Hello all.
I am sorry to open another topic regarding Medicare and private insurance, but I have searched the forum on this topic and still can't resolve the issue. Threads deep in several posts have individuals in my similar situation (Tracy J), but the posts are several years old in many cases and I'm not sure those individuals would be alerted to my inquires. If there is any question whether my chemo has affected my cognitive skills, just try combining Medicare, insurance, health and financials all together. I don't know how seniors do it (figuring out Medicare, that is).
I am 56 years old, single, unemployed, receiving Social Security Disability and Long Term Disability from previous employer, and I have a Humana PPO from the open market (after expiring my COBRA eligibility). I also receive financial patient assistance.
I accept multiple myeloma is neither cheap nor convenient. This year I selected an individual high deductible PPO policy off the marketplace (the marketplace policies were HMO's and hospital affiliations which aren't conducive to my treatment regimen at Little Rock). I can tell you to the dollar (but I'll round it off) what my medical and insurance costs will be this year $12500 (12 monthly premiums of $500 and $6500 deductible). That's fairly close to one Revlimid prescription, which I also take.
SSDI is going to give me, require me to take, or whatever is the proper term, Medicare A starting this September. That's the monkey wrench in my plan.
I know I shouldn't fear Medicare, but I want to keep the exact same coverage my Humana coverage provides.
So the exam questions are:
1. Can I keep my private PPO insurance when I get Medicare A?
(a) If I can, will my primary insurance be Medicare and my secondary insurance be Humana where my benefits and coverage will be no worse than Humana by itself?
(b) If I keep private insurance and reject Medicare B (and D - Drug Plan), will I pay a late penalty for the rest of my life when I'll have to take Medicare A, B and D at age 65 or before?
(c) If I keep my private policy for several years and have to drop it for whatever reason (unaffordable, Affordable Care Act changes, preexisting condition laws change, Humana rolls into Aetna, etc.) will I be able to switch over to Medicare and pickup supplemental (medigap ) coverage at the same time?
(i) I was told Supplemental Policy can be tricky under the age of 65 because they know you are disabled and likely to have high medical costs (well yeah). It looks like some companies don't even offer supplemental coverage for under 65s, and those that do want you to enroll when you first become eligible (after 2 years on disability or when turning 65). After those enrollment periods, I understand Insurance companies underwrite your policy - which means they can reject me. Is that right?
(ii) If Supplemental carriers can reject you under 65, does that mean if I start out with company A when I have an open enrollment period (if that is correct term) it will be difficult to switch to company B sometime down the road?
(d) What would happen if Social Security decides I'm no longer disabled, hypothetical questions because everything would unravel - from losing income, to losing Medicare, to probably losing work's LTD payments, to causing a stroke. I guess I would have to find some type of employment or then I'd get my wish of buying an individual private PPO again.
(e) If I move to a different state (Florida) would I have to go through the entire Medicare procedure again, or would Kentucky be on the hook until I die? I'm sure I'd have to switch to the new state, but then again I'm under 65 and not in an open enrollment period (when Medicare is first available).
Thanks in advance for all of your replies. I anticipate most people will emphasize Medicare is really a great program, and it is. However, I was informed it will only cover one stem cell transplant and maybe not even that one if I already had tandems under private insurance (two really were enough). It's anyone's guess if Medicare or private insurance will cover CAR T-cell therapy or any future treatments. I have just been real fortunate with my options in the past and would like to keep all doors open battling the wars ahead. I'm trying to get the best coverage possible.
Thanks again.
Forums
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blueblood - Name: Craig
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 54
Re: SSDI Medicare vs. private insurance (younger patients)
Craig,
These are some complex questions. I wrestle with many of these topics since I am the guardian of an adult on SSI with complex Medicare / Medicaid insurance coverage. I also contemplate getting on to an open market plan prior to getting on to Medicare so that I can have more flexibility with my coverage as a multiple myeloma patient and so that I can have a cap on catastrophic prescription drug payments (there is no maximum out-of-pocket cap on Part D prescription drug payments like there is on open market place plans).
With the caveat that there may be some special rules for SSDI recipients in your situation, I would suggest you start with this FAQ document from the federal government's Centers for Medicare & Medicaid Services. It answers some of your first questions. In a nut, you can keep a private open market plan when you get on to Medicare (but you can't add an open market plan after you get on to Medicare) and Medicare will become the primary insurance if you have a private open market plan in effect.
I can't speak for your local offices, but both my local Social Security office and my state's Medicare hotline have fairly brilliant folks on their staff who can always answer my difficult questions. In your situation, I would suggest scheduling an appointment at your Social Security office to dive into each of these topics, and then double check their guidance with the appropriate documents that they can point you to.
