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Old 02-26-2013, 01:30 PM   #1
MikeF
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Location: Shelby, N.C.
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Update on Barb Need Some Advice

I have two reasons for posting today, 1st Barb is still doing great on Perjeta she was in today for her third. Blood counts all look good and shes feeling really good. We were blessed by some people in our church with two free passes to the Biltmore House in Asheville. We went yesterday with our two daughters a son in law and our two grandsons and had a great day in the beautiful mountains of western North Carolina (Gods Country) IMHO. Secondly we need some advice from someone whos been there and done that kind of thing. Regarding federal assistance such as MDCD or MDCR or Disability. Im told that if Barb were to sign up for disability she would only get back what shes put in and she hasnt worked a paying job in 30 years so there cant be a whole lot there. We recently recieved a notice from our hospital regarding a shot of Aranesp Barb was given on the 6th after her last treatment was over. We wondered why at the time they sent her upstairs to the hospital for the shot now we know. 21,000.00 for a shot ?????????????????
Im sure theres a contract price that will be sent to our ins. but come on people 21K really is this stuff made from gold or what. Needless to say Im very concerned about the financial direction we are headed. Barb is pretty insistent on avoiding MDCR and MDCD because she feels there are too many people out there taking advantage of the programs now. This may be true but I feel we are much more entitled to help than many who are getting it now. My main concern is this do any of you out there that are reciving assistance feel like your care has been in any way compromised. The last thing I want to do is shoot us in the foot. We have copay assistance from Genentech for Herceptin and Perjeta but we would loose that if on Public assistance of any kind. Hopefully Barb doesnt need Aranesp any time soon she didnt need it today thankfully. Our hospital used to be willing to work with us by rolling acct # into each other creating one acct but they will no longer allow this. So everytime Barb has something done by the hospital, EKG, Cat Scan, Blood transfusion, or the dreaded Aranesp it creates a new acct # that requires a minimum payment on top of all the other payments that need to be made. Im sorry I guess Im venting slightly but I really was hoping for some advice form those of you who might been in our shoes financially. Are there any downsides to MDCD or MDCR as far as treatment goes? Do they pay it all? How far back in time will they go?
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Old 02-26-2013, 04:22 PM   #2
Lauriesh
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Re: Update on Barb Need Some Advice

I don't know about MDCR or mdcd, but for disability, you have to have worked 5 of the last 10 years to qualify for social security disability. If she has not worked for 30 years, she will not qualify .


Laurie
__________________
diagnosed stage 2- 3/2005
4.5 cm & 2+ nodes , er/pr- & HER2+
4 AC
12 taxol/Herceptin
Year of Herceptin
liver mets- July-2010
7 taxotere/Herceptin
RFA- Feb.2011
NED
U of Wa vaccine trial-oct 2011-Feb 2012
Herceptin/tykerb
Ned - 2 1/2 years
Herceptin & perjeta
Ned 3 years
Herceptin- reducing treatments , due to s/e, to 5-6 a year
NED- 3 1/2 years
Ned - 4 years
2/15- stopped herceptin - on no treatment
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Old 02-26-2013, 07:14 PM   #3
Pamelamary
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Re: Update on Barb Need Some Advice

I can't advise, Paul, but my heart goes out to all those living in a system which can't or won't take better care of its own.
Warm regards to you and Barb, and may the Perjeta keep working well.
Pam
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Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
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2/19: Happily still stable on Herceptin, Letrozole and 3 monthly Zometa.
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Old 02-27-2013, 03:26 AM   #4
KsGal
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Re: Update on Barb Need Some Advice

