As some of you know, I lost my health insurance (via Cobra, nearly $500/mo) at the end of February. Because of my health history, I'm not insurable on the commercial market. I can't afford the state of NC's high risk pool. The premiums, co-pays and deductibles are just WAY too high.
I'm on Social Security Disability, but will have to wait until April, 2010 to be eligible for Medicare. I had to apply for Medicaid in order to continue to get my Arimidex provided by the mfg. I was stunned to learn that, should I "spend down" what's left of my battered 401k and then was able to get Medicaid, I'd be responsible to pay $20,000.00 yearly in deductibles before 'caid would pay a cent! That would only leave me $3,000./yr to live on. Why so high? Because my SSD benefit is more than $982/mo which is considered the cut-off to get Medicaid. Who can live on less than $1000/mo in this country?
I worked as a nurse for 30 yrs, and so get what's considered a decent SSD payment, but that precludes my getting health insurance until after a 29 mo wait past my "date of disability".
The Social Security case worker referred me to the towns' free clinic for help. I was there on Monday, and sat with an intake person who dithered around a bit taking my information. She introduced me to a case manager, who I asked to speak with. I told her about my needs, especially since loosing my health insurance. She told me that I'd be given a card, and could get the drugs that I wasn't getting from the manufactures for $3. I could also have my blood work, x-rays and PT there. I was in heaven! She also said that she'd help me to negotiate a rate with the hospital for the CT scan with contrast that I need. She was reviewing the form that had been filled out when I got there, and left me with another case manager for a few minutes. When she came back to the room, she told me that the intake person had failed to add my mothers' Soc Security income to the application, and therefore, I was $200. over the income allowance, and qualified for NO help. They gave me my prescriptions back, and said goodbye. To say that I was crushed is an understatement. I was so overwhelmed and depressed that I went home and slept for 4 hours straight. I couldn't eat yesterday.
It was suggested by the clinic case manager that I go to the local Interfaith help organization, which I did yesterday. I spent an hour waiting in an empty waiting room, and was given a very disorganized interview by an 86 yr old volunteer, who told me that I didn't qualify for help other than a $20. voucher for one prescription. Period.
I feel cheated and betrayed. I've worked as a nurse for 30 yrs. I'm now being punished for having been "middle class", because I'm eligible for NOTHING, even though I have 2 stage 4 cancers, and no health insurance. This is wrong and scandalous, to my way of thinking.
If you have health insurance, count your blessings. If your health insurance is through an employer, you're a layoff away from loosing it. PLEASE call and/or write to your senators and congress people and let them know in no uncertain terms that America needs and deserves Health Reform, and Universal Health Care for ALL Americans.
Health care is a basic human right! America is the ONLY industrialized country without it's citizens being guaranteed health care. We spend TWICE what any other country spends on health care, and have much worse outcomes, in terms of death rates, child morbidity and mortality, etc. In fact, if you guessed that America has the worlds' best health care system, you're wrong. We rank #37 in the world. It's WRONG....we need to demand better. NONE of us is all right until all of us are.
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Please, contact your reps re: Healthcare reform
- By nancyc
- Posted July 1, 2009 at 11:34 am · 17 replies
- In Financial issues
- Shared with the public
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- By ReneP
- Posted July 1, 2009 at 12:51 pm
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i am so sorry and outraged.
Our system is so frustrating.
i want to make jokes about couch surfing with faithmena or GGC but really its not funny.
we need a change.
- By LucyP
- Posted July 1, 2009 at 3:53 pm
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Please send your story to our President! He needs to "get it" how much we need Single-Payer health care in this country, health care for ALL not just those that qualify for or can "afford" it.
- By nancyc
- Posted July 1, 2009 at 5:48 pm
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I have done so, and to my Congressman, and to my senators, and to the newspapers.