These are some complex questions. I wrestle with many of these topics since I am the guardian of an adult on SSI with complex Medicare / Medicaid insurance coverage. I also contemplate getting on to an open market plan prior to getting on to Medicare so that I can have more flexibility with my coverage as a multiple myeloma patient and so that I can have a cap on catastrophic prescription drug payments (there is no maximum out-of-pocket cap on Part D prescription drug payments like there is on open market place plans).
With the caveat that there may be some special rules for SSDI recipients in your situation, I would suggest you start with this FAQ document from the federal government's Centers for Medicare & Medicaid Services. It answers some of your first questions. In a nut, you can keep a private open market plan when you get on to Medicare (but you can't add an open market plan after you get on to Medicare) and Medicare will become the primary insurance if you have a private open market plan in effect.
I can't speak for your local offices, but both my local Social Security office and my state's Medicare hotline have fairly brilliant folks on their staff who can always answer my difficult questions. In your situation, I would suggest scheduling an appointment at your Social Security office to dive into each of these topics, and then double check their guidance with the appropriate documents that they can point you to.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: SSDI Medicare vs. private insurance (younger patients)
Thanks Multibilly. As always, you never cease to amaze me with your knowledge and willingness to help and share. The article you referenced most likely has most of the answers to my concerns. I'll have to read it several times to absorb its contents. You couldn't have been any more accurate when you stated, "then double check their (SSA) guidance with the appropriate documents that they can point you to." I always do that by printing out the documents and highlighting, but wanted input from others on the forum who might have already gone done this path.
The article does raise several questions I'll have for Social Security. Is there a distinction between Individual Marketplace policies and non-Marketplace policies? No one can sell me a policy if I have Medicare, but will they renew it annually? I don't mean to pose these questions back to you, just show how helpful your reference document was. I couldn't find the same information in the "Medicare and You" booklet.
Re-reading my post, I realize Medicare wouldn't necessarily care whether I moved out of state, but the Supplemental Insurer most likely would.
Thanks again Multibilly. And if anyone out there has actually kept an individual policy after receiving Part A, I would love to hear from you too.
The article does raise several questions I'll have for Social Security. Is there a distinction between Individual Marketplace policies and non-Marketplace policies? No one can sell me a policy if I have Medicare, but will they renew it annually? I don't mean to pose these questions back to you, just show how helpful your reference document was. I couldn't find the same information in the "Medicare and You" booklet.
Re-reading my post, I realize Medicare wouldn't necessarily care whether I moved out of state, but the Supplemental Insurer most likely would.
Thanks again Multibilly. And if anyone out there has actually kept an individual policy after receiving Part A, I would love to hear from you too.
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blueblood - Name: Craig
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 54
Re: SSDI Medicare vs. private insurance (younger patients)
Craig, you surely mask your supposed lack of cognition behind cogent, organized, well-written posts.
You're correct that the open period during which Medicare supplemental insurers cannot ask any health-related questions is during the period you first qualify for Medigap coverage with SSDI, or when you turn 65. There's a 6-month window. You won't incur a Medicare penalty when you switch to Part D as long as you maintain your private prescription drug coverage.
According to this Medicare document, if your employer has 100+ employees, then your private plan is primary. If fewer, Medicare is. There's other information in that document that might be useful.
Once you get a Medigap plan (at 65), whether you can change companies or plans is state-dependent. Each state has different regulations. There are only 5 states (all in the NE I believe) where during open enrollment (your birthday), you can switch plans, companies, whatever. Some other state/s (not mine, thankfully) won't even let you change companies. Important questions to ask are how often the company increases their rates, what they base the increases on (attained age, etc), and others my cognitively-deficient brain can't recall
This is when a knowledgeable, trustworthy independent insurance agent is worth their weight. I'd talk to one in both Kentucky and Florida.
You're correct that the open period during which Medicare supplemental insurers cannot ask any health-related questions is during the period you first qualify for Medigap coverage with SSDI, or when you turn 65. There's a 6-month window. You won't incur a Medicare penalty when you switch to Part D as long as you maintain your private prescription drug coverage.
According to this Medicare document, if your employer has 100+ employees, then your private plan is primary. If fewer, Medicare is. There's other information in that document that might be useful.
