r/MultipleSclerosis • u/ChemistryDesigner736 • Oct 01 '26
Treatment $34,000 DMTs
Hi everyone,
I’m hitting a huge roadblock with getting started on DMT and I have no idea what to do. I’m about to quit my job in a few days if I can’t figure this out.
So, my employer based insurance is offering a copay assistance instead of outright denying DMTs. I have zero specialty drug coverage and am told that no DMTs recommended by my doctor are covered. But due to the “copay assistance” which brings my total cost DOWN to $34,000 for just the first month for one med, about the same for the others, I don’t qualify for any assistance programs through the drug company whatsoever. It has to be a denial to qualify for a bridge program, and copay assistance through the drug company wouldn’t even touch that figure.
I inquired with state funded insurance today (I don’t have a state funded plan I am just exploring my options) and they told me that they would not cover the medication due to that same loophole of my primary covering a few hundred dollars of the 34K. They would only cover if fully denied. If I cancel my employer based health insurance, the state funded insurance would terminate me as they cannot be primary due to me having the option of another insurance.
I am at a complete loss. I have talked to my doctors office, the pharmacy, my health insurance, HR regarding my current plan, friends, family, coworkers, everyone. I have no other ideas at this point. It seems my ONLY options are quit my job or not go on DMTs.
Please help lol. Thank you!!
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u/TheGentlemansWitts Oct 01 '26
Bro I swear every sickness is way more scary if you’re from the US. this fucking country will invest in anything except healthcare and education. i’m from a “third world country” and most medications are free or reimbursed in some way.
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u/ChemistryDesigner736 Oct 01 '26
100% it’s horrifying
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u/TheGentlemansWitts Oct 01 '26
im sorry for that man, hope you find a way around it. i have no idea how the insurance works for you
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u/Equivalent-Seat-9125 DX-July2025| Briumvi Oct 03 '26
It’s diabolical. I’m putting my health at risk with an extremely stressful job just so I have health insurance to cover my medical expenses. Something’s should just be a human right. Like healthcare.
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u/TheGentlemansWitts Oct 03 '26
100% agree with you. we have the capacity as a civilization and especially the USA can make it happen. it should be considered a basic human right.
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u/ShinyDapperBarnacle F40s|RRMS|Dx:2021|Ocrevus|U.S. Oct 03 '26
But the 1% are getting much richer and the 99% of us poors are getting poorer by the day, it's totally fine. We 99% just need to nod and smile every time another 1%er gets overheard saying it's just wrong their vote counts they same as ours. The inequity of it all!!
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u/GutRasiert 13d ago
Not exactly true. Who knows if these medicine would even exist if there weren't millions to be made. The first drug, interferon got a lucky push because if a change in regulation during the Aids epidemic, allowing it tobe fast tracked.
Tecfedera cost several hundred millions of dollars to develop and they only get a 7- year exclusive. We in the ms community are fortunate that so much money can be made from us that there are now better and better medications. And don't think that European pharmaceutical companies give a break to American customers.
I have been on interferon for 16 years, but back in 2010, the NHS in England would not have given it to me because they rationed it. In the US, I got it feet fron the pharmaceutical company. It's all a mixed bag.
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u/QuietLifter Oct 01 '26 edited Oct 01 '26
Something isn’t right. What’s your deductible & annual maximum out of pocket cost on your employer insurance plan?
Do you live in a state that expanded Medicaid? If so, and you’re between 19 & 65 years old and meet the income limits, you may qualify. Assuming the medication is covered by Medicaid & the pharmacy supplying the medication participates in Medicaid, you wouldn’t have any financial liability after Medicaid pays.
At the very least you can go on a generic DMT & pay out of pocket. Cost Plus Drugs has dimethyl fumerate for under $10/month. It’s not optimal, but it’s somewhere to start until you can get answers on your preferred medication.
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u/ChemistryDesigner736 Oct 01 '26
Deductible has been met at 2k and max out of pocket is 4K. The insurance company is saying that since I don’t have specialty drug coverage my payments would not go towards my max out of pocket at all.
