Actions we can take to protect our access to health care
Like many of you, I'm worried that the ACA will be repealed and I won't be able to buy health insurance.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 www.npaf.org. 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 However, I'm trying to find a plan that will be more likely to stick around, even if the ACA is repealed.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health insurance agent to buy a plan outside the exchange, in the hope that it may stick around even if the ACA is repealed.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people are in shock from the election, but several of my friends didn't realize that I'd be affected if the ACA is repealed.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 conditions—1 in 5 Americans. We need to speak out.
Sisters are doing it for themselves 
Comments
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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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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.
- Cancer Care: A non-profit, voluntary health agency devoted to education, research, and patient services relating to cancer patients and their families. The organization's programs include individual and group counseling for patients and their families, bereavement services, financial assistance, and education programs.1-800-813-HOPE or (www.cancercare.org) Frequently asked Questions http://www.cancercare.org/tagged/financial_assistance or Insurance Infohttp://www.cancercare.org/questions/tagged/insurance
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.
- 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)
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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
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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.
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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.
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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?
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Move to Canada?
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"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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People on this site looking to move to Canada would likely be refused and declared medically inadmissible.
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This Is The Best Way To Make Sure Your Congressperson Actually Listens To You
http://bust.com/living/18577-call-your-congressper...
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.
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This article mentioned an org I've never heard of before, Families USA, "The Voice for Health Care Consumers." http://familiesusa.org/, You can sign up for their email list and stay up to date.
Obamacare's Defenders Are Organizing To Save It From Repeal
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Beesie, Joke. This country just elected a moron. God knows what we'll end up with. The Republicans are going to have a hard time taking away coverage for pre-existing conditions and children up to 26. And that will drive up costs, when they dismantle everything else and everyone else has to absorb the healthcare costs of those people. The mistake Obamacare made was not creating a big enough stick to get healthy young people into the insurance pool. The other thread covering this issue already includes a lot of good info that others have researched. I would say, that one of the key issues is cost-containment, and with an industry dominated government, there will be none. Our healthcare system is profit driven. Obamacare was a response to spiraling healthcare costs in addition to the 10's of millions of uncovered Americans, but it was hamstrung by strong lobbys (hospital, big pharma, device makers, and to a lesser extent insurance). The book "Bitter Pill" by Steven Brill explained all the forces that shaped Obamacare. One of the biggest problems, in my mind, is that there is no transparency in pricing, and thus it is hard to comparison shop for health care. My husband had surgery this summer and we tried to find out what it was going to cost beforehand and could not! The best they could do was tell us it would be 15% of something. And we had to call the doctor, anesthesiologist and hospital, as well as insurance, searching for numbers. We finally got worst case scenario numbers and he went ahead with it, but it was ridiculous that we could not just get a straight answer from one source. Try doing that with multiple surgeons. I think vouchers are going to be a drop in the bucket against health care costs that vary WIDELY. How fair is it to give people the same amount when the price charged for the same procedure can cost 4 times as much for one person than another in the same hospital? I'm totally pessimistic. If Republican legislators didn't care about the uninsured before, why are they going to start now? We are just in for another round of the rich making sure they get richer. Paul Ryan has wanted to cut back on entitlements for awhile now, I don't see him expanding medicare. The only advantage is that government is like an oil tanker, it takes awhile to turn around.
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A response from the Komen Foundation:
"Thank you for contacting the Susan G. Komen® Breast Care Helpline. I understand that you are having concerns related to insurance and the possibility that the Affordable Care Act will be repealed. It is understandable to be concerned and have questions about how this possible change would have an impact on your care and your insurance. It can definitely be scary and confusing to face these concerns and it is smart of you to ask for information and guidance.
Presently, Komen is paying close attention to this issue and will continue to monitor any developments. At this time, it is challenging to determine the future of any program. One way to take action, would be to sign up to become an advocate on Komen's website. Our Advocates act as the voice of over 3 million breast cancer survivors in the U.S. For example, our Policy Advocates ensure that the fight against breast cancer remains a priority among our state and national policymakers. And our Research Advocates make certain that the perspectives of survivors and co-survivors are considered in the decisions that impact our progress toward ending breast cancer forever.
