This seems like such a nice group, I thought I’d ask your advice.
I had my first Ocrevus infusion 6 months ago and just got my bill yesterday after insurance for $6,325. Without insurance it states bill would have been $159,077. I never dreamed it would cost this much and I just paid $542 for X-rays and half of a dental cleaning after insurance. My only source of heat (gas fireplace) stopped working too. How do you survive financially?
FYI I have progressive MS. Diagnosed in 2010. I’m living on Social Security and Disability insurance from work and had to quit work due to awful pain.
What makes you want to keep going? I’m not sure how to afford to live anymore.
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KGrayiskindaok
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This is hard. Right off the bat, I suggest applying for Welfare if you haven't already. Depending on your SSDI payments, you could qualify for Medicaid (even after the fact), food stamps, winter heat, or water assistance.
I get confused on what qualifies as Federal benefits versus State, but you'll also want to look into Weatherization, which may be run under a separate gov't agency. My electric company has their own private program for that with a shorter waiting list. Since you use gas heat, see if your gas supplier has any kind of program to help you fix your fireplace. My water company doesn't provide any discounts, but because I'm on SSDI they did make a note that I'm never to be charged late fees if my payment isn't on time.
Check out food banks in your area. Look into religious groups. Catholic Charities and the Salvation Army both help people with specific needs regardless of their religious affiliation. Contact your county's Bureau of Aging and Disability office, if they have those. Even if you're still young, your disability may qualify you for something.
All of these things are a major PIA and can be quite disappointing if they turn you down, but it's worth a try. If the overall cost is worth it to you, both Amazon Prime and Walmart Plus offer membership discounts to people on food stamps. If you're comfortable shopping online, keep an eye out for unexpected sales on nonperishable foods and warm clothing. Check thrift stores for blankets and sweaters. Start thinking in terms of survival.
I have been blessed by family help in recent years, but I do worry about what happens when they're gone. I dropped Ocrevus for multiple reasons, but my insurance stopped covering it after the first year anyway. I would have had no choice but to stop it then.
It's frustrating and scary, but investigate all the options that are out there. In the meantime, we're here for you.
I am so so sorry you’re going through this. This sort of thing is frightening. When I first started taking Avonex it was completely out of our budget. Without insurance it would’ve been way more expensive than we could’ve even considered. My doctors office help me find a discount program through the manufacturer.. I ended up getting it for many years for a co-pay. But we had commercial insurance back then through my husband job. I’m in agreement with Nora’smom the fact that you have made it since 2010 without ever having to go to Medicaid is pretty incredible. Genentech is the manufacturer and you might want to try to go through them first but I just wish you the best of luck and check back in with us because there’s a lot of people in this forum that really care.. there is a number of people who take the same medication hopefully pop in soon with some good advice.
Thanks so much for your help. I’m not eligible for welfare or food stamps due to income- which is stupid because medical debt isn’t factored in. My sister has MS and is in the same boat. I’m on Medicare. I’ll certainly pursue the other ideas. Thank you so much for your help 😇
Hi KGrayiskindaok, so sorry for all you are going through. I agree, financial stress is just one more thing we shouldn't have to deal with, but it's a fact of life these days. NorasMom offered a lot of good suggestions. I am wondering, before you began the Ocrevus infusions, did you ask the manufacturer (Genentech) about any financial assistance? Typically, before starting any DMT, you work with a patient coordinator from the manufacturer who helps you navigate through getting started on the DMT, including getting financial assistance. There are financial aid programs offered by most of the drug makers which can get you low or zero co-pays on your DMT. If the drug maker does not offer assistance, there are some wonderful organizations and foundations that can help cover the cost of your treatment. Places like the PAN Foundation and Healthwell Foundation are great resources.
