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Topic: How Many Stage 4 Girls are getting SS disability..

Forum: Stage IV/Metastatic Breast Cancer ONLY —

Please respect that this forum is for members with stage IV/metastatic breast cancer only. There is a separate forum for caregivers and friends: Caring for Someone with Stage 4 or Mets.

Posted on: Sep 19, 2006 05:22AM

Shepgirl wrote:

Seems like a lot of stage 4 US citizens are getting Social Security Disability Insurance payments. So lets see how many there are! If you were denied, please comment if it was for medical issues. My understanding is denials are more "not paid in enough" issues than medical.

PLEASE TAKE POLL ONCE ONLY!
Dx 12/23/2004, IDC, 2cm, Stage IV, Grade 2, 2/22 nodes, mets, ER+/PR-, HER2-
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May 26, 2016 09:20AM Longtermsurvivor wrote:

Hi Jobur,

I'm in super geek mode this morning and found some resources for you:

earlier post from bco - https://community.breastcancer.org/forum/8/topics/827475?page=3#idx_61

Feb 21, 2015 01:42PM SyrMom wrote:

Don't forget those pt on Part D Medicare - pharmaceuticals aren't allowed to extend co pay cards to those pt at all because Medicare is run by government. A benefit workers have earned and continue to pay to have, yet it's useless for at home chemo meds! (Tier 5)

x

The Pfizer website

http://pfizerrxpathways.com/sites/default/files/attachment/GroupBApplication_Jan2015_0.pdf

x

Needy Meds - another option that seems to include at least some Medicare recipients?

http://www.needymeds.org/drug_list.taf?_function=name&name=Ibrance&gname=palbociclib

x

A story about the topic:

How Big Pharma Uses Charity Programs to Cover for Drug Price Hikes

A billion-dollar system in which charitable giving is profitable.

Benjamin Elgin Robert Langreth

Bloomberg Businessweek Reprints

May 19, 2016

http://www.bloomberg.com/news/articles/2016-05-19/the-real-reason-big-pharma-wants-to-help-pay-for-your-prescription

Please let us know what you find out, we can help each other by sharing invaluable, life-saving information.

warm healing wishes, Stephanie

Grateful to be here. Advanced breast cancer for 25 years, engage holistic approaches. Am dealing with ascites and many mets. Am on hospice.
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May 27, 2016 11:58AM jobur wrote:

Stephanie, Thank you so much for all the links! I really appreciate the time you spent researching and posting. How are you feeling these days? Wishing you peace and many blessings.

The unaimed arrow never misses. (From a Maui rules T shirt) What do you know, and what do you just believe?" Linda Hogan "Power" Surgery 6/30/2014 Lumpectomy: Left Dx 8/1/2014, IDC, Left, 1cm, Stage IV, metastasized to bone, Grade 2, 4/7 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 8/4/2014 Arimidex (anastrozole) Hormonal Therapy 4/30/2015 Faslodex (fulvestrant) Targeted Therapy 8/16/2015 Ibrance (palbociclib) Dx 11/20/2018, IDC, 1cm, Stage IV, metastasized to liver, ER+/PR-, HER2- (FISH) Hormonal Therapy 12/4/2018 Aromasin (exemestane) Targeted Therapy 1/1/2019 Afinitor (everolimus) Hormonal Therapy 7/15/2019 Faslodex (fulvestrant) Targeted Therapy 7/16/2019 Piqray (alpelisib) Targeted Therapy 1/11/2021 Nerlynx Chemotherapy 3/14/2021 Xeloda (capecitabine)
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May 28, 2016 08:20AM Longtermsurvivor wrote:

Hi Jobur,

So grateful those links are useful to you.

Navigating the benefits maze is nearly impossible, but we can help each other to see and anticipate those blind corners and open runs.

Hoping your way forward is easeful and clear!

warm wishes, Stephanie

PS - I'm doing quite well for someone on hospice who's slowly failing. It's not like I thought it would be - no big drama or emotional extremes - still learning lots from being alive and dying too. So grateful! Love and light, Stephanie

Grateful to be here. Advanced breast cancer for 25 years, engage holistic approaches. Am dealing with ascites and many mets. Am on hospice.
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Jun 2, 2016 02:44PM gramen wrote:

this morning I got a call from my health insurance, united healthcare, to let me know I was eligible for ssdi! I told them that I'm working full time...then they were like, o so you know you are elegible for ssdi, let us know in the future if you need more info....interesting call

Dx 7/2014, IDC, Stage IIB, 2/19 nodes, ER-/PR-, HER2+ Dx 3/2016, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+ Targeted Therapy 4/26/2016 Perjeta (pertuzumab) Targeted Therapy 4/26/2016 Herceptin (trastuzumab) Chemotherapy 4/26/2016 Navelbine (vinorelbine) Radiation Therapy Targeted Therapy Herceptin (trastuzumab) Targeted Therapy Perjeta (pertuzumab) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery Mastectomy; Reconstruction (left); Reconstruction (right)
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Jun 2, 2016 04:52PM Longtermsurvivor wrote:

Hi Gramen,

Maybe I'm a little too suspicious, but I wonder if your health insurance company is directing you toward SSDI, so you'll become eligible for Medicare 29 months after your SSDI disability date.

