Topic: Actions we can take to protect our access to health care

Forum: Employment, Insurance, and Other Financial Issues — Employment, insurance, and financial concerns are common. Meet others here to discuss and for support.

Posted on: Nov 11, 2016 04:38PM

Posted on: Nov 11, 2016 04:38PM

peggy_j wrote:

Like many of you, I'm worried that the ACA will be repealed and I won't be able to buy health insurance. I started this thread where we can share our ideas for action we can take to protect our access to health care. I can't sit back and hope it all works out.

What we need:

--Coverage for all, at the same rate. No discrimination based on gender or health status. (if they create special pools, the rates can go up and up, based on usage).

--No annual or lifetime benefits caps.

Ideas suggested so far:

1) Contact elected officials: the ones you elected and other leaders, like Paul Ryan.

2) Seek out and contact advocacy groups. This one came recommended: National Patient Advocate Foundation Are there others?

3) Protect yourself: If you have options for health insurance today, choose wisely. I've talked to a few experts and some think that we may go back to the pre-ACA policy, that if you're on a plan, you can't get kicked off. Today there is no medical underwriting, so we may have more options. However, I'm trying to find a plan that will be more likely to stick around, even if the ACA is repealed. I don't get subsidies from the exchange, so I am working with the private health insurance agent to buy a plan outside the exchange, in the hope that it may stick around even if the ACA is repealed. This is pure speculation on my part, but I did bounce the idea off a few experts and there's some logic in there.

4) talk to your friends. Maybe people are in shock from the election, but several of my friends didn't realize that I'd be affected if the ACA is repealed. Let people know this is a concern. Maybe later, we can get their help/support.

Other ideas? I'd love to hear them.

We can do this! There are 60 million people in the US with pre-existing conditionsโ€”1 in 5 Americans. We need to speak out.

Sisters are doing it for themselves ;)

Dx 2/2011, IDC, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Nov 12, 2016 01:45AM meow13 wrote:

peggy, I'm worried for our friend BosumBlues. I really hate to see people stressing over this. Health insurance is a necessity I wonder if Susan G Komen or other organizations can help BC patients find or get affordable care. We spend tons on awareness why not put that money into helping provide healthcare without leaving people destituted.

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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.'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

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 (
    PAF Guidebook of financial Resources by state: 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

After Breast Cancer Diagnosis (ABCD): ABCD provides free, personalized information and one-to-one support to people affected by breast cancer โ€“ 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

You can access the websites to some of these organizations from our patient website 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-
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Nov 13, 2016 12:56PM melissadallas wrote:

l happen to think he knows a great deal about Obamacare. How does anyone think an average person (age 55 can pay $12,000 plus for healthcare per year when they don't qualify fo subsidies? I guess I'm supposed to forego retirement savings & eat cat food in retirement

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor. Dx 5/20/2012, LCIS, Stage 0, 0/0 nodes
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Nov 13, 2016 12:59PM reflect wrote:

Here is a link to find your elected officials and their contact information. I believe it makes a difference to let them know what you think, and how particular legislation will affect you.

Hormonal Therapy 9/20/2015 Arimidex (anastrozole) Radiation Therapy 10/1/2015 Breast, Lymph nodes Dx 2/3/2016, DCIS/IDC, Right, 1cm, Stage IIIA, Grade 2, 7/17 nodes, ER+/PR+, HER2- Chemotherapy 2/25/2016 AC + T (Taxol) Surgery 9/13/2016 Lumpectomy: Right; Lymph node removal: Sentinel, Underarm/Axillary
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Nov 13, 2016 03:04PM kicks wrote:

From all I have 'seen/heard/read', BHOCare has harmed a lot more than it has helped. Only the ones who have it paid for by subsidies from the Gov have been helped by it. I do not understand with the large increases and huge deductibles now in place, how can a working family afford health insurance - unless you are low income and getting subsidies (the Gov) to pay for it which is funded by taxes paid. 'It' can't get much worse but can only get better with the reform that will come. At least there is now a hope for most with someone who actually understands economics.

I am not worried about my care (or Hubby's if/when he might need) health care - we are both Veterans and so get our care through our local VA which is small VA but gives fantastic care. I do worry about our Sons and G-daughters though.

