Hello,
Has anybody had experience with the following? Please share.
I've been working during my multiple myeloma but I am trying to plan for the day when I may not be able to work. I just turned 40. It seems that after my COBRA period expires I have to go on Medicare. However, from what I am reading, Medicare does not kick in until you have been disabled and have been drawing SSDI for 24 months.
If indeed this is true, this is a royal and befuddling predicament to me. What am I to do if in the interim (after COBRA expires and before I reach the 24 month threshold) I have to be on Revlimid (or, God forbid, I have to do another stem cell transplant)? Do I just roll over and die?
I am being sarcastic here, but per my initial digestion of the various processes, it seems that's a plausible result.
I am currently contemplating a T cell depleted allo as part of a clinical trial. I'd hate to make critical life decisions based on financial considerations, but indeed if this type of transplant would not be covered until 2 years after I leave my job for disability reasons, I may as well bite the bullet and do it now.
My second part of the question is whether anyone has any experience with Medicare and clinical trials (specifically with transplant trials?). Do they cover those?
I apologize in advance if this has been covered already. Thank you all.
Forums
-
ivanm - Name: Ivan Mitev
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August, 2011
- Age at diagnosis: 37
Re: Medicare, SSDI, and 2-year gap (and clinical trials)
Unless it has changed it is true that Medicare has a gap. In the infinite wisdom of Congress, just because you're disabled and unable to work doesn't mean you need medical care. It's funny, in a sarcastic way, that a promoted feature of the ACA was the elimination of preexisting conditions keeping people form getting insurance -- conditions that they had a big part in creating because they left people with documented medical conditions in the cold.
I think the question is how the ACA will treat you if you're on SSDI?
I think the question is how the ACA will treat you if you're on SSDI?
-
Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Medicare, SSDI, and 2-year gap (and clinical trials)
Thanks Wayne.
In all honesty, I think of myself as a relatively intelligent guy, but the whole situation is giving me an enormous mental strain. It is beyond me how other young people cope with the system.
So, from what I've read so far, if I run into health trouble and have to stop working, I go into COBRA. That's 18 months of coverage if I pony up the 25k in insurance premiums that my employer and I are paying right about now. This, obviously, not being independently wealthy, I have to cover from my long term disability. So far so good (assuming I don't run into an issue with long term disability provider).
When COBRA expires I either have to
(1) Pray to the insurance company to give me the same rate on insurance under HIPAA,
(2) Try to extend my COBRA (I believe 13 more months possible but not guaranteed),
(3) Try to get on to my wife's insurance (assuming she has a full time job, which she does not have now), or
(4) Bite the bullet and wait out the remaining 6 months without coverage until I get Medicare.
I haven't looked into ACA, but I do not think I will qualify.
Now, assuming I would consider an allo transplant in the future as part of a trial, Medicare may not even be an option because it seems that they do not cover it. An allo transplant for a young guy like me is just about one of the very few alternatives for a cure and long term survival.
All of this is a jigsaw puzzle that rivals in my guestimate the intricacies of the Tax Code.
I have a great job with outstanding benefits and I am just hoping and keeping my fingers crossed that this will actually help (i.e. I'd have enough money to pay my COBRA premiums and sufficiently left over to live comfortably).
However, I can't help but wonder how do less fortunate people that can't pay the COBRA premiums fare? Do they just try to go into Obamacare? What would a young person who needs to do an allo in the 2 year gap and is out of COBRA for one reason or another do? Do we indeed live in the greatest country on earth? I thought so when I first emigrated here many years ago. Now, not so sure.
This is a logistical and administrative nightmare that no sick person should have to go through. Anyways, sorry for sort of a venting post, but maybe it would be helpful to some other young people that are going through the same thoughts.
Best Ivan
In all honesty, I think of myself as a relatively intelligent guy, but the whole situation is giving me an enormous mental strain. It is beyond me how other young people cope with the system.
So, from what I've read so far, if I run into health trouble and have to stop working, I go into COBRA. That's 18 months of coverage if I pony up the 25k in insurance premiums that my employer and I are paying right about now. This, obviously, not being independently wealthy, I have to cover from my long term disability. So far so good (assuming I don't run into an issue with long term disability provider).