Most health insurance companies drop from primary insurers to secondary insurers when their client becomes Medicare eligible (the client is forced to accept it).

Have you reviewed your policy to see what their policy is?

warm healing wishes, Stephanie

PS, lots more information here:

https://community.breastcancer.org/forum/8/topics/...


Grateful to be here. Advanced breast cancer for 25 years, engage holistic approaches. Am dealing with ascites and many mets. Am on hospice.
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Jun 2, 2016 05:51PM - edited Jun 2, 2016 05:51PM by gramen

Thank you Stephanie!

Im suspicious too. Going to ask my boss for policy info to review. Ugh. Is hard working for a small company with no human resources dept., I have to ask the company owner and I prefer to tell him only what's necessary...my experience wasn't good with my initial/early stage diagnosis. I don't want to imagine how things will be if they find out details now.

Dx 7/2014, IDC, Stage IIB, 2/19 nodes, ER-/PR-, HER2+ Dx 3/2016, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+ Targeted Therapy 4/26/2016 Perjeta (pertuzumab) Targeted Therapy 4/26/2016 Herceptin (trastuzumab) Chemotherapy 4/26/2016 Navelbine (vinorelbine) Radiation Therapy Targeted Therapy Herceptin (trastuzumab) Targeted Therapy Perjeta (pertuzumab) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery Mastectomy; Reconstruction (left); Reconstruction (right)
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Jun 2, 2016 07:44PM pwilmarth wrote:

Oh there's no doubt that United Healthcare is fishing for potential clients. I've seen their marketing people do this with other programs offered by United Healthcare. Here's the real game they are playing:

You become disabled, then become eligible for Medicare in two years. Once you are eligible for Medicare, you will be offered the opportunity to enroll in a Medicare Replacement plan, and United Healthcare is a big provider of Medicare Replacement plans.

I have my own opinions about the replacement plans that United offers, but it won't be as good as a straight Medicare plan with a secondary insurance provider (such as Medicaid).

Dx 12/1/2014, Left, 6cm+, Stage IV, ER-/PR-, HER2+ (FISH) Surgery 1/11/2015 Mastectomy: Left Chemotherapy 2/23/2015 Taxotere (docetaxel) Targeted Therapy 2/23/2015 Perjeta (pertuzumab) Targeted Therapy 2/23/2015 Herceptin (trastuzumab) Radiation Therapy 7/21/2015 3DCRT: Breast, Lymph nodes Radiation Therapy 10/21/2016 External: Brain Targeted Therapy 11/24/2016 Kadcyla (T-DM1, ado-trastuzumab)
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Jun 2, 2016 08:44PM artistatheart wrote:

Boy oh boy! Such a complicated subject. I want to be ready to go on Disability when needed but am terrified of making a wrong step! I want to manage our finances well enough to not leave my spouse destitute either! I have a whole lot of homework to do. Thanks for all the info ladies. Stephanie, It does my heart well to know you consider yourself doing quite well and are not experiencing emotional extremes, as there is nothing worse to me....

Dx 7/22/2015, ILC, Left, 4cm, Stage IV, Grade 3, ER+/PR+, HER2- Hormonal Therapy 8/10/2015 Femara (letrozole) Targeted Therapy 8/25/2015 Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant)
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Jun 2, 2016 09:06PM pwilmarth wrote:

Artist, don't worry about your spouse. Medicaid offers spousal protection and any assets that you have as a couple are protected (i.e. savings, home, car). The idea is not to leave your spouse financially destitute.

Dx 12/1/2014, Left, 6cm+, Stage IV, ER-/PR-, HER2+ (FISH) Surgery 1/11/2015 Mastectomy: Left Chemotherapy 2/23/2015 Taxotere (docetaxel) Targeted Therapy 2/23/2015 Perjeta (pertuzumab) Targeted Therapy 2/23/2015 Herceptin (trastuzumab) Radiation Therapy 7/21/2015 3DCRT: Breast, Lymph nodes Radiation Therapy 10/21/2016 External: Brain Targeted Therapy 11/24/2016 Kadcyla (T-DM1, ado-trastuzumab)
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Jun 2, 2016 09:27PM artistatheart wrote:

Thank you so much pwilmarth! That makes me feel a LOT better tonight! Like I said, I have a lot of homework to do. But think I am going to be ready to stop working in the next 6 months or so.....

Dx 7/22/2015, ILC, Left, 4cm, Stage IV, Grade 3, ER+/PR+, HER2- Hormonal Therapy 8/10/2015 Femara (letrozole) Targeted Therapy 8/25/2015 Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant)
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Jun 7, 2016 01:24AM - edited Jun 7, 2016 01:47AM by cb123

Hi All,

I'm finally breaking down and going to apply for SSDI tomorrow. My 5 month waiting period since onset is over. I'm not stage IV so I expect this will take several months and I'm just checking this post for any last minute thoughts I might have missed.

I'm encouraged by the monthly allowance of $720. My benefit is not very much and $720 will help. I won't be working really, just selling things on Etsy.