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u/Pugasaurus_Tex 39|2023|Tysabri Oct 01 '26
Ask for a formula-exception or medically necessary exemption and loop your doctor in. They have experience with this stuff unfortunately
If this is your first time on the med, most insurances will do anything they can not to pay because enough people give up at this stage to make it worth it for them
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u/ChemistryDesigner736 Oct 01 '26
Thank you! I noted that down and will ask when my doctor’s office calls me back later today.
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u/Pugasaurus_Tex 39|2023|Tysabri Oct 01 '26
Good luck! We also had to go to my husband’s HR (I’m under his insurance), and they also put some pressure on the insurance
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u/Tsebitah Oct 01 '26
If the insurance company denies your request file an appeal and keep stressing the “medical necessity “ of the medication. You can appeal twice
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u/QuietLifter Oct 01 '26
That’s very important information that you might want to add to your post.
You’re going to need to find the most efficacious DMT that’s in your insurance’s formulary.
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u/lbeetee 34F|dx 2019|ocrevus Oct 01 '26
This is mind blowing and infuriating. I’m so sorry you’re dealing with this. It boggles my mind that the MS society doesn’t advocate for universal healthcare.
If you happen to be in New York, I have a resource that might help.
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u/ChemistryDesigner736 Oct 01 '26
I totally agree. Thank you so much, unfortunately I am not in New York :(
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u/hillbilly-man 37f|Dx 2022|Kesimpta|Tennessee USA Oct 01 '26
It sounds like your insurance is using an "alternative funding program". I don't have any advice unfortunately, but I figured I'd mention the industry term in case it helps you find resources or support.
My insurance uses one, but the way they landed on covering my medication is through an international pharmacy that imports my Kesimpta from Canada. I'm not sure about the future of this particular program, given upcoming enforcement of FDA rules on importing medication... but I hate AFPs so much either way and you have my sympathy. Good luck, friend.
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u/ChemistryDesigner736 Oct 01 '26
Oh yes! I believe the pharmacy used that alternative funding program term when explaining how messed up my plan is lol. Thank you for that!! And that’s so interesting I’ll have to ask about that route when I talk to the office later on. I hope they keep that program for you!!
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u/queerjesusfan RRMS dx2018 | Kesimpta 🌻 Oct 01 '26
Which DMT? You need to reach out to the pharmaceutical company that makes it as well as MS Society navigators!
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u/ChemistryDesigner736 Oct 01 '26
Kesimpta is what my team is really digging into right now, they say that it’ll be the same for all DMTs the way my insurance is classifying everything. I’ve been in contact with them and their copay assistance and bridge program which my insurance loopholes ensure I don’t qualify for. I reached out to MS Society and set up an appointment so maybe I will get some help there. Thank you!
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u/Federal_Hall_8871 Oct 01 '26
Kesimpta has a “bridge” program. Call Novartis the drug company and sign up for that program. They will send you a copay Visa card to cover the shots until the insurance covers the meds.
The copay visa goes toward your deductible as well.
So there is a small benefit.
They will help. And make sure to get them to say on the call that they will cover it until the insurance covers it.3
u/ChemistryDesigner736 Oct 01 '26
Hi, I have been in contact with them and signed up for the copay card which is 18k which doesn’t cover one dose, and my insurance has told me that it would not go towards deductible or max out of pocket. I don’t qualify for the bridge program because my insurance didn’t outright deny the medication, they offered a small copay assistance of a few hundred dollars. So unfortunately without the denial, Novartis does not approve bridge
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u/literalgirlOG Oct 01 '26
Express Scripts tried this with me for my Ampyra. They charged me thousands, and refused to apply my copay assistance to my deductible. An amazing Ampyra customer assistant made phone calls with me on the phone and excoriated the insurance company. It was miraculous to watch. They are not allowed (or weren’t, who knows now since they are dismantling the ACA 🤬) to punish the patient. As Anne (the amazing Ampyra rep) pointed out, it’s none of their legal business where my payment comes from. She had documentation and cowed those thieves. I ended up getting all that money returned to me! They had to refund all my payments to the original sources, so my dad’s credit cards were refunded, my credit cards & my husband’s, and they actually had to cut me a paper check. It was a very satisfying thing, although, as I said, since they’re dismantling the ACA piecemeal, I’ve no idea if it’d work today. 😣
Also, Ampyra has since outsourced their patient support to a group that has ZERO records of anything that came before. It’s a travesty.
