Friday, November 8, 2013

$150,000 in My Fridge, and I Feel like Crap

Okay, to be completely accurate, about four weeks ago I did have $150,000 in my fridge, but now I
only have about $100,000 sitting next to my butter dish. And that small fortune has done nothing but make me feel, at times, worse than I’ve ever felt in my life.

So, how did I acquire such a windfall? Did I find a bag of money in Central Park? No. Did I win the lottery (again)? Nyet. Did I slam my wheelchair into the shins of a Wall Street demonoid (the streets of NYC are lousy with them) and steal his pocket change? Nope. All I did was take delivery of five tiny vials of a medication called Acthar Gel. Each of those vials costs about $30,000, and the stuff in those vials did nothing but make me feel vile. Harrumph. To make the story even more interesting – and disgusting – just about 15 years or so ago those same five vials could be had for about $250. So, this is not only a story of my medical misadventures, but also one of pharmaceutical company shenanigans, which I’ll get into later.

Before I start my tale of woe, let me first state that my reaction to Acthar Gel is entirely atypical, so strange that my physicians are completely confounded as to what went down. The stuff is generally considered quite benign, and the root of my problems with it is my ever baffling, completely fracked up physiology, which the best minds in the business have not been able to figure out. So please don’t use my experience as any kind of example. If you are currently using Acthar Gel, or at some time in the future may be prescribed the stuff, I can just about guarantee that your experience will bear no resemblance whatsoever to mine. The substance is almost universally well-tolerated, and has been used by thousands of patients suffering from a variety of maladies with very few complications. This essay shouldn’t be seen as an indictment of Acthar Gel, but rather a testament to the depth of the medical mystery that is me.

Acthar Gel is simply an injectable, time released form of ACTH, a hormone naturally secreted by the pituitary gland that signals the adrenal glands to produce an increased amount of the body’s natural steroids. When used to treat MS, it’s usually given to RRMS patients who are experiencing an exacerbation, just as intravenous steroids are used to treat MS relapses. In both cases, the steroids – whether generated by the body itself or given intravenously – work in a variety of ways, primarily by suppressing the immune system and reducing inflammation in the central nervous system.

I definitely do not have RRMS, but my illness does look a lot like PPMS (Primary Progressive Multiple Sclerosis), a form of MS that afflicts about 10% of the MS population and is defined by its complete lack of relapses and remissions. Its sufferers instead experience a steady decline in neurologic function over the entire course of their illness. Though my symptoms and disease history do at first appear somewhat typical of PPMS, my diagnostic test results and certain other anomalous features of my disease don’t fit the PPMS mold. In addition to my neurologic problems, I have signs of some kind of systemic autoimmune activity, including widespread endocrine dysfunction. In other words, my hormones are a mess. If you’re interested, you can read more about my medical eccentricities in an older WK essay (click here).

Since people with PPMS generally don’t exhibit much inflammation in their central nervous system, steroids typically have little if any positive effect on them. This is one of the aspects in which my disease seems to differ from PPMS. Back in 2006, about three years after my diagnosis, my disease started to spiral out of control. In an attempt to put the brakes on my deteriorating condition, my neurologist ordered a 10 day course of IV Solu-Medrol, along with a weeklong stay in a highly regarded rehab hospital.

Remarkably, the steroids had an almost miraculous effect on me, restoring physical function that had been lost for months or years. I could suddenly use my right hand again, lift my right arm over my head, and my walking improved dramatically. Unfortunately, these improvements proved to be only temporary, fading within four months of my infusions. Even more unfortunately, I developed a very rare side effect of intravenous steroids called Avascular Necrosis (AVN), a condition which causes the bones in some of the major joints to literally die and then crumble. The AVN attacked both of my shoulders and hips. These days I’m living with the equivalent of two broken hips, and shoulders that are cranky at best. If I were healthier, I’d have had my hips replaced years ago, but in my current state it’s doubtful I’d be able to withstand the surgeries or do the necessary rehab afterwards.

