy: Right Radiation Therapy Whole-breast: Breast
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Feb 26, 2020 09:51PM - edited Feb 26, 2020 09:51PM by 2019whatayear

Surprise billing blows! I'm all in to bug my legislators to do something !

5/6/2019 IDC 2cm, micromet 1/9 nodes, BRCA2+, ER+, PR+, HER- BMX 6/2019, A/C & Taxol 2019, Radiation, BSO - preventative 2/2020, Letrozole 3/1/2020, Started Lynparza for 1 year preventative on 7/18/2021
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Feb 27, 2020 06:38AM Karenfizedbo15 wrote:

Here’s one from the UK!

https://www.mmm-online.com/home/channel/campaigns/watch-women-with-advanced-breast-cancer-speak-out-about-stigma/

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- Dx 2021, Stage IV, metastasized to bone Chemotherapy 2/4/2021 Xeloda (capecitabine) Hormonal Therapy Femara (letrozole) Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib)
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Feb 27, 2020 04:15PM Lumpie wrote:

That is excellent, Karenfizedbo15! Thanks for sharing!

{Others, it is a brief video about some challenging aspects of living with MBC. < 2 minutes to watch. Very well done - compelling.}

"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) Chemotherapy 1/14/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 1/14/2016 Herceptin (trastuzumab) Dx 2017, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+ Surgery Lumpectomy: Right Surgery Lumpectomy: Right Radiation Therapy Whole-breast: Breast
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Feb 27, 2020 05:32PM Lumpie wrote:

One minute activist:

Restrictive policies are adding unnecessary barriers to nurses who provide home health care – right now, we have a chance to change that.

Advanced Practice RNs serving patients in urban and remote rural areas often struggle to find a physician to sign off on their assessments and care plans, per Medicare policy requirements. This slows down treatments, adds unnecessary costs, and is dangerous for patients' health.

The Home Health Care Planning Improvement Act is a bipartisan, common-sense bill that would correct that problem and empower nurses, but it won't move forward without a strong grassroots response.

Use the link below to contact your legislators in support of timely care for home health patients now!

Nurses play a key role in helping patients in underserved areas, but they face a big obstacle when it comes to providing home health care. Tell your reps to co-sponsor @RNAction legislation that would change that and help patients get the care they need. https://p2a.co/9idbjwI

{BC patients who receive home care may benefit from this legislation. It would make access to care easier for those in under-served areas. This legislation is supported by the American Nurses Association.}

"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) Chemotherapy 1/14/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 1/14/2016 Herceptin (trastuzumab) Dx 2017, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+ Surgery Lumpectomy: Right Surgery Lumpectomy: Right Radiation Therapy Whole-breast: Breast
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Feb 28, 2020 11:10AM Lumpie wrote:

FYI:

If you would like to read about the American Nurses Association position on and concerns about Medicaid block grants, you can find a relevant post here:

... ANA supports the protections included in this proposal for individuals with HIV and behavioral health conditions, it is essential that CMS and the states ensure that no citizen or resident loses access to comprehensive healthcare services...Key areas to address include access choice of provider, healthcare workforce issues, and accountability for healthcare quality.

https://anacapitolbeat.org/2020/02/27/medicaid-hea...


"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) Chemotherapy 1/14/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 1/14/2016 Herceptin (trastuzumab) Dx 2017, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+ Surgery Lumpectomy: Right Surgery Lumpectomy: Right Radiation Therapy Whole-breast: Breast
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Feb 28, 2020 07:22PM Karenfizedbo15 wrote:

Posted this on another board, but thought might be helpful here just for info advocacy wise

I've been asked to participate in a meeting with the UK dept of work and pensions ( DWP) about my experiences dealing with welfare/ benefits when living with a terminal illness. This after I gave a phone interview requested by the charity Marie Curie who are campaigning in partnership with the Motor neurone Disease charity re getting the 6 month rule abolished i.e. unless your specialist writes that you only have 6 months to live, you can't apply for benefits under their special rules. So you have to go through due process which takes months (6 in my case) and be rejected or put in front to a tribunal panel ( pretty stressful) as I was and then still refused....they didn't even have the guts to write that I was stage 4, only that I had breast cancer. Apparently you need to be unable to feed or dress yourself in order to qualify

Thousands of people are dying whilst waiting for decisions from the DWP and MOs are rightly not putting a 'sell by' date on us.

I know you guys in the States struggle with the lack of welfare too and we do have the NHS, but benefits are a real nightmare and most people won't put themselves through it if at all avoidable. I certainly won't go to tribunal to be grilled again. Scottish government are reviewing the 6 month rule, hopefully the UK government will do the same.

Soap box over!

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- Dx 2021, Stage IV, metastasized to bone Chemotherapy 2/4/2021 Xeloda (capecitabine) Hormonal Therapy Femara (letrozole) Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib)
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Feb 28, 2020 09:00PM Lumpie wrote:

Good luck, Karenfizedbo15 & thanks for being an advocate!