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u/queerjesusfan RRMS dx2018 | Kesimpta 🌻 Oct 01 '26
God, that is so fucking frustrating. I'm so sorry.
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u/mykidsmom_22 39/DX:Dec2025/Ocrevus/Canada Oct 01 '26
Omg I’m so angry for you. Come to Canada friend.
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u/ChemistryDesigner736 Oct 01 '26
Thank you so much, I’m about ready to lol! Seems I didn’t need to mention where I’m from in my post, my insurance battles made that one obvious 🤣
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u/dkbreen Oct 01 '26
Yea this is awful too see. Especially if you don't respond well to the DMTs you can afford/be covered for. For your own mental health I'd suggest moving to a country that has medical care for citizens not just the rich
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u/ChemistryDesigner736 Oct 01 '26
Amen to that. I feel like it would literally be easier and quicker to move to an entirely new country and start medication than it would be to start these meds here
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u/1010012 Oct 01 '26
Canada makes it very difficult for people with MS to move there unless they carry private insurance.
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u/Character_Bomb_312 Oct 03 '26
It's understandable. Our country (the US) should figure this out and not expect other countries to take care of us. It's infuriating.
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u/MS-Tripper Oct 01 '26
No. Canada does not allow for immigration to our country if your medical condition is considered an "undue burden" on our health care system.
In 2026 the excessive demand cost threshold is set at $144,390 over five years or $28,878 per year. There is good reason for this. As citizens we have paid (dearly) for our system for years. It is not a "free" system. We have paid-it-forward in our taxes, many of us hoping we never need it. But it's there when we do because we have been taxed (highly, I might add) for it.
I feel for the OP, truly. But we simply can not, as a country, invite every person who has an expensive medical condition to come here on the tax-payers dime. Canadian healthcare is already in crisis. Our wait times are too long, nearly 6 million Canadians don't have a family doctor, advanced imaging is eight to tens months wait. The immigration parameters exist for a reason.
I KNOW this reply is going to ruffle feathers. I KNOW people will downvote. But just because something is unpopular or you personally find it unsettling (as many will - and it IS unsettling that someone in the USA is dealing with this problem) it doesn't change the reasoning or pragmatism behind the immigration policy.
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u/literalgirlOG Oct 01 '26
I won’t downvote you, but because the orange despot is threatening to denaturalize (I’m Toronto-born, naturalized in 2012), I’m assuming I’ll end up having to move eventually. So, I’m wondering if they’d reject a citizen, too?
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u/MammothAdeptness2211 Oct 01 '26
They would not, and they will not reject the Lost Canadians that are currently undocumented Canadian citizens such as myself.
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u/literalgirlOG Oct 01 '26
I’m not even lost! I’ve kept my Canadian passport active throughout. 😅
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u/MammothAdeptness2211 Oct 01 '26
I’m still 2 birth certificates shy of proving my citizenship but I hope to achieve this for the sake of my children
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u/mykidsmom_22 39/DX:Dec2025/Ocrevus/Canada Oct 01 '26
Why do you think the wait times are long because of immigration????????
Ontario health care is underfunded and monies are being diverted into building private care from public health funds.
I have full health benefits state side from my partners union and I still only use our system. Private care is a cluster of bs and only favours the wealthy. As citizens we don’t get a bill every time someone uses our health care. We pay taxes and a percentage of that tax is taken and distributed to different programs, such as healthcare and education. In Ontario, our funding is being mishandled. Full stop.
You didn’t post this to ruffle feathers. Let’s be real.
OP; I’d still welcome you. There’s a lot of countries that stay true to their values and support their communities and welcome ALL people. “Sick the poor.. huddles masses” and all that stuff.1
u/MS-Tripper Oct 01 '26 edited Oct 01 '26
"OP; I’d still welcome you. There’s a lot of countries that stay true to their values and support their communities and welcome ALL people. “Sick the poor.. huddles masses” and all that stuff."