I would like to clear something up that I keep seeing here. SSI is not a "low income" thing although total household income is used in determining the benefit amount. SSI is for people who are disabled and who have not earned enough "work credits" during their lifetime to qualify for SSDI. My daughter was disabled in her early 20s. She had only gone to college and worked at the mall. She had not earned the minimum work credits to qualify for SSDI. Many women who are homemakers and didn't work outside of the home, fall into the SSI category. They make you apply for both at the same time here at my local SS office, just in case you don't qualify for one and may qualify for the other. Here are some links:

SSI vs SSDI

Social Security Credits

Also, I would like to encourage all of you to keep an eye on your Social Security Statement. You can go to the website and pull it up. It will give you detailed personal information as to How much will I get if...?

Social Security Statement

Lastly, and this really sucks, my SSDI is greater than my early retirement benefit @ 62. I'll be 59 this year. When my retirement date comes along, will I earn the lesser retirement amount instead of the higher disability amount? Are they going to force the early retirement benefit? If I can (technically) retire at 65 it's almost the same as the disability. I'll get the answer from SS tomorrow. This is pretty much the only question I have left for them.

I'm not looking forward to this but I can't do my old job and I'm having a hard time finding something new that I can do with my good right arm being so tender and in pain. (It's a missing lymph nodes thing.)

The thing that's going to qualify me medically via cancer, because I'm not stage IV, is that I had 20 positive axillary nodes. 10 is the cutoff. (see below or click this link: 13.10 is Breast Cancer ). My PCP is filling out the forms to also qualify me via Depression.

Thank you all so much for sharing your experiences and knowledge. It's been a great help.

Heart

cb


13.10 Breast (except sarcoma—13.04) (See 13.00K4.)

A. Locally advanced cancer (inflammatory carcinoma, cancer of any size with direct extension to the chest wall or skin, or cancer of any size with metastases to the ipsilateral internal mammary nodes).

B. Carcinoma with metastases to the supraclavicular or infraclavicular nodes, to 10 or more axillary nodes, or with distant metastases.

OR

C. Recurrent carcinoma, except local recurrence that remits with anticancer therapy.

OR

D. Small-cell (oat cell) carcinoma.

OR

E. With secondary lymphedema that is caused by anticancer therapy and treated by surgery to salvage or restore the functioning of an upper extremity. (See 13.00K4b.) Consider under a disability until at least 12 months from the date of the surgery that treated the secondary lymphedema. Thereafter, evaluate any residual impairment(s) under the criteria for the affected body system.

~I have lived a wonderful life and truly haven't missed a thing.~ BRCA1 Deleterious Mutation E1250X (3867G>T) Dx 3/15/2014, IDC, Right, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 8/7/2014 Lumpectomy: Right; Lymph node removal: Underarm/Axillary Dx 1/15/2016, IDC, Right, 1cm, Stage IIIC, Grade 3, 20/27 nodes, ER+/PR+, HER2- Surgery 3/14/2016 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Targeted Therapy Hormonal Therapy Arimidex (anastrozole)
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Jun 7, 2016 07:20AM Lauriesh wrote:

I disagree that ssi is not a low income thing. The link that you gave says " ssi is for low income individuals". Most ( if not all)!stage 4 moms who were stay at home moms will not qualify for ssi.


3/2005 stage 2, 7/2010- liver mets. Er/pr- her2+
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Jun 7, 2016 09:02AM Longtermsurvivor wrote:

Also, SSI earned income restrictions seem to be lower than SSDI income restrictions, though it's hard to puzzle out from the Social Security Administration website. And with SSI there is a $2000 asset limit for individuals and $3000 for couples. There is no asset limit with SSDI.

https://www.ssa.gov/planners/disability/dqualify.h...

This might add to the confusion:

http://www.cbpp.org/research/introduction-to-the-s...

Oh yes, if you don't have a condition on the compassionate allowances list, you're likely to have to apply with multiple conditions that actually prevent your ability to work. Your disability must be expected to last for at least a year.

http://www.disabilitysecrets.com/dnewsblog/2008/09...

https://www.ssa.gov/compassionateallowances/

It's really worth looking into before you commit yourself to any course of action. And don't just trust us as your advisors, but please consult with a disability attorney. I believe the initial consults are free. If the attorney thinks you have a good case and can win, they may represent you and take a portion of your award amount.

http://www.disabilitysecrets.com/question16.html

Or you might choose to gather your records and your doctor's recommendations and go ahead and file on your own.

Please take the time to plan ahead for your own welfare...and that of your heirs.

healing regards, Stephanie

Grateful to be here. Advanced breast cancer for 25 years, engage holistic approaches. Am dealing with ascites and many mets. Am on hospice.
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Jun 7, 2016 09:37AM - edited Jun 7, 2016 10:08AM by cb123

Social Security is a retirement program for people who worked and paid into the SS system.

SSDI is a disability insurance program for people who worked (enough to qualify) and paid into the SS system.

SSI is a charitable disability insurance program for people who didn't pay enough into the SS system to qualify for SSDI .

For SSI, income does not qualify or disqualify you - it only limits your award amount. Your award amount could be zero dollars per month, based on income, though you're otherwise qualified. If your income lowers, you should apply again.

