Financial discussions/tips concerning expensive treatment

Posted by ans @ans, Nov 6, 2023

The last 2 days have seen some pertinent posts in regard to how and what to do to secure help for the expensive treatments/ the shots Forteo- Tymlos-Evenity. I am nearing a time of actually pulling the trigger on potentially taking Forteo. though I suppose Tymlos could be in the mix as well. This is my situation. I am currently with a commercial insurance company , Highmark, formerly and still connected to Blue Shield of NY. I am 66 and have got Medicare Part A, but not B. My husband is still working and will be for the foreseeable future ,unless something unforeseen occurs. In January of this year I called my commercial insurance company and was told at the time that it would cost me $ 1,989.40 per month under my existing plan- which is a high deductible plan. Then I contacted Forteo.com and went to savings and support and was told that I could pay $4.00 per month with a coupon up to 9,000 annually, which would be about 4 1/2 months ,leaving the remaining 8 months , which would cost me $17,904.00. That could be repeated for the second year using the $4 coupon for that time up to $9,000 ,again. Because the cost is so high I brought that up to my endo as I feel like cost does factor in one's decision. His response was," I don't want
you to be concerned with that as part of your decision making process.." I was perplexed how he could say that, but because I wasn't planning to do anything right then I let it go. Then on a follow up endo appt , with different dr, as my original one was a Fellow and had left the hospital to move on . Again, when I brought up the cost she said , "Don't worry, once you decide you are going to start treatment we have a person here that works with that end of things." As I look to potentially starting treatment after Christmas , and knowing that changes of insurance and all are abound till Dev 7th , wondering if I should possibly be signing up for Part B, or not? We will still be continuing our family plan as our youngest is 22 , and I believe we can carry her till she's 26.Not sure where and how to spend my energies in figuring this out OR to just let it fly with the response from the endo and trust they'll come up with something. And does, in that situation, essentially come down to what your income is ??
Any and all information is wanted!! THANKS SO MUCH for reading this to the end as I think there are lots of people out here that are grappling with the finance dilemma!!! .

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

@ans. I know how very complicated this is. I’m going to share my understanding as I was prescribed Evenity which is covered under Medicare Part B. I’m also going to share information I’ve learned about the costs of medications when the medication is administered by you vs. in an infusion center.

I get Evenity injections monthly at an infusion center. Because I go to an infusion center my injections are covered by Medicare Part B. I have Original Medicare so once I’ve met my deductible for the year ($233) there is no cost to me for these injections. It’s important to note that I have Original Medicare not Medicare Advantage.

For your commercial insurance company it becomes more complex. I would suggest asking your endocrinologist where you will receive your injections. Will you self-administer? Can you get them at the endocrinologist’s office? Or will you go to an infusion center or hospital to get the injections? My understanding is that where you get the injections will inform your insurance company in how the medication will be paid. Since your current endocrinologist suggested that you can work with their finance person I’m hoping that they will be very helpful to you.

I want to encourage you that you are asking all the right and very complicated questions.

I’m going to suggest a place where you can get more information. I listen to this radio show every week. Do you get Sirius radio on your car or at home? There is a show on Thursdays from 12-2 (EST) called Health Care Connect. It’s a call-in show and all they talk about is health care insurance. You might consider calling in to the show and asking your questions. Here is the link for the experts who host this show:

Health Care Connect-RubinHealth:

http://rubinhealth.com/about/

Did I provide you with some information that is useful? Will you return and let me know what you find out and how you’ll proceed?

REPLY

I urge you to do your own due diligence on the costs before starting treatment. My doc's office made assurances too - but it didn't pan out. All their insurance person can do (which I do understand) is share all suggestions/contact info they have for pharma company and other available financial avenues - but that doesn't mean you'll qualify - or that what's available will cover enough to still be doable for you.

Case in point: I have commercial insurance through my employer. I had to pay full retail price of $2700/month until I met my deductible. Then $700/month AFTER I met my insurance deductible. I was able to get Tymlos help to cover majority of 1st year, with a few months out of pocket. But now Radius tells me I may not get a 2nd card for Year 2. This floored me: why aren't they transparent about that upfront? Seems misleading to start a patient on a 2-year regimen with promise of financial help, then cut them off after year 1, halfway thru treatment.

I'll mostly likely have to abort and just switch to a maintenance drug next year. I wouldn't want anyone else to find themselves in that position.

Definitely check the financial end yourself: the doc's staff can definitely help, but they can't really promise anything.

REPLY
@naturegirl5

@ans. I know how very complicated this is. I’m going to share my understanding as I was prescribed Evenity which is covered under Medicare Part B. I’m also going to share information I’ve learned about the costs of medications when the medication is administered by you vs. in an infusion center.