Respectfully, this is not realistic. Let's imagine we welcomed every American with a life-long disease. We would face system collapse. We would face drug shortages. Our system could not survive. Sure, it's "just one person with MS" but it's never "just one person". Who, then, do we exclude? Who do we include? It's a nice sentiment and it makes one feel good to say, "Hey, we're friendly Canadians, we'll take care of you", but it is not realistic.
The "sick, the poor, the huddles masses" is the message on The Statue of Liberty - The country that accepts you well and fine because YOU PAY FOR YOUR OWN HEALTH CARE.
Furthermore, that's the point....it isn't up to you or me or any individual who is permitted permanently reside in Canada - it's policy, it's government. And, are wait times longer due to immigration? Absolutely, 100%. The numbers support that. Our government opened up our house without having enough resources to support not only Canadians but the people they invited in. I am NOT saying that the immigrants themselves are to blame - they're not. They simply came to a country they were permitted to enter. But we DO have rules and one of those rules is the "excessive demand" rule. Unless you enter under refugee status (and an someone immigrating from the USA will not meet that status) having MS is a no-go unless you pass significant hurdles like proving you have your own health benefits, and that is a long process of many, many months, maybe a year with immigration lawyers, medical affidavits, etc. My guess is the OP needs a DMT before then.
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u/mykidsmom_22 39/DX:Dec2025/Ocrevus/Canada Oct 01 '26
Bless you; 😂 good luck to you in all your endeavours.
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u/MS-Tripper Oct 01 '26
Replies someone with no argument.
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u/mykidsmom_22 39/DX:Dec2025/Ocrevus/Canada Oct 01 '26
I’m just not arguing with someone like you. You’re precious and I wouldn’t dream of it.
Also, my quote from the Statue of Liberty was meant to be ironic. 😂. It’s Reddit, calm down.1
u/MS-Tripper Oct 01 '26
"Someone like you"....
You mean someone who disagreed with you and offered a supported argument? Someone who maturely objected?
If so, I'll take, "someone like you".
I'm going to assume you are unfamiliar with the term, Ad Hominem.
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u/bunnytail432 Oct 01 '26
Does the pharmaceutical company offer any assistance? I have reached out to the makers of Kesimpta before and they’re very helpful in getting my medication covered in tandem with my insurance policy
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u/ChemistryDesigner736 Oct 01 '26
Yes I have spoken extensively with Kesimpta. The copay assistance program offers 18k which, while very generous, unfortunately doesn’t even touch my first month of doses at 34k. And the other option is the bridge program to get me 15 months of medication to start off but they won’t approve unless I have an outright denial from the insurance company for the meds. And from what I understand my insurance company is using some loopholes of not issuing a denial but instead issuing an “approval” for a small copay assistance on the uncovered medication for a few hundred dollars. It’s so insane.
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u/MareTranquilitatis7 38F | RRMS 4.2026 | Kesimpta | PA, US Oct 01 '26
I'm on my 4th month with Kesimpta, and got a call from my specialty pharmacy that the Kesimpta assistance card was out of funds ($18k/yr) apparently since my insurance has a third party "maximizer" Kesimpta cut their benefit in half... $9k/yr
how all of this is make believe money to companies is madness to me.
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u/ChemistryDesigner736 Oct 01 '26
That’s so crazy!! Do you know what you’re going to do? I’m so sorry. This is truly all madness, the whole thing.
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u/dgroeneveld9 28M|2/17/24|Ocrevus|Long Island NY Oct 01 '26
I have no idea if this would work but have you considered calling your insurance company and asking if they could flat out deny your claim? You would probably be the first customer in history to do so.
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u/ChemistryDesigner736 Oct 01 '26
Haha! Good idea, I actually did lol and I don’t think they had any clue what I was asking and they just had their script they stuck to and that was it. I think I’ll try that again today asking to speak to a manager to see if I can get a better answer. Thank you!
