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Prescription Assistance & Challenges

  • By Jessica Petroff

    I’m surprised no one really posted on this topic, because for me, it is always a challenge every year getting approved for my MS therapy and financial assistance.

    It takes great dedication and a little knowledge on how to get the assistance you need and one I’m grateful for knowing how to do.  I work in the medical field, so I’m sure that is why.  Every year I have to fight with insurance to get the approval of my medication, even though it is FDA approved as a first line treatment for RRMS.  I also have to call the drug company or other companies that help with co-pay assistance and fill out endless amounts of paperwork to help offset the cost of my MS medication.

    In the end, it is worth it!  If anyone needs help, please just let me know and I will guide you the best I can.

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    • By ElissaQ

      Petition change for expensive MS drugs:
      Please go to the following link:
      https://www.change.org/p/united-states-congress…And sign the petition. The petition is for the Congress to amend the Social Security Act to allow patients on government-assisted prescription plans, such as Medicare Part D, to have access to direct financial assistance offered by drug companies to help pay for the often otherwise unaffordable medications for MS. THIS AMENDMENT TO THE SOCIAL SECURITY ACT WOULD COST THE GOVERNMENT NOTHING! The only thing it would do is to open up an avenue of financial assistance directly from the drug manufacturers who already offer this assistance, but because of the anti-kickback provision of the Social Security Act patients on government-assisted health plans, such as Medicare Part D and Medicaid cannot access this assistance.I already signed the petition. Won’t you consider signing also?

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    • By ElissaQ

      Petition change for expensive MS drugs:
      Please go to the following link:
      https://www.change.org/p/united-states-congress-help-people-with-orphan-diseases-get-their-life-saving-medications?recruiter=65442018&utm_source=share_petition&utm_medium=copylink

      And sign the petition. The petition is for the Congress to amend the Social Security Act to allow patients on government-assisted prescription plans, such as Medicare Part D, to have access to direct financial assistance offered by drug companies to help pay for the often otherwise unaffordable medications for MS. THIS AMENDMENT TO THE SOCIAL SECURITY ACT WOULD COST THE GOVERNMENT NOTHING! The only thing it would do is to open up an avenue of financial assistance directly from the drug manufacturers who already offer this assistance, but because of the anti-kickback provision of the Social Security Act patients on government-assisted health plans, such as Medicare Part D and Medicaid cannot access this assistance.I already signed the petition. Won’t you consider signing also?

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  • By Cathy Chester Moderator

    Thank you, Jessica, for kind offer.  The financials of paying for our prescription medications can be confusing and frustrating.  We have to keep pushing the envelope to get them all paid.  I appreciate you sharing your knowledge here.  It is important information for people with MS.

     

    Thanks,

    Cathy

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    • By Erin Rush Moderator

      Thank you for sharing, ElissaQ. This is an important and timely topic and we at MultipleSclerosis.net wish you the pest of luck with your petition! Thanks again for sharing. Best, Erin, MultipleSclerosis.net Team Member.

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  • By Karbear

    #1 symptom of MS “they” say is fatigue, yet not a single FDA approved medication for this. I don’t see any MS groups or whatnot talking about this or trying to fight for something. I’m sure there are so many of you out there with the same story as me. I cannot function without “the supposedly now addictive” med Nuvigil. I’ve been an addict and there is no euphoria or jonsing for this one. It returns me to the closet possible form of my former self for 4-6 hrs. 34 yrs. old, major depressive disorder since 13, on disability, single, no kids, extra help from Medicare. $498 and some change a month for 30. Tried EVERY possible resource to get help. Nada. Bulls*it! Because I make such little money and Medicare puts me with extra help, I can’t even take advantage of the gap help. Nope. Ugh! I sometimes think it’s harder to live with all the other little things that happen in this disease than it is to actually live with the disease itself. To find a competent caring doctor is a mission in trying to remain sane. And don’t even get me started on the receptionists, all receptionist I don’t know if they like have a club that they take something that makes them evil but anyone who can wield a tiny bit of power go mentally insane and this is the entire world now not just receptions. Sorry I’m ranting now but I had to get that out it’s it’s been stewing in me for so long.

    I read the post about isolation and I can totally understand because for some reason when I got on MS everybody everybody disappeared, I mean I had an opiate addiction that got ugly and you you would think you lose people because of that but that was nothing compared to what happened when I was diagnosed with MS. I never understood those people who were distant from their family but I never imagined not knowing my brothers and sister because there are strangers to me now and I don’t even like the people they are. I feel like I’m living in an alternative universe and sometimes I convince myself that maybe this is hell or this or my purgatory because that’s what it feels like. I have yet to meet or talk to another person with MS there are no support groups where I live and I don’t like posting or chatting online even though I’m doing it right now but I think it would be so much easier if I had a friend to talk to.

    I am going to my first family function in years for Thanksgiving and in addition to that I am going to my sisters house on Saturday for a get together and just knowing how I can get I know that I’m going to feel sick and I just wish I could have a normal day around The people that judge me the harshest. I guess and just I’ve always been an extremely caring and emotional person and I could never fathom treating anybody especially my family this way so it hurts it sucks.