SS retirement & SSDI are not a charity or a gift, it's an earned award for paying into the SS programs.

SSI is a charitable gift. We (Americans) cannot let disabled people who may have been unable to contribute to the system, go on with no income. SSI charitably gives to those disabled people who need an income and didn't contribute enough to qualify under SSDI. Those who already have a certain income, don't qualify for this gift.

If it were a low income thing, you wouldn't have to be disabled to get it, just poor. It's a charitable disability insurance program with income limits.

I'm out of here,

cb

~I have lived a wonderful life and truly haven't missed a thing.~ BRCA1 Deleterious Mutation E1250X (3867G>T) Dx 3/15/2014, IDC, Right, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 8/7/2014 Lumpectomy: Right; Lymph node removal: Underarm/Axillary Dx 1/15/2016, IDC, Right, 1cm, Stage IIIC, Grade 3, 20/27 nodes, ER+/PR+, HER2- Surgery 3/14/2016 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Targeted Therapy Hormonal Therapy Arimidex (anastrozole)
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Jun 9, 2016 04:45AM - edited Jun 9, 2016 05:42AM by pwilmarth

cb123 - I was 60 and 1/2 when I was diagnosed but didn't apply for disability until I was one month shy of 61. And I'm dealing with the same issue that you are thinking about.

SSDI will convert to normal Social Security benefits at age 66 with no change in benefits. That's very important. You're benefit payment will remain unchanged and you will qualify for Medicare years before your 65th birthday. Under normal Social Security, I would receive about $75/month more at age 66 if I held out that long. But I receive $500/month more at age 61 under SSDI than I would receive at age 62 under normal Social Security retirement benefits.

Potentially there is the chance that you might have a review before your 66th birthday, but as a practical matter, it's unlikely that you will be disqualified from your SSDI benefit. There's an acceptance that once you reach the age of 60, it's unlikely you will return to work full-time and your disability is permanent. The following is a brief review of the standards the Social Security uses to determine when you are due for a review.

Disability Review

This should reassure you that you won't even be considered for a review for at least three years - it will probably be closer to seven years, and at age 59, you will then be 66. Which means your benefits automatically convert.

As for me, I still have peripheral neuropathy which limits my ability to stand for prolonged periods of time, and I notice it quite a bit when I use a keyboard, mouse or pen. My balance has never recovered. I have some lymphedema as a result of radiation therapy. So I don't think there would be any difficulty in passing a review. But it may be years before such a review will be required and I will be close enough to 66 that it won't matter. I will be 62 next month.

Social Security has something called the "exhausted worker" benefit, and for most of us over the age of 60, that word applies. I also wouldn't fret too much about it because there are vocational rehab programs and trial at work programs that can be put to your benefit if a question arises.

Lawmakers recognize that there's a difference between being 60 and disabled and being 35 and disabled. I'm not terribly worried about it.


Dx 12/1/2014, Left, 6cm+, Stage IV, ER-/PR-, HER2+ (FISH) Surgery 1/11/2015 Mastectomy: Left Chemotherapy 2/23/2015 Taxotere (docetaxel) Targeted Therapy 2/23/2015 Perjeta (pertuzumab) Targeted Therapy 2/23/2015 Herceptin (trastuzumab) Radiation Therapy 7/21/2015 3DCRT: Breast, Lymph nodes Radiation Therapy 10/21/2016 External: Brain Targeted Therapy 11/24/2016 Kadcyla (T-DM1, ado-trastuzumab)
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Jun 9, 2016 06:41AM - edited Jun 9, 2016 06:42AM by pwilmarth

Longterm - I have serious doubts about the use of disability attorneys or anyone who claims to work with clients on processes like Medicaid approval.

First, an attorney may take your case and do nothing to further the process along. They may fail to file appropriate paperwork, and they may even delay the process due to their own negligence. I have watched very sad cases in long-term care where a family hires an attorney and they do nothing! Meanwhile, the client's bills aren't getting paid and the facility (meaning Business Office Manager) is left with having to issue eviction notices for failure to pay for treatment and services.

I have listened to skilled business office managers try to work with these clients to help them through the process and have heard the conversations they have with these incompetent attorneys.

If I were seeking advice on this issue, I would talk to someone who does billing or manages the business office of any healthcare entity. They understand the ins and outs of this process much better than anyone on the planet.

Dx 12/1/2014, Left, 6cm+, Stage IV, ER-/PR-, HER2+ (FISH) Surgery 1/11/2015 Mastectomy: Left Chemotherapy 2/23/2015 Taxotere (docetaxel) Targeted Therapy 2/23/2015 Perjeta (pertuzumab) Targeted Therapy 2/23/2015 Herceptin (trastuzumab) Radiation Therapy 7/21/2015 3DCRT: Breast, Lymph nodes Radiation Therapy 10/21/2016 External: Brain Targeted Therapy 11/24/2016 Kadcyla (T-DM1, ado-trastuzumab)
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Jun 9, 2016 08:11AM Longtermsurvivor wrote:

HI PWilmarth,

Thanks for your reply...actually I meant to consult with an attorney to find out about the likelihood of being approved...not to hire them to get approval. Us MBCers are in the Compassionate Allowance group - so there's no reason we should need an attorney consult unless we have a particularly complicated situation.

