I hope someone can help me with this. I am so confused by all these posts talking about how much drugs cost each month.
I am currently looking at Affordable Healthcare ("ACA") plans, and for prescription coverage, I see many where the costs of drugs are included in the maximum out-of-pocket and drugs like Revlimid and dex are covered.
If the maximum individual out-of-pocket is like $6850, that would be the most I pay/year for EVERYTHING, right? How is it that I see posts on here with people paying $10,000 / month for drugs like Revlimid?
I thought a deductible is what I am paying before coverage kicks in. THEN, I am paying my co-insurance up to my maximum out-of-pocket. Then, after that, the insurance companies pays everything. Right? Am I missing something here?
If I am incorrect in my understanding of the terms, I will just elect my COBRA coverage at $2,000 / month, but it seems like even the most expensive plans on the AHA page are a better deal than my COBRA.
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Re: Out of pockets expenses & Affordable Care plans
Hey Kuntrygal,
Your understanding is generally correct. But the key thing to verify is that the drug in question is a "covered" drug. More than likely, your ACA plan covers Revlimid. But if the drug is not covered by an ACA plan, then the cost of the non-covered drug isn't limited by your annual out-of-pocket maximum. Note that the $6850 out-of-pocket maximum is the most any ACA plan can levy, but there are ACA plans that have lower out-of-pocket maximums. It's all a trade-off of premium, co-insurance, deductible and out-of-pocket maximum costs that you should try to spreadsheet out when selecting the best plan.
You hear stories of folks having to spend a lot more than standard ACA out-of-pocket maximums because they might be on Medicare and may not have chosen the best Part D plan, or they may be on a non-ACA plan which can have different out-of-pocket maximums for pharmacy and non-pharmacy expenditures.
The other issue that comes into play is that oral cancer drugs like Revlimid aren't treated the same way as intravenously administered cancer drugs (which generally have better out-of-pocket costs) by the insurance industry – which is a real travesty with the American healthcare system. This will become an even bigger insurance challenge for multiple myeloma patients as more and more oral drugs become available to us.
This is a good thread that touches on many people's experience with paying for Revlimid.
https://myelomabeacon.org/forum/the-cost-of-revlimid-what-do-you-pay-t123.html
Your understanding is generally correct. But the key thing to verify is that the drug in question is a "covered" drug. More than likely, your ACA plan covers Revlimid. But if the drug is not covered by an ACA plan, then the cost of the non-covered drug isn't limited by your annual out-of-pocket maximum. Note that the $6850 out-of-pocket maximum is the most any ACA plan can levy, but there are ACA plans that have lower out-of-pocket maximums. It's all a trade-off of premium, co-insurance, deductible and out-of-pocket maximum costs that you should try to spreadsheet out when selecting the best plan.
You hear stories of folks having to spend a lot more than standard ACA out-of-pocket maximums because they might be on Medicare and may not have chosen the best Part D plan, or they may be on a non-ACA plan which can have different out-of-pocket maximums for pharmacy and non-pharmacy expenditures.
The other issue that comes into play is that oral cancer drugs like Revlimid aren't treated the same way as intravenously administered cancer drugs (which generally have better out-of-pocket costs) by the insurance industry – which is a real travesty with the American healthcare system. This will become an even bigger insurance challenge for multiple myeloma patients as more and more oral drugs become available to us.
This is a good thread that touches on many people's experience with paying for Revlimid.
https://myelomabeacon.org/forum/the-cost-of-revlimid-what-do-you-pay-t123.html
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Out of pockets expenses & Affordable Care plans
My understanding is if you have a high deductible health plan, then the maximum out of pocket (in many cases the same as the deductible) is the most you will have to pay in any given year, as long as you stay in-network - including your prescription charges. But that is only true if, as previously stated, the prescriptions are covered in the pharmacy plan.
