HER2 Support Group Forums - View Single Post - How has breast cancer affected your income?

Lani · 03-01-2008, 07:54 PM

one I never forgot--

02-04-2006, 10:00 PM #26
Gina
Senior Member

Join Date: Oct 2005
Location: Alexandria, VA
Posts: 187
Just one more thing to consider...
If you are very young when you are dx or have been mostly self -employed and have only been working a few years as I was when I first got BC at the age of 33, your monthy disability amount will be based on some percentage of what you have paid into the social security system. In my case, when I was DX in 1997 and mets in 1999, my employer applied for my social security benefits as they did not want to pay for me. After 3 years of trying, I was eventually approved, but as I had only worked 12 years outside of owning my company, my monthly amount was barely $1,100.00. I am a single mother head of household living in a very high cost of living area (about 10 minutes from Washington, DC) with no other means of support.

I tried and tried to budget to live within this amount, but as my private insurance was about $285 a month and my mortgage was about $1,500 and my co-pays were running easily several hundred a month, not to mention what I paid out in prescriptions and natural remedies, and acupuncture, which at the time was NOT tax deductible as it is now, not to mention food, gas, and essentials, it was very difficult....so, naturally, I had no choice but to keep trying to work. At first, I went back to my very nice Smithsonian job as Artworks and Database Coordinator for the Resident Associate Program...but try as I might, given the rigid 9 to 5 Monday through Friday structure of the quasi-governmental institution, it was impossible. Plus, I no longer had the energy to organize and attend the late night art receptions, or do the often required travel for training or chaperone the fabulous Smithsonian travel programs or monitor the Campus on the Mall evening classes, which though NOT absolutely written into the job description, were nevertheless expected "DUTIES AS ASSIGNED". Plus, the stress of the database mining part of the job which required me to interface with every division of the institution was simply too much to juggle in between CT and muga scans, herceptin infusions, blood draws, and doc and onc appointments, etc....

Fortunately or unfortunately, I had also co- owned a rather successful S corp-a major exterior construction company in the DC Metro area-- before my dx with my business partner (who later died of cancer mets to liver also), and even though my illness and his death bankrupted the Corporation, I decided, since I had my license and knew something of owning one's own company, I would set up myself as a sole proprietor to supplement the $1,100 of social security disability benefits because-- very quickly -- it became PAINFULLY evident that there would be few companies that would want to hire an employee who would, by nature of her illness, be absent a good bit of the time. Remember these are the late 90's and early 2000--flex time was NOT nearly as widespread as it is now.

This worked well for a few years until one year, I earned about $250 over the strictly enforced MAXIMUM earnings with disability limit which that year was about $8,000, I think, so I was fined over $33,000..and essentially had to pay back every cent of social security that I had received the two and half or so years prior. You can not imagine how shocked I was. I tried to explain that I was a single mother with no other means to support me and my small son with no family in the area--that I was head of household, living in a very expensive city. They knew I had a terminal illness, but they informed me that I had basically been "terminally ill too long" and although I was still, BY LAW, disabled under the terminally ill clause, I would have to return the money or go to jail...this is no joke. The social security representative I met with was very serious. I was so sick at the time, my mets had come back again (I think that was about the 4th of 7 bouts)...anyway, I was crying and crying. I went into shock. I could not believe that they legally could do this.

As at that time, I was pretty poor and I barely had enough money to cover the essentials and didn't have money for a really good lawyer to take up the appeal process, which though long and dreary, probably could have obtained me the hallowed "waiver", I tried going with the supposedly "FREE" disability attorneys but no one seemed terribly interested in my case, and I am just that type of overly PROUD person who SERIOUSLY HATES.. above ALL THINGS... to ask for any kind of help--even when I really need it...so I just accepted the "verdict" and signed the papers shoved at me then and there, admittedly under undue distress....sighhhh...and wondered out to my car completely dazed and cried for hours before I could even drive out of the parking lot.

It has taken me over two years to pay it all back. If I live until the end of February of this year, I won't owe them anything any more and I truly HOPE and PRAY that no matter what happens to me and my son, I will not have to apply again for any reason, prefering seriously, to just die...I am not kidding--so painful was my experience with the whole ordeal that I found her-2 neu cancer to be easier to deal with than the SS disability system. I kid you not. Hopefully, things are greatly improved these days and that all of you who are applying will reap only the benefits and suffer none of the pitfalls.

But another word of caution, keep in mind that herceptin may soon be classed as a bio-technical "invention" which in many cases under Social Disability law "re-enables" a person for work of some type--even though admitedly it may not be the level or pay scale of work you used to do, and unless, as Steph very accurately points out, you are considered stage 4 under the "terminally ill" clause, in many cases, you may --in the very near future-- no longer be able to get approved, merely by being her-2 positive. So for those of you BRAVE souls who even after reading this still want to apply and should, especially if you have worked enough years to make the monthly amount significant, get those applicatations in ASAP so you can slip in UNDER the wire.