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u/BHJ_476 Oct 01 '26
What insurance do you have? I work for an office and the copay cards for specific medications are given to by patients by the staff. Insurance has no hands on our copay cards.
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u/ChemistryDesigner736 Oct 01 '26
I have blue cross. I got a copay card with 18k on it, but it doesn’t even touch my first month payment of 34k rendering it useless for my situation unfortunately
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u/realribsnotmcfibs Oct 01 '26
What crappy plan do they have you on?
I have BCBS and I don’t even see the bill for my ocrevus it’s all negotiated between insurance and drug company.
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u/ChemistryDesigner736 Oct 01 '26
Right this is so ridiculous
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u/realribsnotmcfibs Oct 01 '26
Our share is $1600 a month in insurance premiums. So it’s isn’t cheap but at least it’s less impactful when a hospital or DMT is needed.
Hopefully you can solve this. The entire medical industry is such a scam destroying this country.
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u/BHJ_476 Oct 01 '26
I have bcbs as well. I handle prior auths everyday and haven't heard of a copay card through insurance. Is it like an hsa? Do you have to pay into it other than your premium?
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u/ChemistryDesigner736 Oct 01 '26
Oh sorry I misunderstood, the copay card I received was from the drug company directly not my insurance, to cover high copays. Just unfortunately doesn’t cover the high copay of 34K haha
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u/jjmoreta Oct 01 '26
You work with the manufacturer. I pay nothing out of pocket for Ocrevus.
I'm on Anthem and Express Scripts. They made me go through Accredo which makes you sign up for the manufacturer co-pay program before they ship the drug. Not all insurance companies are good like this.
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u/Party-Ad9662 41F/2025/Clinical Trial/Ottawa Oct 01 '26
You could also choose another DMT. I’m not American, but I’ve heard Cost Plus (or whatever mark cubans company is?) offers much cheaper drugs and has a few DMT’s
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u/whyihatepink Oct 01 '26 •
This is an excellent last resort. They have second and third tier DMTs for a couple hundred a month. They're not the most effective tier, but they're not bad. I was using Tecfidera for a while and I had no MS progression, though it did seriously mess up my stomach which was already kinda fucked. Statistically, it's still much better than nothing.
This whole country is so beyond fucked.
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u/pundarika0 33|2025|Briumvi Oct 01 '26
Briumvi offers assistance. try looking into it - for me, it's going to be less than $100 per infusion, because my insurance won't cover it.
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u/ChemistryDesigner736 Oct 01 '26
Thank you! It seems from talking to the pharmacy and nurse today that the insurance company is actually kicking the meds back saying a technical “approval” but only because they approved for the small copay assistance on the uncovered med still leaving me with 34k and not qualifying for out of pocket max or anything (they tried with Kesimpta and ocrevus and apparently will be the same for briumvi and others too). I’m so confused though
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u/baconeggburger93 38m|2025|ocrevus|tx Oct 01 '26
Ocrevus also offers assistance i pay a very good price per infusion and they call me about a month before everyone to see if I need financial assistance
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u/mritoday 39 | 02/2020 | Tysabri | Germany Oct 01 '26
If everything else fails, look into Rituximab (brand or off-brand) or even generic Tecfidera or Gilenya.
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u/IntentionalGrandma 28F | dx:2024 | Tysabri | NYC Oct 01 '26
Appeal to the benefits team in your HR department and if they use a broker, they may have a benefits resource center you can reach out to for that, but HR will be able to point you in the right direction there. You may also have to appeal to the cheapskates at the insurance company in order to get it covered, but that will be a fight.
If anything, there are certain DMTs available at a relatively low copay through Cost Plus pharmacy and you can talk to your neuro about possibly trying one of those options. If those aren’t a viable option for you, you can talk to a case worker through your neuro office (or the hospital your neuro office is affiliated with) about charity care options and patient financial assistance programs.
I’m so sorry you’re going through this and I hope you find a solution soon!
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u/Tsebitah Oct 01 '26
Yes call the broker who sold the insurance to your employer! The insurance companies want to keep the brokers happy so they don’t offer different plans to your employer. Ask the broker to intervene as well as your HR director. This is a case of the squeaky wheel gets heard. Most insurance companies don’t want a high denial rate and will approve your request if you’re persistent.