If the situation is more complicated - being an earlier stage of cancer and having multiple conditions leading to disability, the claims are more difficult to "prove" to Social Security. Applicants really need to focus on their disability and inability to work at substantial gainful activity - https://www.ssa.gov/oact/cola/sga.html

Actually, after I wrote what I did (and I'm happy to rescind it all), I remembered a great resource that helped me with my SSDI application in 1996 when I was in my late 30s - the local independent living center.* At that time there was no Compassionate Allowance list, the burden of proof was on the applicant and the first time applicant denial rate ran over 50%. Almost everyone had to appeal and often waited many months or years for approval. The center rep talked me through a plan to get my medical records and my doctors on board, then to walk the application and supporting documents to SS myself. In my application I focused not only on my disability, but my inability to work at any job. Because I was young, but terminally ill, I really didn't want to be forced into the rehab track.

Each of us walks a unique path in life, including life with MBC. We can reflect back on where we've been, but then each person must find their own path in changing conditions. I wish everyone well in finding their own way through this complex system!

I am so very thankful the Compassionate Allowance list was created. It has eased the suffering of many.

Healing regards, Stephanie

* USA nationwide directory of centers for independent living http://www.ilru.org/projects/cil-net/cil-center-an...


Grateful to be here. Advanced breast cancer for 25 years, engage holistic approaches. Am dealing with ascites and many mets. Am on hospice.
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Jun 9, 2016 09:16AM pwilmarth wrote:

Social Security Disability

I think the above link is a good general discussion about SSI and SSDI without being too complicated.

I thought about hiring an attorney, but after researching this topic, I decided that the only time you should consider hiring or consulting with an attorney is if your claim is denied. For the majority of us, that won't be an issue. Our doctors and their support staff are very used to filling out the disability paperwork so that it will be approved.

If your claim is denied, there will be an appeals process and this is where an expert may be of benefit.

Because Metastatic Breast Cancer is on the compassionate list, most of us will have little problems getting approved.

There are layers to the disability process and some people will require much more proof that they are disabled then we do.

Dx 12/1/2014, Left, 6cm+, Stage IV, ER-/PR-, HER2+ (FISH) Surgery 1/11/2015 Mastectomy: Left Chemotherapy 2/23/2015 Taxotere (docetaxel) Targeted Therapy 2/23/2015 Perjeta (pertuzumab) Targeted Therapy 2/23/2015 Herceptin (trastuzumab) Radiation Therapy 7/21/2015 3DCRT: Breast, Lymph nodes Radiation Therapy 10/21/2016 External: Brain Targeted Therapy 11/24/2016 Kadcyla (T-DM1, ado-trastuzumab)
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Jun 9, 2016 09:36AM Longtermsurvivor wrote:

Hi Pwilmarth,

Yes, yes, yes.

Thank you. I appreciate your willingness to sort through this together.

That link is very helpful. :)

The only thing that I've heard/read that's different is that it's possible to backdate the disability date from the SS application date.

Oh, and if you're getting COBRA health insurance through an employer, be sure to request the disability extension to 29 months within 60 days of applying for COBRA.

Q8: How is COBRA affected if I am disabled? https://www.cms.gov/CCIIO/Programs-and-Initiatives...

warm wishes, Stephanie

Grateful to be here. Advanced breast cancer for 25 years, engage holistic approaches. Am dealing with ascites and many mets. Am on hospice.
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Jun 9, 2016 10:15AM pwilmarth wrote:

The COBRA benefit is only useful if you have the financial ability to pay over $700/month to extend your coverage. Most people simply aren't going to be able to do that.

As soon as I was approved for disability and my STD benefits were exhausted, I was approved for Medicaid. I have just 13 months to wait and I will be eligible for Medicare. There isn't any better insurance than this. Some healthcare providers may balk at Medicaid as the secondary, but the good providers (the ones who are nonprofit) will be quite happy with those two coverages.

Dx 12/1/2014, Left, 6cm+, Stage IV, ER-/PR-, HER2+ (FISH) Surgery 1/11/2015 Mastectomy: Left Chemotherapy 2/23/2015 Taxotere (docetaxel) Targeted Therapy 2/23/2015 Perjeta (pertuzumab) Targeted Therapy 2/23/2015 Herceptin (trastuzumab) Radiation Therapy 7/21/2015 3DCRT: Breast, Lymph nodes Radiation Therapy 10/21/2016 External: Brain Targeted Therapy 11/24/2016 Kadcyla (T-DM1, ado-trastuzumab)
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Jun 9, 2016 12:50PM Longtermsurvivor wrote:

Yes, I'm delighted with the ACA changes that removed the Medicaid asset limit, which used to be $2000 for individuals, $3000 for families.

When I became disabled, I had no access to Medicaid, because I had retirement savings. So, there were months of paying for COBRA, extended COBRA, a state mandated medical insurance plan, then Medicare monthly premiums, copays and deductibles.

Fortunately (tongue-in-cheek), cancer care is costly and I blew through my savings in about five years. Oh, because I was under 50, there were no Medicare supplemental plans available.