Also, I was "LUCKY" enough to have the insurance some one mentioned above with the "fine print" that once you were even just approved for medicare, the private insurer would automatically switch from your primary insurer to your secondary insurer, so in 2004, Blue Cross Blue Shield over -turned $96,000 of payments to 25 of my providers over a 3- year period retroactive back to 2001--in other words, bills that had already been paid with co-pays by me and funds from Blue Cross years back...were suddenly "UNPAID" and it became MY responsability (ill though I was) to re-process the paperwork back through Medicare and it has taken me nearly 2 years to force Medicare to REPAY all $96,000 of them. Oh, and as for my co-pays...well, that money was never returned to me by 24 providers--although Medicare did eventually pay them all except for one -- and one honest clerk in one provider's office did refund some to me. There is still one surgery outstanding for around $3, 500 which get this..smile...both MEDICARE and Blue Cross are denying for guess what...smile.."UNTIMELY FILING" hee hee heeee when it was Blue Cross themselves which took the money back retroactively to 2001 in the first place...it is REALLY good that I have always been blessed with a TREMENDOUS sense of humor....otherwise, the paperwork alone that I have lived through would have killed me faster than the her-2. But laugh as I try to, the provider that has not been paid is unfortunately my OB-GYN, and until some agreement on payment with him can be provided by either Blue Cross or Medicare --we are appealing for the 6th time to both agencies, his office is unwilling to "see me". I am at this point about a year over due for my Pap smear and mamagram and given my history of Pelvic mets, desperately would benefit from a sonogram, but because I am with an HMO, he is the designated doctor who must write the scripts and perform the Pap. Yes, having her-2 and being less that RICH...is not fun...smile....

When faced with the option of wasting the little energy I have left litigating the social security system, getting my congressman or Access Watch involved, etc. though I have genuinely considered it MANY TIMES, I decided, FOR ME, it would simply be better to just put any energy I have left over towards finding what the first and underlying cause of her-2 over-expression is and snip this whole problem in the bud, and I have been HAPPILY "employed" at that task in my free time while continuing to run my company as my "DAY JOB" all these years since and guess what? Even though the ONE thing I would agree with Social Security on is that I have indeed been "terminally" ill for WAY too long, I still am....here...smile.

Godspeed to all,
Gina

Gina--I hope you did not mind my quoting your post--I think it says it all!