As points of reference, I just want to be sure that you know about:

Our "compassionate allowance" under Social Security Disability Insurance in the US. It means that with a MBC diagnosis, we automatically qualify for benefits after @ 6 months. Other disabled people here have to apply and often wait years to get benefits. (I can send you links if that would be helpful.)

Of course, we post a lot about the MBC Access to Care Act which is pending before Congress. It would eliminate the waiting periods both for Social Security Disability Insurance and to get on Medicare (which is @ 30 months for those of us under 65). The disability piece sounds quite similar to what you are talking about.

I don't know how it works in the UK. Do you get disability benefits after 6 months? Do people have alternative sources of benefits (income) in the UK? In the US, we often have disability insurance which will tide-us-over through our workplaces, but sometimes those plans pay a very small % of one's regular pay.

Thanks for sharing information. Good luck with your advocacy.

"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) Chemotherapy 1/14/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 1/14/2016 Herceptin (trastuzumab) Dx 2017, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+ Surgery Lumpectomy: Right Surgery Lumpectomy: Right Radiation Therapy Whole-breast: Breast
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Feb 28, 2020 11:33PM Lumpie wrote:

Complex, home-based actions:

National Breast Cancer Coalition has sent out this advocacy request:

Urge Your Senators to Sign the Department of Defense Breast Cancer Research Program Letter Today!

{It may surprise some to learn that DOD funds a great deal of the critical breast cancer research in the US. This funding is vitally important to moving new treatment options forward.}

** Legislator Deadline: Tuesday, March 10, 2020!! **

Senate side:

"I urge you to show your support for ending breast cancer by signing the letter to the Senate Appropriations Committee Chair Shelby and Ranking Member Durbin calling for $150 million for the DOD peer-reviewed Breast Cancer Research Program for FY2021."

If your Senator(s) agrees to sign the letter, her/his staff should email Jasmin Palomares (Jasmin_Palomares@gillibrand.senate.gov) in Senator Gillibrand's office to make it happen.

Find the FY2021 DOD Breast Cancer Research Program Letter here: http://act.breastcancerdeadline2020.org/site/DocSe...

The list of Senators who signed last year is available here: http://act.breastcancerdeadline2020.org/site/DocSe...

the list of Senators who signed so far this year is available here: http://act.breastcancerdeadline2020.org/site/DocSe...

House side:

"I urge you to show your support for ending breast cancer by signing the letter to the Committee on Appropriations, �Subcommittee on Defense Chair Visclosky and Ranking Member Calvert calling for $150 million for the DOD peer-reviewed Breast Cancer Research Program for FY2021."

Currently 74 Representatives have signed the House letter. http://act.breastcancerdeadline2020.org/site/DocSe...

See the House letter here: http://act.breastcancerdeadline2020.org/site/DocSe...

If your Representative agrees to sign the letter, her/his staff should email one of the following staffers of the letter sponsors to make it happen:

Katrina Martell in Representative Hastings' office - Katrina.Martell@mail.house.gov

Deena Tauster in Representative King's office - Deena.Tauster@mail.house.gov

If your Senator or Rep notifies you that s/he will sign, please relay that information to info@stopbreastcancer.org.

Phone calls make a big difference, so phone your Reps and Senator's offices, too!

Thank you!!

"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) Chemotherapy 1/14/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 1/14/2016 Herceptin (trastuzumab) Dx 2017, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+ Surgery Lumpectomy: Right Surgery Lumpectomy: Right Radiation Therapy Whole-breast: Breast
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Mar 1, 2020 02:15PM Lumpie wrote:

FYI

What are Federal Comments? What Do They Do?

https://healthlaw.org/what-are-federal-comments-wh...

{Brief but information piece about what comments are and why they matter.}

"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) Chemotherapy 1/14/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 1/14/2016 Herceptin (trastuzumab) Dx 2017, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+ Surgery Lumpectomy: Right Surgery Lumpectomy: Right Radiation Therapy Whole-breast: Breast
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Mar 2, 2020 02:41PM Lumpie wrote:

Advocacy opportunity:

Join advocates from across the country on March 4 (2020) for the Cancer Support Community's Virtual Advocacy Day!

Our goal is to ensure that the patient remains at the center of all policies and regulations related to health care and your participation in advocacy day will help to do just that!

Sign up now to become a member of our Grassroots Network, and you will get a message on the morning of March 4 that will instantly allow you to send a message directly to policy makers.

Together, we can show that Community is Stronger than Cancer!

See a video intro here (40 seconds):


Sign up here:

https://www.cancersupportcommunity.org/policy-advo...


