Insurance Disaster!

[elaineinqueens]

Hello. I have been on this site for years and find the exchange of information so helpful, as well as reading about the struggles we all seem to share, but I have rarely posted. Something happened last week that has prompted me to post because I am so worried I can't even sleep.

I am on Medicare (I'm 66) but my prescription insurance is through my husband's union. He is a retired NYC Detective. Until I was 65, my generic Copaxone was paid for in full by NYC. That ended when I turned 65. The union's prescription insurance was a $500 monthly co-pay - alot but could manage it. Then they changed prescription insurance companies and the copay tripled to almost $1500 monthly! Could not afford that! Found that Glatopa (a generic of Copaxone) had a copay assistance that I qualified for. It was a maximum of $9,000 annually. That would cover 6 months of the copays. I actually had a 3 month supply of extra med so I figured that I would only need to pay the $1500 3 times.

That was my plan for 2024, then I would switch to a Medicare Part D for 2025. But after I filled my January prescription, I found out that we had maxed out at the cap the union's insurance had. The union plan goes from July 1 to June 30. By the end of December we hit the cap of $20,000! So the specialty pharmacy submitted my January prescription for copay assistance and that was $4,000. Almost half of what Glatopa covers for the year. And even worse than that, since we are capped, we are NOT COVERED FOR ANY OTHER PRESCRIPTIONS until July! Basically we have no prescription insurance for the next 6 months. For anything. And even when it restarts, I will only have enough copay assistance for 4 refills. And I don't want to fill more than that because I would max out the insurance again by December.

If they had told me this before filling it, I would've not filled it.

Now, I will have to try to stretch 8 months of Glatopa for 12 months. That would mean skipping 1 dose a week. I have no other choice. If I had known this a few weeks ago I would've switched to Part D but too late now.

I see my neurologist in 2 weeks and will talk with her about this. But really, what can she say? She cannot magically make 4 months of Glatopa appear for me. Nothing can.

I also feel like I should've paid more attention and been aware of this cap. I am usually on top of these things but this one slipped by me. I feel awful because it affects my husband, too. I hope his meds will be fairly affordable w/o the insurance paying for the next 6 months. I have a few other meds also, but maybe they will be affordable. I worry about something unforeseen though. And worry about all of this!

I am sorry for this long ranting, whining post, but I just needed to get this out. Thanks for listening.

[CatsandCars]

Elaineinqueens, I'm so sorry to hear what you're going through. I don't think I would have known any better, either. I am still covered by my husband's insurance through work in addition to Medicare, but wow! That is a complex situation you have going on there, and it's not your fault. So don't beat yourself up!I know changing meds is a serious thing, but maybe you could ask your neurologist if you would be a good candidate for Aubagio. It comes in a generic that's very affordable when purchased from Mark Cuban's Cost Plus Pharmacy. I know there is always a chance that a medication isn't a good fit for everyone, but Aubagio is an effective drug in pill form.

I wish you the very best. Please let us know how things work out for you!

[CatsandCars in reply to CatsandCars]

There may be other affordable drugs like the generic for Tecfidera, as well. MSAA and the National MS Society can also talk to you and may be able to direct you to help paying for drugs.

NMSS 1-855-676-6326

MSAA 1-800-532-7667

Please don't worry. There are solutions out there, and it will work out somehow.😊

[elaineinqueens in reply to CatsandCars]

Thank you so much for your suggestions and your kind and comforting words! ❤️

[CatsandCars in reply to elaineinqueens]

You're very welcome. Insurance woes have kept me up at night a various times over the years, too. So happy I could try to help.😊

[bxrmom]

elaineinqueens I am so very sorry that you are going through this. Please call the MS Society and MSAA to see what they can help you with. Please keep us updated when you can.

[elaineinqueens in reply to bxrmom]

I will definitely call the MS Society and MSAA, that is a great idea. I don't know why I didn't think of that, I think my brain shut down from all the stress!

Thank you so much! ❤️

[bxrmom in reply to elaineinqueens]

Stress doesn't alow us to think correctly sometimes. Keep us updated when you can

[CynthiaS]

There is program called the assistance fund in Florida. Please check with them for assistance. I use aubagio and they now have generic.

