I apologize in advance if this has been discussed before or if this is not the correct forum discussion. I am looking for some input regarding the following: I was diagnosed with multiple myeloma in 2011 when I was 37 years old. I had close to 80% bone marrow involvement. Two years later rvd has worked miracles for me (auto transplant, not so much). Long story short, I have been very fortunate to be only on rev maintenance therapy (at least for now). In addition, presently I am in "remission," whatever the meaning of this is. I have been working through all of this (except for my stem cell hospital stay and subsequent recovery). My plan has been to live my life as before, pain and suffering permitting. Every once in a while, however, I have the nagging feeling that my life is slipping away working at my job. I am painfully familiar with myeloma and realize that it is a matter of time before the beast will show its ugly head again and then it will be off to the races looking at alternative protocols, which may, or may not work as well.
I am extremely fortunate to have a great long term disability to the point where, accounting for current tax rates, I am probably better off not working than working. So here is my question. I believe most long term disability plans (including mine) have a 2 year period where the insurance provider re-assesses the medical condition of the insured. How many of you have been through this and have you had any difficulties from the insurance company continuing coverage? Could you please share your experience. This would be invaluable to me if I decide to stop working and live life more fully (hopefully) before I have to deal with this monster again.
Thank you very much in advance.
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ivanm - Name: Ivan Mitev
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August, 2011
- Age at diagnosis: 37
Re: Long-term disability question
I am in the exact same boat as well, as I am pondering doing an Allo transplant and I'm sure that will knock me out of work at least 4 months or so. The monkey wrench in this is I just started a new job a month ago, so I need to iron out all of these kinks and endless questions to HR before I go in for the Allo, which may be around January.
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Guest1
Re: Long-term disability question
I was on LTD, but at the 2 year reassessment point I was deemed fit for work and my coverage cut off (I was back at work part time and my insurance was paying me the difference) it was just over year after my stem cell transplant.
as soon as I went back to work part time I got endless letters requesting medical certificates and my doctor always complied. The insurance company had their whole "back to work plan" once i went back to work (1 day a week for the first month, two days a week second month etc, but I only go to three days a week and then said I did not want to work more then that and my doctor supported it) and they wanted to "close my file"
I started getting frequent (harassing) phone calls from the case worker constantly questioning why I can't work full time as my only complaints were "fatique" and infections (lowered immune system). At one point she told me I just needed to go to bed earlier and to take a nap after I get home from work.
I think going back to work part time was what did it for me. They saw I was part time, after which the did everything they could to not pay me benefits / cut me off.
It was an awful thing to live through. Like I said now I look back it was harrassment.
when I stopped my maintenence / pamidronate treatments they really upped the harassment as I was not actively in "treatment".
IfI relapse or go on disability again i will be designating an "agent" on my behalf (my sister) and the insurance company will only be allowed to contact her in writing. I plan to send a notarized letter attesting to that fact. A phsyciatrist my sister knows told her this is best way to deal with harassing case workers when she told him abuot my story....
So long story short, I am back at work, and yes, I do feel life is slipping me by as working full time is really draining at times. During the week all I do is work, come home eat dinner sleep. Not much of a life!
as soon as I went back to work part time I got endless letters requesting medical certificates and my doctor always complied. The insurance company had their whole "back to work plan" once i went back to work (1 day a week for the first month, two days a week second month etc, but I only go to three days a week and then said I did not want to work more then that and my doctor supported it) and they wanted to "close my file"
I started getting frequent (harassing) phone calls from the case worker constantly questioning why I can't work full time as my only complaints were "fatique" and infections (lowered immune system). At one point she told me I just needed to go to bed earlier and to take a nap after I get home from work.
I think going back to work part time was what did it for me. They saw I was part time, after which the did everything they could to not pay me benefits / cut me off.
It was an awful thing to live through. Like I said now I look back it was harrassment.
when I stopped my maintenence / pamidronate treatments they really upped the harassment as I was not actively in "treatment".
IfI relapse or go on disability again i will be designating an "agent" on my behalf (my sister) and the insurance company will only be allowed to contact her in writing. I plan to send a notarized letter attesting to that fact. A phsyciatrist my sister knows told her this is best way to deal with harassing case workers when she told him abuot my story....