Once you get a Medigap plan (at 65), whether you can change companies or plans is state-dependent. Each state has different regulations. There are only 5 states (all in the NE I believe) where during open enrollment (your birthday), you can switch plans, companies, whatever. Some other state/s (not mine, thankfully) won't even let you change companies. Important questions to ask are how often the company increases their rates, what they base the increases on (attained age, etc), and others my cognitively-deficient brain can't recall
This is when a knowledgeable, trustworthy independent insurance agent is worth their weight. I'd talk to one in both Kentucky and Florida.-
moonscape - Who do you know with myeloma?: me
- When were you/they diagnosed?: 11/2015
Re: SSDI Medicare vs. private insurance (younger patients)
Thanks, Moonscape, you emphasized the significant differences between states that I overlooked. I went through this same exercise last November / December when I was deciding what insurance to pick up this year. Looks like it is time to consult the professionals (independent insurance agent, SSA, and/or Humana).
When I received my Medicare card in the mail this week (with my Social Security Number printed for everybody to see / capture / steal - thanks). I had to chuckle when I read the 'helpful tip #3'
3. Start a file for your Medicare information. Keep all you Medicare information in one place so you can refer back to it when you need it.
My 'file' has already progressed from a file to a binder. Won't be long until it's a file cabinet. The world may be going paperless, but thanks to taxes and Medicare, I still need my printer.
I have also made a note to myself to understand how Medigap rates are set and adjusted. When I saw rate tables before, I couldn't understand the logic behind rates for different ages.
When I received my Medicare card in the mail this week (with my Social Security Number printed for everybody to see / capture / steal - thanks). I had to chuckle when I read the 'helpful tip #3'
3. Start a file for your Medicare information. Keep all you Medicare information in one place so you can refer back to it when you need it.
My 'file' has already progressed from a file to a binder. Won't be long until it's a file cabinet. The world may be going paperless, but thanks to taxes and Medicare, I still need my printer.
I have also made a note to myself to understand how Medigap rates are set and adjusted. When I saw rate tables before, I couldn't understand the logic behind rates for different ages.
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blueblood - Name: Craig
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 54
Re: SSDI Medicare vs. private insurance (younger patients)
Hi Craig,
Sorry to just now see this thread. I am going thru something similar, but my employer uses a private exchange for secondary and Part D plan selection. There is a formulary which should include Revlimid and any other specialty medications that can be checked before making a decision.
Also I read that, even if your SSDI ends, you can stay on Medicare for 96 months afterwards.
Also read that going on Medicare is considered a "life changing event," so you can make coverage changes as needed.
A great resource that can help is your myeloma clinic's social worker.
Best! BN
Sorry to just now see this thread. I am going thru something similar, but my employer uses a private exchange for secondary and Part D plan selection. There is a formulary which should include Revlimid and any other specialty medications that can be checked before making a decision.
Also I read that, even if your SSDI ends, you can stay on Medicare for 96 months afterwards.
Also read that going on Medicare is considered a "life changing event," so you can make coverage changes as needed.
A great resource that can help is your myeloma clinic's social worker.
Best! BN
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Bar-none - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/14
Re: SSDI Medicare vs. private insurance (younger patients)
I appreciate everybody's input. Here's an update.
I basically confirmed what everybody has stated. I wasn't very successful in finding supporting documents to fall back on if needed in the future. I actually used many of your inputs to educate local Social Security office, Medicare phone hotline, as well as private insurance.
I decided to 'cry uncle" and just go the Medicare / supplemental route, instead of keeping private insurance. The real benefit of private insurance, as Multibilly stated, is to cap catastrophic prescription costs.
Please, for God sake don't take my word for it. I'd hate to be wrong and steer you in the wrong direction. It is confusing.
Some thoughts for others to consider are:
Uncle
I basically confirmed what everybody has stated. I wasn't very successful in finding supporting documents to fall back on if needed in the future. I actually used many of your inputs to educate local Social Security office, Medicare phone hotline, as well as private insurance.
I decided to 'cry uncle" and just go the Medicare / supplemental route, instead of keeping private insurance. The real benefit of private insurance, as Multibilly stated, is to cap catastrophic prescription costs.
Please, for God sake don't take my word for it. I'd hate to be wrong and steer you in the wrong direction. It is confusing.
Some thoughts for others to consider are:
- Even though Medicare is a federal program, it varies depending upon your state. Therefore it is quite possible for your state to change the rules anytime.
- Some states don't require supplemental insurance companies to even offer supplemental / Medigap policies to disabled under 65 customers. SSA called it 'Right to Coverage". What are the patients suppose to do?
- Supplemental plans can offer different policies with different (read more expensive) rates to under 65 customers.
- Open enrollment periods apparently are the surest period to get supplemental / Medigap insurance. I believe even Medicare Part B from the government can have a 6-month waiting period, if you don't sign up when first eligible.
