Prescription Assistance & Challenges
Share your experience with prescription assistance & challenges for MS. Get the conversation started.
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.
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?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=copylinkAnd 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?
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
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.
#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.
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