I get Evenity injections monthly at an infusion center. Because I go to an infusion center my injections are covered by Medicare Part B. I have Original Medicare so once I’ve met my deductible for the year ($233) there is no cost to me for these injections. It’s important to note that I have Original Medicare not Medicare Advantage.

For your commercial insurance company it becomes more complex. I would suggest asking your endocrinologist where you will receive your injections. Will you self-administer? Can you get them at the endocrinologist’s office? Or will you go to an infusion center or hospital to get the injections? My understanding is that where you get the injections will inform your insurance company in how the medication will be paid. Since your current endocrinologist suggested that you can work with their finance person I’m hoping that they will be very helpful to you.

I want to encourage you that you are asking all the right and very complicated questions.

I’m going to suggest a place where you can get more information. I listen to this radio show every week. Do you get Sirius radio on your car or at home? There is a show on Thursdays from 12-2 (EST) called Health Care Connect. It’s a call-in show and all they talk about is health care insurance. You might consider calling in to the show and asking your questions. Here is the link for the experts who host this show:

Health Care Connect-RubinHealth:

http://rubinhealth.com/about/

Did I provide you with some information that is useful? Will you return and let me know what you find out and how you’ll proceed?

Jump to this post

@nature girl5-Forteo and Tymlos are injections taken everyday vs Evenity given 1x per month- it is the expectation that one would do it by themselves, and for obvious reasons that would need to be .
Thank you for the suggestion of the talk show . I will certainly try to tune in!!

REPLY
@katwhisperer

I urge you to do your own due diligence on the costs before starting treatment. My doc's office made assurances too - but it didn't pan out. All their insurance person can do (which I do understand) is share all suggestions/contact info they have for pharma company and other available financial avenues - but that doesn't mean you'll qualify - or that what's available will cover enough to still be doable for you.

Case in point: I have commercial insurance through my employer. I had to pay full retail price of $2700/month until I met my deductible. Then $700/month AFTER I met my insurance deductible. I was able to get Tymlos help to cover majority of 1st year, with a few months out of pocket. But now Radius tells me I may not get a 2nd card for Year 2. This floored me: why aren't they transparent about that upfront? Seems misleading to start a patient on a 2-year regimen with promise of financial help, then cut them off after year 1, halfway thru treatment.

I'll mostly likely have to abort and just switch to a maintenance drug next year. I wouldn't want anyone else to find themselves in that position.

Definitely check the financial end yourself: the doc's staff can definitely help, but they can't really promise anything.

Jump to this post

@katwhisperer -Just making sure I understand you. So those were the prices your commercial insurance would have charged you , but instead you had assist from Radius for most of that year with having to pay the $2700/month the remainder -- How many months did Radius have a coupon that covered the cost for you, or was it till they paid out a certain amount and then that was it? Can I assume that Radius is the system Tymlos has to set up to help patients, or does it also cover Forteo as well? Thank you so much for your information- cause how much something costs could be a deciding factor in which medication to go with. I think the dr's don't really get that!! Thanks again and wishing you the best as you attempt to get the better treatment for the second year!

REPLY
@ans

@katwhisperer -Just making sure I understand you. So those were the prices your commercial insurance would have charged you , but instead you had assist from Radius for most of that year with having to pay the $2700/month the remainder -- How many months did Radius have a coupon that covered the cost for you, or was it till they paid out a certain amount and then that was it? Can I assume that Radius is the system Tymlos has to set up to help patients, or does it also cover Forteo as well? Thank you so much for your information- cause how much something costs could be a deciding factor in which medication to go with. I think the dr's don't really get that!! Thanks again and wishing you the best as you attempt to get the better treatment for the second year!

Jump to this post

Radius is the maker of Tymlos. Forteo has their own program. I'm on Tymlos, so can only speak to that.

Their Patient Savings Card comes pre-loaded with a set $ amount valid for 1 year. (It offered about 7k in 2023, I think.) Once you hit that cap, no more $ is available that yr.

Everyone hits the cap at diff times: depends upon your pharmacy benefits.

Example: mine requires I meet 3k deductible before insurance pays anything. So I paid full retail price for Tymlos until I reached 3k deductible, then insurance kicked in and I paid 25% after that (around 700/month). The pharmacy applied whatever money I owed each month AFTER insurance processed my claim to my Radius savings card. The savings card zeroed out in Aug. I now pay out of pocket (700/month) for rest of 2023.

Year 2 is the issue. Radius doesn't promise a 2nd card. Fingers crossed, they offer it. But I feel like Plan B should estimate the costs for year 2 without it, just in case.

