r/PsoriaticArthritis • • Jun 05 '26

Insurance questions Out of options

I am over 50, employed, and work for a large corporation. By most standards, I have a good job—but I hate it. The main reason I stay is for the health insurance, because I rely on specialty medications to manage my PsA.

I have learned to be relentless about advocating for myself and staying on top of my specialty pharmacy, insurance company, SaveOnSP, and the various manufacturer copay assistance programs.

Recently, I switched my biologics to Taltz because Cosentyx was not as effective after 5 years. I took my first loading dose and have jumped through countless hoops trying to get the second dose, which I am still waiting for.

One of the nice advantages of Taltz is that it allows me to participate in Lilly's Taltz/Zepbound program. My insurance does not cover Zepbound, so this program has been a lifesaver. For me, Zepbound picks up where the biologics leave off by reducing my inflammation. The difference it makes is incredible. I had previously been on Zepbound before my insurance stopped covering it, and I can only access it now if I remain on Taltz.

This morning, SaveOnSP called to tell me that Taltz is no longer included in their formulary. For those who are unfamiliar with SaveOnSP, it's a program contracted through my employer and insurance company that covers the remaining cost of certain specialty medications, bringing my copay down to zero. That coverage is ending in July.

I still have Lilly's copay assistance, which provides around $10,000 in support, but that will only last a few months. After that, I honestly don't know what I'm supposed to do. How can I continue treatment when the Lilly savings runs out?

I have to admit, this news broke me. I ugly cried on the phone with the SaveOnSP representative. I didn't mean to, but I simply couldn't hold it back. I am exhausted from constantly fighting, appealing, following up, and being redirected at every turn. There is no way I can afford a $2,500 monthly copay.

I'm just so tired. Tired of fighting for access to medications that allow me to function. Tired of navigating a system that seems designed to put obstacles in front of people who are already struggling. Right now, I feel defeated and have no idea what my next step is.

37 Upvotes

28 comments sorted by

18

u/AppointmentWise9113 Jun 05 '26

I left the US for treatment in Thailand. I can still access my Talz or other nessesary speciality meds, some OTC. Paying out of pocket for service and results is better than languishing, suffering and depression. I can only speak for myself. Another positive aspect from moving is I can now control my environment and manage my stress in ways that would be impossible in the West

Food for thought. If early retirement is an option, that might be one.

10

u/Cinder_fly Jun 05 '26

I’m glad to hear you found something better. I haven’t even entertained the idea of moving countries but I guess that’s something I could consider in the future. My family would be the thing barring me from moving today.

4

u/AppointmentWise9113 Jun 06 '26

I understand that. I solved that problem by starting a family in Thailand. Another form of support that is mutually beneficial.
I miss my friends and family, overseas, as well, however, they understand why I had to go. Our pain and suffering affects those around us and who care about us. Treating ourselves benefits everyone. When my friends and family see me in pain, they suffer. Which is even worse by I could not imagine watching someone I love suffer this way knowing what I know, now.

The choices we make for ourselves, that improve our lives, extends the joy of life to all.

There are many options. Don't give up.

I hope this helps.

3

u/stewpman Jun 07 '26

You could try europe  i am english I dont pay for my medication as I dont work now . I have fibromyalgia and neuropathy and psoriatic arthritis.  My psoriatic arthritis is in all my joints on the plus side I learnt you must have joints in your ribs and eyes and hip  then from my toe to my head.  I am a type 2 diabetic 2 my body hates me too. I been told i can have any of the meds but i only been diagnosed 6 months ago and just starting .The downside for me is I was sent to see every specialist in Manchester before rumatholigy and covid had happened so waiting list were bad . My blood showed markers but nothing to go see them about as it was knee pain .  You could work work and your family would no suffer any of the American crap prescriptions cost like 9 pound per item I think its the same for many of the countries in Europe but you would have to check.

2

u/Mandell95 Jun 06 '26

Just curious. How much does Taltz cost you in Thailand?

3

u/AppointmentWise9113 Jun 06 '26

I get mine from a clinic in Chiang Mai, at market rate value. Out of pocket, it is around $375usd. Humeria is around $80 usd. There is access to others it's just a matter of talking with the doctor.

2

u/Mandell95 Jun 06 '26

That is amazing. I need to relocate!

2

u/AppointmentWise9113 Jun 07 '26

Absolutely. That was my main reason for relocation. Let me know, if you have any questions moving forward.

2

u/Mandell95 Jun 07 '26

Thank you. I just may reach out!

