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Financial discussions/tips concerning expensive treatment
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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@hopefullibrarian , @susanfalcon52 , @rjd @windyshores, @ssapp1 , and any and all others if I overlooked you - THANK YOU THANK YOU!!! For all the information!! It’s invaluable at this time for me !! I have not had the opportunity to digest it all as completely as I would like to as life is extremely busy right now and also going to a destination wedding , which will be fun, BUT between now and Christmas I need to get this under my hat, and with all this and the holidays etc. it’ll be tricky , but I am committed to it!! Maybe there will be fluff time while at this wedding where I’ll be able to actually drill down on some of this 🤞Sorry for not giving likes and hugs along the way , but they should be there. The other thing I feel I should express, and this is on me, that I’m not as technically sauvy as others and I probably don’t know how to use this Mayo app as well as I should.
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2 ReactionsEvery state has a program of volunteers to help people sort through Medicare options (I am one, and in CT the program is called CHOICES.) We are unbiased and unpaid and can help people with seeing their options. Those options are best determined using Medicare.gov website and the medications a person takes and their preferred pharmacies. Individuals can do this themselves as well. The results can show best options for advantage plans and for drug plans.
The program is SHIP- State Health Insurance Program, I think. Every state participates.
Those of you on Forteo or Tymlos — what are you paying?
Do you have a preference?
I’m taking Tymlos and I prefer it because the dose is adjustable so it has been easier to manage side effects. It is covered under my Medicare part D prescription plan and monthly cost depends on where I am in the plan ie. more expensive in donut hole vs catastrophic phase. I use CVS specialty pharmacy because they are the only pharmacy my doctor will work with. The drug manufacturer has financial assistance based on income.
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1 ReactionHello @grrranny. I moved your discussion and combined it with a discussion titled: "Financial discussions/tips concerning expensive treatment" - https://connect.mayoclinic.org/discussion/financial-discussionstips-concerning-expensive-treatment/.
I did this so you could meet other members who have posted their questions in regards to Forteo, Tymolos and Eventity and their experiences with the medication as well as payment concerns.
@grrranny, do you have the choice between those three or have you already been prescribed one? Do you have concerns with a particular medication?
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4 ReactionsThanks, Justin! Hubby will most likely be prescribed either Tymlos or Forteo when he sees an endo next month. He's had 2 spinal compression fractures in the last 2 years, with Kyphoplasty surgery. The last was after Prolia failed with his first and last injection of it.
Thank you, Ymv! Good to know about the adjustable dose feature of Tymlos, because hubby has always had the worst side effects of just about every drug he's ever taken. Not sure what his United Healthcare Advantage with Part D will cover, but we'll soon see, I guess.
What side effects have you had to deal with so far?
@grrranny , when I began taking it in June my doctor only told me that the dose was 80 mcg (8clicks) and the 1st month I was dealing with horrible headaches and low back pain. Then I found this group and dropped my dose to 6 clicks for a month. Unfortunately when I told my doctor that I was dropping the dose he was not in favor as I was still recovering from 2 pathologic fractures and he wanted full dosage. But it was my choice. The headaches improved but low back pain persisted. It took me about 3 months to work up to the full dose. I still have some issues occasionally but my body seems to have adjusted. Soon after administering the medication I still experience palpitations, lightheadedness, nausea and headache. But they abate in a few hours.
Good luck to your hubby!
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1 ReactionFORTEO 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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