03-01-2008, 07:54 PM	#9
Lani Senior Member Join Date: Mar 2006 Posts: 4,783	this response is not mine, but Gina's from a couple of years ago and one I never forgot-- 02-04-2006, 10:00 PM #26 Gina Senior Member Join Date: Oct 2005 Location: Alexandria, VA Posts: 187 Just one more thing to consider... If you are very young when you are dx or have been mostly self -employed and have only been working a few years as I was when I first got BC at the age of 33, your monthy disability amount will be based on some percentage of what you have paid into the social security system. In my case, when I was DX in 1997 and mets in 1999, my employer applied for my social security benefits as they did not want to pay for me. After 3 years of trying, I was eventually approved, but as I had only worked 12 years outside of owning my company, my monthly amount was barely $1,100.00. I am a single mother head of household living in a very high cost of living area (about 10 minutes from Washington, DC) with no other means of support. I tried and tried to budget to live within this amount, but as my private insurance was about $285 a month and my mortgage was about $1,500 and my co-pays were running easily several hundred a month, not to mention what I paid out in prescriptions and natural remedies, and acupuncture, which at the time was NOT tax deductible as it is now, not to mention food, gas, and essentials, it was very difficult....so, naturally, I had no choice but to keep trying to work. At first, I went back to my very nice Smithsonian job as Artworks and Database Coordinator for the Resident Associate Program...but try as I might, given the rigid 9 to 5 Monday through Friday structure of the quasi-governmental institution, it was impossible. Plus, I no longer had the energy to organize and attend the late night art receptions, or do the often required travel for training or chaperone the fabulous Smithsonian travel programs or monitor the Campus on the Mall evening classes, which though NOT absolutely written into the job description, were nevertheless expected "DUTIES AS ASSIGNED". Plus, the stress of the database mining part of the job which required me to interface with every division of the institution was simply too much to juggle in between CT and muga scans, herceptin infusions, blood draws, and doc and onc appointments, etc.... Fortunately or unfortunately, I had also co- owned a rather successful S corp-a major exterior construction company in the DC Metro area-- before my dx with my business partner (who later died of cancer mets to liver also), and even though my illness and his death bankrupted the Corporation, I decided, since I had my license and knew something of owning one's own company, I would set up myself as a sole proprietor to supplement the $1,100 of social security disability benefits because-- very quickly -- it became PAINFULLY evident that there would be few companies that would want to hire an employee who would, by nature of her illness, be absent a good bit of the time. Remember these are the late 90's and early 2000--flex time was NOT nearly as widespread as it is now. This worked well for a few years until one year, I earned about $250 over the strictly enforced MAXIMUM earnings with disability limit which that year was about $8,000, I think, so I was fined over $33,000..and essentially had to pay back every cent of social security that I had received the two and half or so years prior. You can not imagine how shocked I was. I tried to explain that I was a single mother with no other means to support me and my small son with no family in the area--that I was head of household, living in a very expensive city. They knew I had a terminal illness, but they informed me that I had basically been "terminally ill too long" and although I was still, BY LAW, disabled under the terminally ill clause, I would have to return the money or go to jail...this is no joke. The social security representative I met with was very serious. I was so sick at the time, my mets had come back again (I think that was about the 4th of 7 bouts)...anyway, I was crying and crying. I went into shock. I could not believe that they legally could do this. As at that time, I was pretty poor and I barely had enough money to cover the essentials and didn't have money for a really good lawyer to take up the appeal process, which though long and dreary, probably could have obtained me the hallowed "waiver", I tried going with the supposedly "FREE" disability attorneys but no one seemed terribly interested in my case, and I am just that type of overly PROUD person who SERIOUSLY HATES.. above ALL THINGS... to ask for any kind of help--even when I really need it...so I just accepted the "verdict" and signed the papers shoved at me then and there, admittedly under undue distress....sighhhh...and wondered out to my car completely dazed and cried for hours before I could even drive out of the parking lot. It has taken me over two years to pay it all back. If I live until the end of February of this year, I won't owe them anything any more and I truly HOPE and PRAY that no matter what happens to me and my son, I will not have to apply again for any reason, prefering seriously, to just die...I am not kidding--so painful was my experience with the whole ordeal that I found her-2 neu cancer to be easier to deal with than the SS disability system. I kid you not. Hopefully, things are greatly improved these days and that all of you who are applying will reap only the benefits and suffer none of the pitfalls. But another word of caution, keep in mind that herceptin may soon be classed as a bio-technical "invention" which in many cases under Social Disability law "re-enables" a person for work of some type--even though admitedly it may not be the level or pay scale of work you used to do, and unless, as Steph very accurately points out, you are considered stage 4 under the "terminally ill" clause, in many cases, you may --in the very near future-- no longer be able to get approved, merely by being her-2 positive. So for those of you BRAVE souls who even after reading this still want to apply and should, especially if you have worked enough years to make the monthly amount significant, get those applicatations in ASAP so you can slip in UNDER the wire. Also, I was "LUCKY" enough to have the insurance some one mentioned above with the "fine print" that once you were even just approved for medicare, the private insurer would automatically switch from your primary insurer to your secondary insurer, so in 2004, Blue Cross Blue Shield over -turned $96,000 of payments to 25 of my providers over a 3- year period retroactive back to 2001--in other words, bills that had already been paid with co-pays by me and funds from Blue Cross years back...were suddenly "UNPAID" and it became MY responsability (ill though I was) to re-process the paperwork back through Medicare and it has taken me nearly 2 years to force Medicare to REPAY all $96,000 of them. Oh, and as for my co-pays...well, that money was never returned to me by 24 providers--although Medicare did eventually pay them all except for one -- and one honest clerk in one provider's office did refund some to me. There is still one surgery outstanding for around $3, 500 which get this..smile...both MEDICARE and Blue Cross are denying for guess what...smile.."UNTIMELY FILING" hee hee heeee when it was Blue Cross themselves which took the money back retroactively to 2001 in the first place...it is REALLY good that I have always been blessed with a TREMENDOUS sense of humor....otherwise, the paperwork alone that I have lived through would have killed me faster than the her-2. But laugh as I try to, the provider that has not been paid is unfortunately my OB-GYN, and until some agreement on payment with him can be provided by either Blue Cross or Medicare --we are appealing for the 6th time to both agencies, his office is unwilling to "see me". I am at this point about a year over due for my Pap smear and mamagram and given my history of Pelvic mets, desperately would benefit from a sonogram, but because I am with an HMO, he is the designated doctor who must write the scripts and perform the Pap. Yes, having her-2 and being less that RICH...is not fun...smile.... When faced with the option of wasting the little energy I have left litigating the social security system, getting my congressman or Access Watch involved, etc. though I have genuinely considered it MANY TIMES, I decided, FOR ME, it would simply be better to just put any energy I have left over towards finding what the first and underlying cause of her-2 over-expression is and snip this whole problem in the bud, and I have been HAPPILY "employed" at that task in my free time while continuing to run my company as my "DAY JOB" all these years since and guess what? Even though the ONE thing I would agree with Social Security on is that I have indeed been "terminally" ill for WAY too long, I still am....here...smile. Godspeed to all, Gina Gina--I hope you did not mind my quoting your post--I think it says it all!