Cephalon settlement requires physician payments to be disclosed

I have chronic complicated migraine w/ auras that are very strange (they were very infrequent in my youth and then hit with a vengeance in my mid 30s --I am 49 yrs old in 2009...-auditory, visual, olfactory hallucinatory constants, and some aphasia,balance problems etc (very stroke-seizure like in ways) are prodromal and aura type problems (auras come daily even when there is little pain)

But as the migraine is coming on very frequently --every 2-3 days with little ones in between and am home now with Soc Sec disability (worked as a Big Pharma detail rep for 24 yrs or so before finally having to get off the road as I would find myself at a customer's unable to speak clearly or stuck in my car unable to drive due to visual problems and pain).

I also found that there is very little long term migraine tx data to date that has been well done in terms of formal study (1st prospective data in 2005 JAMA shows in female migraineurs /w aura migraine is more than a very painful inconvenience--it can damage the brain progressively over time--almost like it is giving the patient w/ each bad migraine a bit of small TIA "like" damage /insult to the brain of this type of migraineur.

Neuropsych tests repeatedly in my case confirmed over and over (I had them done for 3 yrs in a row) in 2006, 2007, 2008 and they have shown that this "damage" --cognitive is real and permanent in my case. Intellect is there,but the "housekeeping functions" like memory for short term and some long term, ability to solve spatial problems,etc,ability to add, to do every day things are affected terribly and I hold a masters degree..these are deficits that are not coming back.

My docs tell me the only way to prevent more damage potential is to have less bad (high pain and disability level) acute migraines. Actiq had been the one thing finally tried after all the cheapo brekathrough meds and triptans to work and Actiq works in about 10-15 mins--not allowing the problem to escalate. Should the pain start to return (bad migraine)--re-dose--it keeps it at bay. Not so with an IM 15 mg morphine shot or 30 mg oral IR gen. morphine--that can take 45mins to an hour to begin pain relief and that gives the migraine time to really ratchet up. If meds for breakthrough come on this slowly--the patient nver"gets ahead" a of pain and the patient is sicker longer and misses work, family time, and other time they could be functional.

I read, work the way I can now that I have intractable, refractory type of migraine. I try to volunteer flexibly for chrnoic pain ngos and my local community and Actiq gave me a new lease on life when I began using it a few years ago. I do only flex volunteer work for Amer Pain Fdn when I can be active (Actiq helps me so much) ---when I finally began being listened to by my Drs--and not just being subject to a new Doc repeating the same drugs over and over that did not work for me the first 13 yrs prior--the ocnventional migriane tx therapies just do not work--we had to look at my problem from a different angle--that angle was finally treating me as an intractable pain pt. because that is what I am now--whatever the genesis of the initial problem... treating a pt humanely means at some point treating them "where they are"...-because if you cannot stop the process of migriane you have to stop the agony of the pain and get the pain to an acceptable level to live..I am doing well now after 6 yrs of long acting opioids daily and Actiq for breakthru high level pain..I feel better and want to stay better,but am afraid that the cost of this will eventually send me to the poorhouse(as long as I take care of my daily habits of health, exercise, stress,etc --not just meds I can be healthier--but I need the expensive meds). Everything possible I have written as cheaply as possbile. My insurer seems fine w/every generic except Actiq 800mcg.And were fine w/Actiq until it went generic.

To take so many yrs to find the answer and then not be able to afford it and possibly lose your quality of life--it is just so unnecessary in a world and in companies that have made as much money as Cephalon and Barr and Teva) and Fed Blue BCBS and Medco/caremark PBMs,
I had to travel to a subspcialists (still do in NYC form Virginia qrtrly--to get someone with enough fortitude to treat me and push the dose), but I am transparent with my treatment team in VA and NYC, we are a team--my pharmacist knows me, knows my counselor, knows my docs,etc.. et al.. we got this tx plan to a level that actually was higher than most docs want to use w/ long acting opioids in migraineuers,b ut went by clinical response not a cookbook approach and then after the cheaper short acting breakthru meds failed to work well enough we added in Actiq--and it was as if my prayers had been answered...--and the past 6 years have allowed me to be more useful to myself, functional to family and comommunity in gen. than hobbbling along with all the Depakotes and Imipramine, Pamelors and triptans in the world clogging the cognitive gears of my brain as they did 14 yrs prior w/ little to no lasting help not helping me pain-wise, and making me fat.

