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Are there financial resources to help with the high costs of MG care?
My Neuro has started me on a series of Rituximab infusions. 2 infusions 2 weeks apart and then another 2, 6 months later. The cost per infusion is $25,927. My UnitedHealthCare Medicare Advantage insurance pays $4,080.21 leaving me with out of pocket expense of $1,052.73. I live on Social Security and a monthly draw on my IRA. I’m not financially disadvantaged (yet) but the 4 infusions are an extra $4,210.92 from my total retirement savings. There are some MG financial assistance programs available, but they seem to look at total SS+IRA value, thus placing me at a higher income level. Does anyone have suggestions about high cost of MG assistance? Thanks in advance.
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8 Replies
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Yes, Larry. The Assistance Fund is located in Florida. They are an organization which will help with out-of-pocket expenses for certain rare diseases. I believe there are over 50 diseases that are eligible, and MG is one of them. I would start by going to their website because they have all the information listed there. I have used them for around five years and it’s made all the difference in the world to me. Good luck.
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I have been accepted into TAF from the beginning of my diagnosis. I have sent them reams of paper and it is never enough for them. I have sent them pharmacy receipts, pharmacy summaries, Medicare electronic printouts, credit card statements, and hospital billing statements. All I have received from TAF is requests for more paperwork. If you received help from them good for you. All they did for me was frustrate me. I tried for two years to get help from them and finally gave up.
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Maybe it is the difference between an Advantage plan and a Supplement but I have not paid a single cent for my Soliris treatments. When I was on Soliris the only thing I paid for was the required Meningococcal vaccinations. The hospital billed Medicare and my Supplement $70,00 every two weeks for almost three years and I never paid a penny. Now for my Ultomiris the hospital bills $180,000 every eight weeks and no change.
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TAF told me Rituximab isn’t covered, so I got stuck with a huge bill. The hospital/doctor told me I needed it, and TAF would pay. Later someone told me Rituximab takes a long time to kick in, and I was given it while waiting a month for my Vyvgart. So I was left with $3,000.00 bill for nothing,
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I am on Vyvgart and the costs for 4 infusions, considered a cycle, are around $85,000 with a co-pay of over $5k every other month. I filed for disability and after two years was successful. I was not ready to retire financially and due to the severity of my symptoms was forced to. I applied for financial aid through the web site https://tafcares.org/patients/ and was accepted. They pay for all MG related co-pays and my Social Security Medicare month premium and my Medicare Advantage premium. If you are not currently receiving Social Security disability should get a lawyer that specializes in such procedures and apply. I live in Northern Virginia and could give you the name of the lawyer I used. There is an upper limit on your liquid assets, not to include your house.
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I was diagnosed with MG in 1993, have been on Rituxan since December 2015, and yes, it can be very expensive. In 2017, I found a program through Eli Lily where you can apply to receive the medication for free. I’ve been approved every time I’ve submitted the form. Also, my doctor figured out which insurance codes would be the cheapest for me when billed and that has definitely helped.
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Kevin,
Thanks for the info. I am also on Vivygart and recently left my job on disability. My insurance at my job expires at the end of 2023 so I hope my SS disability is approved by then. My insurance started charging me the 20% on everything and it is adding up with all the appointments I have. So far I haven’t been charged for the VIVYGART but I figure that is only a matter of time.
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Kevin,
Thanks for the info. I am also on Vivygart and recently left my job on disability. My insurance at my job expires at the end of 2023 so I hope my SS disability is approved by then. My insurance started charging me the 20% on everything and it is adding up with all the appointments I have. So far I haven’t been charged for the VIVYGART but I figure that is only a matter of time.
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Have you try asking your neuro doctor? I was so worried about it. All I know is that he must have me in some program that pays for it. I DON’T KNOW IF IT BECAUSE I WAS TOLD I COULDN’T WORK ANY MORE, AND I WAS TOLD TO GO ON DISABLITY. i HAD NO PROBLEMS WITH GETTING ON IT, BUT I KNOW IT DEPENDS ON YOUR DIAGNOSIS. iF YOUR REGULAR NEURO DOCTOR DOESN’T KNOW , KEEP SEARCHING. GOOD LUCK.
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I am getting 500 mg every 5-6 months now for two years already, only the first infusion was 1000 mg.
My neurologist also wanted to do two infusions of 1000 mg spaced some 2-3 weeks apart and then keep 1000 mg ecvery 6 months or so; during the first infusion I had very high blood pressure (110/200) and decided to scale back the dose; I would say the effect kicked in after about 6-8 months, and since then it continues to improve. Not sure if with higher dose the effect would have been faster…
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My total income is too high for any programs, but fortunately I was able to enroll in a catastrophic insurance prior to having issues…while they have a $100000 deductible, they count what my primary insurance pays in addition to what I pay and one the deductible is met the cover everything my primary does pay (I.e copays, co-insurance..) this year is my deductible period and I started rituximab in Jan. My cost is ~$2000 for 2 infusions (loading dose followed by standard dose 2 weeks later… maybe I’m just lucky, but my CD19 count is 0, And I am now taking 1/2 the Méstinon dose..I was previously on plasmApheresis every other week for 5 years with numerous hospitalizations for respiratory failure.. as I’m seronegative (actually LRP4 (+)) I am not able to get Vygart even off label (which is weird b/c my insurance said no pre-approval was ever received, but the company says I can not get it)..after clots related to the ports and now having an a-v fistula for PLEX I’m thrilled at the possibility of reducing PLEX sessions—my husband has a whole life insurance policy that we can borrow from and pay back when we can afford it (they charge interest of course, but rates are still reasonable)—-once we meet the deductible for our catastrophic insurance—- it seems totally in fair that having and income makes you ineligible for aid and the cost of the care makes your actual income lower than that needed to be “eligible” for aid
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