(I hope all the above makes sense?)

Lower income folks can get Tymlos free - your doctor's office may be very helpful in uncovering these programs. It's just that many people who live alone, (eligibility is usually more generous for bigger households) or those who earn just enough to cover bills without govt help may not qualify.

REPLY

I definitely think you should sign up for Medicare Part B.
Open enrollment ends December 7. Pearl Harbor Day, as my father would say. 🙂
I believe the deductible is around $260 this year snd will go up slightly in 2024. The premium is around $180.
Somewhere recently on one of these posts, I wrote about Medicare and osteoporosis drugs.
I am very pro-Medicare from 30 years of helping patients get drug coverage. My own problems with financing osteo drugs went away when I went on Medicare.
I always think of it this way: Medicare is a government plan that you have paid into your entire life. Everything else is an insurance company.
Best to you in your journey.

REPLY
@naturegirl5

@ans. I know how very complicated this is. I’m going to share my understanding as I was prescribed Evenity which is covered under Medicare Part B. I’m also going to share information I’ve learned about the costs of medications when the medication is administered by you vs. in an infusion center.

I get Evenity injections monthly at an infusion center. Because I go to an infusion center my injections are covered by Medicare Part B. I have Original Medicare so once I’ve met my deductible for the year ($233) there is no cost to me for these injections. It’s important to note that I have Original Medicare not Medicare Advantage.

For your commercial insurance company it becomes more complex. I would suggest asking your endocrinologist where you will receive your injections. Will you self-administer? Can you get them at the endocrinologist’s office? Or will you go to an infusion center or hospital to get the injections? My understanding is that where you get the injections will inform your insurance company in how the medication will be paid. Since your current endocrinologist suggested that you can work with their finance person I’m hoping that they will be very helpful to you.

I want to encourage you that you are asking all the right and very complicated questions.

I’m going to suggest a place where you can get more information. I listen to this radio show every week. Do you get Sirius radio on your car or at home? There is a show on Thursdays from 12-2 (EST) called Health Care Connect. It’s a call-in show and all they talk about is health care insurance. You might consider calling in to the show and asking your questions. Here is the link for the experts who host this show:

Health Care Connect-RubinHealth:

http://rubinhealth.com/about/

Did I provide you with some information that is useful? Will you return and let me know what you find out and how you’ll proceed?

Jump to this post

This forum really needs someone very knowledgeable about Medicare to step in and try to make sense about all this in a more generally helpful way. There seems to be too many variables from one person to another that makes each individual situation unique and also there seems to be quite a bit of simple misinformation.

For example, Medicare Part B pays 80% of the eligible amount (after annual deductible) and you or someone on your behalf pays the other 20%. Please consult your friend Mr. Google which will lead you to the authoritative HHS info.

IF you do not pay that other 20% then you have either a supplemental plan (private insurance or employee retirement plan) or another governmental program that does pay or a pharma program. The other governmental programs are state-specific and usually income-dependent....hence creating much of the variation about what and how much is covered. The pharma programs appear to be here today and gone tomorrow.

IF you go to an infusion center to receive your osteo treatment, there is a rather complicated formula for whether Medicare considers this a Part B benefit or whether the treatment is covered under your drug plan.....I do not recall all the specifics but one of the factors I do remember about Part B eligibility is whether you have had a previous fracture.

Medicare Advantage is required to cover the same medical benefits as original Medicare. How you pay for those medical benefits is different.

Medical providers are the absolute worst source of info about the financial picture of medical care. Inasmuch as they all seem to have a similarly vacuous response, I suspect there may be a course at med school that teaches a practitioner what to say when a patient brings this up as a consideration.

If I had the time at present, I would contact the Medicare Rights Center. In my opinion, they have the most reliable info about Medicare coverage and cost. Perhaps someone here could convince a staff member at that Center to be assigned to this forum to help sort out all the coverage and cost questions that come up. I have no available time to do this until after the new year.

On the bright side of those receiving Prolia treatment, the patent is set to expire in early 2025 so there may then be available a generic like what is available for Fosomax and Bonita.

REPLY
@rjd

This forum really needs someone very knowledgeable about Medicare to step in and try to make sense about all this in a more generally helpful way. There seems to be too many variables from one person to another that makes each individual situation unique and also there seems to be quite a bit of simple misinformation.

For example, Medicare Part B pays 80% of the eligible amount (after annual deductible) and you or someone on your behalf pays the other 20%. Please consult your friend Mr. Google which will lead you to the authoritative HHS info.