Actiq works so so well--gets in very quickly like an IV--gets out of system quickly too and you can re-dose if needed due to the short a -very short 1/2 life of the med. Actiq generics are off label for migriane but fEPBlue had no problem paying as long as the PBM was able to get branded drug. I suppose they got a Cepahlon kickback (rebate). For me--it was a tx success in every sense--economical long run for FEPBlue and the Fed govt where my husband's insurances comes from (NASA) as ACtiq was able when bad migrianes threatened to hospitailize me to keep me out of 3 day hospital stays or 3 days at home with IV hookups to treat migraine status situations for the past 6 yrs...and I am on a long acting opioid so I fit the bill for good candidate, except i do not have cancer breakthrough pain.

My unit usage was not excessive--at most 2 boxes of 30 monthly (aver user for noncancer pain was about 240 units monthly) --usually 1 box of 30 and we were saving FEPBLue money by reducing (no eliminatng admits to hospital and what was 3 times yearly for the past 10 yrs has gone to zero hospital inpt or ED hospital migraine status admissions for 6 yrs.

But, in 2008 , FEPPBlue and My PBM Medco cut me off from Actiq generic and Fentora--off label they said--never mind that it is not illegal to Rx off label and we had 5 plus documented yrs of sound medical /and medico-economic rationale for staying the course w/ generic actiq..

My subspecialtist HA neuro from Columbia Univ where I travel to get help (and my FP here is Virginia follows her advice) said "it's breakthrough pain--what's off label about that" -evens she did not know that Actiq was only approved for cancer pain...

---well, now I am having to pay out of pocket about 1to 2K monthly (depends if I need to travel to caregive for elderly parents, or want to do something that requires a bit more exertion,etc) what I will need to plan for in terms of breaktrhu meds and will that cost add Actiq to my monthly bill at $1000 or $2000 this month.

Why d id the generic price not go way down when patent came off so I could at least if I had to buy the stuff buy it at maybe even $500 for 30 units of Aciq 800mcg--no, price -retail went up... even after being denied all appeals thru the Feds who we have our Blue Cross thru--same BCBS as the Senators and my insurance had no options for tiering the co pyt of the drug and told me to use cheaper things that did not work well.
I do not know how I can continue to afford in perpetuity the cost for an old molecule (fentanyl on a lollipop or in a buccal tab).Our income is too high " to ride the Montel bus", yet I am going slowly broke paying for my medication at full retail,self-pay cost even though Ihave FEPBlue high option type insurance.

It is a crime that a lollipop made from a 50 yr old drug is 1K for 30 units of 800mcg box of generic ACtiq when I have a demonstrated Hx of positive outcomes meeting all other criteria save the fact that my pain does not come from cancer. Cephalon and Barr and everyone else involved in this (along w/ BCBS)should be ashamed of that kind of greed--to rob people of their life savings--those of us who are trying our hardest to be as normal as possible and as functional as possible and who have been your good custormers.I spoke to Stacey Beckert at Cephalon--who all but admitted that migraine pts were thrown under the bus by Cepaholon. well you all should not be detailing off label , but if something is medically rational, and once it is accept medical practice, if the patent expires, the generic should be available and at least partially covered or come down in cost for self-pay--and as much as I pay for insurance--I should not have to feel I am being extorted fromCephalon/Barr and and my helath insurer FEPBLue and their PBMs. There is no other comparative product to this type--delivery system--and suffering people should not be robbed by drug companies and this "off label" rationale should be looked at with a reality based in evid. based med.

Americans cannot bear the weight of this kind of cost in totality--esp for drugs that are essentially a hundred yrs or more old and
put on a stick or buccal tablet.

Sincerely,
Kathryn Hamilton
Hampton VA