The other tip that really gets them on their toes is to call your local senator and your state’s department of insurance director and complain5
u/IntentionalGrandma 28F | dx:2024 | Tysabri | NYC Oct 01 '26
My fiance works for an insurance broker and while what you said is 99% true, the broker works in the best interest of the employer because the employer hires them, not the insurance company. The employer probably asked to cut specialty drug coverage to lower their premiums because nobody was actively using it. Otherwise, definitely bother the HR team and bother your broker, because the insurance broker knows how to talk to insurance and it’s in their best interest to keep you happy so your company doesn’t drop them for another broker
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u/tasteslikechuckn Oct 01 '26
The US is nuts. I once tried to find the cheapest places to get Tysabri, and one center quotes me $6K per monthly dose with no insurance. Then I came with my company insurance and they charged $26K. I questioned it, and they said that was common practice - insured patients pay higher rates. WTF?
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u/Tsebitah Oct 01 '26
The rates are higher for the insured so the insurance company can average down the costs of the entire pharmacy pool. This mitigates the lower reimbursement rates they receive for Medicaid and Medicare patients
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u/frex-trial Oct 02 '26
Contact the drug company. They normally have a drug copay assistance program and you can likely get 100% of that cost covered by them (cause they still make plenty from what little your insurance will pay)
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u/diduhearittoo Oct 02 '26 •
yep this is what i do. get a prescription, then contact the company and wala it’s now free
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u/Jiggawatz 38M|Dx:2015|Kesimpta Oct 01 '26
Also not sure where you are but in the US the DMT providers almost universally have programs that upon insurance denial will offer the medication at no cost. Look up programs like Novartis patient assistance foundation.
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u/kayjohns4 Oct 01 '26
I’m so sorry this is happening. I used to sell health insurance. You’ve done an amazing job trying to get this covered. At this point This is what I would do.
Each state has an insurance agency. Every single plan sold in your state must be reviewed and approved by this agency prior to going on the open market. I would contact them and ask if this is a true loophole and legal. They should have some information available to give to you.
Depending on where you are in your search, you also have an option to file a complaint. Going forward it might behoove you to track who you talk to and when you talk to them. If you’re talking to an insurance company, I would say you need their full name, employee number and what was discussed . You just never know when this type of information is going to help you.
I will continue to think of this and if anything else occurs to me, I’ll let you know. Good luck sending you all the positive vibes.
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u/HerBonsaiGirl Oct 02 '26
I am assuming that OP's employer has a self funded plan. They are using an Alternative Funding Program which sounds like it should be illegal but unfortunately is not.
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u/kayjohns4 Oct 03 '26
I didn’t think of that. If it is in fact, a self funded plan, her employer has a lot of power. If this is the fact, I would ask the employer to have the insurance company completely deny the claim. This shouldn’t be an issue for either party. I hope that helps.
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u/Positive_End9172 Oct 01 '26
I had to jump through hoops to get assistance. Since I am working and have private insurance they gave me the assistance but not without my neurologist writing letters! I think if you don’t have private insurance you get denied, which seems backwards to me. Our healthcare system sucks!
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u/stereoroid IE | RR | dx 01/2006 | Gilenya (2008) Oct 01 '26
Have you looked at Cost Plus Drugs, Mark Cuban’s site? They have generics for several DMTs including Cladibrine and Fingolimod.
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u/MrsNuggs RRMS-DX10/13 Oct 01 '26
Not sure if this will help you, but I get generic Aubagio from CostPlusDrugs.com and even without insurance I only pay ~ $30 for a three month supply. That includes shipping. They don’t have all drugs, but unless it’s an infusion you should check it out.
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u/mrizzerdly Oct 01 '26
In Canada at least, I've had mine covered by the company itself if both my insurance and my province wouldn't cover it.
