Subscribe to RSS feedJessica’s story: No help from Cephalon for cost of Provigil
We recently posted an item discussing a New York Times article about Genentech’s drug Cerezyme . One reader posted a comment on that item, and her story is so compelling that we asked her if we could post it as a stand-alone blog entry. She agreed. Jessica’s story appears below, in which she describes the difficulties she’s faced in affording her prescription for Provigil, which she needs to treat her narcolepsy.
One of the reasons that Provigil is so expensive (about $200 for 30 tablets of 100 mg, and about $270 for 30 tablets of 200 mg) is that there is no generic version available. Why is there no generic version available? Largely because Cephalon (NASDAQ: CEPH), the manufacturer of Provigil, filed patent infringement lawsuits against generic drug companies that tried to bring a less expensive generic version to market. Then Cephalon paid them off, to the tune of more than $130 million, not to sell generic versions of Provigil until 2011 at the earliest. PAL member AFSCME District Council 37 Health & Security Plan is a plaintiff in a national class action lawsuit challenging these payoffs.
Earlier this week, it was reported that Cephalon’s CEO, Frank Baldino, got $13.5 million in compensation last year. This is much more than CEOs at other, much larger, drug companies earned last year, including Pfizer and Bristol Myers Squibb. This news will certainly be of no comfort to patients like Jessica.
Without further ado, here’s Jessica’s story. At her request, we’re using only her first name. The opinions expressed and events described below are hers and not necessarily ours.
Cephalon makes a similar claim as Genentech’s to provide “the drug free, if necessary, so that no one goes without the product because of its cost.” Cephalon’s PROVIGIL Assistance Program is solely administered by the National Organization for Rare Disorders (NORD). The NORD website asserts that their Patient Assistance Programs
“assist uninsured or under-insured individuals in securing life-saving or life-sustaining medications. In addition to the estimated 50 million Americans who have no health insurance, an increasing number of insured individuals have policies that do not reimburse for prescription drugs. Others have policies with low annual caps on prescription drug expenditures. NORD works closely with humanitarian-minded pharmaceutical and biotechnology companies to ensure that certain vital medications are available to those individuals whose income is too high to qualify for Medicaid but too low to pay for their prescribed medications.”
But it turned out Cephalon was not as “humanitarian-minded” as NORD would have you believ
When my health insurance dropped Provigil from their formulary in 2007, my Provigil copay jumped from $50/month to $234/month in addition to a $500 brand name deductible and my $130 monthly premium. I’m not sure why my insurer took Provigil off the formulary (I asked them and they didn’t know either) but I wouldn’t be surprised if it was in response to Cephalon’s prohibiting the generic versions that were supposed to come out in 2006. I realize $234 a month is nothing compared to many HIV and cancer drugs. But $234 is a lot when you consider that my Narcolepsy prevents me from being able to work more than 15 hours/week (with medication) and that I am only 26 and will be dependent on drugs like Provigil for the rest of my life. I was barely scraping by with a $50/month copay so I suddenly found myself unable to front the costs to buy even a one-month supply of Provigil. I had to stop taking my medicine which meant I could no longer work at all.
Desperate to find a way to get my medicine so I wouldn’t end up on welfare, I called Cephalon’s PROVIGIL Assistance Program and requested financial assistance. I was still willing to pay part of the costs, but I hoped they could give me some sort of rebate. Cephalon told me that because I had some form of insurance I didn’t qualify for any assistance, regardless of how high my co-payment is or my financial situation. They told me that if I was uninsured they would pay up to $500 per month (which is the retail cost of a month supply for me). They actually suggested I drop my insurance plan. It seems strange (not to mention unethical) that they would rather I drop my insurance so they could give me $500/month instead of just helping me with a portion of my $235 co-pay. It is cheaper for them if I have insurance. And if they can afford to shell out $500 a month to every uninsured patient, why can’t they just reduce the price for everyone so less people will need their financial assistance in the first place? They would probably make more money if they charged less because patients like me wouldn’t be forced to stop taking the medicine all together.
I actually considered listening to them and dropping my insurance so I could get free medication, but that ultimately wasn’t an option because I have other health conditions and my pre-existing conditions would make it unlikely I could obtain new insurance in the future. I contacted NORD back in December to notify them of the discrepancy between Cephalon’s assistance policies and those implied on NORD’s website. I asked for their help or their clarification if I had misunderstood. 4 months later, I have yet to hear anything from NORD.
My neurologist was kind enough to give me samples which I now ration out for days when I absolutely must function. I can’t afford enough Provigil to work so I have been forced to apply for Social Security Disability Benefits (which I’m told will likely be denied). I’ve tried getting in on clinical trials but I don’t qualify. The thought of spending the rest of my life half-asleep and a burden to the people I love is so depressing I often think I’m better off dead.
