Anyone on Medicare have a very expensive prescription?

My biggest concern is actually getting someone to cover the drug. Once covered, the cost will probably be manageable. My thought is to see if I can get a plan to agree to cover the drug before I sign up, but that seems ridiculous from their point of view. Why would they want to encourage me to select their plan when they’ll undoubtedly lose money on me due to this one drug. Ugh.
You should be able to know up front if and how they cover any specific drug. My plan sends me a new formulary list each year. Last year, they ceased to cover Jardiance but advised me that they would cover Farxiga if I have my doctor change my script to that drug. SO, up front, I knew exactly what they would pay for my expensive drug(s). YMMV and good luck!
 
If you find a plan that covers it, be aware that coverage might change the following year.
 
FWIW, my wife's drug (Tagrisso) also comes from a specialty pharmacy, and has limitations, but they didn't give us any grief since it was prescribed by her oncologist and has no generic equivalent.
 
If you find a plan that covers it, be aware that coverage might change the following year.
Yes. That is exactly what happened to me with my SGLT2 inhibitor. The good news is that I now pay less for the drug they cover this year. Also fortunate is the fact that my doctor didn't seem to care which one I took.

For MOST "expensive" drugs, MOST insurance companies will find a way to cover the drug OR find a replacement (such as a "me too" drug or or otherwise similar drug.) You will likely become familiar with the term "tier" which simply gives you an idea just how "special" (aka how high a list price) your drug is. The insurance may say something like "We cover all tier 2 drugs at 18% of list price." I don't think that will change until the next year (if at all.) YMMV
 
You should be able to know up front if and how they cover any specific drug. My plan sends me a new formulary list each year. Last year, they ceased to cover Jardiance but advised me that they would cover Farxiga if I have my doctor change my script to that drug. SO, up front, I knew exactly what they would pay for my expensive drug(s). YMMV and good luck!
This came out yesterday about 10 new drugs that has been negotiated.

 
I am surprised that the manufacturer would give a discount to a Medicare patient... any of my drugs that the manufacturer has a program specifically excludes people on Medicare...
 
I am surprised that the manufacturer would give a discount to a Medicare patient... any of my drugs that the manufacturer has a program specifically excludes people on Medicare...
I believe that’s typical when the drug is covered. Being that this one is not covered by Medicare I don’t think those rules apply.
 
You may want to check with the manufacturer if they have a program that will pay for it. My friend is on Medicare and on Humira and she does not want to pay her copay. Each year she would appeal to the manufacturer to waive her co-pay. There is an income qualifier and their income is on the cusp of the cutoff but she has managed to get the manufacturer to waive her co-pay. Every year she submits all of her and her husband's medical expenses and tax statements, and so far so good. This must have been her 5th year on Humira and it does not cost her anything.
 
You'll pay the deductible + $2000 next year.

I found that talking to the CS people was a waste of time. They read from a script.

I choose Silverscript AARP/UHC and went from there. There were some free alternatives this year, but I stayed with previous choice.

During the last 3 years there have been signicant changes to the drug part.
Couldn't edit the post, but additional infromation is that my drug is listed, and is in the cancer category. Since these rules and regs are constantly changed, it's best to talk to your provider, or even better the insurance person in their office. They may have additional information on what others are doing.

It's possible that your drug will get added to "covered" if it belongs to another special category of drugs, which I couldn't find definition for.

Ask if there is an alternative drug that was used in the past. Yes, there isn't a generic, but what did patients take before Tavneos for treatment?

Another possibility is an additional drug with your infusion. That way it may fall under Part B.

Lastly, you could contact your congressperson(s) and describe this problem. There may be other paths for you.
 
Cancer drugs administered in a doctor’s office/clinic (like infusion) are generally covered by Medicare Part B.
 
I believe that’s typical when the drug is covered. Being that this one is not covered by Medicare I don’t think those rules apply.
I hope you can get on a program with the company. Let us know how it turns out.
 
I hope you can get on a program with the company. Let us know how it turns out.
I’ll report back but it won’t be until October, when the new plans come out and I can actually apply for coverage.
 
Manufacturer site: Cost and Copay Information | TAVNEOS® (avacopan)

Assistance program for my cancer drug was only available with group insurance. Just remembered that.
Yes, I expect there will be new hurdles as I switch from my employer sponsored retiree health plan over to Medicare. I may be surprised in a good way. DW is on Medicare and she actually pays less now than under my retiree program. They basically pay a stipend that more than covers the gap coverage. The pharmacy stuff is all new though because DW isn’t on any prescriptions.
 
Yes, I expect there will be new hurdles as I switch from my employer sponsored retiree health plan over to Medicare. I may be surprised in a good way. DW is on Medicare and she actually pays less now than under my retiree program. They basically pay a stipend that more than covers the gap coverage. The pharmacy stuff is all new though because DW isn’t on any prescriptions.
Lots of monsters are hiding in the Part D programs of providers>:D.

I have been on it for 15 years and I could write a book about the mess my wife's situation was with very expensive breathing drugs and no generics.
 
It was mentioned in another thread that some people travel to other countries like Canada, or a EU country to get their prescription drugs. Maybe it’s a possibility for the OP?
 
Yes, I expect there will be new hurdles as I switch from my employer sponsored retiree health plan over to Medicare. I may be surprised in a good way. DW is on Medicare and she actually pays less now than under my retiree program. They basically pay a stipend that more than covers the gap coverage. The pharmacy stuff is all new though because DW isn’t on any prescriptions.
In general, MC was much cheaper than my empl*yee and then retiree health care benefit. The part D IS complicated and is not all that cheap - especially for name brand drugs with high list prices.

Oh and you DO need a Medigap policy to go with your MC Part B.
 
My biggest concern is actually getting someone to cover the drug. Once covered, the cost will probably be manageable. My thought is to see if I can get a plan to agree to cover the drug before I sign up, but that seems ridiculous from their point of view. Why would they want to encourage me to select their plan when they’ll undoubtedly lose money on me due to this one drug. Ugh.

Three week old thread, but I just came upon it. If you're in a hurry, skip to the last paragraph.

Yours is another case of "you've got to buy it and try it before you find out what you bought" in the medical industry.

When it comes to picking a Part-D company, at least they show you the formulary beforehand. But if it's not in the formulary, or, as in the case in this thread [ Medicare Part-D ... Any Off-Label Experiences? ] it's in the formulary, but off-label, you can't know for certain what they'll do when the actual claim is made.

The case of off-label and the case of not being in the formulary might seem different, but similar in that there's a risk that the patient would be on the hook for the multi-thousand per month drug at the whim of the company's procedures.

Something I noticed is that if you have an expensive drug, the cost to the patient is exactly the same across all Part-D providers because of the way the limits work. This means that you choose (well, I choose) a Part-D provider based on customer service and monthly premium. I was going to sign-up for the "$0/month" one, but figured there HAD to be a catch, so I signed-up for the $5/mo one. But all in all of the research I did, I never found out if one provider had a better record on the escalation process for off-label than any other. Since then, I've become much less likely to even need the expensive drug (yippee!)

One thing you could try is find the discussion group for people that are going to be prescribed this drug, and find out "though the grape vine" if any of those people are using a Part-D provider that is working. Some people aren't comfortable with it, but often there's a FaceBook group that may be joined for people facing the same medical situation.
 
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