In the mean time, since you've already been hit with a huge bill, I would suggest calling your Medicare plan (do you have Original Medicare or an Advantage plan?) and also contacting your patient coordinator at Genentech to ask about any options available to you. Call the Foundations I mentioned too. Perhaps they can cover your costs retroactively. I hope you can find some help. How awful to have to deal with such a huge stress in your life. Best of luck to you. 🤗
Thank you so much. I really appreciate the advice. I never knew I was supposed to call Genentech or anyone else. I had 8 shots of Botox for leg pain and it was covered at 100%. I guess I was very naive about thinking Ocrevus wouldn’t cost near this much. It cost less for my daughter in law to have my grandchild in the hospital. It’s unreal. I really appreciate all the advice. I wish you well.🌸
Do you have Medicare Part D? With Medicare Part D the annual out-of-pocket drug costs for brand name drugs is $3800 or less. I don't know how this works but read this:
Thanks so much all for the advice. I have Medicare part A & B but was told by Medicare that due to my Molina Medicare Advantage insurance Medicare will not help at all. I may have been better off without the extra insurance.🤷♀️ It’s unreal. I’m waiting to see if Genentech can help now.
I'm so sorry this happened to you. It would be hard not to be hit with a bill that size and not be worried to death. I'm appalled that nobody bothered to discuss this with you prior to you getting the infusion. It seems to me that they should have asked for your insurance information and gone over all that up front.
It seems terrible news always arrives on weekends when there's nobody available to talk to. I hope that when you contact the hospital, you get to talk to a caring human being. It doesn't seem right to me that they would hold you responsible without ever telling you how much it would cost. I would place the emphasis on that when you speak with them. It was, I'm assuming, a planned infusion, not an emergency room thing, so there's no excuse for them not to inform you.
As for how to survive financially with MS, it can be a Challenge, to put it mildly. If you don't mind paring down your expenses to the bare bones, you might not mind it so much.
I could use my own experience for what it's worth: I've never had a car. I sold a house just as MS was getting bad (but not yet diagnosed). I had lost my job and knew I wasn't able to go looking for new jobs. At least I had the proceeds of the house sale to see me through the medical expenses involved in getting diagnosed with MS, at which point the neurologist told me I'd be eligible for Social Security disability. I was only 39 and could hardly believe it but it was true.
Ever since then, once that house money was used up, Social Security has been my only income source aside from SNAP benefits (formerly known as Food Stamps). It hasn't been enough to meet expenses, and so I live partly on credit cards.
It's a risky way to go but it more or less works for me. At one point about 20 years ago I had 5 cards going and could no longer meet their monthly minimum payments. I filed for Chapter 7 bankruptcy and hope I never have to do that again. Now I have only 3 cards and try to keep the debt under control.
I never eat out, never go to any movies or concerts or social gatherings. Without a car and using a wheelchair, it's just too difficult (and expensive) to transport myself to/from places. I haven't even been in a brick-and-mortar store in several years. I do go to medical appointments as needed.
It's a scaled-down life and not to everybody's taste. But it's what MS makes necessary sometimes.
I live in HUD subsidized rental housing and have been in it since 1983. I couldn't afford to pay rent in any private-rental situation. I highly recommend it as a way to get along on a low income because the rent is always fixed at 30% of a person's income, and medical expenses can be deducted from income.
I've heard of people who deliberately impoverish themselves in order to qualify for Medicaid and other benefits (like housing). Most states now have a requirement that if you give away any substantial asset, you have to wait 2 years (the wait time may vary from state to state) before you'd be eligible but it might be something worth considering. I think people who do that have a way of giving their assets to children or grandchildren but I'm not sure how it is done.
By all means try to find some help with the cost of those infusions. You might want to start with the MSAA, MS Foundation, and MS Society--and of course with the drug company, which might have an assistance plan. The post by Helpmeup tells about this.
If you decide you don't mind living partly on credit cards, I hope it works out for you. I've found I have to be very careful about the bills, pay them punctually and keep a close eye on the interest rates being charged. Balance transfers can be very helpful at times.
I hope you will be able to navigate your way through the maze of services that are offered and find some help. This is no time to be too proud to accept help. MS is a serious matter and we're stuck with it. There are times when we have to take help when it is offered. Of course we'd like to reciprocate but sometimes that just isn't possible.
I was diagnosed with primary progressive ms eighteen months ago and faced same issues.
Ocrevus is made by Genentech. The link is from their website for issues like yours. I'd reach out to them. The numbers you are being hit with obviously make Ocrevus too expensive, even punitive. Genentech may have some help.
I'm also attaching an abstract from The New England Journal of Medicine that my Neurologist gave me. It describes the/a study that the FDA used to approve Ocrevus.