    On a positive note my one solace is that I believe that in reincarnation and you know how some people they say that their old souls well I feel like I’m one of those people and I hope that I’m on my last life and my I’ve learned the lessons because I know that I cannot take another life that has been like the one I had I cannot possibly think of any more lessons that I need to learn and that’s the honest to God truth. Of course this is not all related to my disease and you know I know that there are more things I’m going to learn naturally as life goes on so don’t take that to literately and give me an email back blah blah okay please.

    This is just me reaching out and I hope I haven’t offended anybody with what I said so this is me thanks.

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  • By Lynda Housden

    I used to have wonderful insurance through my employer. I have been using cobra since December because all of the ACA plans were too expensive and did not pay for my MS drugs–Avonex and Ampyra. However, I just received notice that the plan is changing as of May 1st–I will have a $5,000.00 deductible, $45 co-pays and still be responsible for 20% of any doctor bill costs and 40% of name brand medications or special medications (like MS drugs). I also just received my approval of soc sec disability—but found out I am not eligible for any health care benefit until I have been on SS disability for 2 years. So, you are on disability but don’t get any health care cost support for 2 years–REALLY?!

    Anyway–I am feeling a bit overwhelmed right now and can’t imagine how my husband and I will be able to cover all of our medication and healthcare costs under this new insurance plan. I have been told that this is very good coverage since the ACA (Obamacare) went into effect–but I sure don’t feel that way. How is everyone else coping with this?
    I also found out that private insurance–which would be cheaper–is not subject to the ACA rules. So, none will insure me because of my “preexisting condition”–my MS.

    Anyone else out there having any health care cost challenges–or know a good source of health insurance or health care help?
    Would love to hear from any of you with ideas or thoughts on this topic!
    Thanks, Lynda Housden

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  • By Kim Dolce Moderator

    Hello Lynda,

    I can only tell you what I did when faced with a Multiple Sclerosis dx and no insurance.

    First off, I got my MS disease-modifying drugs free with a zero copay through the pharma’s patient assistance program. If you haven’t already, contact Biogen (the makers of Avonex) and find out if your income qualifies you for copay assistance. Assistance programs are designed to help uninsured and under-insured patients. Unless your husband makes a very good living, you should get some help from this resource.

    As an uninsured MS patient, I also took advantage of a private charity clinic. I saw a neurologist and GP there free of charge (they work pro bono at these places), and had free MRIs and blood work at a Catholic hospital nearby where I applied for their Care for the Poor program. Ask the hospital where you get your outpatient tests done if they have a patient assistance program. My local non-catholic hospital has one. These are needs-based and require you to show your household income. The guidelines are not nearly as strict as for Medicaid. It’s worth checking out. If you make too much, hospitals will usually agree to a payment plan for your more expensive procedures. I did that, too, before I discovered their patient assistance program. When I applied for assistance, they refunded me every dime I had paid previously!

    Sometime during all that free care I got, I won my disability claim and yes, that 24-month waiting period sucks. But I did as described above until I got married and went on my husband’s insurance. When I became eligible for Medicare, I switched to that. Two years will go by quickly, believe me.

    Something you can look forward to with a Medicare drug plan: Our disease-modifying therapies are so expensive that within the first month of the benefit year, my drug costs push me into what is called Catastrophic Coverage. That means the cost of my generic and brand name symptom meds drop to $2 and $10 respectively. What used to be a $45 copay is now $10. I take Tecfidera; retail is $4,615/month, my drug plan pays $600 and a charity org that works with Biogen covers the rest. I pay zero.

    One downside/upside to having Medicare: Having government insurance disqualifies you from the pharma company’s patient assistance programs. However, each pharma works with a charity group such as CDFUND and NORD.

    Unfortunately, the same cannot be said for those drug discount cards that take 30% off your copay for expensive name brand drugs if you have Medicare. You can use it to get 30% off, but it won’t come off your copay. It’ll come off the full retail price, which is no bargain at all.

    And yes, whether you have private or government insurance such as Medicare, the 80/20 coinsurance will be there, it’s just a fact of life. However, my Medicare Part B plan has only a $140 yearly deductible. One more thing to look forward to when you become Medicare-eligible.

    If you want to go the charity clinic route, contact your county health and human services department for a list of resources. Hope this helps.

    Kim

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  • By Mars74

    I am a physician with MS and just moved to mainland US, NY. My health insurance does not cover my treatment because it is an experimental drug. Should I consider adding Obamacare, Medicaid or Medicare? I do have been contributing money to Social Security and Medicare since I was working in Puerto Rico, a commonwealth of USA…
    If anyone can help I thank you in advance!!

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  • By Kim Dolce Moderator

    Mars74,

    You didn’t provide the details of your experimental therapy and how you’re paying for it now, or what your income status is so I can’t give you much helpful feedback. “Obamacare” is simply a marketplace where you choose a private commercial insurance plan. Commercial insurance companies have their own formularies and don’t all cover the same drugs.Experimental drugs generally aren’t covered by anybody. Medicaid is for people with very low income who cannot afford to pay the premiums of the plans on Obamacare. Medicare Part D drug coverage is, again, made up of private insurance companies who have different formularies and who may not cover all of our drugs.You can only choose Medicare coverage if you have been on Social Security Disability for at least 24 months, or you are at least 65 years old. Hope this helps.

    Kim

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