Unethical drug companies have managed to take everything I’ve earned in my short 26 years of life and turn it into debt without any hope or means to get back on my feet. I don’t know about Genentech, but Cephalon certainly doesn’t care if their customers go without the product because of its cost. Cephalon has no interest in the well-being of the very consumers that support them.
We’re happy to post a response to this from Cephalon or NORD, if anyone from either of those entities cares to reply.
March 31st, 2008 at 8:38 AM
I also suffer from mild narcolepsy, and I sympathize completely with Jessica’s struggles. I took Provigil (300 mg/day) for at least two years before I asked my doctor if there wasn’t something less expensive. He recommended I try 70 mg/day of Vyvanse, a relatively new drug that is a stimulant marketed for ADHD. It is less expensive and works much better for me than Provigil ever did. Jessica might want to discuss this option with her physician–I’m extremely glad I did. Good luck, Jessica!
March 31st, 2008 at 6:59 PM
Chad- Thank you for your Vyvanse recommendation. Unfortunately, I don’t think it is an option for me because I have severe anxiety which is contraindicated. I have tried other ADHD medications in the past and had to discontinue them because they increased my anxiety too much. Provigil has not significantly increased my anxiety.
I’m glad you were able to find a more affordable (and more effective) alternative to Provigil. I certainly think other Provigil users should follow your recommendation and ask their doctors about a cheaper option.
-Jessica
March 31st, 2008 at 7:26 PM
I have suffer with narcolepsy for decades, my husbands health care covers some of the cost but our deductable on this med. has continued to go up each year….$169. now for a thirty day supply 2-200 MG and a cheap helper of 60 MG of methylin Er…$10. I was doing fine with pemoline When the FDA took it off the marked in 2005. Makes you wonder who is in with Cephalon. I called As did everyone else to get help and got the same bunch of @$#^/. The sorry truth is Michael Moore hit is right on the head. As Americans we have no recourse but to pay the $$$$$$$$$$$$$$$$$ to make others rich off of our illness. It is sad that we think about having non functioning days to save money for our families. Life is too short to waste. I feel so sorry for Jessica she is 26, I am 57. I hope these greedy people someday realize our pain.
April 2nd, 2008 at 2:08 PM
Hi Jessica,
I can not believe this company would encourage being insurance-less or job-less in order to recieve a medication that enables independence and functioning. They could not be more specific when they disclosed quite openly…
“assist uninsured or under-insured individuals in securing life-saving or life-sustaining medications.”
My son is 11 years old and has Narcolepsy too, for which he takes Provigil (100 mg twice per day) (I also, take Provigil for my MS and Lupus fatigue.)
In July 2007, we relocated from So.CA to TN. We had a change of state health insurance because my son recieves SSI. The Provigil battle had just started then. It has taken 8 long months to finally get his insurance to pay for the Provigil prescription, which I finally picked up 3 days ago. They agreed to pay for a 30 day supply of the 200 mg tabs vs (60) 100mg tabs, which is ironically more expensive.
My son has an Autism Spectrum Disorder and he also has Generalized Anxiety Disorder. I have so much empathy for you and your dilemma about not being able to take some of the other less expensive meds. The insurance comapny kept on insisting that my son should try Ritalin or other stimulants, and we had to keep insisting that it is contraindicated due to his Anxiety disorder. I would never put him on a stimulant, I can only imagine how that would go.
I am appalled at the cunning tactics of Big Pharma Companies like the makers of Provigil.
I would keep calling and writing NORD, as much as you have energy to anyway. I am crossing my fingers that you do not end up having to stop working for such a rediculous issue. I think I am going to try to find out who or where I can send a letter too, this is so disappointing. They should be providing assistance to the UNDER Insured especially because they are likely one of the sole causes of being put on the Non-Formulary Drug Lists!
Take care,
Ammey
April 9th, 2008 at 10:30 PM
Yep, been there, done that. Shortly after my cobra ended and I went onto individual insurance I tried to fill my 3-month supply for Provigil at the mail order pharmacy. They called and said they’d fill it, but that one 3 month supply would use my entire prescription allocation for the next year plus cost me $700. Essentially it’s $9 a 200 mg pill and my neurologist had me taking 4 pills a day. (Perhaps she was getting a cut?!) She was shocked to hear it was so much but I looked into the programs like you did with no luck. So I was forced to go off of it for several miserable years. By the way, isn’t it lovely that the generic is available in many countries outside of the US? I guess we’re the only ones getting ripped off.