When COBRA expires I either have to
(1) Pray to the insurance company to give me the same rate on insurance under HIPAA,
(2) Try to extend my COBRA (I believe 13 more months possible but not guaranteed),
(3) Try to get on to my wife's insurance (assuming she has a full time job, which she does not have now), or
(4) Bite the bullet and wait out the remaining 6 months without coverage until I get Medicare.
I haven't looked into ACA, but I do not think I will qualify.
Now, assuming I would consider an allo transplant in the future as part of a trial, Medicare may not even be an option because it seems that they do not cover it. An allo transplant for a young guy like me is just about one of the very few alternatives for a cure and long term survival.
All of this is a jigsaw puzzle that rivals in my guestimate the intricacies of the Tax Code.
I have a great job with outstanding benefits and I am just hoping and keeping my fingers crossed that this will actually help (i.e. I'd have enough money to pay my COBRA premiums and sufficiently left over to live comfortably).
However, I can't help but wonder how do less fortunate people that can't pay the COBRA premiums fare? Do they just try to go into Obamacare? What would a young person who needs to do an allo in the 2 year gap and is out of COBRA for one reason or another do? Do we indeed live in the greatest country on earth? I thought so when I first emigrated here many years ago. Now, not so sure.
This is a logistical and administrative nightmare that no sick person should have to go through. Anyways, sorry for sort of a venting post, but maybe it would be helpful to some other young people that are going through the same thoughts.
Best Ivan
-
ivanm - Name: Ivan Mitev
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August, 2011
- Age at diagnosis: 37
Re: Medicare, SSDI, and 2-year gap (and clinical trials)
So, if you qualify for SSDI, my understanding is that you can fill in coverage for the two year Medicare coverage gap by having the option to get into a state exchange and/or get into your state's Medicaid ranks via the ACA, beginning this year. But you can't have both Medicare and ACA concurrently, so it is a bit of mixed signal here.
I would suggest calling your health exchange for your state to sort through this (you may have to talk to multiple folks at the exchange until you find somebody that really understands the nuances of your particular situation...don't take "no" as a first answer, because my experience with them thus far is that they aren't all up to speed on the actual details of the law). See:
http://www.christopherreeve.org/site/c.ddJFKRNoFiG/b.6676367/k.3F82/Medicare_TwoYear_Waiting_Period.htm
I would suggest calling your health exchange for your state to sort through this (you may have to talk to multiple folks at the exchange until you find somebody that really understands the nuances of your particular situation...don't take "no" as a first answer, because my experience with them thus far is that they aren't all up to speed on the actual details of the law). See:
http://www.christopherreeve.org/site/c.ddJFKRNoFiG/b.6676367/k.3F82/Medicare_TwoYear_Waiting_Period.htm
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Medicare, SSDI, and 2-year gap (and clinical trials)
My husband just came off COBRA and went on Medicare. It is 24 months on disability before Medicare kicks in. However, read your COBRA documents. It should mention something about becoming disabled causing them to have to extend your COBRA.
With that said, are you working at all? I'm a little tired at the moment and wasn't sure I understood that from your post. When my husband became suddenly disabled (not due to myeloma) because he was working, he was eligible for Medicaid for employed people with disabilities. To maintain that, he has to work at least one hour a month for someone. Because of that, the state chose to cover his COBRA premium when I had to have a reduction in hours to care for him due to the myeloma.
Complicated isn't it?
I would read your COBRA documents and contact a DHS worker in your state and see if they can help you find the best thing for your situation. It sucks at times to ask for help, but sometimes there is nothing else we can do.
Best of luck to you.
With that said, are you working at all? I'm a little tired at the moment and wasn't sure I understood that from your post. When my husband became suddenly disabled (not due to myeloma) because he was working, he was eligible for Medicaid for employed people with disabilities. To maintain that, he has to work at least one hour a month for someone. Because of that, the state chose to cover his COBRA premium when I had to have a reduction in hours to care for him due to the myeloma.
Complicated isn't it?
I would read your COBRA documents and contact a DHS worker in your state and see if they can help you find the best thing for your situation. It sucks at times to ask for help, but sometimes there is nothing else we can do.