I'm pleased that others needn't lose their savings in their efforts to live.

PWilmarth, does Medicaid continue after Medicare kicks in? Medicare primary with Medicaid secondary covers costly cancer care (alliteration attack, sorry).

Also, what do you know about states that opted out of the ACA Medicaid expansion?

http://kff.org/health-reform/state-indicator/state...

warm wishes, Stephanie

Grateful to be here. Advanced breast cancer for 25 years, engage holistic approaches. Am dealing with ascites and many mets. Am on hospice.
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Jun 9, 2016 05:16PM Longtermsurvivor wrote:

Basic Medicaid information from the federal government:

https://www.medicaid.gov/medicaid-chip-program-inf...

I also wonder if Estate Recovery Programs are fully explained to Medicaid beneficiaries:

https://www.medicaid.gov/medicaid-chip-program-inf...


Grateful to be here. Advanced breast cancer for 25 years, engage holistic approaches. Am dealing with ascites and many mets. Am on hospice.
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Jun 9, 2016 05:35PM pwilmarth wrote:

You always have to check with your state's healthcare financing policy department regarding the impact of opting out.

As far as Medicare and Medicaid, the answer is yes, you can have both. If you review the CMS website, you will find much information on the issue of "Dual Coverage" which means Medicare and Medicaid. They operate a bit differently but the expectation is that a healthcare provider bills in a specific order. It's

Private Insurance, Workmen's Comp, or Auto Insurance provider

Medicare

Medicaid.

If you have standard Medicare, then your healthcare provider would bill Medicare and then bill Medicaid for anything not covered by Medicare. For example, your deductible. Standard Medicare covers 80% of most inpatient stays after the first 20 days. If you don't have a secondary, then you are responsible for the 20%, But, if you have Medicaid, then you have a secondary.

Medicare and Medicaid work a bit differently in terms of how much they pay for treatments. If you're a healthcare provider, Medicare is going to be financially more beneficial in terms of how much you can bill. But that's an issue for the provider and not one that a patient needs to think about.

You are so correct about cancer treatment being so expensive - it is. Which is why the premiums for COBRA benefits are so high. And why many employers no longer offer healthcare coverage for dependents as part of their employee benefit package.

What I hear from you is that you tried to do the "right" thing financially by building a nest egg for retirement and then cancer burst onto the scene and changed your plans. It's hard for someone under the age of 50 to understand that there will be something - a disease or an accident - that will alter the course of your future. It might not happen until you are in your late 60s, it might start to happen in your 50s. Or it might happen much younger than 50. And then you have to adjust your thinking to the realities of the world. That dream of a peaceful, financially secure retirement is gone.

What I've learned in the past year is that it is incredibly freeing spiritually to not have to think about money or where my next paycheck is coming from. Or working so hard to strive to build a nest egg for a future that I may never see. I can turn my thinking towards altruism and engage in the types of things that enhance my humanity.

We only care so much about money because our culture tells us to. But the things that make life meaningful are not found in money.

Dx 12/1/2014, Left, 6cm+, Stage IV, ER-/PR-, HER2+ (FISH) Surgery 1/11/2015 Mastectomy: Left Chemotherapy 2/23/2015 Taxotere (docetaxel) Targeted Therapy 2/23/2015 Perjeta (pertuzumab) Targeted Therapy 2/23/2015 Herceptin (trastuzumab) Radiation Therapy 7/21/2015 3DCRT: Breast, Lymph nodes Radiation Therapy 10/21/2016 External: Brain Targeted Therapy 11/24/2016 Kadcyla (T-DM1, ado-trastuzumab)
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Jun 9, 2016 05:46PM pwilmarth wrote:

The answer about state recovery of assets for Medicaid is NOT explained to most recipients. But that shouldn't be the focus of the person who is in need of financial assistance to meet their medical bills. That's a fight for the attorneys to wage.

The only thing that the PATIENT needs to hear is that their needs will be met. That they shouldn't delay treatment or forgo life-preserving or enhancing care because of the financial costs of care.

Most of us who work in healthcare come to understand this one basic principal: You can't take it with you. So enjoy life while you can. And don't get so caught up in the acquisition of things. Because you can't take it with you. Spend your time on this planet engaged in what we call The Simple Pleasures. Family. Friends. Relationships. A good sandwich or burger. Or steak. Enjoying a cup of coffee on your deck. Or a walk in the park with your dog. Watching the birds.

These are the things that enhance the quality of your life.

Dx 12/1/2014, Left, 6cm+, Stage IV, ER-/PR-, HER2+ (FISH) Surgery 1/11/2015 Mastectomy: Left Chemotherapy 2/23/2015 Taxotere (docetaxel) Targeted Therapy 2/23/2015 Perjeta (pertuzumab) Targeted Therapy 2/23/2015 Herceptin (trastuzumab) Radiation Therapy 7/21/2015 3DCRT: Breast, Lymph nodes Radiation Therapy 10/21/2016 External: Brain Targeted Therapy 11/24/2016 Kadcyla (T-DM1, ado-trastuzumab)
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Jun 9, 2016 06:29PM - edited Jun 9, 2016 06:30PM by pwilmarth

One last thing on this topic.