This way you will receive key updates and have the opportunity to act if/when it is needed. You can do that here: http://ww5.komen.org/GetInvolved/kaa.html"
Edited to add more on Komen's Policy Advocacy. (link to current page below). I assume these were their priorities prior to the election. Let's all contact them to make sure they will advocate for us as the GOP considers repealing/changing the ACA. We can't afford to be denied coverage or put into separate-but-unequal (and more $$$) plans.
INSURANCE BARRIERS TO CARE
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The NCCS is our friend
NCCS Reaffirms Dedication to Advocate for America's Cancer Survivors and Their Families
Excerpt:"Of immediate concern is the incoming administration's vow to repeal or replace the Affordable Care Act (ACA). A complete repeal would leave cancer patients and survivors in health insurance limbo and vulnerable to the financial and emotional devastation that cancer causes. Our network knows that while not perfect, the ACA helped expand health care coverage for cancer survivors, and has afforded critical protections related to coverage for young adults, lifetime caps, and pre-existing conditions. Each of these are incredibly important to cancer survivors and their families, and must not be revoked moving forward.
With 30 years of advocacy experience, NCCS is poised and ready to make sure survivors' voices are heard on Capitol Hill. We will work to ensure anyone touched by cancer gets quality care and the health insurance protections that they need and deserve."Actions we can take:--get on their email list--donate! help them to help us -
We can sign this petition. (and ask our families and friends too)
Protect the Gains We Have Made Under The Affordable Care Act and Protect Health Coverage for Millions
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This group is working to save Medicare. We need to band together.
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Peggy, thanks for the links, as well as all the research you've done. I've signed a number of petitions, including those above, and will write as many letters as possible.
I would sincerely hope that some of these organizations, such as Komen, would jump in feet first and make a strong statement on the issue. It's good for us to take action, but sometimes it's the 800-pound gorilla that gets the attention.
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Hopeful, I think you're right. It's important for us to contact our elected reps (including Obama and Trump) **and** we need to lobby the big orgs too, to advocate on our behalf. They've got the weight. I just spoke to a someone at a consumer health advocacy group. He thinks, if we want to do more, we can contact the following types of orgs and ask, "What can we can do about the possible repeal of the ACA? What is going to happen to people like me?" Ask them to advocate for us. As we brainstormed, he suggested contacting the following groups:
--any cancer org
--The National Health Law Program http://www.healthlaw.org/ (you can also get on their email list and/or donate)
--medical associations
--maybe get leads by talking to our local hospital, public health orgs or even our medical team, like our doctors or nurses. He said the nursing organizations seem to be more active in advocating for patients' rights; if we know anyone who is a nurse, maybe ask him/her which nursing org would be good to contact.
He also said that our personal stories are important--they can sway people by putting a face on the problem. In his opinion, the word 'cancer' carries a lot of emotional weight. It scares people. We can claim this power by stepping forward and speaking out and advocating for ourselves, our cancer sisters/brothers and everyone with a pre-existing condition. IMO, I think all patients with pre-existing conditions should have access to adequate health care. But for better or worse, as cancer survivors, we get a bigger megaphone. Let's use it!
Physicians for a National Health Program has a list of tips on how to write an effective Op Ed piece and Letter to the Editor.
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BTW, I also wrote my governor and state secretary of health and human services (and will write my state reps) to get them to shore up our state plans. Lots we can do!
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Many thanks, Peggy, this is all very practical and helpful.
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The NCCS (National Coalition for Cancer Survivorship) wants your ACA story.
https://www.canceradvocacy.org/blog/share-your-aca...
"We at NCCS are carefully monitoring the transition to the Trump administration and what it means for cancer survivors, patients, and families.
