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!!! .

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@vkmov

FORTEO COSTS UPDATE. I've been prescribed Forteo and posted some comments early on about where to get a discount. I have Medicare Part A/B and FEP Blue (Blue Cross for Federal retirees). Long story short, I was able to get a discount card bringing my copay of $777+ down to $4/month by going to Forteo.com and downloading the prescription discount. I gave that info to my pharmacy and picked up the first months' supply for $4. However, starting January 2024, as a federal retiree, I have been shifted to Medicare Part D, in addition to my FEP Blue for prescription drugs. Since Medicare does not accept discount cards, my copay will go to $60/month thereafter. They were very helpful and not difficult to reach at all. If you want to get information specific to your situation, here is their contact information:

FORTEO CONNECT - Call 866-436-7836 (Mon-Fri 8a-10pm Eastern Time) if you have any questions at all; Website: Forteo.com for the discount download card if you have commercial insurance;
LILLY CARES - Call 800-545-6962; (Mon-Fri 8a-6pm Eastern Time); Website: Lillycares.com - if you have Medicare and are being told it isn't covered or your copay is too unaffordable. They said they will call your insurance and work something out. They also said they have medically educated staff there (nurses) to talk with about any side effects you may be having and they are required by law to report them to the FDA. If you have problems getting your medicine refilled or can't reach your pharmacy, she said they will contact your pharmacy directly and get it for you.

I spoke with someone at ForteoConnect who provided me with all this information but I haven't called Lilly Cares so I can't personally confirm all that was promised yet. I'm just passing along the information for your use if needed.

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You got me wondering if the manufacturer of the generic for Forteo might have an assistance program. Alvogen offers a savings card for Teriparatide. Per the Terms and Conditions, "Eligible patients can pay as little as $0 and receive up to $12,000 off the patient’s co-pay or out of pocket expenses annually..."

Here's the link: https://www.alvogenteriparatide.com/savings-program

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@hopefullibrarian

You got me wondering if the manufacturer of the generic for Forteo might have an assistance program. Alvogen offers a savings card for Teriparatide. Per the Terms and Conditions, "Eligible patients can pay as little as $0 and receive up to $12,000 off the patient’s co-pay or out of pocket expenses annually..."

Here's the link: https://www.alvogenteriparatide.com/savings-program

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I’m asking a question to ALL. I’ve been somewhat confused by the whole Forteo vs Teraparatide. I’ve seen them talked about as one and the same , AND then other times I feel like Forteo is the first line of the drug and Teraparatide is a generic of Forteo. Please inform, who decides which one to use , if there is a difference, and of course if Teraparatide is a generic it would be cheaper right?? Any difference in the quality and results of the two , if they are in fact different prescriptions. Many thanks!!

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@ans

I’m asking a question to ALL. I’ve been somewhat confused by the whole Forteo vs Teraparatide. I’ve seen them talked about as one and the same , AND then other times I feel like Forteo is the first line of the drug and Teraparatide is a generic of Forteo. Please inform, who decides which one to use , if there is a difference, and of course if Teraparatide is a generic it would be cheaper right?? Any difference in the quality and results of the two , if they are in fact different prescriptions. Many thanks!!

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Further…..So I just saw that Teraparatide is the active ingredient in the drug Forteo, so where does that lead me in my previous question ????

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@ans

Further…..So I just saw that Teraparatide is the active ingredient in the drug Forteo, so where does that lead me in my previous question ????

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Normally generics are cheaper. You'd have to check with your pharmacy. Also not all insurance policies cover both, so that's another thing to check. In the end, which one you take should be up to you.

Here's what Wikipedia says about the two:
"Biosimilars
Recombinant teriparatide is sold by Eli Lilly and Company under the brand names Forteo and Forsteo. In June 2020, Alvogen, Inc, Pfenex Inc.'s commercialization partner, launched teriparatide injection (Bonsity) in the United States. Teriparatide injection was developed by Pfenex Inc and approved by the US Food and Drug Administration (FDA) in October 2019.[1] Teriparatide injection is pharmaceutically equivalent to Forteo (that is, has the same active ingredient in the same strength, dosage form and route of administration) and has been shown to have comparable bioavailability. These characteristics allowed the product to be approved under a 505(b)(2) NDA for which Forteo was the reference drug. It may provide a lower-cost teriparatide option for increasing bone density in patients at high risk for fracture, and is FDA-approved for the same indications as Forteo, which means it can be used for the same patients as Forteo, including new patients and those currently responding to treatment.[25] "

You can access the full Wikipedia page here: https://en.wikipedia.org/wiki/Teriparatide

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To decide whether to get Part B of Medicare, I suggest you go to this site, read what Part A and B covers, and if you have further questions, call Medicare: https://www.medicare.gov/what-medicare-covers/what-part-a-covers
Regarding coverage of Forteo, try calling Forteo CONNECT at 866-436-7836 with any questions at all and if it is unaffordable. My understanding is they will explain what is covered under your particular insurance. In terms of whether Forteo or Tymlos is the med to take, I've noticed many people say that Tymlos injections allow the user to use smaller doses (after talking with their doctors) as it has a series of "clicks" available; Forteo does not have that option. Hope this helps.