- By susand
- Posted July 2, 2009 at 10:21 am
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Nancy,
We are organizing a small group to go to Washington to talk to representative about just this exact issue--eliminating the 24 month waiting period for women with metastatic breast cancer. I have been told that NONE of the large breast cancer groups ever mentioned this was a problem, so we are taking this on ourselves. We are going in mid July. Please contact me as I think your story could really make a difference.
If anyone else has a similar story, please let me know. We are hoping that we can eliminate this waiting period--as other diseases have already done.
Please let me know.
Susan
- By susand
- Posted July 2, 2009 at 10:22 am
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Nancy,
We are organizing a small group to go to Washington to talk to representative about just this exact issue--eliminating the 24 month waiting period for women with metastatic breast cancer. I have been told that NONE of the large breast cancer groups ever mentioned this was a problem, so we are taking this on ourselves. We are going in mid July. Please contact me as I think your story could really make a difference.
If anyone else has a similar story, please let me know. We are hoping that we can eliminate this waiting period--as other diseases have already done.
Please let me know.
Susan
- By Deanie
- Posted July 2, 2009 at 1:24 pm
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Nancy, I just opened your post. If you have not seen any of my previous rants, please know that I agree with everything you said and am so sorry for all you have been put through because of the &@#% that is our healthcare "system". Even those with health insurance are unknowingly adding to this con game which compounds the problem. I agree with Lucy that single-payer would be the best solution however with the cowardly, self-serving individuals who claim to represent us that will never happen even with evidence of voter support. We just vote, the ones they truly represent, PAY. I had already sent my/your request to my 2 senators and congressional rep through another organization. We all need to be more engaged on this because we all are vulnerable to gouging by the insurance industry and big pharma. Plus the status quo is unsustainable. Employers can't afford it, the unemployed can't afford it, the employed can bearly afford it, it diminishes wages, it diminishes profits, doesn't provide for enough oversight, doesn't provide for enough accountability, is inefficient paper-shuffling, is not nearly as effective as we as Americans should/could have, etc.
The above is the big picture but regarding your problem, perhaps you need to consider shadier options. Can you use another address for your mother? Have you talked to the social worker at your previous employer for inside advice? These are quick thoughts but the point is that your life is more important than some arbitrary rules.
- By nancyc
- Posted July 2, 2009 at 2:15 pm
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I saw my therapist yesterday, and she told me that the only way that I can get what I need currently, is to lie. Had I known how it works, I'd have told them at the Free Clinic that I live alone. I would have gotten all that I need. I could kick myself.
I'm awaiting a call back from the contact person for a program that is run out of a primary physician practice. Initially, she told me that I wouldn't qualify because I'm on SSD, and "You get medicare or medicaid". I told her that I qualify for neither, and she said that she'd look into it and get back to me. And so it goes.
I agree with your assessment of the system 100%, and have been writing and calling whomever I could think to contact from the President on down. So far, only a form letter and no reply to show for it.
- By barb366
- Posted July 2, 2009 at 6:14 pm
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This scenario scares me as much as the cancer. I wish I could lie but I can't. I see liars getting the help that passes me by bc I don't qualify by a hair. My husband and I have considered divorcing bc we'd get more help.
I pay bills I have no idea if I should be paying or fighting. The sick in this country are abused, taken advantage of and treated with no dignity. I was just wondering before i sat down at the computer, are there professionals out there who can help sort through the BS and get people the help they need? Insurance experts or something? After all the cancer tx....I don't have the brain cells to deal with this crap.
- By LaGata
- Posted July 3, 2009 at 3:03 am
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Nancy,
Your story is exactly why I've been beating the drum for Universal Health Care or better known, I'm told, as Single-Payer health care.
On the AARP web site, there are links to Senators and their own ways of contacting them to get stories such as yours. There is also a way to apply to be one of 50 speakers to be chosen to testify before Congress on the 29th and 30th of July on just this issue. If you can't find the information, let me know and I'll go back through my sent mail and find the info for you. (You don't have to be a member of AARP.)
