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How do I afford MS?

  • By Azjackie

    I don’t know how to afford this disease. I am 45 years old, diagnosed 1/2008, never married, never had childeren. I was on AZ Medicaid, running smoothly for 2 years, then bombshell. Due to Obamacare my Neurologist stops accepting Medicaid patients, I get terminated from my 20 year career for not meeting a quota, and the stress makes me feel like the “Walking Dead”. After the loss of my job I received assistance from the drug manufacturer while looking for another job with benefits. My doctor convinces me to apply for SSDI as “work is killing you”. I find another Neurologist upon first appointment hands me a letter he too is dropping Medicaid patients. Boom another bombshell. Then I get a Medicare card and booklet describing a premium, copay, coinsurance, deductible. My Medicaid will end 4/1/2016. Now I need a neurologist, can’t afford Medicare, and can’t afford my prescriptions. I may as well crawl under a rock somewhere.

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  • By Lisa Emrich Moderator

    Hi Azjackie,

    I’m so sorry that you’ve been hit with so many disappointments and challenges. I encourage you to keep approaching the drug manufacturer about assistance. Here are also some programs that may also be able to help. If you have the resources, you may also want to talk to your previous neurologist about potential discount for cash self-pay for visits. You may be able to negotiate a reduced rate.

    Best,
    Lisa

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    • By Azjackie

      Thank you Lisa for the ideas. Unfortunately I have tried them all. I have been through this problem twice. Just when you think you are following the guidelines the federal and state governments change making it more difficult. I am tired.

      Drug manufacturers do not provide payment assistance if you are on Medicaid or Medicare. Medicare charges premiums for part b (to see a doctor) and d (prescriptions), deductible, co-pay, and co-insurance from SSDI. SSDI is used for utilities, food, and fuel.

      I am currently on AZMedicaid. AZMedicaid does not permit a specialist to refer to another specialist. They require you to obtain a referral from a primary care physician. For AZMedicaid to pay for the $7,000/mo prescriptions (2) the specialist writing the prescription must accept AZMedicaid.

      Because of Obamacare primary care physicians are no longer bound by their Hypocratic Oath and do not accept and drop their poor (Medicaid) and elderly (Medicare) patients.

      Patients living on SSDI can not obtain a doctor, can not afford insurance, by no means pay for prescriptions and tests. They are forced to not have insurance to qualify for drug manufacturer and testing facility financial assistance, and try to save cutting the food budget for cash paid physicians to write the prescriptions. Or patients stop treatment and become a MS statistic. Or patients are wealthy able to afford $7,000/mo prescriptions $90 physician appointment 1/year, $8000 MRI 1/year & $1500/mo utilities. Or try to find work no greater than $1000/mo to continue to qualify for SSDI.

      This sounds negative but I am a cheery person in everything but this disease. I live day by day holding on and fighting this until I can no longer.

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    • By jaxx

      Hi, know this is late…I feel your pain!! I have MS it is so hard! I was diagnosed in 2001 My Dr. was telling me the same..He was right…I didn’t stop working until Sept 2016…I should have listened.
      I’m but going thru this crazy Medicare scare right now..I don’t know whether to stay on Original Medicare or Medicare Advantage
      I can’t afford the MS meds.either..I’m trying to get help it’s going into effect 3/1/19

      I also was mugged so I take Dilantin…& with that I was never able to have kids..I do feel your pain…we have a silent disease that no one sees but us. It’s neurological so it takes a toll on our nervous system…it’s ok to be upset. Take care!!

      ….Can anyone help me choose..I really cannot any of the plans with taking any MS med

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    • By Donna Steigleder Moderator

      I can’t address all the issues you raise above but I might be able to offer a suggestion for the medication. We ran into the same problem with my husband’s medication and I found out the drug company offered medication assistance programs. We were able to apply for grants to help pay what our Medicare did not cover (which Medicare basically covered a small percentage, we still owed several thousand per month which was most of my retirement check). Without the subsidy, we could not have continued with the medication. Have you checked to see if your drug company might have such a program? Donna Steigleder, Moderator, Multiple Sclerosis.net

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    • By Donna Steigleder Moderator

      Azjackie, I don’t know if you follow us on Facebook but there is a new thread starting there today on affording MS medications that might be of interest to you. It’s called “Where to Apply for MS Drug CoPay Assistance” It’s written by Kim Dolce so if you don’t do
      Facebook, just look her up in our community listing here and you can find it in her writings as well. Donna Steigleder, Moderator

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  • By GHansen2001

    It’s hard to believe the drugs cost that much! Why doesn’t someone do something about this!? It’s heartless! All people seem to care about today is money! How can anyone afford it!?

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    • By Donna Steigleder Moderator

      GHansen2001, many can’t without assistance from the drug company themselves which is why so many now offer scholarships or other financial programs. The research is very costly to conduct and many of the drug companies now are being heavily regulated and not doing as much as they once did to support outreach so it makes it all the worse. We just have to keep working toward promoting some type of healthcare reform that will help make these type of medicines accessible to those who have to have them. Keep checking with the manufacturer for possible support options in the meantime.

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