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For anyone considering Evenity, I thought I'd share my experience with Amgen Safety Net Foundation. I also put this post in the "Any leads on Rx payment assistance for under 65's?" conversation.

I'd like to have Tymlos treatment, but that's not on the cards for me at the moment. I decided to try for Evenity instead. My doctor is completely on-board, so I started the process of applying to Amgen Safety Net.

To be eligible, if you're under 65 and have lived in the US for at least the last 6 months, you must either be uninsured or have commercial insurance that does not supply coverage for Evenity, and your household income must to be < 300% of the federal poverty level.

It's all surprisingly easy. I called them at 866-264-2778 and completed the application over the phone. It only took about 10 minutes, maybe less.

Now all that I need to do is get a denial of coverage on letterhead from the insurance company, and sign consent and authorization forms before faxing everything to the Foundation.

You might be interested to know how I'm getting the denial of coverage letter. My doctor is submitting a prior authorization even though we already know that Evenity is non-formulary. When they get the denial letter, I'll go and pick it up. Fingers crossed that the insurance company doesn't actually authorize the treatment. That would throw a wrench into my plan.

If you decide to apply, be aware that the consent and authorization forms give the foundation and their partners access to your health records. I'm not thrilled about that part, but it's a trade-off.

I'll post an update with what happens next.

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For help paying for Forteo Contact:
The RX Advocates
844-559-8332
9am-5pm Eastern Time

They helped me.
The cost for me is $70/month

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@hopefullibrarian

For anyone considering Evenity, I thought I'd share my experience with Amgen Safety Net Foundation. I also put this post in the "Any leads on Rx payment assistance for under 65's?" conversation.

I'd like to have Tymlos treatment, but that's not on the cards for me at the moment. I decided to try for Evenity instead. My doctor is completely on-board, so I started the process of applying to Amgen Safety Net.

To be eligible, if you're under 65 and have lived in the US for at least the last 6 months, you must either be uninsured or have commercial insurance that does not supply coverage for Evenity, and your household income must to be < 300% of the federal poverty level.

It's all surprisingly easy. I called them at 866-264-2778 and completed the application over the phone. It only took about 10 minutes, maybe less.

Now all that I need to do is get a denial of coverage on letterhead from the insurance company, and sign consent and authorization forms before faxing everything to the Foundation.

You might be interested to know how I'm getting the denial of coverage letter. My doctor is submitting a prior authorization even though we already know that Evenity is non-formulary. When they get the denial letter, I'll go and pick it up. Fingers crossed that the insurance company doesn't actually authorize the treatment. That would throw a wrench into my plan.

If you decide to apply, be aware that the consent and authorization forms give the foundation and their partners access to your health records. I'm not thrilled about that part, but it's a trade-off.

I'll post an update with what happens next.

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Update: Unfortunately, my insurance company approved the prior authorization that my doctor submitted. I know it sounds strange, but now, because they approved it, even though my income is below the 300% of the federal poverty level, I'll have to pay my policy's max-out-of-pocket cost for Evenity. I need to make a quick decision on what to do within the next two weeks in order to get a full 12 months of treatment before the insurance clock resets again on Jan. 1st.
I'm waiting for a reply from my endocrinologist about my recent BTM results, because Evenity may not even be the best route for me to take. I certainly don't want to lay out all that money, which has to come from my savings, if there's a better option for me.

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I am paying $428 for Evenity given in the office. I am going to find out the cost if I do it myself at home.

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@hopefullibrarian

Update: Unfortunately, my insurance company approved the prior authorization that my doctor submitted. I know it sounds strange, but now, because they approved it, even though my income is below the 300% of the federal poverty level, I'll have to pay my policy's max-out-of-pocket cost for Evenity. I need to make a quick decision on what to do within the next two weeks in order to get a full 12 months of treatment before the insurance clock resets again on Jan. 1st.
I'm waiting for a reply from my endocrinologist about my recent BTM results, because Evenity may not even be the best route for me to take. I certainly don't want to lay out all that money, which has to come from my savings, if there's a better option for me.

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Is it possible that between the submission of the prior authorization request in 2023 and the approval in 2024 is that your insurer has made coverage changes and now covers the Evenity?

Could your insurance also have changed coverage of any other med you were interested in before deciding to go on Evenity?

You do not say what insurance you have as someone under 65. Is it employer provided insurance or Obama-care?

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