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Nov 13, 2016 12:02PM
peggy_j
wrote:
I'm worried for everyone, not only my BC sisters, but everyone who has a pre-existing condition, and even people who are healthy today. Last time I checked, all of us will die someday and for most, this will be preceded by a period of illness. (I guess we can hope to stay healthy until 90 and then get hit by a bus, but...from what I can see, that rarely happens). Apparently Paul Ryan has talked about privatizing Medicare as well--turn it into a voucher system. It's scary. But...it's not over yet! My thought is that we should all work/fight as hard as we can during this next period of changes to the health insurance industry. I don't want to wait until it gets really bad again and then scramble around looking for subsidies.
On Fri I emailed several cancer orgs (including Komen), asking if they could recommend an advocacy group that will likely take up this battle. (I found groups on my own, but wanted to get the recommendations from related orgs) One org recommended National Patient Advocate Foundation www.npaf.org.
Also, the National Comprehensive Cancer Network sent me this long email:
"The National Comprehensive Cancer Network is an alliance of 27 of the United States' leading cancer centers. We provide information about NCCN guidelines, member institutions and their programs in order to facilitate informed decision making for all interested parties. The information that we provide is not an endorsement. The staff at NCCN administrative offices are not physicians and therefore cannot provide medical advice, opinions about diagnosis or treatment. Also, I cannot compare cancer hospitals and their treatment programs. I can only give you information about NCCN member institutions and its programs.
I understand your concerns. Perhaps the following organizations will be able to assist you:
- Patient Advocate Foundation (PAF): The Patient Advocate Foundation is a national nonprofit organization that serves as an active liaison between patients and their insurers, employers and/or creditors to resolve insurance, job discrimination, and/or debt crisis matters related to their diagnosis. It seeks to safeguard patients through effective mediation, assuring access to care, maintenance of employment, and preservation of financial stability. 1-800-532-5274 or (www.patientadvocate.org)
PAF Guidebook of financial Resources by state: http://www.patientadvocate.org/report.php This section will be able to provide information about co-pay assistance and other forms of assistance in your state.
For additional information and support specifically for breast cancer patients, you may contact the following organizations to see if they can assist you with your concerns about the Affordable Care Act:
Susan G. Komen Breast Cancer Foundation: The nation's largest private foundation dedicated solely to breast cancer research, education, screening and treatment. 1-800-I'M AWARE http://ww5.komen.org/
After Breast Cancer Diagnosis (ABCD): ABCD provides free, personalized information and one-to-one support to people affected by breast cancer – patients, families and friends. ABCD complements the work of healthcare providers by providing the following breast cancer support services: One-to-One mentoring breast cancer support service, a Breast Cancer Helpline and Resource List, and MORE: Mentor Outreach and Education program. Breast Cancer Helpline: 800.977.4121 http://www.abcdbreastcancersupport.org/
You can access the websites to some of these organizations from our patient website www.nccn.org. Click on the "Patient Resources" link then "Advocacy and Support groups" and you will find the organizations that I mentioned as well as a few others that may be helpful.
I hope that some of the information that I provided is helpful to you. " (end of email)
Even if these orgs don't currently work on advocacy, I'm going to contact them (and you can too) and urge them to use their influence any way they can. (if millions suddenly lose health insurance, it will impact their programs).
I'm really worried about Trump's "plan" because on the campaign he didn't know what he was talking about. (a week or two before the election he said he'd considered offering Obamacare to his employees, but the plans were terrible. Really? He doesn't know the first thing about how/why the ACA was passed?!?! For people who can't get insurance through their employers?)
Obviously stress isn't our friend, but our concerns can be helpful when they motivate us to take action. Every other developed country in the world offers health insurance or health care for all their residents. We can do this, if we all work together.
Dx
2/2011, IDC, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2-