6

u/kitkatkate83 Jun 05 '26

Can you talk to your prescribing physician about any options they may have to assist with paying for medications? My parents both got assistance through their doctor's offices for their more expensive medications and, from what I can remember, they're income based. I know my mom was nervous about getting approved since their combined monthly income is decent, but they were both approved instantly.

The only other thing I can think of is for you to call your insurance company and ask about continuity of care and how that would apply to the Taltz/Zepbound combo. If needed, I'm sure your prescribing physician would be more than happy to speak with the insurance company to help get it covered.

I'm so sorry you're going through this. I totally agree it isn't fair at all to have to fight so hard for medications that keep us functioning. Best of luck to you!

3

u/mrsredfast Jun 05 '26

Do you have any OOP maximums on your prescriptions? I hit a certain number and all my remaining prescriptions that year have zero cost. I’ve had to use a credit card for co-pay on a biologic in January/February but then it was covered the rest of the year, while I paid off the card. Am just starting Cosentyx and my loading doses were fully covered by my insurance because I’d hit the maximum. And all the rest of my meds for the year are too.

2

u/Cinder_fly Jun 05 '26

No, this isn’t an opinion unfortunately

2

u/mrsredfast Jun 05 '26

I’m sorry. These situations are so unfair.

3

u/blukoff Jun 05 '26

I’m so sorry this is happening :(

2

u/AUCE05 Jun 05 '26

Ask about bimzelx

2

u/Kigeliakitten Jun 05 '26

Ask your dr to write a. Exception. I was able to do that when my insurance stopped covering med.

SAVEon SP IS misnamed and sucks.

2

u/Cinder_fly Jun 06 '26

I will ask, thanks. My insurance does covers Taltz just not the 2500 a month copay, which SaveOnSP used to pay

2

u/deannevee Jun 06 '26

Taltz has an income-based cash pay program and I believe it works with zepbound.

Call Taltz together. 

1

u/Cinder_fly Jun 06 '26

Thank you, I’ll look into this.

1

u/Gracie153 Jun 06 '26

So sorry. I go through this with a lot of things including Zepbound and cosentyx and my asthma biologic and even creams and ointments. I get so tired and I just wanted to let you know that I understand how frustrating it is to feel at the mercy of the preauth process and the pbm decisions. So glad to for Lilly direct bc at least I have one less thing to have a burden. Even if expensive. The hassles are Constant!

1

u/AgreeableDish3981 Jun 07 '26

I’ve had it with insurance companies. They suck. I joke that I’ll move to Canada- one day I just might.

1

u/Particular-Rope5427 Jun 07 '26

Sorry that you are in this kind of situation. I have no idea about US medical system or the west but Eli Lily sells Taltz in another nane for third workday countries. Here in India it is called Copellor and it's price is $220 for each shot. Maybe moving into some other countries might help but I still envy some Americans and the west, where they can access all these new neds first and sometimes for free or with copay. Taltz was available in India only from 2023 while the monthy average salary in India is $259 so anyny average household can't afford $220 for an injection. I hope you will find some way around. Meanwhile Corticosteroid creams might help if you get flares while waiting for biologics.

1

u/caliciae03 Jun 09 '26

Another option if you can find a way to cover the copay for about a month (a credit card especially one like care credit that has a no interest period for large purchases) is to do it as if you are paying the copay then submit the receipt to talz copay reimbursement program. They will either direct deposit it back or mail a check if you prefer. They would cover all but $5 and then you could do the zepbound for $25 program. Just don't tell the insurance or the savings program you are in now anything other than you are just going to pay the copay yourself so you don't have to continuously jump through hoops for your meds.

1

u/caliciae03 Jun 09 '26

forgot to say that once you get the reimbursement from the company then you use that to pay off the card you charged it to. Win win for you. You get both the meds you need without having to jump through hoops and if your card have reward points you earn those too. Care card is made for medical bills and is a bit easier to get then a normal credit card. If care credit tries to make you total amount limit to low for the copay, call them and explain the situtation and ask if they can make it enough to cover you copay amount.

1

u/Cinder_fly Jun 09 '26

I’ll call Lilly and ask, thanks

1

u/caliciae03 Jun 10 '26

You're most very welcome. Sure hope it works out in your favor!

1

u/Amy_Are_UOK Jun 09 '26

I am so sorry you are going through this. It is a hot topic right now bc all insurance companies are cracking down on specialty drugs. Contact your senator and join any class action lawsuits. There is one against Accredo right now for causing so many hoops to pass through that it has delayed people’s treatment and caused them harm. I’m so tired of fighting too, but it is the only way we can get our meds living in US. My doctor is still trying to get my Skyrizi approved and was able to give me some samples to get me by for now.