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Topic: Metastatic Breast Cancer Access to Care Act

Forum: Stage IV/Metastatic Breast Cancer, Open to All To Contribute —

Topics here are started by members with a Stage IV/Metastatic Breast Cancer diagnosis, but open to all members to contribute to discussions. Please note that there is a separate forum, Stage IV/Metastatic Breast Cancer ONLY, where topics are open only to those members.

Posted on: May 17, 2021 11:27PM - edited May 17, 2021 11:31PM by Olma61

Olma61 wrote:

This bill or one similar has floated around Congress since at least 2017 when I joined the club nobody wants to be a member of - and probably before that. Now being re-introduced for the current term.

What will it take to finally get it passed?

Any US residents either with MBC or who want to help advocate, let your Congress people know they need to get this moving.

https://www.floridadaily.com/kathy-castor-wants-to-expand-ssdi-medicare-coverage-for-metastatic-breast-cancer/#

"This legislation would provide immediate access to support and medical care for individuals with metastatic breast cancer who already qualify for Social Security Disability Insurance (SSDI) and are therefore eligible for Medicare. Under current law, these individuals must wait five months for SSDI and 24 months for Medicare benefits to take effect. This bill would waive both waiting periods, potentially improving outcomes for Americans with late-stage cancer,' Castor's office noted.“

10/30/2017 Xgeva for bone mets 5/31/2018 Taxol finished! "If one just keeps on walking, everything will be all right” - Kierkegaard Dx 8/3/2017, IDC, Right, 2cm, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 10/28/2017 Perjeta (pertuzumab) Targeted Therapy 10/28/2017 Herceptin (trastuzumab) Chemotherapy 10/30/2017 Taxol (paclitaxel) Hormonal Therapy 5/14/2018 Arimidex (anastrozole) Radiation Therapy 5/30/2019 External: Bone
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May 18, 2021 04:01AM KBL wrote:

Hi, Olma61. I had seen this. I totally agree, it needs to pass. I will finally be eligible for Medicare in October, but the wait time is really stupid.

Missed diagnosis from 8/2013 - De Novo ILC - No primary found. Mets to full spine, femurs, skull, and stomach. Dx 5/1/2019, ILC, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Targeted Therapy 6/24/2019 Ibrance (palbociclib) Hormonal Therapy 6/24/2019 Femara (letrozole) Hormonal Therapy 9/20/2021 Faslodex (fulvestrant) Chemotherapy 9/26/2021 Xeloda (capecitabine)
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Oct 1, 2021 09:41PM Kikomoon wrote:

Does anyone keep up with this particular topic? I would love to know the status of this bill and what I can do to help advocate. Start writing to congress and anything else? This sure would take some stress / worry off of some of us.

Dx 10/16/2020, IDC, Left, 6cm+, Stage IV, metastasized to brain/bone/liver/lungs, Grade 2, ER-/PR-, HER2+ Chemotherapy Taxol (paclitaxel) Targeted Therapy Herceptin (trastuzumab) Targeted Therapy Perjeta (pertuzumab) Chemotherapy Xeloda (capecitabine) Radiation Therapy External: Brain Targeted Therapy Tukysa (tucatinib) Targeted Therapy Herceptin (trastuzumab)
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Oct 2, 2021 06:56AM illimae wrote:

Looks like it or a similar bill was introduced earlier this year but I don’t know where it stands or how to help move it forward. I’m on board to help in any way I can, perhaps an email to the co sponsors asking for an update?

https://www.congress.gov/bill/117th-congress/senate-bill/1312/all-info?r=57&s=1



Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/20/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Surgery 1/22/2020 Radiation Therapy 2/17/2020 External: Brain Radiation Therapy 7/20/2020 External: Bone Radiation Therapy 12/4/2020 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine)
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Oct 3, 2021 08:53AM Olma61 wrote:

Yes emailing the co- sponsors cannot hurt and contact the US Senators for your state as well as the reps in the House for your own district.