- Even though I would never knowingly be without a qualified plan, late penalties add up for Part B. I was told the penalties 'might' reset during my open enrollment at 65.
- I wasn't comfortable knowing if I could go from private insurance to Medicare with supplemental insurance without any of the above concerns. Compounding the fear is I'm eight years away from my 65th and next open enrollment and a LOT can happen in that time.
- There is no telling if I would be able to afford private insurance for eight more years. Although my private insurance benefits and premiums have remained the same for the last three years, my high deductible health plan (HDHP) as lived up to its name by increasing my deductible from 2000, to 2500, to 6450 the last three years. That's a scary trend indeed.
Uncle
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blueblood - Name: Craig
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 54
Re: SSDI Medicare vs. private insurance (younger patients)
Hi Craig,
How has going with Medicare and a supplement worked out for you?
I just received my Medicare card and am 55. My state only requires insurers to offer those of us under 65 with a supplemental Plan A (the bare bones), so I'm trying to decide if this is the best route, or if an Advantage plan would be better. Similar to your situation, I will not have another open enrollment period for 10 years, so I'm worried!
Any thoughts are appreciated. I am early in my research, and as usual the Beacon is a great resource.
Meg
How has going with Medicare and a supplement worked out for you?
I just received my Medicare card and am 55. My state only requires insurers to offer those of us under 65 with a supplemental Plan A (the bare bones), so I'm trying to decide if this is the best route, or if an Advantage plan would be better. Similar to your situation, I will not have another open enrollment period for 10 years, so I'm worried!
Any thoughts are appreciated. I am early in my research, and as usual the Beacon is a great resource.
Meg
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Meglet - Name: MAM
- When were you/they diagnosed?: 11/2014
- Age at diagnosis: 52
Re: SSDI Medicare vs. private insurance (younger patients)
I have been on Medicare since 2010 with no other insurance coverage. I have more medical and drug expenses than most people because, in addition to multiple myeloma, I am dealing with RPF, a form of fibrosis that affects the kidneys and other internal organs.
For a 3 year period, I kept a careful record of all my out-of-pocket expenses and found that the premiums for the cheapest supplemental insurance would have cost me far more money.
I must tell you that I do get co-pay assistance that helps tremendously with my myeloma drugs and treatments.
If you are eligible for the co-pay assistance plans, you might be surprised at how little other things actually cost you. Insurance companies spend a tremendous amount of money on advertising and fill their ads with ambiguous terms like, may, might, part of, help pay, etc. etc.
The Insurance companies will tell you that Medicare only pays 80% of the costs and you are liable for the other 20%. This is a half truth meant to scare the hell out of you. Medicare pays 80% of the "Medicare approved amount", not 80% of the original bill. You are liable for 20% of the "Medicare approved amount", not 20% of the initial bill.
Let me give you an example. My last Zometa treatment total charge was $1703.00. According to the insurance ads, I would owe 20%, or $340.60. Surprise-surprise, after Medicare did their adjustments and calculations, I wound up paying $24.21. Not 340 bucks like the insurance companies would like to scare you into believing. There was no need for co-pay assistance on that one. I remember a $12,000.00 MRI that wound up costing me 140 bucks.
Why do you think one of the ads insists that you arrange for your supplemental coverage before your actual Medicare start date? Because once you see just how much you are getting billed, you will know their scheme was just flim-flam.
There may be circumstances that will cause your outcome to differ. For instance, if you have a much higher income than I (I am drawing Railroad Retirement benefits). For some other reason that would keep you from qualifying for the co-pay assistance plans for drugs and chemo treatments. The area in which you live. (I am in Illinois, near St Louis, Missouri). Where you get your medical care (I go to Barnes Hospital in St Louis.)
Please check into all this thoroughly before you pay out your money for some coverage you don't need. Your results may be different but it is worth looking into before you get stampeded into a plan that does nothing for you in the long run. Seek out professional help if you need to, preferably a patient benefits advisor where you get your treatments. Never trust the insurance people to tell you the complete truth!!
Charlie (grouchy German)
For a 3 year period, I kept a careful record of all my out-of-pocket expenses and found that the premiums for the cheapest supplemental insurance would have cost me far more money.
I must tell you that I do get co-pay assistance that helps tremendously with my myeloma drugs and treatments.
If you are eligible for the co-pay assistance plans, you might be surprised at how little other things actually cost you. Insurance companies spend a tremendous amount of money on advertising and fill their ads with ambiguous terms like, may, might, part of, help pay, etc. etc.
