Tuesday, April 1, 2008

Jessica's Story with Provigil Mirrors My Own

Recently, I blogged about pharmaceutical company Cephalon and the Federal Trade Commission. In that post, I discussed Cephalon's product, Provigil, specifically and mentioned that no financial assistance is available to patients such as myself, but I didn't discuss the hows and whys of the program. Basically their prescription assistance is non-existent to patients with ANY form of prescription insurance coverage, regardless if Provigil is off-formulary or exceeds coverage spending limits. NORD (National Organization for Rare Diseases) administers the program and is a stickler for 'the rules'. Even the 'big orange bus' offers no other suggestions for help with Provigil (and we all know how I feel about PPA.)

Today, I became aware of "Jessica's Story" which is strikingly similar to my own in struggling to afford prescription medication, specifically Provigil. Although she is 26 and has narcolepsy and I am 39 and have multiple sclerosis, we both have significant need to use Provigil on a daily basis to function and remain productive, tax-paying citizens who wish to avoid turning to Social Security Disability to survive. Sound familiar?

Jessica's Story is posted on the Prescription Access Litigation (PAL) blog. Before reading this post, I was unaware that there is now a class action lawsuit against Cephalon for their scheme to "pay off" the four generic drug companies who challenged Cephalon's patents for Provigil in 2005. This was the issue I discussed in Yippee! Yay! Go Federal Trade Commission.

Here's today's post from the Prescription Access Litigation (PAL) blog:

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 believe. 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.

Stories like these need to be heard. You can help spread the word by "digging" this story or you can choose to share your story.

We’re happy to post a response to this from Cephalon or NORD, if anyone from either of those entities cares to reply.
I can confirm Jessica's experience navigating the assistance program for Provigil as that was also my experience. Also, I have heard more than once the statement, "well, if you had NO insurance which covered drugs, then maybe..." from representatives of various prescription assistance programs.

Coincidentally, I found an insert in Sunday's Washington Post advertising Provigil. It was amongst the sale fliers for Target, Kohl's, Best Buy, and the comics. I guess Cephalon thinks that those people who look for things on sale and clip coupons would be the same folks, mostly woman and mothers, who need a "pick me up" to get through their hectic days. However, I fail to see a connection between frugal shoppers and an expensive drug like Provigil, unless Cephalon is looking to make it the next legalized "speed" on the drug market.


  1. I really am so happy I found this blog. I am 29 yrs old and was just diagnosed a few months ago with MS. I also blog about what I have been going through. Thanks again for everything you do to spread the word.
    All my best~

  2. Lisa,

    My 11 year old son has Narcolepsy and he takes Provigil. I take Provigil for my MS/LUPUS fatigue as well.

    In July we moved from So. CA where my son had Kaiser HMO Insurance; there was never any issue getting his Provigil Rx filled.

    Since we moved to TN, where he has the State Insurance (he is on SSI) it has taken us since July 2007 to get his prescription filled by his insurance. They refused to pay for it at all, at first stating that he should take another med like Ritalin (not gonna happen) and then initially approved a 30 days supply of (1) 100mg tab per day. He needs (2) 100mg tabs per day so we had to duke it out which took even longer.

    Literally...3 days ago, I FINALLY picked up his Provigi. They finally agreed to pay for (30) 200 mg tabs which I hear is cheaper for them. We will just cut them in half.

    It has been an 8 month nightmare trying to battle his insurance to get him the Provigil, which he cannot get by in school without.

    Thank god for samples, but many Drs do not even have samples of Provigil.

    This is such a load of crap that they are doing this to patients. They should be providing the assistance to ANYone who does not have prescription coverage for it; whether its due to it beingon the non-formulary list or due to a lack of insurance.

    Thanks for posting this.


  3. Amy,
    I completely understand your frustrations and difficulties as I've been there too with various prescriptions since being diagnosed with MS(and yes, I have insurance but it STOPS paying after $1500).

    Thankfully, I have received a large supply of Provigil samples from my neurologist and my psychiatrist, as well as$1000 worth of med filled by a county program here in northern Virginia. As a result, I haven't paid for Provigil directly since late spring of 2006 at which time I was taking 2-200mg tablets daily for MS fatigue and had just exhausted my annual drug allowance from my insurance policy. Nowadays, I only use 100mg on days I need it.

    BTW, I did not know that you also have Lupus. I have two close relatives who also have lupus. In stead of lupus, my 2nd autoimmune disease is rheumatoid arthritis. Sometimes it becomes difficult to know which one to blame for some of the pains or difficulties. No fun indeed.

  4. Lisa,
    Thank you SOO much for posting the NORD info on my blog. I was really hoping that post would get some info. to go on. I just have no idea what I'm doing, and when I start making calls, those on the other end often barely know what they are doing..LOL I am going to check this out!! =)


  5. I just came across this website when searching for financial assistant with provigil. I have narcolepsy. The financial assistant program for provigil is full. I have called several different agencies with no luck. I take 200mg 3x's a day. I lost my job on May 9, 2008. I currently have only ten days left of my provigil. I now have no insurance coverage. My co-pay is $500.00. I also have been just taking provigil when I leave the house. It is very frustrating.