Looking back on things, I think I stayed with my COBRA too long. I now have an individual PPO which I did not acquire through any ACA marketplace. Just because your oncologist isn't listed under In-Network Physician Finder, don't assume it is true. I checked numerous times with the clinic and Humana insurance before deciding on my plan. I believe insurance companies are pretty comfortable not listing all oncologists on the physician finders website to discourage cancer patients from enrolling. I was told numerous times my clinic wasn't in-network, but I had been going there for 2 years under my COBRA plan. But, as Bugs Bunny would say, "Be berry berry careful"
Looking back on things, I think I stayed with my COBRA too long. I now have an individual PPO which I did not acquire through any ACA marketplace. Just because your oncologist isn't listed under In-Network Physician Finder, don't assume it is true. I checked numerous times with the clinic and Humana insurance before deciding on my plan. I believe insurance companies are pretty comfortable not listing all oncologists on the physician finders website to discourage cancer patients from enrolling. I was told numerous times my clinic wasn't in-network, but I had been going there for 2 years under my COBRA plan. But, as Bugs Bunny would say, "Be berry berry careful"
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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: Out of pockets expenses & Affordable Care plans
Blueblood mentions the important caveat of in-network versus out-of-network. All bets are indeed off for out-of-pocket maximums when one goes out-of-network on an ACA plan.
I also agree that the network physician finder engines for insurance providers are often inaccurate. The flip side to what Blueblood says is also true - namely don't assume that your doctor or facility is truly in network unless you actually check with them.
I also agree that the network physician finder engines for insurance providers are often inaccurate. The flip side to what Blueblood says is also true - namely don't assume that your doctor or facility is truly in network unless you actually check with them.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Out of pockets expenses & Affordable Care plans
Hi Kuntrylover,
I agree with what Multibilly and Blueblood have posted. You'll need to do a lot of research before you make the decision.
We also could have continued COBRA at roughly $2,000/month but decided to get our 2016 insurance through the Exchange. We had Blue Cross thru COBRA and were very happy with it, so we bought Blue Cross on the Exchange. We now have lower premium costs (after subsidies) because we both stopped working in 2015 and our incomes are lower now. Also, if you qualify for financial assistance through the Leukemia and Lymphoma Society, or Patient Access Network, they will help pay for multiple myeloma drugs' deductibles and copays. And my husband's prescriptions pretty much blew past the deductible/copay/out of pocket maximum in 2 months. Our deductibles / copays are MUCH higher now than when we were on my employer's COBRA but overall, we are getting his care and prescriptions covered without any issues. (Things have actually turned out better than my worst-case scenario budgeting I did when trying to determine if I could also stop working, since I'm 60 and husband is 63 and we aren't eligible for Medicare.)
My husband's hematologist was not listed in the Exchange Blue Cross Blue Shield search engine yet we confirmed she was in fact a covered provider. All 2016 services have been processed and paid (per deductible, copay rules, etc) without any issues.
Additionally, I would add that if your drug is not listed in the insurance company's drug formulary, your doctor might be able to appeal it and get it covered. (If insurance still denied it, then if you took the drug, you would be 100% responsible for all costs).
Our Exchange-purchased Blue Cross Blue Shield originally denied my husband's Ninlaro because it was not in their formulary. His doctor appealed and then BCBS approved the Ninlaro – without any treatment delays at all. BCBS applied it to my husband's deductible, copay, and out of pocket maximums just like other services it has paid. At this point, my husband has met his annual out of pocket max.
I don't know if all insurances operate the same way, but from this point on BCBS will pay 100% of my husband's services. However, when I need a prescription or see a doctor, everything will go to my deductible/copay/out of pocket maximum, etc. because we have a family policy.
Best wishes,
Chris M.
I agree with what Multibilly and Blueblood have posted. You'll need to do a lot of research before you make the decision.
We also could have continued COBRA at roughly $2,000/month but decided to get our 2016 insurance through the Exchange. We had Blue Cross thru COBRA and were very happy with it, so we bought Blue Cross on the Exchange. We now have lower premium costs (after subsidies) because we both stopped working in 2015 and our incomes are lower now. Also, if you qualify for financial assistance through the Leukemia and Lymphoma Society, or Patient Access Network, they will help pay for multiple myeloma drugs' deductibles and copays. And my husband's prescriptions pretty much blew past the deductible/copay/out of pocket maximum in 2 months. Our deductibles / copays are MUCH higher now than when we were on my employer's COBRA but overall, we are getting his care and prescriptions covered without any issues. (Things have actually turned out better than my worst-case scenario budgeting I did when trying to determine if I could also stop working, since I'm 60 and husband is 63 and we aren't eligible for Medicare.)