I do not know what is the best answer for ALL - but it needs to be for ALL, not certain ones who are funded by the 'Gov' on the backs of others who are fighting to take care of their families themselves.

Dx 8/7/2009, IBC, Stage IIIC, 19/19 nodes, ER+/PR-, HER2- Chemotherapy 8/25/2009 AC Surgery 10/21/2009 Lymph node removal; Lymph node removal (Right); Mastectomy; Mastectomy (Right) Chemotherapy 11/11/2009 Taxol (paclitaxel) Radiation Therapy 2/4/2010 Breast, Lymph nodes
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Nov 13, 2016 03:22PM rainnyc wrote:

Like you, I'm terribly worried about the repeal of the ACA. My DH and I are self-employed and get our insurance on the exchange. We don't qualify for a huge subsidy, but every little bit helps. So I am terribly worried. Even before Election Day, I was worried because the networks of caregivers on the exchange plans were narrowing: when I was first diagnosed, I was very lucky in that my insurer's network included Sloan Kettering. Now there is no ACA plan in NY that includes this hospital. What I am going to do:

Call or send snail mail to my elected officials: both senators, my congressman, and my two elected officials at the state level as well as the governor. (I don't think email gets as much attention.) Tell them I am a cancer patient who needs ongoing health insurance.

I am also going to write to the president of Sloan Kettering, asking him to prioritize this in his relations with the NCCN and whatever contact he has with relevant organizations. Also the Freelancers Union.

What are some other organizations? How do we organize cancer patients? How to we reach out to organizations of other chronic illnesses, i.e. diabetes, parkinsons?

Who among us are writers who can flood the op-ed pages? I am remembering that at the start of George Bush's 2nd term, he made a lot of noise about privatizing Social Security, and there was an enormous backlist. How do we make this happen?

Dx 4/2015, IDC, ER-/PR-, HER2+ Chemotherapy 5/12/2015 Taxol (paclitaxel) Targeted Therapy 5/12/2015 Herceptin (trastuzumab) Surgery 9/22/2015 Mastectomy: Left, Right Radiation Therapy 11/1/2015 Lymph nodes, Chest wall Targeted Therapy Perjeta (pertuzumab)
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Nov 13, 2016 09:08PM Fallleaves wrote:

Move to Canada?

Dx 7/5/2013, IDC, 2cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 8/20/2013 Lumpectomy: Right
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Nov 13, 2016 10:15PM wrote:

"Move to Canada?"

Please don't.

We don't have free healthcare. We have healthcare that Canadian citizens and residents have been paying for through our taxes since the 1960s. An influx of American immigrants who have never paid into the system but who want to benefit from it is not what Canada needs and is a sure way to degrade the health care that Canadians get.

It's not that I'm not sympathetic to the issues faced by those of you in the U.S., I am. But with aging baby boomers, the Canadian healthcare system has enough challenges without having to deal with people who come into the country primarily to get access to "free" healthcare (and honestly, we already have some of that going on).

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Nov 13, 2016 10:38PM serenitystat wrote:

People on this site looking to move to Canada would likely be refused and declared medically inadmissible.

๐ŸŒป ๐Ÿ‡บ๐Ÿ‡ฆ BCO leaked our private data. ๐Ÿคฆ๐Ÿปโ€โ™€๏ธ๐Ÿคท๐Ÿปโ€โ™€๏ธ . . . . . "Do not overlook the little joys!" (Hesse, 1905) ๐ŸถDx.11/2015.IDC.L.IIIC.10/11nodes.++- โ˜•๏ธ12/2015.L.Mast ๐Ÿ›€2/2016.4AC.12Taxol.fasted ๐Ÿ–ผ9/2016.Rads.Nodes.ChestWall.15+4boosts ๐Ÿฅ10/2016.Tamox(2.5y) ๐ŸŒฒ4/2019.Exemestane ๐ŸŽญ12/2019.Ibrance/Xgeva ๐Ÿ•Š
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Nov 14, 2016 05:29PM peggy_j wrote:

This Is The Best Way To Make Sure Your Congressperson Actually Listens To You

Short answer: snail mail is better than email. Calls are best of all. Since so few people bother to contact their reps ever, they put a lot of weight on each person who does contact them.

Dx 2/2011, IDC, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2-

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