One immediate concern is access to health insurance, given promises to repeal the Affordable Care Act (ACA) and uncertainty about what, if anything, would replace it. The ACA has allowed cancer patients and survivors to purchase insurance through the exchanges, and it has afforded protections related to out-of-pocket expenses, lifetime caps, and pre-existing conditions.
We need YOUR help to identify stories of cancer survivors who have benefited from the ACA, so we can share these with policymakers and protect the important provisions of the ACA that help cancer survivors."
NCCS will contact you for permission before sharing any part of your story.
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I just drafted a letter to Paul Ryan. Seems crazy (or a long shot) but the consumer health care advocate I spoke to yesterday said that our personal stories may make a difference. I hear John McCain had skin cancer so I'll plan to write him too.
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Elizabeth Warren has started a petition
Tell Congress: Don't let Big Pharma hijack the 21st Century Cures Act
http://pac.petitions.moveon.org/sign/tell-congress...
Looks like some of the GOP are starting to understand the complexity. We need to write our reps, even (or especially) if they are part of the GOP
Republicans Argue Whether Obamacare Repeal-And-Delay Strategy Will Work
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Here's another place you can share your ACA success story to help this advocacy group lobby Congress on our behalf.
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Thanks so much for sharing your links Peggy. I've signed the moveon petition. I'm writing to my rep & senators (they're all on board anyway). I think Trump's "people" need to see what will happen to them before there is a groundswell? Maybe.
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Talking Points Memo is doing a great job of covering the likely rollback of Medicare and the ACA, as in this article, which includes suggestions for activism (in other words, our elected officials are listening!):
http://talkingpointsmemo.com/edblog/critical-for-u...
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rainy, thanks for posting. Loved the end 'graph
"But again, this is why it is vital both in civic and political terms to find out where everyone stands. Many members of Congress are going to be happy to do this as long as there's safety in numbers, as long as they know they'll be protected, as long as they'll just be one more anonymous vote. If they're deprived of bipartisan cover, many Republicans will refuse to go along. If constituents force them to say where they stand, many will buckle. They will do everything they can to keep their position hidden or impossible to determine until it's clear which way the political winds are blowing."
We need to take action and put pressure on our elected officials, both Demo and GOP. I'm trying to do something every day to push back, mostly sending hardcopy letters. I have a draft, so it's easy to change the salutation and send it to someone else.
There was a great video yesterday of Sen Schumer denouncing Trump's choice of Price; he said the Demos will stand strong to keep Medicare. It doesn't hurt to write and thank these Senate Leaders. Patty Murphy stood next to him in the video to today I wrote a letter to her, thanking her and encouraging her to keep doing this. (and telling her my fears, as a cancer patient aka health insurance pariah). It's not over yet and we need to speak out.
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Just as an aside here, ladies, since access to health care is a political matter, if there are any of you interested in discussing politics and are not aware, there are two separate threads on the forum, one for democrats, one for republicans. There is to be no cross posting or arguing between the two threads so as to keep all discussions civil. If anyone is interested in the democratic thread, send me a pm and I will give you the link.
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Hi Mrs. M (and anyone else wondering about the political element here): I think many of us are concerned about insurance in a way that is specific to our status as BC patients and independent of our political leanings. I'm aware of the two separate threads about politics and lurked on the one in the run-up to the election; I loved all the conversation. I'm hopeful that out of these threads about health insurance we might find ideas for preserving our insurance (I'm self-employed and covered on an ACA plan. I'm desperately worried, to be honest.). I'm very hopeful that we can keep our political opinions off these discussions and concentrate the talk on what we can do to keep ourselves covered. Some of that will doubtless involve contacting our elected officials. Finally, I'm also hopeful that the moderators will let these discussions continue as long as we can keep them civil and focused on what we can do rather than on the underlying politics.
I know, that's a lot to hope for!
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What You Need To Know To Be A Citizen Activist
https://www.good.is/articles/how-to-talk-to-your-c...
Among other things...
"One of the best ways you can get involved is by volunteering and working with other citizen advocates and advocacy groups."
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