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As Insurance Co-Pay Goes Up, Continuing Enbrel Looks Unlikely
from Gail H.

Hi Ed:  I'm 54, have had P since I was 17 yrs old.  Over time, have tried everything, including PUVA, Methotrexate (they say I’ve reached the lifetime limit), Soriatane (did not work for me), tar, sun (now I look like a spotted old prune) and diets.  Methotrexate did  work for periods of time but I never enjoyed the four liver biopsies [see Why Are We Still Undergoing Liver Biopsies?]. 

Finally after a severe breakout 2 1/2 yrs ago, I found a doctor who put me on Enbrel ... and it worked for me!  I have some lesions, but they are tolerable.

Now, my insurance company has decided to change co-pay coverage for biologic "specialty drugs" from $50 for a three-month prescription, to 30 % (or a $300 month max).  I am so upset over it!  That is $3600 a year, about 10% of my husband’s take home pay.  I contacted Enbrel's patient assistance and may qualify for a maximum of $116 a month to help with the $300 co-pay.  

I am wondering how many other people have had this kind of trouble with prescription coverage for Enbrel or other biologic drugs?  

Now I am faced with asking my husband to go broke keeping me on Enbrel, or going off it to some other lesser treatment and looking like a creature from a horror movie.  It just makes me mad that Enbrel and the other biologic companies advertise excessively in the mail (I was receiving many glossy mailers and called and asked to be taken off their list) on TV and in magazines.

We end up suffering the consequences of getting hooked on these expensive drugs and being shafted by our insurance companies.  Any response?  I did write to the board of trustees of the insurance company to voice my complaint, but doubt it will do much good.  Do you have any ideas of how we can stop this?  Biologics can be lifesavers when you are backed into a corner, but then the costs can really do you in.  -Gail H.


Ed’s Response:  I hope, Gail, that you’ve forwarded your story to the National Psoriasis Foundation?  If you haven’t, please consider doing so.  They are our best defense against wide-scale adverse insurance practices.  (If you go to http://www.psoriasis.org and search on “insurance” you will be directed to a number of helpful forms, letter templates and other information about dealing with stubborn insurers.  And call them to speak to someone who works on insurance issues:  800-723-9166.)

Of course you’re not alone.  Here we’ve heard more stories from folks who simply couldn’t get approved for the biologics at all.  Your experience is the first I’ve heard here about a mid-stream policy change that makes a livable co-pay no longer livable.  I have this sinking feeling, though, that it won’t be the last. 

About mid-last year, the number of emails I get about insurance companies denying biologics — or requiring that everything else under the sun be tried first — started to taper off dramatically and, if I remember correctly, there were a couple of months when I received none at all.  That should have made me feel great, but its effect was the opposite.  At the same time these complaints were diminishing, I was receiving increased amounts of email from people whose derms were prescribing biologics.  In short, I saw a tsunami of users descending on their insurers.

Then the good news came that Enbrel and Raptiva were listed in the new Medicare replacement drug demonstration — a good sign for the likelihood of seniors being able to receive or continue biologic treatments with government subsidy.

I began to wonder how the insurance industry was going to absorb a multi-billion dollar claims hit in the next year or two.  I don’t know the industry and have no vindictive attitudes about the industry, but as insurance IS a business I assumed something would happen to rock the boat.  Perhaps that’s already beginning. -Ed

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