As a result of the AVN disaster, doing intravenous steroids is obviously no longer an option for me, which is unfortunate because steroids are the only treatment I’ve tried which has significantly impacted my disease in any positive manner. That’s where the Acthar Gel comes in. By stimulating my body to produce more of its own natural steroids, it was expected that I would get at least some of the benefits of intravenous steroid treatment without incurring the risk of furthering my Avascular Necrosis. The solution seemed perfect, except for the exorbitant price of the drug, $30,000 for a tiny 5 mL vial, of which I’d need five. Surprisingly, my insurance company didn’t balk at the hefty price tag, and a few weeks after my doctor first mentioned my trying Acthar Gel, I received five little very valuable vials of Acthar Gel via Fed Ex.

Acthar Gel is an injectable drug, and the day after we received the stuff, a nurse came to instruct my wife Karen how to administer the injections. The plan was to do three weeks of injections, with the doses descending each week. The nurse herself gave me the first injection, and things seemed to go smoothly enough. Karen then gave me an injection each evening, and for the first few days I felt similar to the way I had felt on intravenous steroids. Kind of speedy, a little bit agitated, trouble sleeping, but nothing too terrible. I didn’t experience any obvious benefit, but we were just starting on the three-week course prescribed by my doctor.

After the fourth or fifth day, though, I started feeling pretty crummy. I developed a fever (I seem to always run a fever, another strange feature of my disease, but now the fevers were higher), my vision became blurry, my neurologic symptoms worsened, and I generally started feeling like the proverbial wet dishrag. I consulted with my doctors, and the general consensus was that my body was just adjusting to the Acthar Gel, albeit a bit strangely, and there was nothing to worry about. A few days later, much to my chagrin, I found myself feeling just about worse than I’ve ever felt in my life, barely able to get out of bed. I was told to stop taking the Acthar Gel after one more injection at a reduced dose, so as not to shock my body by stopping the stuff completely cold.

I hoped that after coming off the drug, my body would bounce back, and I’d get back to my good old, bad old normal. Instead, a couple of days later I was feeling worse than ever, and began experiencing a most inconvenient symptom. To put it bluntly, I started peeing more than I thought a human being could ever possibly pee. Really, it was incredible. For a few days, I became a living fountain of urine, a perpetual passer of piss, the mysterious source of my own Yellow River. This soggy experience only increased the misery of the situation, and lent an air of the surreal to the whole affair. I managed to stop urinating long enough to make it to my endocrinologist, who did a series of blood tests that came back, surprisingly, fairly normal. Unfortunately, I felt decidedly not normal, but expected that I would soon start feeling better. My expectations, however, were not met.

Now, about four weeks later, I’m still feeling like I kissed the “A” Train between stops (a very New York centric reference, I know. Just use your imagination). As part of my overall endocrine dysfunction, my cortisol levels generally run low, but now they are really low. I’m weak, get dizzy whenever I try to stand up, have absolutely no appetite or energy, and I’m spending the vast majority of my time in bed, and I hate spending non-sleeping time in bed. Suffice it to say, I’ve definitely seen better days.

To think, this dreadful experience only cost my insurance company $150,000, and I have about $100,000 worth of Acthar Gel sitting in my fridge, totally useless to me or anybody else, since it’s illegal to transfer a prescription drug, once delivered, to another patient. I don’t think the stuff has any street value, or I’d send Karen out in a trench coa to t try to sell the stuff to some desperate Acthar addicts. With the profits we could put a 10% down payment on a really small one-bedroom condominium here in NYC.

So, that’s the story behind the lack of new posts on Wheelchair Kamikaze for the last month. I’d like to thank all of my loyal readers for sticking with me. I’m desperately hoping that I’ll be feeling better soon enough, and be able to get back to my fairly loose schedule of regaling the Internet with riveting tales of life with a chronic progressive disabling illness, my take on latest in MS research news, and snippets of the random crap that regularly pops into my noggin.

Before I sign off, a few words about the outrageous price of Acthar Gel. As I mentioned numerous times above, a single small vial of the stuff now sells for about $30,000. One might imagine, then, that it must be some new high-tech compound that cost the drug company that manufactures and sells it, Questcor Pharmaceuticals, millions and millions of dollars to invent, develop, and bring to market. Wrong. The history of Acthar Gel dates back to the 1950s, when the Armour meat packing company was trying to find uses for the animal parts that didn’t make it into the food chain. They discovered that hormones extracted from pig pituitary glands could be used in humans to treat a variety of illnesses. Thus, Acthar Gel was born about 60 years ago, and approved by the FDA in 1952, before the agency required clinical trials to prove a drug’s effectiveness.