Best of luck to you.
-
cindyl
Re: Medicare, SSDI, and 2-year gap (and clinical trials)
Thanks everybody for your input. I will certainly look into ACA, but as I mentioned I do not think I'd qualify. I believe that my long term disability payments would far exceed the maximum for ACA.
From what I've seen so far, for people that have a good long term disability coverage and contemplate doing something like an allo transplant as part of a trial, the best thing would be to pay the COBRA and then convert the COBRA coverage into an individual policy. I believe the insurer cannot increase the premiums and impose a pre-existing condition limit. It is expensive, but this seems to be the best choice.
From what I hear, ACA exchanges do not cover some of the major cancer centers or, if they do, they have a very poor coverage. Regrettably, my understanding, after going through some of this horrendous administrative thicket, is that the less you pay, the worse your options. So, if I want to maintain my current coverage for myself and my family, I am looking at probably around $25k-$30k a year.
I am struggling with, and dreading, the adjustments that I will have to make if I have to abandon my career. I guess that's life. I have some of these issues posted to some of my social workers and will update this if I learn something else, or something to the contrary to what I stated here.
From what I've seen so far, for people that have a good long term disability coverage and contemplate doing something like an allo transplant as part of a trial, the best thing would be to pay the COBRA and then convert the COBRA coverage into an individual policy. I believe the insurer cannot increase the premiums and impose a pre-existing condition limit. It is expensive, but this seems to be the best choice.
From what I hear, ACA exchanges do not cover some of the major cancer centers or, if they do, they have a very poor coverage. Regrettably, my understanding, after going through some of this horrendous administrative thicket, is that the less you pay, the worse your options. So, if I want to maintain my current coverage for myself and my family, I am looking at probably around $25k-$30k a year.
I am struggling with, and dreading, the adjustments that I will have to make if I have to abandon my career. I guess that's life. I have some of these issues posted to some of my social workers and will update this if I learn something else, or something to the contrary to what I stated here.
-
ivanm - Name: Ivan Mitev
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August, 2011
- Age at diagnosis: 37
Re: Medicare, SSDI, and 2-year gap (and clinical trials)
Hi IvanM,
Having blood cancer at a young age s***s, that is for sure. Making these types of decisions is difficult. You should contact a professional to help you with these insurance issues.
"I am currently contemplating a T cell depleted allo as part of a clinical trial. I'd hate to make critical life decisions based on financial considerations, but indeed if this type of transplant would not be covered until 2 years after I leave my job for disability reasons, I may as well bite the bullet and do it now."
I am fairly certain that donor transplants are not covered for myeloma under Medicare. I have read in the past that Medicare only pays for one auto. That may have changed. I am sure if you asked at the transplant center they would know the answer to this since many myeloma patients are on Medicare. Maybe it would be covered if it was part of a clinical trial.
Good luck with your decisions moving forward. Do what makes the most sense to you since you have to deal with the consequences of what you do and what you do not do.
Mark
Having blood cancer at a young age s***s, that is for sure. Making these types of decisions is difficult. You should contact a professional to help you with these insurance issues.
"I am currently contemplating a T cell depleted allo as part of a clinical trial. I'd hate to make critical life decisions based on financial considerations, but indeed if this type of transplant would not be covered until 2 years after I leave my job for disability reasons, I may as well bite the bullet and do it now."
I am fairly certain that donor transplants are not covered for myeloma under Medicare. I have read in the past that Medicare only pays for one auto. That may have changed. I am sure if you asked at the transplant center they would know the answer to this since many myeloma patients are on Medicare. Maybe it would be covered if it was part of a clinical trial.
Good luck with your decisions moving forward. Do what makes the most sense to you since you have to deal with the consequences of what you do and what you do not do.
Mark
-
Mark
Re: Medicare, SSDI, and 2-year gap (and clinical trials)
IvanM You may not qualify now, but possibly in the future when your overall status changes. There's also the fact that you may be able to keep working. It will depend a lot of what you do and how the multiple myeloma affects you.
As far as Medicaid goes it's pretty hard to get if you have any assets at all.
As far as Medicaid goes it's pretty hard to get if you have any assets at all.