Email or call Genentech! I have had 8 Ocrevus infusions & have not paid more than $100 each time. The drug company has an assistance program! For goodness sake, who can afford their prices? Maybe Hollywood folks, but few others. Alsorenson sent the link above.🙏
Ocrevus infusion is covered by Part B Medicare not Part D. The just approved injectable Ocrevus Nuovo is also covered under Part B as they must be administered in a medical clinic
you have received great advice, particularly to contact Genetech. I know Pfizer will cover retroactively, so hopefully Genetech will as well. All the best to you!
Hi,I know many people have said this, I don't qualify for Medicaid or SNAP either, but Genentech covers my 20% that my insurance doesn't cover. I was on Ocrevus for over 6 years and I never paid a dime. I think their income assistance is if your income is under $75,000. They're very nice too.
Hi, I started Ovrevus 6 months ago too. Same financial position with being on disability. Ocrevus has a free drug program and you should be able to apply. I was given all this information through my doctor for I can’t pay for the costs of these drugs either. I have PPMS too and that is scary enough!
I know opening mail like that can take the breath right out of you before the anger hits, the disbelief. People have given good advice above. Get a pad of paper and pen and sit by the phone and start calling. Document everything and who you talked with. I would start with the manufacturer. Their assist programs are a lifesaver. That's how I managed 8+ years on Aubagio. It's crazy how manufacturers of medicines are so out of control with their prices. Best of luck.
Have you applied to the manufacturer for financial aid? They offer a co pay program 866-242-9104. Through this program and insurance I pay nothing out of pocket. If that doesn't help investigate other DMT's. I heard some of the older meds maybe cheaper because they are not prescribed as often. Call your neurologist and get information on your other options.
One more thing you can try another infusion center that does not compound the medication. Ocrevus is supposed to be mixed with a steroid. The same effects can be accomplished by receiving the steroid first and the the Ocrevus after. Good luck.
please look into copay assistance programs. Ovrevus has one. I would never be able to afford my medicines without this. They should have sent you information when you were starting the medication. Call and ask.
yes, it is scary how expensive everything is. sometimes i do a double take at the price of (for instance) milk or meat compared to even a couple of years ago. every year we get a bit of a rise with ssdi, but it's never commensurate with the rising cost of living.
I was also diagnosed with PPMS just last year. I am 68 yo and also on Medicare. My neurologist office set me up with Genentech. I feel very lucky that Genentech contacted me the first year to say they would cover the first year and then with the most recent infusion our local hospital which administered the infusion called me to let me know they would cover the cost. I would definitely call your insurance company and talk to them about the charges. Ocrevus is just too expensive to expect we can pay for it. Unfortunately as you already know, it’s the only medication for PPMS. Don’t give up. There should be some assistance for you. I wish you luck!!
PAN (Patient Access Network), HealthWell, Good Days and The Assistance Fund are all closed right now but get online and fill out applications and get on their waitlist. Funds typically open up at the first of the year. There may be other patient funding programs available, try searching for disease funding and charities. Hope Charities can provide $1,000 for medical bills, check them out. Also the medical facility may work with you on the bill if you explain your situation. Sending you some hugs and prayers. You got this!
This is hard my friend, I am just reading your post and you received some excellent responses from our caring community. Norasmom suggested applying for Medicaid and also the numerous Grants that can be obtained through the National MS Society. Also, get in touch with the hospital’s Social Worker and discuss the hospitals Discretionary Funds “ or what some hospitals refer to as Charity Funds. At least you won’t be burdened with a debt and you can focus on getting better. The best my friend, we’re here and we care. Please be encouraged. Praying 🙏 for you. NeeC
I wasn't even thinking about the hospital social worker! Some years back, I wound up in the ER and had to be admitted. I broke down in tears as I explained that I had no insurance, and they immediately sent a lovely lady to explain that she could get me on Medicaid, which would cover the expenses. Now, this wasn't particularly altruistic on the hospital's part, because they knew it was about the only way they'd get paid, but still...!
Anyway, I know that KGray has said she doesn't qualify for benefits, but medicine is big business these days and they want their money. It's quite possible that the hospital can finagle some help. Keeping my fingers crossed!
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