For much of its long history, Acthar Gel was used to treat a variety of arthritic, autoimmune, and rheumatologic conditions, and the price of the drug was relatively inexpensive, about $50 for a 5 mL vial by the time the mid-1990s rolled around. By then science had learned to synthesize many of the steroids that Acthar gel stimulates the human body to produce, which severely limited demand for the drug. For the last few decades, Acthar Gel's primary use was to treat a condition known as infantile spasms, a rare epileptic disorder that usually strikes children before the age of one, which can sometimes be fatal. Since infantile spasms afflicts only about 800 patients a year, and Acthar Gel is relatively expensive to produce, making the drug became a losing proposition. Questcor bought the rights to the drug in 2001 for a mere $100,000. Almost immediately, they raised the price of each vial to about $1200, and then in 2007 hiked the price astronomically, to $28,000 for a single 5 mL vial of the stuff. They didn’t change the formula and didn’t refine the compound, but in six years took a cheap, rarely used, 50-year-old drug and turned it into a blockbuster generating hundreds of millions of dollars in profit per year.

How was this financial magic act achieved? All through the graces of a law called the Orphan Drug Act. In the United States, this law grants incentives and privileges to companies that manufacture drugs that treat diseases that affect 200,000 people or less. The intent of the act is to give pharmaceutical companies reason to pursue treatments for diseases so rare that research, manufacture, and marketing of drugs intended to treat them would not otherwise be profitable. Since infantile spasms afflict far less than 200,000 patients, Questcor received orphan drug status for Acthar Gel, and indeed the drug is a godsend for the little victims of that epileptic disorder.

Once a drug receives orphan drug status, though, there’s nothing to prevent the company that sells it from finding other uses for it, and that’s just what Questcor has done with Acthar Gel. Along with raising the price to $28,000 per vial in 2007, Questcor embarked in a massive marketing campaign, in an effort to convince physicians to prescribe Acthar Gel for a wide variety of conditions, including MS, nephrotic syndrome, and rheumatologic conditions. Today, the treatment of infantile spasms only makes up about 10% of the drug’s sales, and Acthar Gel produces hundreds of millions of dollars in sales per year for Questcor pharmaceuticals (in the first nine months of 2012 alone, Acthar Gel sales amounted to about $350 million). Since dramatically increasing the price of the drug in 2007, Questcor’s stock price has skyrocketed, from $.60 to about $58 today. Pretty good investment, right?

For more info on Questcor pharmaceuticals and Acthar Gel, you can read an excellent article in the New York Times (click here), from which much of the above information was derived.

In short, Questcor pharmaceuticals managed to take a rarely used and almost forgotten drug, and in the course of less than a decade turned their initial $100,000 investment into billions of dollars in profit. All this without doing any research and development, attaining incredible returns almost strictly through the magic of marketing, along with a little help from a well-meaning law meant to allow patients suffering from rare diseases at least a glimmer of hope that a treatment for their disease might be developed.

Well, after recounting the above story, I feel even sicker than I did when I started this essay. It’d be bad enough if I was made this ill by the drug at its original price, five vials of which would’ve cost $250. Knowing that the stuff cost my insurance company $150,000, well, all I can say is that I’m going to crawl back into bed as soon as I can muster the strength to leave my computer desk.

PS, all well wishes and healing thoughts will be extremely welcomed…


  1. Your good humor and your brilliant writing skills are a tonic for our minds and bodies !!!

  2. Feeling awful for you, this is painful to read, let alone experience for you and Karen. Your peeing soinds like diabetes insipidus. Was your urine looking like water? Did they look at your pituatary(sp?) labs? Will do some research. I like, a pathologist who breaks it all down. he admits when he is stumped. You are unique Marc, sending healing thoughts your way.mary

  3. Well wishes and healing thoughts to you. That's a big burden of garbage to absorb (about Questcor) there anything that can be done about this sort of profiteering, do you know? Any letters I can write? If I find anyone in need of Acthar Gel, I'll send them your way.

