I have been on Rebif for about 4 years. Very stable during that time, a few extra lesions, no significant flares, and no new symptoms. Before that I was on Copaxone, which I tolerated well, but after 3 years on it, suddenly my lesion count doubled between annual MRIs. So I have been happy on the Rebif and content to keep doing shots instead of wanting to try one of the hot new oral meds.

However, United Healthcare doesn't like Rebif. I am not sure exactly why. Yes it is expensive, but not extraordinarily so compared to some other MS meds. So last year, they decided to raise their copay for specialty meds from $35 to 20%. Which for me, was $914/month. Since the change became apparent after we already had set our FSA amounts for the year, it was going to be a big problem for me to make up that difference somehow. Doesn't everybody just have $880/month in extra income they can tap into with a couple of days notice?

But here to the rescue came MS Lifelines, from the maker of Rebif. After talking to them about the problem, they worked with my doctor and the UHC pharmacy and set me up with a copay assistance program that paid whatever my insurance didn't cover. Hooray for MS Lifelines! I was saved...right?

Well not so fast my friends...UHC still doesn't like Rebif. And they REALLY didn't like that I was getting assistance from the maker of Rebif. So a few months before the end of last year, they sent out a letter saying that they would not be accepting manufacturer assistance programs starting January 1. I called MS Lifelines, and they assured me that they would still cover the cost...it was just that UHC was not going to be willing to accept it directly from them. I had to pay the copay, send it to MS Lifelines, and they would send me a check.

Ok, clearly just a huge burden placed upon their customer as part of a dispute between two companies right? UHC still hates Rebif, but instead of working out an equitable solution with the manufacturer, they would rather take it out on me...they customer to whom they regularly send marketing info and emails to telling me how much they care about me. So they make me do the claims billing that they could do very easily and efficiently as a way to try to make it even more inconvenient to continue taking the medicine that is working for me. Lovely!

So along comes the new year. I beefed up my FSA for the year expecting to have to pay some out of pocket full deductibles. Imagine my surprise when my first refill went through with no copay due. Hooray! Right? Wrong. The next time I tried to refill, I was told they had to get annual reauthorization from my neurologist. Ok, that is a simple routine process right? Might take a few days...but no big deal, right? Wrong! Denied.

Said so right there on the letter that there was no evidence of clinical benefit from the medicine. Oh! So that is what it is. UHC wants me to go off the medicine and suffer a relapse or increase in symptoms, and THEN they will let me take it? Seems totally reasonable for a company that is all about preventative health care right? Lets make the customer a guinea pig and force him off his meds so we can save a few bucks!

I suppose you are all thinking that some committee of neurologists and MS specialists at UHC must have been behind that claim of no benefit right? Surely they would have to be very knowledgeable about MS to make the claim in writing that one of the most widely used of the CRABs with a long record of effectiveness has no clinical benefit? Wrong again. It was a Family Medicine doctor who was responsible for my denial. Somebody who has never met me, never reviewed my chart, never seen my MRIs, and who is not a neurologist or an MS specialist decided that my neurologist and I didn't know what we were doing and that I should try one of the UHC preferred meds instead.

After being off Rebif for about 3 weeks, I was able to get a new MRI, get in to see my neurologist, and have her write a new rebuttal to UHC asking them to reconsider. And now, a weeks later, they have finally decided that maybe taking a medicine away from somebody who is stable on it was a bad plan. And with that, they have approved my refill to start back on Rebif. So if you are dealing with insurance companies and they are making stupid decisions, don't give up! Keep fighting, and maybe you can get them to see the light.

I am sure UHC will come up with some other way to screw me over next time, as they have made it clear they still don't like Rebif...but at least we won this round!

great letter. and great advocacy. i salute you. hats off...

i was getting up in arms just reading your letter. i was going to say send it everywhere; the tv stations, the insurance commissions etc.

it's interesting how they have open enrollment, get you to sign up and lock you in to terms for a yr, BUT, they can change the rules whenever they want and you're out of luck.

fight, fight, fight wherever you find injustice. that's my motto.