So long story short, I am back at work, and yes, I do feel life is slipping me by as working full time is really draining at times. During the week all I do is work, come home eat dinner sleep. Not much of a life!
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Long-term disability question
This is very helpful to me. Thank you Lys, and I am sorry to hear you have been through all of this. I suspected this much but on the other hand I hoped that having a terminal/incurable cancer would invoke at least some sympathy from the insurance company.
On a different note, I also suspect that the larger the disability sum, the greater the issues. I had a very quick relapse after my stem cell transplant and I am told that I will be on Revlimid as long as it works, but I would imagine that as long as I feel "OK" and my complaints are mainly fatigue, being irritable, lack of concentration, forgetfulness and so on, I can expect to have an issue down the road should I decide to leave work in my current state. If it happens that you are harassed again, I would suggest that you hire an attorney.
Also, I haven't looked into this in more detail, but I would imagine that as long as you play by the insurance company rules and exhaust their administrative process (i.e. appeal when they tell you to appeal), you could drag them to court in front of a jury. I'd say ordinary jury people would be far more understanding than a bottom line profit seeking institution.
In any event, thanks again.
On a different note, I also suspect that the larger the disability sum, the greater the issues. I had a very quick relapse after my stem cell transplant and I am told that I will be on Revlimid as long as it works, but I would imagine that as long as I feel "OK" and my complaints are mainly fatigue, being irritable, lack of concentration, forgetfulness and so on, I can expect to have an issue down the road should I decide to leave work in my current state. If it happens that you are harassed again, I would suggest that you hire an attorney.
Also, I haven't looked into this in more detail, but I would imagine that as long as you play by the insurance company rules and exhaust their administrative process (i.e. appeal when they tell you to appeal), you could drag them to court in front of a jury. I'd say ordinary jury people would be far more understanding than a bottom line profit seeking institution.
In any event, thanks again.
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ivanm - Name: Ivan Mitev
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August, 2011
- Age at diagnosis: 37
Re: Long-term disability question
After diagnosis I was determined to continue working and that I would have 6 months of treatment and then have a stem cell transplant and then everything would go back to normal and I would get my life back. Unfortunately my myeloma and Amyloidosis had other ideas. My first 6 months of treatment with Rev & Dex had me hospitalized on 3 separate occasions for severe dehydration. Then when it came time to hand me off to the transplant specialist they determined that I needed more treatment this time with Velcade and Dex. It was at this point that I went on full time long term disability. I know there was no way I could continue working as a controller and go through more chemo. Between the fatigue, pain, neuropathy, loss of concentration and the host of other side effects, working was not a possibility. Turns out it was the best decision I've made. My full time job now is taking care of my health.
I have not had any issues with my insurance company questioning my ability to work. Also, my life insurance is with the same company so when I went on fill time disability they also began paying the premiums on my life insurance policy. Needless to say, they would have even more incentive to question my ability to work with the double burden of paying my monthly disability payments and my life insurance premiums. I currently go through reevaluation about every six months. I also started receiving SSI at the beginning of this year. They said they would reevaluate in 2 years.
Hope all goes well with you. As I said, going to full time disability has been the best decision I made. I can't even imagine trying to work through all of this. Our lives are impacted daily from our disease and not having to work has taken a great amount of stress off my shoulders.
I have not had any issues with my insurance company questioning my ability to work. Also, my life insurance is with the same company so when I went on fill time disability they also began paying the premiums on my life insurance policy. Needless to say, they would have even more incentive to question my ability to work with the double burden of paying my monthly disability payments and my life insurance premiums. I currently go through reevaluation about every six months. I also started receiving SSI at the beginning of this year. They said they would reevaluate in 2 years.
Hope all goes well with you. As I said, going to full time disability has been the best decision I made. I can't even imagine trying to work through all of this. Our lives are impacted daily from our disease and not having to work has taken a great amount of stress off my shoulders.
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Bratb5 - Name: Sandy Braucht
- Who do you know with myeloma?: Myself and my dad
- When were you/they diagnosed?: September 2011
- Age at diagnosis: 50
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