April 28th, 2008 at 8:19 PM
I APPLAUDE YOU FOR SPEAKING OUT. HUMANA HAS PAID FOR MY PROVIGIL FOR 2 CONTRACT YEARS, BUT AFTER SIGNING UP FOR 2008 HUMANA HAS REPEATEDLY DENIED COVERAGE. DRUG REQUIRES DR. AUTHORIZATION; MY DR. HAS SENT AND RECD A TON OF PAPERWORK TRYING TO GET THIS APPROVED FOR ME. I AM ANGRY, OUTRAGED. THERE MUST BE SOMETHING THAT CAN BE DONE BUT TO DATE I AM TOTALLY DISCOURAGED. MEDICARE REGISTERS NUMEROUS COMPLAINTS BUT HUMANA FAILS TO RESPOND. I FEEL AS IF I AM DRAFTING A CASE FOR FEDERAL DISTRICT COURT INSTEAD OF TRYING TO GET A LEGITIMATE PHARMACY REQUEST COMPLIED WITH. NOW WHO IS WATCHING AND OVERSEEING? CAN INDIVIDUALS JOIN IN THE FED LAWSUIT AGAINST CEPHALON? ANYONE W/ ANY INFO PLEASE COME FORTH. I AM GOING BROKE IN RETIREMENT TRYING TO JUST STAY AFLOAT. I TRIED TO GET OFF OF DRUG BUT ELAPSED INTO MAJOR DEPRESSION/SUICIDAL THOUGHTS. SO DECIDED TO ‘BONE UP’ AND PAY FOR IT – LEAVE SOMETHING ELSE UNCOVERED. IS THIS AMERICA?
April 29th, 2008 at 12:48 PM
Roselyn:
It sounds like you may be on a Medicare Part D drug plan, since you mentioned Medicare in your comment. The Medicare Rights Center might be able to assist you — see medicarerights.org. You have a right to appeal a Part D plan’s denial of coverage for a drug.
As far as the lawsuit against Cephalon goes, the case is not currently seeking additional individuals to be plaintiffs, but it is brought on behalf of all consumers and health plans that paid for Provigil — so if the case is certified as a class action, you and any other consumers who purchased Provigil would be part of the case and eligible for any relief that might come about through a settlement or trial.
To get updates about the Provigil case (and any others that PAL is involved in), fill out this form and indicate what drugs you have purchased.
April 30th, 2008 at 12:37 PM
[...] We’ve written about in the past on the PAL blog about, Provigil, a prescription drug used to treat narcolepsy and other sleep conditions, which is made by Cephalon (NasdaqGS:CEPH). [See previous posts such as “FTC member speaks out on Provigil generics payoff case,” and “Jessica’s story: No help from Cephalon for cost of Provigil“] [...]
May 14th, 2008 at 1:24 PM
Drug companies are in business to make money. Cephalon should be applauded for improving the lives of so many people. With that said, WE need to find a way to help Jessica. Does anyone know if there is a fund or anything where individuals can make contributions?
September 13th, 2008 at 12:08 AM
[...] many patients, this adds insult to injury. Back in March, we posted Jessica’s story: No help from Cephalon for cost of Provigil, a heartbreaking story of a young woman with narcolepsy whose insurance dropped Provigil from its [...]
November 22nd, 2008 at 12:01 PM
I was taking pemoline for over 25 years when it was removed from the market. I’m now starting Provigil but as I had to retire & go on SS disability when I ran out of pemoline I really afford the co-pays for all the meds I take.
I’ve been using samples but am about to run out of those. I was diagnosed with mild narcolepsy in 1984…I had to go for more sleep studies & the neuro I saw got angry when another neuro sent me for a narcolepsy panel. I found I carry both genetic markers for N.
Neuro one decided I don’t have narcolepsy so am pretty much sol with getting any help in paying for this too expensive drug that isn’t near as good as pemoline was.
I can’t take the stronger stimulents available because of my age.
In the future pemoline may become available again but I’ll probably be long gone before that happens.
In my opinion drug companies are corrupt.
December 21st, 2008 at 3:41 PM
I have been taking 100mg twice daily of Provigil since 2004. At that time my insurance covered a portion of the cost. I would pay $100.00 per month for 6 months (that’s with coverage) the remaining 6 months I paid full price. In 2004, the full price was somewhere around 300.00 per month Since then, that price has inflated to the current $435.00 per month (for 6 months). I can no longer afford this and fear that it will continue to increase. I have been forced to search the internet for generic and it frightens me. How do I know what I will get? Will it be effective? Will it be harmful? There are so many places I have been searching/comparing for hours, days, weeks and have become more and more frustrated and angry. I can’t believe what I’m reading regarding Cephalon! Greed, Greed, Greed. How much $$$$$ is enough? Why? Shame on them!