The Insurance companies will tell you that Medicare only pays 80% of the costs and you are liable for the other 20%. This is a half truth meant to scare the hell out of you. Medicare pays 80% of the "Medicare approved amount", not 80% of the original bill. You are liable for 20% of the "Medicare approved amount", not 20% of the initial bill.
Let me give you an example. My last Zometa treatment total charge was $1703.00. According to the insurance ads, I would owe 20%, or $340.60. Surprise-surprise, after Medicare did their adjustments and calculations, I wound up paying $24.21. Not 340 bucks like the insurance companies would like to scare you into believing. There was no need for co-pay assistance on that one. I remember a $12,000.00 MRI that wound up costing me 140 bucks.
Why do you think one of the ads insists that you arrange for your supplemental coverage before your actual Medicare start date? Because once you see just how much you are getting billed, you will know their scheme was just flim-flam.
There may be circumstances that will cause your outcome to differ. For instance, if you have a much higher income than I (I am drawing Railroad Retirement benefits). For some other reason that would keep you from qualifying for the co-pay assistance plans for drugs and chemo treatments. The area in which you live. (I am in Illinois, near St Louis, Missouri). Where you get your medical care (I go to Barnes Hospital in St Louis.)
Please check into all this thoroughly before you pay out your money for some coverage you don't need. Your results may be different but it is worth looking into before you get stampeded into a plan that does nothing for you in the long run. Seek out professional help if you need to, preferably a patient benefits advisor where you get your treatments. Never trust the insurance people to tell you the complete truth!!
Charlie (grouchy German)
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Grizlump - Name: Charlie
- Who do you know with myeloma?: me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 67
Re: SSDI Medicare vs. private insurance (younger patients)
Meglet,
I see we have more in common than just a multiple myeloma diagnosis. I can only really relay my experiences as I remember them. Since I am single and don't have an employer or spouse's insurance option, I finally accepted I need to go the Medicare route now during the open window (two years on disability) and not risk late enrollment penalties. I don't believe my state requires insurance carriers to underwrite disabled individuals under 65 for Medigap or supplemental plans, so what is a person to do?
It appears individuals in Kentucky can get Advantage Medicare plans. Verify this for yourself, but I have confirmed it myself numerous times via multiple channels that my treatment center (UAMS) would prefer private insurance or original Medicare over an Advantage Plan. I could look up my contact there if it would help, but again I've talked to several employees in Little Rock. I don't think it works well in their arrangement.
I tried to sign up for a Medicare supplemental policy through a relative and I received a package in the mail asking about my medical history. Rut-roo I finally went online with another insurer and secured a policy after playing around. I had a tough time believing it, but claims are going through fine. Always have been too. I got a high deductible F plan, which I believe is going to be discontinued in a few years, but through grandfathering or other mechanisms I'll be able to keep the exact or similar plans. So not to worry
The one thing I wish I had done differently would be not getting a high deductible F plan. The reason depends on future financial assistance programs. The high deductible F plan has a lower premium which I can receive financial assistance with, but I could possible get assistance with the higher premium lower deductible F plan as well. My assistance doesn't cover diagnostics testing. so I am responsible for diagnostic testing up to my approximately $2000 plan F deductible.
I see we have more in common than just a multiple myeloma diagnosis. I can only really relay my experiences as I remember them. Since I am single and don't have an employer or spouse's insurance option, I finally accepted I need to go the Medicare route now during the open window (two years on disability) and not risk late enrollment penalties. I don't believe my state requires insurance carriers to underwrite disabled individuals under 65 for Medigap or supplemental plans, so what is a person to do?
It appears individuals in Kentucky can get Advantage Medicare plans. Verify this for yourself, but I have confirmed it myself numerous times via multiple channels that my treatment center (UAMS) would prefer private insurance or original Medicare over an Advantage Plan. I could look up my contact there if it would help, but again I've talked to several employees in Little Rock. I don't think it works well in their arrangement.
I tried to sign up for a Medicare supplemental policy through a relative and I received a package in the mail asking about my medical history. Rut-roo I finally went online with another insurer and secured a policy after playing around. I had a tough time believing it, but claims are going through fine. Always have been too. I got a high deductible F plan, which I believe is going to be discontinued in a few years, but through grandfathering or other mechanisms I'll be able to keep the exact or similar plans. So not to worry
The one thing I wish I had done differently would be not getting a high deductible F plan. The reason depends on future financial assistance programs. The high deductible F plan has a lower premium which I can receive financial assistance with, but I could possible get assistance with the higher premium lower deductible F plan as well. My assistance doesn't cover diagnostics testing. so I am responsible for diagnostic testing up to my approximately $2000 plan F deductible.
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blueblood - Name: Craig
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 54
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