-
Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Medicare, SSDI, and 2-year gap (and clinical trials)
IvanM,
As I understand it, the ACA says that insurance companies cannot deny people insurance because of preexisting conditions. It also requires that everyone have insurance, and was the vehicle for setting up the exchanges and medal levels. Everyone can buy insurance from one of the exchanges. Some people may qualify for a subsidy from the exchanges depending on their income level and number of people in their family.
You can also buy insurance from insurance companies outside of whatever they are offering on the exchange. Regardless, my understanding is that no insurance company can deny you insurance because of your multiple myeloma.
You may want to contact the American Cancer Society. I spoke to them about a year ago about what the ACA meant for multiple myeloma patients, and they were very knowledgeable. Also -- and this sounds strange -- I've heard that there are some professional associations and/or unions that offer healthcare to their members for the cost of membership. I don't know much about it -- it's just been something I've kept in the back of my mind, but you may want to look into it.
Good luck.
Lyn
As I understand it, the ACA says that insurance companies cannot deny people insurance because of preexisting conditions. It also requires that everyone have insurance, and was the vehicle for setting up the exchanges and medal levels. Everyone can buy insurance from one of the exchanges. Some people may qualify for a subsidy from the exchanges depending on their income level and number of people in their family.
You can also buy insurance from insurance companies outside of whatever they are offering on the exchange. Regardless, my understanding is that no insurance company can deny you insurance because of your multiple myeloma.
You may want to contact the American Cancer Society. I spoke to them about a year ago about what the ACA meant for multiple myeloma patients, and they were very knowledgeable. Also -- and this sounds strange -- I've heard that there are some professional associations and/or unions that offer healthcare to their members for the cost of membership. I don't know much about it -- it's just been something I've kept in the back of my mind, but you may want to look into it.
Good luck.
Lyn
-
Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Medicare, SSDI, and 2-year gap (and clinical trials)
Lyn,
Please be clear that you cannot have exchange coverage on top of Medicare. It is simply illegal under Obamacare.
http://marketplace.cms.gov/getofficialresources/publications-and-articles/medicare-and-the-health-insurance-marketplace.pdf
In spite of it being illegal to concurrently have exchange insurance and Medicare, there is apparently some sort of provision for exchange coverage when Ivan enters into this insidious two-year coverage hole when he gets on to Medicare as an SSDI patient (see my earlier post in this thread)
Since I'm not much of a fan of medicare coverage for multiple myeloma (and it sounds like Ivan isn't much of a fan either, given their allo rules), my question then becomes what is the cost for non-exchange coverage with a pre-existing condition like multiple myeloma (i.e. would the rates just be utterly outrageous?) Provided it is affordable, this non-exchange approach might also be an option for Ivan, depending on what he finds out about exchange coverage in his somewhat unique situation.
https://myelomabeacon.org/forum/insurance-coverage-when-you-turn-65-in-the-usa-t3045.html
I thought I understood Obamacare until I started thinking about what would happen when I turn 65.
Please be clear that you cannot have exchange coverage on top of Medicare. It is simply illegal under Obamacare.
http://marketplace.cms.gov/getofficialresources/publications-and-articles/medicare-and-the-health-insurance-marketplace.pdf
In spite of it being illegal to concurrently have exchange insurance and Medicare, there is apparently some sort of provision for exchange coverage when Ivan enters into this insidious two-year coverage hole when he gets on to Medicare as an SSDI patient (see my earlier post in this thread)
Since I'm not much of a fan of medicare coverage for multiple myeloma (and it sounds like Ivan isn't much of a fan either, given their allo rules), my question then becomes what is the cost for non-exchange coverage with a pre-existing condition like multiple myeloma (i.e. would the rates just be utterly outrageous?) Provided it is affordable, this non-exchange approach might also be an option for Ivan, depending on what he finds out about exchange coverage in his somewhat unique situation.
https://myelomabeacon.org/forum/insurance-coverage-when-you-turn-65-in-the-usa-t3045.html
I thought I understood Obamacare until I started thinking about what would happen when I turn 65.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
15 posts
• Page 1 of 2 • 1, 2
Return to Insurance & Patient Assistance Programs