December 23rd, 2008 at 10:29 AM
Debbie and others:
Please note: There is NO FDA-approved generic Provigil in the United States. You should be very wary of anything advertised or promoted online as a “generic” Provigil. While many people do order genuine and safe medications through reputable online pharmacies, there are, as we all know, countless shady and fly-by-night operations selling products that may or may not be what they claim to be, could be counterfeit, and could be unsafe. So please be careful!
Remember, if it sounds too good to be true, it almost always is…
February 7th, 2009 at 1:40 AM
My husband has Narcolepsy with cataplexy and is currently taking provigil, which works great. When we first went to our insurance with the request for the prvoigil RX for 400 mg a day they said no and that he could have 200 even though his doctor said he must have 400 to help. We tried 200 and didn’t work for him. After fighting and fighting with the insurance I turned to our insurance advocacy told them our story and with the week my husband was able to get the 400 coveraged that we needed. Find out if your insurance company has this program, most do and see if they can help. If it doesn’t say on your card, look in the actual company its self, not just your plan.
February 16th, 2009 at 12:05 AM
Our 28 year old son sustained an anoxic brain injury 4 years old as the result of being over-medicated by the Army for combat stress. We spend a lot of time on the internet looking for things that will help him. With much private therapy — the Army doesn’t give him ANY — he is improving very slowly but the muscle relaxant medications he takes for spasticity leave him a zombie. Recent drug reseach has shown that Provigil decreases spasticity as well as increasing awareness. We were able to get a neurologist to prescribe it for him and it works very well. Then the bomb dropped. His insurance, which is Tricare, refuses to pay for it. Instead they would like to give him a stimulant that will increase his muscle tone and since he has PTSD also make him horribly anxious. For 6 months he was getting samples from the neurologist and the time when those samples dried up coincides with the increases in the price of Provigil. He was without it for 6 months and finally we have decided to just pay for it. Today I paid for a 30 day supply of 200mg tablets and the total was $430.89. Does Medicare pay for it? He was just approved for SSDI so I guess there is a waiting period before he can receive medical benefits? Is it cheaper to get 100mg tablets instead of 200mg tablets? I didn’t check that. I’m dumb.
September 19th, 2009 at 6:20 PM
I just paid $499.00 for 45 pills of 200 mlg. Up until this month (when my insurance hit the donut hole they stop coverage because I’ve reached a certain level of expense) I paid about $50.00. Now I will stretch my dosage out to 45 days. Still, the cost is outrageous. I’ve had (diagnosed) narcolepsy for 54 years. Frances
April 7th, 2010 at 4:19 AM
I have Narcolepsy . I recently was hospitalized for congestive heart failure. I am 68 years old and the Doctor does not want me to take Dextramphetimine. They wrote me a perscription for Profigil and Insurance has refused to pay.What will I do?
August 4th, 2010 at 4:13 AM
I USED TO TAKE PROVIGIL AND THEN MY INSURANCE DROPPED IT THAT WAS 2YEARS AGO WHEN I HAD A JOB AND INSURANCE! NOW I’M DISABLED AND HAVE NO TYPE OF INSURANCE AND I WILL NOT HAVE ANY FOR 2 MORE YEARS, 2 YEARS AGO I WAS PAYING $17 FOR ONE PROVIGIL,NOW MY DOCTOR HAS PUT ME ON NUVIGIL HE TRIED SENDING MY APP. TO GET HELP WITH MY NUVIGIL ITS BEEN OVER A MONTH AND I HAVEN’T HEARD ANYTHING SO I ASKED THE PHARMACIST TODAY HOW MUCH WOULD A MONTH SUPPLY OF NUVIGIL 150MG COST SHE SAID A LITTLE OVER $300 THATS JUST AS MUCH AS THE PROVIGIL!!! OMG WHAT KIND OF PEOPLE ARE THEY? GOD KNOWS I NEED HELP I DON’T KNOW HOW I’M GOING TO FUCTION EVERYDAY AND TAKE CARE OF MY FAMILY WHEN I’M SLEEPING MORE THAN I’M AWAKE!!!! WE NEED TO PRAY FOR THESE MONEY HUNGRY PEOPLE!!
March 26th, 2013 at 8:51 PM
I recently was put on Nuvigil due to sleep apnea..At first my insurance AARP/United Healthcare denied the rx that the doctor has electronically sent to them. I called United Healthcare to ask why it was denied, the lady told me it needed prior authorzation form completed which we need together on the phone, this was faxed to my doctoir for him to complete his required area, doctor also had to send copies of both sleep apnea studies results to insurance company to get the formulary added to my pharmacy list (PartD) as I have Medicare also.This took two weeks to get approved by insurance company board and added to my pharmacy list. My co-pay was $95.00.I was an insurance manager at a hospital for years. If a patient calls her insurance company, things get done quicker.Just some friendly advice for all. Hope it helps you.
April 25th, 2013 at 11:23 PM
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