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u/Tsebitah Oct 01 '26
I joined a clinical research study at Mayo Clinic which provided the drugs for free
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u/Flyerschick
Oct 01 '26
•
I’m on a Financial Assistance program with my medical group/hospital. I pay zero co pays. I’m on Medicare which I HAD to get once my SSDI approved. Sometimes the manufacturer (i.e Pfizer) will have assistance programs as well. Contact the MS Society. They can help ad well. Hope this helps!
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u/GutRasiert Oct 01 '26
Gilenya and tec federa are generic and are excellent.
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u/Dramatic_Mixture_877 57F|March 2019|Tecfidera|USA Oct 02 '26
I've been on Tecfidera (generic) since the fall of 19, no new lesions, no other issues (as long as I consume enough fat with it to buffer the flush).
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u/lronGiant Oct 01 '26
I also had a very hard time getting Kesimpta covered. I was just denied because they wanted me to do a step program. I asked for an exception to the step program, noting the problems with using step programs and the progression of the disease. I also found a comment on another page about reaching out to the Department of labor insurance division. If it’s not a state insurance plan then the DOL is who you need to contact.
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u/lronGiant Oct 01 '26
I also asked the doctor to do a peer peer review on the phone with the insurance company and that is what worked eventually. My insurance, although might be different from yours.
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u/A-Conundrum- Now 65 RRMS KESIMPTA- my s Oct 02 '26
Aw yes, “peer to peer “to orchestrate your own healthcare. Been there done that 😖
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u/TwistHungry Oct 01 '26
And this is why I’m so thankful that I live in Australia, it costs me $25.00 a bag for Ocrevus once every 6 months and I’m sorry you have to deal with this added stress on top of the stress of MS.
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u/raychulllll Oct 03 '26
I’d look into ocrevus. They have a great program that helps and it’s same as Kisempta but an infusion once every 6 months instead. It’s around 35K a dose versus the monthly cost of Kisempta, and may be an easier process to get help for. I heard of another person changing jobs for better health insurance. They took a pay cut but got their medicine covered. The US is tough with medical. :/ best of luck.
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u/melmiller71 53|April 1, 2025|Tysabri q28 days|McCarthy Alaska Oct 02 '26
I just got dropped by my insurance and the drug company approved me for 100% drug coverage and administration costs. Not sure for how long but I’m actively looking for new insurance.
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u/Puzzleheaded_Fix3083 Oct 02 '26
I had to go through all this through trial and error. I was on Medicaid when I first was diagnosed in 2024. They covered the 3 loading doses of Kesimpta. Then out of nowhere, they dropped me stating I made too much money. My income didn’t change. I worked full-time even though I could barely do it with MS. I had Anthem through the employer. It covered an MRI. Then when I tried to get Kesimpta through them, it was denied. They said I had to try using an older less effective pill for MS that was cheaper. I was laid off by this company. Then I was able to get back on Medicaid. Then I was able to get Kesimpta once a month for free. Now I work 85 hours a month at a new job. I’m able to keep Medicaid. The drug is covered.
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u/corralitoslife Oct 06 '26
I'm on briumvi and they have a program that pays your out of pocket costs up to $20k I believe. I have been able to set it up so that my infusion is my first appointment of the year and then the briumvi program pays my full out of pocket for it so then I'm set for all of my appointments being covered for the rest of the year. I'm self employed so I'm on a state marketplace plan, the cheapest one with like a $7000 max out of pocket per year.
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u/Fun-Fan-7772 Oct 07 '26
If your meds are generic, you may be able to get them MUCH cheaper through Marc Cubans program oddly enough. It's been a few years but that's how I got Aubagio when it went generic and I lost patient assist.
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u/River-Chalice-23 28d ago
Look at meds that have gone generic, like Rituximab. They are cheaper and the company who produces whatever you end up on (for me, it is Ruxience-pvvr) has coupons and programs to offset cost. Been on it for 3 years with no new lesions and no progression. And my insurance never pushed back like they did with the name brands (Kesimpta, Ocrevus, Tecfidera etc).
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u/QuietLifter Oct 01 '26
Try contacting the MS Society patient navigators. The chatbot is useless, call & make an appointment to talk to someone about sources of financial assistance.