"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) Chemotherapy 1/14/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 1/14/2016 Herceptin (trastuzumab) Dx 2017, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+ Surgery Lumpectomy: Right Surgery Lumpectomy: Right Radiation Therapy Whole-breast: Breast
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Mar 3, 2020 01:47PM Lumpie wrote:

The Lymphedema Treatment Act website has shared 5 ways you can make a difference from home this week:

Action #1: Send a postcard to your Senators and Representative - the addresses are provided at these links. Postcards are better than letters or cards, because anything in an envelope is delayed for security screening.

Action #2: Share our Social Media posts from D.C. - look for the hashtag #LTALobbyDays on Facebook, Twitter, and Instagram.

Action #3: Reach out to your Members of Congress on Social Media - sample message provided.

Action #4: Call your Senators and Representative - the phone number, cosponsor status and corresponding call scripts are all provided.

Action #5: Email your Senators and Representative - template letters provided for each, all in one easy form.

If you plan to be in the DC area at any time and would like information about meeting with a congressional office about the Lymphedema Treatment Act please contact them.

https://lymphedematreatmentact.org/lymphedema-lobb...


"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) Chemotherapy 1/14/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 1/14/2016 Herceptin (trastuzumab) Dx 2017, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+ Surgery Lumpectomy: Right Surgery Lumpectomy: Right Radiation Therapy Whole-breast: Breast
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Mar 4, 2020 04:12PM Lumpie wrote:

One minute activist:

Ask the Commissioner of the FDA to Elevate the Importance of Reporting of Patient Experience Data!

pre-templated, editable letter to the Commissioner of the FDA to elevate the importance of reporting of patient experience data.

https://www.cancersupportcommunity.org/take-action...


"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) Chemotherapy 1/14/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 1/14/2016 Herceptin (trastuzumab) Dx 2017, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+ Surgery Lumpectomy: Right Surgery Lumpectomy: Right Radiation Therapy Whole-breast: Breast
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Mar 12, 2020 01:24PM Lumpie wrote:

One minute activist:

Many of us in the cancer community are feeling pretty vulnerable right now. If you would like to "Tell Congress: Pass Paid Sick Days for Coronavirus Prevention" here is a templated/automated letter.

"Public health experts are urging workers to stay home if they're sick in order to curb the spread of COVID-19, the coronavirus. But what about the 32 million people across the country that work but don't have any paid sick days?

It's this simple: paid sick days will help limit the spread of coronavirus outbreaks, but far too many people – many of them in the food service industry – don't have access to any and can't afford to miss work! We all need access to this commonsense protection during times of emergency, like right now, and in non-emergency times when working people and sick kids need to stay home with the flu or common cold without risking their family's financial security.

>>> Tell your U.S. Members of Congress to PASS a national standard for paid sick days, which would protect public health and family economic security – a boost for our economy!"

Sponsor is the organization Moms Rising.

https://action.momsrising.org/sign/HFA_Coronavirus...


"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) Chemotherapy 1/14/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 1/14/2016 Herceptin (trastuzumab) Dx 2017, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+ Surgery Lumpectomy: Right Surgery Lumpectomy: Right Radiation Therapy Whole-breast: Breast
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Mar 12, 2020 02:13PM Lumpie wrote:

{U.S. Residents} Here are links to the U.S. House of Representatives - Families First Coronavirus Response Act and summary

H.R. 6201, FAMILIES FIRST CORONAVIRUS RESPONSE ACT (Summary)

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

Entire bill:

https://rules.house.gov/sites/democrats.rules.hous...

This bill was introduced on 3/11/2020 by Rep. Lowey, Nita M. [D-NY-17]. It currently has 6 co-sponsors and has been referred to 3 committees. You can check the status of this bill here:

https://www.congress.gov/bill/116th-congress/house...

Let your legislator know you thoughts on this proposed legislation. If you don't know how to contact your federal legislators, you can find your Representative here:

https://www.house.gov/representatives/find-your-re...

And your Senators here:

https://www.senate.gov/senators/index.htm


"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) Chemotherapy 1/14/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 1/14/2016 Herceptin (trastuzumab) Dx 2017, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+ Surgery Lumpectomy: Right Surgery Lumpectomy: Right Radiation Therapy Whole-breast: Breast
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Mar 12, 2020 02:33PM Lumpie wrote:

Another one minute activist opportunity related to sick days.

This one sponsored by Time's Up.

"Tell Congress to Pass Paid Sick Leave for All Workers

The coronavirus poses a threat to the health and safety of millions of workers. The Centers for Disease Control and Prevention (CDC) has advised workers to stay home if they are sick or have been exposed to the virus. And yet tens of millions of U.S. workers are not guaranteed any paid sick days.

That's unacceptable. All workers deserve access to paid sick days — now more than ever."

times.upnow.us/2U16Szh


"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) Chemotherapy 1/14/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Targeted Therapy 1/14/2016 Herceptin (trastuzumab) Dx 2017, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+ Surgery Lumpectomy: Right Surgery Lumpectomy: Right Radiation Therapy Whole-breast: Breast

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