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  • Stardusted
    Hi all,

    So even with insurance, Anthem BC/BS and medicare, I cannot afford any medication and haven't been able to afford any MS medication in nearly 14 years. I live well below the poverty level (it is 10,000k a year for one, I live off of 8k a year for two), and despite having earned multiple degrees, I have found no luck in getting employment for years (mostly because I stubbornly refuse to lie about MS).

    How do people afford the medication? Nearly every time I try to get a medication through insurance it is denied (along with blood work and even seeing a neurologist with referral). I haven't had an MRI paid for in over 8 years now. About the only thing my insurance is willing to pay for is the trips to ER from falling (broken thumb, flayed skin, etc...).

    I admit that getting help is becoming harder to take mentally for myself. I have been living off of other people's help for so long and a good portion of society honestly considers people like me to be less than worthless (the people they elect certainly do at least). It drags on me more and more. I want to be self-sufficient and earn a living. I don't want to be at other people's mercy and to constantly be called a loser by those who can't see the damage MS is causing me is not helping things at all.

    I was 20 when diagnosed, and I just don't know how people who were younger or near the same age as me at the time of diagnoses ever get their lives 'off the ground.' The only financial assistance I get is from SSDI (and trust me, even though I started working fulltime at 15, 5 years of paying into social security barely gets enough money a month to rent a cardboard box).

    I try to be as hopeful as I can, and thankful for what I do have, but I honestly don't see much hope for my future. I can't get a job unless I lie (which seems the opposite of how things should work). I pay hundreds of dollars a month (the majority of my SSDI) for insurance that denies everything. My health, even though I can and still do walk several miles every day is only getting worse (I experienced over 30 pounds of weight loss in a month when I wasn't doing anything to make that happen and was in the ideal weight range for my height already).

    Any advice from others that doesn't involve begging or lying? Or are those really the only options I have?

    Thank you in Advance,
    Michael
     
  • MS_Navigator_Ashley

    Hi Michael, I'm glad that you reached out.  Trying to figure out health insurance, what they will actually cover and how to afford medical costs can be really difficult.  Most insurances cover MS medications, however, many do require a large copay on your part.  We do know of programs to help with the co-pay portion as well as resources to help with MRI costs that insurance doesn't cover. Without knowing more about what type of coverage you have and what you have tried, I can't provide the best direction.  I would encourage you to call the National MS Society to speak with one of our Benefits and Employment Navigators about your situation to get the best guidance on looking for employment, navigating your health insurance, and accessing any funds we know of to help with the out of pocket costs that you cannot afford with your disability check.  We can be reached at 1-800-344-4867, Monday-Friday from 7am to 5pm Mountain time.  In addition, if you feel more comfortable, you can also email us at contactusnmss@nmss.org with your situation and additional details that can help us point you in the right direction.  
     

    MS Navigator Ashley 

  • maria1
    Hello Michael, I sure do hope you contact the society to get some info. I can remember getting a minimum wage job and doing my best even though i hated it all the time. My self respect and integrity kept my head up. Asking for assistance is not begging, so ask away, the system was set up to aide us, we just have to climb the highest mountains or swim across the ocean to get the help that is there. 

    ​If you can feel good about yourself and lie at the same time....
    that is for you to decide.

    ​Fighting for what is available is not begging.
  • Stardusted
    Thank you to everyone who has replied, I may have to avail to asking for more help, and your replies haves been helpful. However, I have decided that the best way to fight for access to health care is to run directly for the House of Representatives. As a poor and honest person, I have several 'marks' against me, but I won't let it stop me. I encourage everyone to run for some form of elected office. If you can't run for office, I encourage you to get involved with whatever political party you agree with or like. Several positive changes have come in my state because of people with MS working for elected officials (regardless of what party they worked for). Good luck to everyone and thank you.

    - Michael
  • walnut
    I am so glad I found your comments Michael, I still can't work out how we will be able to afford the medication and MRI checkups that the DR's will want in the future.
    My husbandis works in maintanance parttime, he used to be a truck driver but got injured and cannot do that now. I then got a job in retail, got 35hrs wk, then got on full time, got health insurance. Life was getting good agin and i could contribute, I was good.
     And then had a large bad attack of MS. Small things at first, but it got worse as the days past. I knew I was sinking and it would get worse. I had ADEM 23yrs ago, and it was the same as it got worse. I knew I needed steroids very soon. 
    I was loosing cognition, getting very weak,and could not do much except sleep. and knew i needed help. There was a 5k deductable to insurance, I could not afford that, so I dropped the insurance and signed up with DHS, Now we had only my spouse income.
    We have done nothing roung, but God only knows how we will be able to afford our future medical expences.
    Can anyone give me some answers.   

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