[elaineinqueens in reply to CynthiaS]

I will look that up and see what they have -are they just for Florida or all states? Several people have suggested Aubagio. Do you have side effects from it?

Thank you for these helpful suggestions! ❤️

[CynthiaS in reply to elaineinqueens]

No side effects from aubagio..TAF is good no matter where you live. God bless you always 🙏 ❤️

[Helpmeup]

Sorry to hear about your insurance woes! Last thing we need is more stress in our lives! You mention that you are seeing your neurologist in two weeks and will mention this. Do not count out help from your doctor. In many cases, neurologists have "samples" in stock from the drug reps that frequent their offices. The samples are given to patients who are in a bind like you are. Also, if your doctor doesn't have any Glatopa on hand, they can contact their drug reps and ask for a few months worth of samples. The drug reps are almost always happy to give a supply to the neuros they work with. Neuros have good relationships with their drug reps, and in a lot of cases, can get their patients what they need at no cost. Wish you all the best. There are solutions out there. Take care.

[mrsmike9 in reply to Helpmeup]

My neuro was the one who gave me information on the assistance for my meds. He didn't call them but gave me the information so I could.

I go on Medicare starting in May. I am working through the Medicare book and making a spreadsheet with all the meds I take and who covers what. I have an agent who will get it started and has recommended a plan, but I am double checking to make sure.

[elaineinqueens in reply to mrsmike9]

mrsmike9 A spreadsheet, wow, I am impressed! Are you talking about a Part D plan? My husband's prescription plan through his union is creditable to a Part D, but I now realize I can't continue on it because of their cap and will need to switch to a Medicare Part D in December. Is the agent you speak of someone who helps people navigate Medicare and the choice of supplemental plans? Just make sure you don't get talked into a Medicare Advantage plan - they are the worst and can result in delayed or denied care, many doctors don't accept it, etc. I'm familiar with it because NYC wanted to switch all retirees to a Medicare Advantage plan - they are still trying, it is being fought in court. Good luck with your research and thank you for the suggestions! ❤️

[mrsmike9 in reply to elaineinqueens]

My husband is on the Advantage plan through Etna. He hasn't had any problems. Perhaps it depends on which company it's through?

[elaineinqueens in reply to mrsmike9]

mrsmike9 the Aetna advantage plan is what NYC has been trying to force all retirees on. It is supposedly a "special" plan just for NYC retirees. There is a group of retirees, very smart and all volunteer, that has been researching and fighting this. It looks good on paper, especially if you are mostly healthy, it is when you need tests, procedures, etc, that it all goes south. There have been lots of studies into this. They try to market these plans saying oh you get extras like gym memberships, big deal I can get my own gym membership. Look at this article in Newsweek: newsweek.com/medicare-advan...

You have to be very careful with these Medicare Advantage plans, once on them it is very difficult to get back on traditional Medicare. Just saying, be cautious, these are all run by for profit companies that want to "sell" their product and that's all they really care about!

[mrsmike9 in reply to elaineinqueens]

Good article! Thanks! We have an independent agent helping us but I'm going to send him the link to the article and see what he says. I am definitely going to keep up my spreadsheet to see the best option.

[Helpmeup in reply to mrsmike9]

Glad you're doing a lot of research on the Medicare drug plans. It's definitely not one size fits all, and every plan covers differs different meds at different costs. Your agent will be very helpful too. I don't think people realize how confusing Medicare and Medigap and part D can be. I'm sure you will find the best plan to fit your needs! 🤗

[elaineinqueens in reply to Helpmeup]

Helpmeup, that is such a great idea! Thank you! ❤️ I never would've thought of that, but will be asking my neuro about it when I have my appt in 2 weeks!

[CatsandCars in reply to elaineinqueens]

I don't think it would hurt to call your neuro's office now and let them know what's going on. You could ask if they have any samples or resources they could recommend for the Copaxone. Then if you don't have any luck, you could bring up changing meds at your appointment. That way you would be a step ahead.