My husband's hematologist was not listed in the Exchange Blue Cross Blue Shield search engine yet we confirmed she was in fact a covered provider. All 2016 services have been processed and paid (per deductible, copay rules, etc) without any issues.
Additionally, I would add that if your drug is not listed in the insurance company's drug formulary, your doctor might be able to appeal it and get it covered. (If insurance still denied it, then if you took the drug, you would be 100% responsible for all costs).
Our Exchange-purchased Blue Cross Blue Shield originally denied my husband's Ninlaro because it was not in their formulary. His doctor appealed and then BCBS approved the Ninlaro – without any treatment delays at all. BCBS applied it to my husband's deductible, copay, and out of pocket maximums just like other services it has paid. At this point, my husband has met his annual out of pocket max.
I don't know if all insurances operate the same way, but from this point on BCBS will pay 100% of my husband's services. However, when I need a prescription or see a doctor, everything will go to my deductible/copay/out of pocket maximum, etc. because we have a family policy.
Best wishes,
Chris M.
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Chris M
Re: Out of pockets expenses & Affordable Care plans
Kuntrylover,
I couldn't agree with Chris M. more, specifically her statement "Things have actually turned out better than my worst-case scenario budgeting I did."
I stayed with a Humana PPO, which I couldn't 'find' available on Kentucky's Marketplace, so I went with an Individual Policy. My greatest benefit from the ACA was the waiver of 'pre-existing conditions' during open enrollment.
Be sure to follow Chris M's lead to PAN and LLS.
Good Luck,
Craig
I couldn't agree with Chris M. more, specifically her statement "Things have actually turned out better than my worst-case scenario budgeting I did."
I stayed with a Humana PPO, which I couldn't 'find' available on Kentucky's Marketplace, so I went with an Individual Policy. My greatest benefit from the ACA was the waiver of 'pre-existing conditions' during open enrollment.
Be sure to follow Chris M's lead to PAN and LLS.
Good Luck,
Craig
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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: Out of pockets expenses & Affordable Care plans
I'm sorry for the delay in responding.
Thank you so much for the information. I did the search where you can enter drug names and most seemed to be covered under at least a few plans, but others weren't (Velcade? Kyprolis?). It's hard because I have not yet started treatment. I am only smoldering, but I want to make sure things are covered should I need to start treatment prior to finding another full-time position.
I appreciate the input and information. I have a feeling I will be spending a good amount of time on the phone during the next few weeks. Uff!
Thank you so much for the information. I did the search where you can enter drug names and most seemed to be covered under at least a few plans, but others weren't (Velcade? Kyprolis?). It's hard because I have not yet started treatment. I am only smoldering, but I want to make sure things are covered should I need to start treatment prior to finding another full-time position.
I appreciate the input and information. I have a feeling I will be spending a good amount of time on the phone during the next few weeks. Uff!
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kuntrylover - Name: Kuntrygal
- Who do you know with myeloma?: Me
Re: Out of pockets expenses & Affordable Care plans
Kuntrylover,
Note that sometimes one needs to use some of the generic or non-trademark names when looking for a drug on a formulary list. Velcade may be listed as bortezomib. Kyprolis may be listed as carfilzomib, and so on. Sometimes you may also need to contact the insurance company itself on the phone when checking on coverage for specialty cancer drugs (especially IV-administered drugs).
Note that sometimes one needs to use some of the generic or non-trademark names when looking for a drug on a formulary list. Velcade may be listed as bortezomib. Kyprolis may be listed as carfilzomib, and so on. Sometimes you may also need to contact the insurance company itself on the phone when checking on coverage for specialty cancer drugs (especially IV-administered drugs).
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Out of pockets expenses & Affordable Care plans
One last point. There is a limited time when you can enroll in an ACA plan. First of the year is an open enrollment period. One of the other qualifying events includes loss of COBRA. Don't let your window of enrollment close.
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Anonymous
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