I looked up both the house and Senate bills on govtrack just now -

https://www.govtrack.us/congress/bills/117/hr3183

https://www.govtrack.us/congress/bills/117/s1312

The research outfit that Govtrack uses gives each bill only a 3% chance of passing! Not too encouraging, but we should still advocate, contact Congress and explain the need for this change ESPECIALLY eliminating the two year wait for medical coverage.

The house bill is HR3183 and the Senate bill is S1312, if you email your reps you can reference those bills,

Some of the medical coverage problem has been alleviated by the Medicaid expansion and the ACA subsidies - for a certain number of SSDI recipients only.

There’s also talk of changes to health care in general - such as lowering the Medicare age, extending Medicaid coverage to people who live in the 14 states that didn’t expand the program, etc. But I’m not sure how likely to happen those changes are, either.

I know Komen had done some lobbying for this bill not too long ago (they’re not all bad, lol). I will check around and see if other orgs have this on thei radar, too.




10/30/2017 Xgeva for bone mets 5/31/2018 Taxol finished! "If one just keeps on walking, everything will be all right” - Kierkegaard Dx 8/3/2017, IDC, Right, 2cm, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 10/28/2017 Perjeta (pertuzumab) Targeted Therapy 10/28/2017 Herceptin (trastuzumab) Chemotherapy 10/30/2017 Taxol (paclitaxel) Hormonal Therapy 5/14/2018 Arimidex (anastrozole) Radiation Therapy 5/30/2019 External: Bone
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Oct 4, 2021 08:17PM Kikomoon wrote:

Thanks Olma and Mae for responding. I will dig into this later this week. Scans are tomorrow and having some of that good ol’ scanxiety

Dx 10/16/2020, IDC, Left, 6cm+, Stage IV, metastasized to brain/bone/liver/lungs, Grade 2, ER-/PR-, HER2+ Chemotherapy Taxol (paclitaxel) Targeted Therapy Herceptin (trastuzumab) Targeted Therapy Perjeta (pertuzumab) Chemotherapy Xeloda (capecitabine) Radiation Therapy External: Brain Targeted Therapy Tukysa (tucatinib) Targeted Therapy Herceptin (trastuzumab)
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Oct 4, 2021 08:29PM illimae wrote:

Good luck kikomoon!

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/20/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Surgery 1/22/2020 Radiation Therapy 2/17/2020 External: Brain Radiation Therapy 7/20/2020 External: Bone Radiation Therapy 12/4/2020 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine)
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Oct 9, 2021 05:17PM Kikomoon wrote:

I wrote an email to my representative Joaquin Castro asking the status and requested a reply which I have not received yet. This was a few days ago and was half inquiry/ half rant :/ as I was waiting for scan results….. will try some more methods this week. He was an original cosponsor but not one of the main sponsors.

Dx 10/16/2020, IDC, Left, 6cm+, Stage IV, metastasized to brain/bone/liver/lungs, Grade 2, ER-/PR-, HER2+ Chemotherapy Taxol (paclitaxel) Targeted Therapy Herceptin (trastuzumab) Targeted Therapy Perjeta (pertuzumab) Chemotherapy Xeloda (capecitabine) Radiation Therapy External: Brain Targeted Therapy Tukysa (tucatinib) Targeted Therapy Herceptin (trastuzumab)
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Oct 15, 2021 05:32PM Olma61 wrote:

Metavivor posted about the Act today on Instagram. They suggested visiting their advocacy page to learn more about helping campaign for these bills and other items. Here’s the link to that page -

https://www.metavivor.org/take-action/stage-iv-stampede/

And their Instagram post -


10/30/2017 Xgeva for bone mets 5/31/2018 Taxol finished! "If one just keeps on walking, everything will be all right” - Kierkegaard Dx 8/3/2017, IDC, Right, 2cm, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 10/28/2017 Perjeta (pertuzumab) Targeted Therapy 10/28/2017 Herceptin (trastuzumab) Chemotherapy 10/30/2017 Taxol (paclitaxel) Hormonal Therapy 5/14/2018 Arimidex (anastrozole) Radiation Therapy 5/30/2019 External: Bone

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