Since helpmeup suggested Goodrx and single care, I remembered something that might help you on the off chance you go to Walgreens. Once our insurance was removed from our Walgreens account and I was notified that my prescription was ready, I signed into my online Walgreens account to see the price. I was surprised to see a message asking if I wanted to use a coupon. I clicked on it, and there were multiple coupons from Goodrx, a place called Pilly, and some other places. You just clicked on the cheapest one and it was applied to your order. Sometimes Goodrx was the best deal and sometimes others were better. But if they put a Goodrx card on your account, you were not offered other coupons (just like when you have insurance).

[elaineinqueens in reply to CatsandCars]

Wow, that is amazing that Walgreens actually does that! And yes , Walgreens is our pharmacy. And good idea about calling my neuro's office in advance of my appt!

Thanks again!

Elaine

[CatsandCars in reply to elaineinqueens]

Happy to help. Just let us know what happens. Good luck!😊

[Helpmeup in reply to elaineinqueens]

Happy to help! Patients don't realize that every time drug reps visit a doctor's office, they leave samples to give to patients. Every time I had to switch a DMT, if I had a few months supply that I wasn't using, I always give it to my neuro to pass on to a patient in need. My doctor always appreciates the extra supply as they always have a few patients who need help! Best of luck at your next appt. 🤗

[elaineinqueens]

Thank you all for your thoughtful replies. This makes me feel like I am sitting with a group of caring, supportive friends who have great and realistic advice! I will definitely reach out to the resources many of you have mentioned. In addition, based on suggestions I have started to look into Aubagio and other DMTs. I am just terrified of the side effects, especially on the immune system! But I will definitely keep an open mind and do more research as well as talk to my neuro at my appt in a couple of weeks.

Thank you all again, you have made me feel so much more hopeful!

🥰😘❤️❣️💕

Hugs,

Elaine

[Helpmeup in reply to elaineinqueens]

Glad you're feeling a bit more hopeful! I wanted to add another bit of info for you. You said that you and your husband are now not covered for any prescriptions until summer. There are some good options out there for you both and they work by not using your insurance. A few low cost options are costplusdrugs.com, goodrx.com, and singlecare.com. These three companies offer big discounts on generics and bypass your insurance, giving you a cost effective solution for prescriptions you and your husband may need. Something to think about...and a hug to you too! 🤗

[CatsandCars in reply to Helpmeup]

Great suggestions! I used Goodrx coupons recently when my husband changed jobs and we were waiting for COBRA insurance to kick in, which took forever. The savings really were significant.

[ahrogers in reply to CatsandCars]

Yes, definitely shop around for all of your husband's medications as well as yours. Mark Cubans pharmacy has great prices but doesn't carry everything. It is easy to go on the website and search the name of your medications to see if they have it and how much. It also breaks pricing down by 30 day and 90 day supply, 90 being cheaper.Best of luck!

[Helpmeup in reply to CatsandCars]

I couldn't believe the savings on goodrx and costplusdrugs! Can really save hundreds or more on some drugs. Much better than using insurance! 🤗

[CatsandCars in reply to Helpmeup]

Absolutely. Some of my drugs were cheaper with insurance (when I had it), but the coupons saved so much over the pharmacy prices. And Mark Cuban did a really great thing by starting CostPlus. So many people can't afford their meds; I really have to give the guy credit.

[hairbrain4]

I had a similar problem last year with my meds. I had to go to the drug company for help. Luckily I was approved. I had to reapply again this year & still waiting to hear back from them. As far as skipping a dose yoh should be ok. My Dr had told me when I was on cola one that it actually stays in your system longer than the next dose & skipping a dose won't cause any problems. I hope the genetic works the same way. Insurance is starting to become a joke the days too with their prices, copay amounts & caps. Between the drug companies & insurance costs its getting to the point we can't afford to stay healthy anymore.

[Greentime]

Bit of a nightmare. I am glad you posted and received so much support and practical advice.

[Cm0126]

Hello,

You said your on Medicare do you have an Advantage plan or straight Medicare? Sign up for Fund Finders. They offer grants for your medication and sometimes reimburse you for what you paid out. The grants are not open all the time, but put your name on the list.

[GreatDanekids]

I agree about Fund Finder, I am on Copaxone and through Fund Finder I have been able to get a grant every year with no co-pay. They have assistance for other medications and diseases as well. I am getting assistance from Patient Access Network this year for my Copaxone. Fill out as many applications as you can find and get on the waitlist.