This past Sunday, they did a show on debt recovery on Last Week With John Oliver. It was very funny, but speaks to the reality of money in the healthcare system. A woman was in the hospital's ICU for breathing problems. She accumulated $86,000 in medical bills during this stay. The person from the hospital's billing department had to regretfully inform her that her insurance provider would not cover the cost of her care and she would be responsible for the bill.

Which led to a story about how debt recovery works for people who can't pay their. bills.

What John Oliver did was start a debt recovery business. They bought old debt that the debt collectors were unable to collect. All of it was financial debt related to unpaid medical bills. It amounted to $15 million dollars worth of old unrecoverable debt. It cost the show's producers pennies to purchase this debt.

The idea behind debt recovery businesses is that they will harass the person until they pay some of the money back. Even if by law, the person is no longer responsible for the debt (statute of limitations has expired).

What John Oliver proposed for his company was to practice Debt Forgiveness. And so on Sunday, over $15 million dollars of debt forgiveness was applied to all of these old medical bills.

Ultimately, all of us need to stop thinking about who is going to pay the bill. There's a system out there. But if you're the person who needs the aid of a physician or nurse, then don't delay care because of the costs.

Dx 12/1/2014, Left, 6cm+, Stage IV, ER-/PR-, HER2+ (FISH) Surgery 1/11/2015 Mastectomy: Left Chemotherapy 2/23/2015 Taxotere (docetaxel) Targeted Therapy 2/23/2015 Perjeta (pertuzumab) Targeted Therapy 2/23/2015 Herceptin (trastuzumab) Radiation Therapy 7/21/2015 3DCRT: Breast, Lymph nodes Radiation Therapy 10/21/2016 External: Brain Targeted Therapy 11/24/2016 Kadcyla (T-DM1, ado-trastuzumab)
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Jun 9, 2016 08:23PM - edited Jun 9, 2016 08:41PM by cb123

Hi pwilmarth & Stephanie,

My journey through SSDI began months ago. I called and spoke with at least half a dozen attorneys, gaining info from each one. I was unimpressed with them all and didn't find one I would trust to handle this for me. They all wanted me to gather info for them. If I was gathering the info, what were they getting paid for? Faxing it to SS? FYI: By law they are allowed to charge only 25%.

I agree that walking into the SS office with your documents (ducks) in a row is the best way to go - if you can. (Some people with disabilities are unable.) I walked in on purpose.

I have a couple of links to make it easy. Of course everyone's seen this one on the online application page. I had to order a copy of my birth cert before I applied because I didn't want to trickle in my documents. I wanted everything in front of them so they only had to look once and not set my file aside to wait for anything.

Necessary Documents

Ducks to get in a row:

Your Social Security number and proof of your age;

  • Names, addresses and phone numbers of doctors, caseworkers, hospitals, and clinics that took care of you and the dates of your visits;
  • Names and dosages of all the medications you are taking;
  • Medical records from your doctors, therapists, hospitals, clinics and caseworkers, that you already have in your possession;
  • Laboratory and test results;
  • A summary of where you worked and the kind of work you did; and
  • Your most recent W-2 form or, if you were self-employed, a copy of your federal tax return.
  • This link is a pdf explaining the process. It's a 5 step verification process.

    The 5 Steps

    This link has been invaluable in helping understand exactly what they're looking for in my documentation - what I have to prove. The attorneys called this the "SSDI Blue Book".

    Blue Book

    LISTING OF IMPAIRMENTS (do any of these describe your conditions?)

    Direct to cancer

    Direct to Breast Cancer

    Direct to Depression: https://www.ssa.gov/disability/professionals/bluebook/12.00-MentalDisorders-Adult.htm#12_04

    With the knowledge from the Blue Book compared to my conditions, I feel confidant in my application even though I'm not quite stage IV. I was extremely concerned about my surgeon calling me non-compliant but my PCP volunteered that I should apply for SSDI as depressed. When I asked him if I had to see a shrink, he said he would take care of all the paperwork for me and that I should apply as depressed along with the cancer.

    This is another one of those tough decisions we get to make. Much as I dislike working, I really like the money. I'm a single person and don't have another income to fall back on. I've always worked. Over 40 years. I'm trying to think of it as early retirement. But it's not fun yet.

    I always get so sad when I come to this forum. My cheeks are wet again. I was just getting back to feeling like acquiring new "things" even if I can't take them with me. It made me feel normal. If I was really back to normal, I wouldn't have noticed that wanting new things was a "normal" thing. One day I guess I'll realize I have a new normal.

    I hope this helps someone. Heart

    cb

    EDIT: With regard to dates and timeframes, I noticed a lump in the lymph node area Thanksgiving weekend 2015. I was diagnosed with recurrence in January 2016. My application date is 6/2016. I have given SS 2 different dates to choose from as an "onset date", both are 5 months or more in the past and satisfy the waiting period. 11/15 or 1/16. This allows my payments to begin effective 6/2016. It didn't matter that I waited on my birth cert because there's a 5 month delay anyway. I expect this process to take 6 months, because I am not stage IV and have no reason for them to expedite my case. I imagine next January I'll get my first monthly check and several weeks later, approx. 6 months of back pay.