I don't know if I can answer all your questions, but I can tell you what has happened to me. Barb won't qualify for social security disability because of her work history. I believe she would qualify for SSDI, but the payment is minimal, I believe 720 a month. You apply for it at the social security office the same as applying for disability. When you are approved for SSDI, you are automatically eligible for Medicaid.
I applied for disability, but it takes five months for your disability payments to start coming (something I was not aware of when I quit my job!), so right now I receive SSDI. Even with a terminal diagnosis, apparently the five month waiting period is to make sure you are truly disabled. Ridiculous!
When my disability payments kick in, I will receive Medicaid for two years, and then they transition you over to Medicare. Medicaid pays pretty much 100 percent of everything. Very minimal, if any, cost for anything. In two years, when Medicare kicks in, it covers a flat 80 percent, and I am responsible for the other 20. Not sure what will happen when/if I get to that point.
Im not married, so I am not certain how the income is evaluated if you are married, so that is something you would have to call someone about or google search. I do know in my situation to receive SSDI there are some guidelines like I can't have more than 2000 dollars in the bank, etc.
__________________
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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Old 02-27-2013, 05:13 AM   #5
Lauriesh
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Re: Update on Barb Need Some Advice

Ssdi is the one where you need work credits, but ssi is the need based one. I was told that if married, your family income had to be lower than 35,000 to qualify for ssi. ( it may be a little higher now as that was a few years ago)


Laurie
__________________
diagnosed stage 2- 3/2005
4.5 cm & 2+ nodes , er/pr- & HER2+
4 AC
12 taxol/Herceptin
Year of Herceptin
liver mets- July-2010
7 taxotere/Herceptin
RFA- Feb.2011
NED
U of Wa vaccine trial-oct 2011-Feb 2012
Herceptin/tykerb
Ned - 2 1/2 years
Herceptin & perjeta
Ned 3 years
Herceptin- reducing treatments , due to s/e, to 5-6 a year
NED- 3 1/2 years
Ned - 4 years
2/15- stopped herceptin - on no treatment
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Old 02-27-2013, 02:42 PM   #6
KsGal
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Re: Update on Barb Need Some Advice

Im sorry, I put them backwards!
__________________
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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Old 02-28-2013, 12:50 AM   #7
Jackie07
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Re: Update on Barb Need Some Advice

Mike,

There's a 'Medicare Advantage' plan offered by most insurance companies. Barb can pay an extra monthly $200.00+ on top of the $100.00 Medicare monthly payment and will be covered fully like she used to under the insurance plan provided by her insuracne company.

As a stage IV patient, Barb should qualify for disability right away (the paper work might still take a few months) - once she's approved for her disability status, she automatically qualifies for Medicare. I view medicare as a public insurance program. The 'consumers' I used to work with at group homes all had Medicare - none of them had cummulated any work hours. You might want to contact 'Legal Aide' in your area and get a volunteer attorney to work on Barb's case (or get a referral from them.)

Certainly you want to consider the pros and cons regarding Genetech's special program.
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Last edited by Jackie07; 02-28-2013 at 01:19 AM..
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Old 02-28-2013, 09:01 AM   #8
phil
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Re: Update on Barb Need Some Advice

I think jackie 's info is more accurate. cancer pts get quicker appr. for soc. sec. that system is designed by our govt ( taxpayers ) as safety net for any of us who are disabled. barb sure qualifies, leavre the political arguments for another time. to take. i thin k u should make an appt. w/ soc sec. and talk over issue. ask about what medicaid covers in your state . Massachusetts, where we are is great coverage, univ. healthcare. Other states not so much. check on coverage of your meds, tx's on both medicaid, and medicare .
And, Thank God for Perjeta , and the people who made it !
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Old 02-28-2013, 10:19 AM   #9
KsGal
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Re: Update on Barb Need Some Advice

Well, he was saying she would not qualify because she had no work history. From everything that I know, that is correct. You can only get disability if you have quarters of income to report. There is no required work history if you apply for SSI, which is the low income program for those who are not eligible for disability.
As I am on disability, I can tell you that you do get approved immediately for benefits with a terminal diagnosis, but you still don't receive a payment from disability for five months....My first payment comes in April, and I was approved in November. They are trying to get legislation through that will change this, but for right now you are approved immediately but still have the same waiting period as everyone else. It does need to be changed...
Sorry if anything I said was inaccurate..I was just saying what happened in my situation when applying for disability and currently receiving SSI until the disability payments kick in.
__________________
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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