[elaineinqueens in reply to GreatDanekids]

Thanks, I just signed up to Fund Finder but it said there was nothing available for MS. I assume folks sign up by the end of the previous calendar year?

[GreatDanekids in reply to elaineinqueens]

The first time I got funding was in April. I think it just depends on when they get donations. My neurologist team made sure they had samples from Copaxone every month and I never missed an injection.

[elaineinqueens in reply to GreatDanekids]

I will keep checking Fund Finder and will definitely talk to my neurologist about samples! Thanks!! ❤️

[Scout4x4]

Ask your doctor about the big O. Then call them about copay assistance and decide what to do. Ocreves has a great copy program.

[Birdymom3]

Try calling Teva the maker of Copaxone they have a copay assistance program when I was on Copaxone whole cost of and on my husband's insurance they paid the medication. Which at that time was over a 1000000.00 per year , Google payment assistance programs in your area. Good luck My husband was a Firefighter in Akron,Ohio so it should be similar insurance.

[CatsandCars in reply to Birdymom3]

That would really be ideal if the manufacturers of Copaxone would cover the cost so Elaine wouldn't have to switch meds! Many years ago the makers of Avonex covered mine for free for a year because my insurance wouldn't cover it.

[CynthiaS]

They help 🇺🇸 residents. I live in Las Vegas Nevada. Good luck XOXO

[mrsmike9]

Gads. I saw my neuro just this morning. I got home and Aubagio called to say it's time to send me more. They tell me I have to pay over $3,000 and my copay assistance had a wrong insurance number or something. So I called MS One to One and they stopped the assistance for Aubagio as of the end of December as there is the generic now out. I looked up Mark Cuban's pharmacy and I can get 90 days worth for $28. Wow!!! So I called my neuro back and left the message that I have to go this route and would they please take care of it. I did not receive a call back so I gather they are doing it.

[elaineinqueens in reply to mrsmike9]

Wowza mrsmike9, that is a huge difference. Mark Cuban is doing such good work!!

[mrsmike9 in reply to elaineinqueens]

I already got an email from that company so I think my neuro's office must have experience with sending in prescriptions to them! Yay!

[CatsandCars]

Elaineinqueens, may I ask how things are going? I hope things have worked out for you and your husband.

[elaineinqueens in reply to CatsandCars]

Things are pretty much the same. I had my neuro appt and told her about everything, she did not seem to have samples to offer me. When I mentioned that folks said Aubagio is really affordable on Mark Cuban's site, she suddenly said, oh you should switch, I don't think the Glatiramer is working for you, you are doing worse. Her neuro exam consisted only of me pushing back on her hands with mine and walking down a hallway and back. I am skeptical. I also have my annual brain MRI scheduled for May so she said we should talk about switching then. But I am terrified of the side effects so unless I absolutely have to, I don't want to switch. Thank you so much for asking, hopefully I will have better news in a couple of months! 🤔🤔

[CatsandCars in reply to elaineinqueens]

Well, at least it sounds like things aren't any worse, right? I'm sorry you're dealing with so much uncertainty. And I get it; about six months ago a doctor mentioned Aubagio to me, and I read the side effects and thought "Nope! No way!" I thought it sounded pretty awful. But there are a few people on this web site that are on it and seem really happy with it. It seems like it's considered safer than Ocrevus, which a lot of people (including me) are on. I know whenever I have switched meds, I always felt really nervous about it, too. It doesn't sound like your doctor is doing very much to help you in the decision process. Which is too bad. If your MS is pretty stable, maybe stretching your existing supply of copaxone isn't the end of the world, but it's an important decision. It's up to you, but it might not hurt to get a second opinion if you're uncertain, and your doctor isn't inspiring confidence! I've seen three neurologists this year because I lost confidence in my doctor, and I feel so much better about things now. You might be like me and find one you like a lot better than your current doctor!Anyway, I really wish you the best and hope you can make a decision you can feel comfortable with, and that your MS behaves for you. 😊

[Hidden]

No I get it I think the whole insurance system is a mess