IF you do not pay that other 20% then you have either a supplemental plan (private insurance or employee retirement plan) or another governmental program that does pay or a pharma program. The other governmental programs are state-specific and usually income-dependent....hence creating much of the variation about what and how much is covered. The pharma programs appear to be here today and gone tomorrow.

IF you go to an infusion center to receive your osteo treatment, there is a rather complicated formula for whether Medicare considers this a Part B benefit or whether the treatment is covered under your drug plan.....I do not recall all the specifics but one of the factors I do remember about Part B eligibility is whether you have had a previous fracture.

Medicare Advantage is required to cover the same medical benefits as original Medicare. How you pay for those medical benefits is different.

Medical providers are the absolute worst source of info about the financial picture of medical care. Inasmuch as they all seem to have a similarly vacuous response, I suspect there may be a course at med school that teaches a practitioner what to say when a patient brings this up as a consideration.

If I had the time at present, I would contact the Medicare Rights Center. In my opinion, they have the most reliable info about Medicare coverage and cost. Perhaps someone here could convince a staff member at that Center to be assigned to this forum to help sort out all the coverage and cost questions that come up. I have no available time to do this until after the new year.

On the bright side of those receiving Prolia treatment, the patent is set to expire in early 2025 so there may then be available a generic like what is available for Fosomax and Bonita.

Jump to this post

@rjd- Thank you Thank you for that!!! It is all very confusing and we all have different plans and different financial status’s . I do wish this area would be handled in some way that we could understand and feel better about the choices we are to make…. BEFORE ONE is put on a med so we know what all the financial ramifications will be!!!
Thank you again !! I hope this idea is put into place!!!

REPLY
@rjd

This forum really needs someone very knowledgeable about Medicare to step in and try to make sense about all this in a more generally helpful way. There seems to be too many variables from one person to another that makes each individual situation unique and also there seems to be quite a bit of simple misinformation.

For example, Medicare Part B pays 80% of the eligible amount (after annual deductible) and you or someone on your behalf pays the other 20%. Please consult your friend Mr. Google which will lead you to the authoritative HHS info.

IF you do not pay that other 20% then you have either a supplemental plan (private insurance or employee retirement plan) or another governmental program that does pay or a pharma program. The other governmental programs are state-specific and usually income-dependent....hence creating much of the variation about what and how much is covered. The pharma programs appear to be here today and gone tomorrow.

IF you go to an infusion center to receive your osteo treatment, there is a rather complicated formula for whether Medicare considers this a Part B benefit or whether the treatment is covered under your drug plan.....I do not recall all the specifics but one of the factors I do remember about Part B eligibility is whether you have had a previous fracture.

Medicare Advantage is required to cover the same medical benefits as original Medicare. How you pay for those medical benefits is different.

Medical providers are the absolute worst source of info about the financial picture of medical care. Inasmuch as they all seem to have a similarly vacuous response, I suspect there may be a course at med school that teaches a practitioner what to say when a patient brings this up as a consideration.

If I had the time at present, I would contact the Medicare Rights Center. In my opinion, they have the most reliable info about Medicare coverage and cost. Perhaps someone here could convince a staff member at that Center to be assigned to this forum to help sort out all the coverage and cost questions that come up. I have no available time to do this until after the new year.

On the bright side of those receiving Prolia treatment, the patent is set to expire in early 2025 so there may then be available a generic like what is available for Fosomax and Bonita.

Jump to this post

@rjs. You wrote "This forum really needs someone very knowledgeable about Medicare to step in and try to make sense about all this in a more generally helpful way. There seems to be too many variables from one person to another that makes each individual situation unique and also there seems to be quite a bit of simple misinformation."

I will ask if there is someone from Mayo Clinic to come in to our discussions for topics like this. At the present time I think your suggestions are very helpful including contacting the Medicare Rights Center. Do you have a phone number or website to share for this?

REPLY
@naturegirl5

@rjs. You wrote "This forum really needs someone very knowledgeable about Medicare to step in and try to make sense about all this in a more generally helpful way. There seems to be too many variables from one person to another that makes each individual situation unique and also there seems to be quite a bit of simple misinformation."

I will ask if there is someone from Mayo Clinic to come in to our discussions for topics like this. At the present time I think your suggestions are very helpful including contacting the Medicare Rights Center. Do you have a phone number or website to share for this?

Jump to this post

I have a Medicare Advantage Plan through BC/BS but Evenity is paid for by Medicare part B because it is given in the office. Charge to me is 80% of the cost until I hit "catastrophic," and I am close! I'll let you all know what happens in the donut hole, where I currently am!

REPLY
Please sign in or register to post a reply.