They are also looking for stories from people with insurance that got dropped and/or bankrupted with medical costs.
I am on Medicaid, SS Disabiity and early retirement because I'm such low income, but at least my medical is covered. It's a shame that I did all the "wrong" things in life and I can still not worry about leaving this life without medical care. My late husband just couldn't bring himself to bankrupt us with medical costs and died instead.
Barb, divorcing was also suggested to me by a Social Security worker until she found out that my husband does not work and has no income. If he needs medical care, though, I will be the responsible party. Yeah right, on $1200 dollars a month SS income.
Nancy, what year was the figure "37th" in the world from? The last statistic I found was for 2007 and we were #42 in longevity in the industrialized world. Now, American insurance companies fly patients to India for surgeries as they're better and cheaper than the care they can get in America. Truths like this should be shouted out to everyone.
One more thing, I had a not too pleasant discussion with someone online about health care. They said they don't want government making their health care decisions. I replied that I'm not wild about "for profit " insurance companies making the decisions. It's too easy to drop the insureds diagnosed with serious, long term situations, to increase the "bottom line" for their stock holders.
LaGata aka Laura
- By Deanie
- Posted July 3, 2009 at 12:51 pm
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Guys, this is such a point of contention for me. It infuriates me. Personally, I am so fortunate. I worked for 30 years with a company that provided coverage for employees and reduced premiums for dependents. I resisted other job offers to assure this benefit when my children were young. Had they not provided coverage for retirees and my children were grown, I would not have even considered early retirement.
My personal irritation is the confusion from invoices. Often I get refunds because being aware of how quickly healthcare providers will sue or dunn patients, I pay immediately. What about folks who are not computer savvy to make spreadsheets or don't understand that you can see a doctor yet get bills from a hospital or lab from related services or who can not afford to pay a disputed bill while waiting resolution? These are relatively small concerns compared to Nancy's.
I am disgusted by those who feel that it is not their problem. I saw too many of my friends and relatives suffer due to lack of insurance or being so under-insured they could not afford needed procedures or meds. Not all generics are as effective. I experienced this with one of my blood pressure prescriptions. However, some insurance will only cover generic prices. Most of us are one illness away from insolvency.
- By Lynn06
- Posted July 4, 2009 at 12:12 am
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I don't know if you can include this but here goes:
I am 62 with Stage IV bone mets, was diagnosed April 2006. I have been on chemo again since Nov. 2008.
I finally had to go on short term disability thru my job
only to find out that it only quarantees my job for 60 days and I would then have to begin paying Cobra.
Now, if I applied for SS disability and was lucky enough to be approved the first 60 days I am on Cobra then I would qualify for an additional 11 months coverage. Only those 11 months could be as high as 150% of my premium! and if I weren't approved within the first 60 days the extension for Cobra was out! By my calculations the Cobra payments would be as much as I would get from Disability. Another option was to divorce my husband, have him take all our
(?) assets, and then apply for medicaid, providing ssd did not disquality me for medicaid. I sucked it up and went back to work (my onc was not pleased, but did understand). Now, I go to work, come home, go to bed, get up, go to work, come home, go to bed-------
you get the picture. I can't say much for QOL! I spend most of the weekends napping. I can't believe that I have worked all my life to end up in this position.
I now have to manage to work until 18 months before my 65th birthday before I can retire and hope I can pay the Cobra payments until medicare kicks in.
I am not looking for a handout, just not a kick in the pants. I could see a short waiting period for medicare for Stage IV patients but it is almost like they hope you will die before you need medicare (which you might if you can't get decent medical care). Sorry so long but it is a "button" of mine.
- By nancyc
- Posted July 4, 2009 at 12:38 am
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I hear and share your pain, Lynn. It's just not right.
I was in a similar position when my short term disability ran out. I had had major complications from TRAM recon surgery, and HAD to go back to work. I did the work-home-bed-work-home-bed routine for months.