    ~I have lived a wonderful life and truly haven't missed a thing.~ BRCA1 Deleterious Mutation E1250X (3867G>T) Dx 3/15/2014, IDC, Right, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 8/7/2014 Lumpectomy: Right; Lymph node removal: Underarm/Axillary Dx 1/15/2016, IDC, Right, 1cm, Stage IIIC, Grade 3, 20/27 nodes, ER+/PR+, HER2- Surgery 3/14/2016 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left Targeted Therapy Hormonal Therapy Arimidex (anastrozole)
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    Jun 10, 2016 01:37AM artistatheart wrote:

    Thank you pwilmarth, stephanie and cb for the wealth of info here. I have decided it is at least time to apply. I cannot imagine spending the rest of my life, whatever that is, sitting behind a desk working for an entity that uses us up and spits us out at will. I have so many more important things I can be doing. I have a lot of fear about "letting go" of working and all the benefits that come with it. But also feel excited about the change. Your information is helping me feel more courageous.

    Dx 7/22/2015, ILC, Left, 4cm, Stage IV, Grade 3, ER+/PR+, HER2- Hormonal Therapy 8/10/2015 Femara (letrozole) Targeted Therapy 8/25/2015 Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant)
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    Jun 10, 2016 08:34AM Longtermsurvivor wrote:

    Artist,

    I think you will love being on disability time and will soon wonder why you held onto your job for so long. Being able to take your time with your unfolding life is a joy. And yes, it requires courage to walk away from an identity marker like work, especially when your health, wellbeing and sense of immortality/invulnerability has been ripped away by cancer.

    But there is so much more to life. And to you. Your life!

    If you've been overly defined by work and it's been your main social outlet, I encourage you to work a couple or three weekly engagements into your life - a yoga or exercise class, studio time for your art, volunteer work (start with something low commitment like helping at a special event). Around that scaffolding you can build visits with family, friends and people you always wanted to visit...but know just because your calendar opened up doesn't mean theirs has too.

    Socializing in daytime is best for me. Most of my friends work(ed), so I made new daytime friends - old people, other volunteers, part-time workers, wives of wealthy men who didn't need to work. People with overly full calendars can be hard to connect with, especially when they're zooming and we're moving slow-mo. :)

    En-couraging you to step into the next phase of your life, Artist.

    warm healing wishes, Stephanie

    Grateful to be here. Advanced breast cancer for 25 years, engage holistic approaches. Am dealing with ascites and many mets. Am on hospice.
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    Jun 14, 2016 12:28AM artistatheart wrote:

    You are absolutely right Stephanie! The only reason I have stayed this long is that I am well paid and carry the medical benefits for myself, Dh and two DD's. So dropping all of that is kind of rough to contemplate. But we are planning to downsize our home in order to manage better and will have to come up with plans for the medical. I get very excited thinking about finally having time for all of the things I have not had time for previously and am just trying to be very strategic on how I go about easing out of the working world. I am SOOOOO over worrying about my work identity and all of the crappy politics that goes with it. I also have an identity as an artist, mother, wife, bicyclist ect that I need to explore more fully. Thanks so much for the encouragement! You are amazing...

    Dx 7/22/2015, ILC, Left, 4cm, Stage IV, Grade 3, ER+/PR+, HER2- Hormonal Therapy 8/10/2015 Femara (letrozole) Targeted Therapy 8/25/2015 Ibrance (palbociclib) Hormonal Therapy Faslodex (fulvestrant)
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    Jun 14, 2016 08:44AM Longtermsurvivor wrote:

    Hi Artist,

    Thanks for your update. And I understand your medical insurance concerns!

    I can only imagine how it is for you with a husband and two daughters to consider in addition to yourself.

    I was single when I became permanently disabled in the mid-90s. I ran through COBRA, COBRA disability extension and a state-funded health plan just to get through the 2 year wait period for Medicare! Then, because I was under age 50, there were no supplemental Medicare policies available. Finally I exhausted my retirement funds on premiums, co-pays, deductibles and other medical expenses and became eligible for Medicaid. Life with Medicare primary and MediCal secondary is actually better than any of the prior options.

    Medicare has set rates for procedures, treatments, office visits, etc. So, a $6000 scan price may be set at $1000 by Medicare. The patient is then on the hook for only $200, instead of six times that amount.

    Fortunately, the Medicaid has dropped the previous property limits of $2000 for individuals and $3000 for married couples. (I'm uncertain whether this is true for all states, since some didn't accept Medicaid expansion - http://kff.org/health-reform/state-indicator/state....)

    Artist, aren't your daughters young adults? If so, or even if not, do look into MediCal and Marketplace policies for each of you individually and as a group.

    You may need to scout around, but the laws have changed to allow people with ongoing health problems to get and keep medical coverage.

    Wishing you illumination as you make your way into your new, improved life. :)

    warmest of healing wishes, Stephanie

    Grateful to be here. Advanced breast cancer for 25 years, engage holistic approaches. Am dealing with ascites and many mets. Am on hospice.

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