I've been asked to join a group of other st 4 BC patients going to DC on 7/20 & 21 to meet with legislators with the intention of getting the 29 month waiting period for Medicare to kick in after SSD acceptance w/ st 4 BC waived. You're right. Many women without health insurance have their lives shortened by not getting appropriate care. Some don't live long enough to qualify for Medicare. The BC organizations aren't stand up for us on this issue. When I get to DC, I'll share your stories.
- By Groovygirlcool
- Posted July 4, 2009 at 6:34 am
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Is it a Happy 4th of July in The Land of The Free and The Home of the Brave??
Not for everyone I see! You've certainly got a shocker of a situation on your hands - I'm sure many of those in positions of power just put healthcare reform in the too hard basket.
I'm in a local cancer action network and we campaign on various issues. You have a marvellous cancer action network with the American Cancer Society, with great online campaigning tools in place.
I just had a sticky beak at a Healthcare Reform campaign, angled at equal access to quality cancer care:
https://secure3.convio.net/acscan/site/Advocacy?cmd=display&page=UserAction &id=3213
-where you can make your 'voice heard' electronically.
GO NANCYC - give 'em heaps!! Good on You Sunshine!! Best of Luck in DC!!
As Margaret Mead said:
“Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has.” (– Margaret Mead)
xxGGC
- By ious1Tjed6247
- Posted July 4, 2009 at 1:16 pm
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It's all about timing and getting the attention of those yokals/numbskulls who do put these issues into the "too difficult to navigate" basket. So I encourage those of you who can go - you will be carried on our prayers and in our thoughts as you go forward!
Remember Colleen's (The Back Deck) words...
a post or two back ...."Love one another and help others to rise to the higher levels, simply by pouring out love. Love is infectious and the greatest healing energy." ~Sai Baba
Implore them as you speak with courage (for being there) and love b/c anger is not a motivation to get them to "move". A statement that is effective that I use with 'the powers that be" is -- I ask YOU if this were your child, wife or you were in my shoes .........
This approach seems to tug at the conscious or at least help thaw the dinosaur thinking and has some affect at sinking in. This issue really infuriates me to no end.
I love your banding together to stand for those who otherwise cannot stand for themselves. United we stand departed we fall.
Who said a woman would not make a good choice for president.? If it were Michelle Obama what do you think would happen to legislation. (Yes, I know she'd get the best treatment...but it heightens awareness).
Seriously........please send your story to HER. She responds to these letter's of dire situations and she herself is a woman. Let's get in the news or on the front page too! We need someone powerful behind us.
B/C we need a positive outcome on this I believe we should all write letters and you could take them ALL with you when you go. SEND the message with the messenger.
Must regroup my thoughts so I can be more constructive in my thought process of what to do next.
- By nancyc
- Posted July 4, 2009 at 2:00 pm
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I love your ideas, ious. If anyone wants to send a letter to me to bring to DC, "friend" me, and we can exchange contact information. I've got plenty of room in my suitcase for your letters!
- By ious1Tjed6247
- Posted July 4, 2009 at 3:25 pm
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Nancy,
I am sending a letter to Michelle Obama 1st. Go straight to the top ..... then hope and pray Divine Intervention takes over...... makes it onto her desk and she will have empathy for the issues we face.
Also - I will email you a copy once it is composed....
ious
- By susand
- Posted July 5, 2009 at 11:26 am
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Hi--
I am one of the organizers of the DC trip and I am asking that if any of you want to discuss this effort please contact me. We have been working for months on how to handle this. I would love to see stories about the 24 month waiting period and metastatic breast cancer as that is one of the two main issues we are discussing. The other is getting a national metastatic awareness day. Please let me know if you want to be involved. Colleen does not want to go so please don't send your comments to her.
I really am looking for input as I make final decisions about the trip. Thanks so much for your help.
Susan
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