  4. The approved rape of the American public is alive and well.
    Integrity is a bad word in the corporate world, especially that of BigPharma.
    In the meantime, millions of people are suffering, dying and making lots of money for them. I
    think we are called "collateral damage". Sound familiar?
    My letters to these companies always get me a nice note of condolence/sympathy but the status quo remains. Am I bitter?
    You bet.
    As your mother woud tell you, Marc, try chicken soup (if you can find a real, undoctored one..pun intended).
    It is cheaper and proven to work.
    Heal, Marc, I miss you.
    Kisses and Hugs (I can say this as I am a senior citizen..another pun)
    PS. Watch it, you could be on their Hit List

  5. Hey Marc,
    I know what you mean by "getting back to my good old, bad old normal".

    I had a sudden attack of gall bladder stones (escaping from their designated residence) that landed me in the hospital for 4 days of tests and procedures and that "wonderful" restricted full liquid diet. Fun, fun.

    During the stay I had a catheter which made my bladder think it's suppose to go all the time and needless to say now that I'm home the bladder doesn't get the message from the brain (due to ms) to go only on command. Oh, the many joys of this damn disease!

    So.... home now recuperating after gall bladder removed -luckily laparoscopy- but still set back from the whole ordeal hoping to gain back strength and pre-surgery badder function (which wasn't great to begin with.)

    Now I know why I avoid doctors and hospitals like the plague. The many adventures of our ms life.


    1. Marc,
      Thought others would want to see this. This is a must watch about George Bokos - The Greek from Detroit in memory of him.
      This is George's story.

      I received this in my email From the Myelin Repair Foundation website:
      youtube video honoring George Bokos - The Greek From Detroit

      Still thinking of you Greek.

    2. Dee,
      :ost your e-mail address so could not send you my "oh no", sorry to hear what you are enduring...again.
      Hope you are back to some kind of feeling O.K>

  6. Know a good neuro endocrinologist? Found this article that explains the endocrine system but not your unique response. I would think damaged receptors may be messing with your feedback loop. Read the merck

  7. Hi Marc, over the years I have listened to your dx and disease description and I now wonder about your immune system. The reading I have done lately with Mr Ed Murray has given some insights regarding the suppressed immune system that is most often talked about in PwMS, which ever form of the disease they have.
    At the same time the insights of stealth pathogens and the way that not one but many are now being noted as a progression of assaults on the immune system. The single pathogen doesn't appear to be a problem for the immune system but what is becoming noted is the series of assaults.
    The chances of detecting any of these pathogens is minimal if not nil because of the life cycles and the intracellular or spirochete/cyst forms. The ways that are most commonly used to detect the pathogens are for only a very few of the species of each and the serology method is only going to detect the pathogen in one of many life forms if, and only if it is in the blood, which is not the usual residence for any of these life forms.
    So if these pathogens have extracellularly infected cells of the immune system such as macrophages which is extremely common then the pathogen has enabled itself to be invisible to the immune system. If this same pathogen is living in a bio-film then the other cells in the bio-film 'learn' from each other the survival methods and can share DNA and Genes. If the pathogen load is decreased by for instance ABx treatments or Herbal Treatments the macrophages are still programmed to 'not see' the pathogen in future and if the immune system has become suppressed by the modification then the entire immune system will suffer and so will the PwMS or other de-generative/auto-immune disease label.
    So in the cause of CCSVI and any other form of BBB breach such as injury the immune cells that leak into the CNS with bloods are able to destroy cells they are not programmed to see as 'self' as well as looking for pathogens etc and any damage cells that need removing.
    When this is compounded with a dysfunction in the Vit D synthesis process where calcitriol the bio-available form of Vit D is very low in the CSF but moderate in the blood supply, which has been found in PwMS, then an added cascade occurs because the calcitriol is the product that 'manages and dictates' the functions of immune cells. One of the vital ones is apoptosis of the immune calls when they need to be reset or renewed and when the cells are in an environment with low calcitriol such as occurs when there is a breach of the BBB the CD4 and T cells are in effect immortal and able to live beyond their time and destroy myelin at will.
    So what I am trying to say is that there is a cascade of events that line up to cause the dx of MS.
    Marc have you had you immune system checked by CD 57 or some other method that gives and indication of status?
    The second question would be have you have calcitriol not Vit D tested in your bloods and CSF?
    If there is a difference in levels and the level of calcitriol is low then there 'may be' a way of helping to get your immune system back on track. It won't fix the issues causing the breaches of the BBB, or if there is a pathogen load, BUT, it 'could' re-set your immune system and help to fight any pathogens in your system.
    Worth thinking about I believe ;)

  8. Hey Marc, Glad to see you back! I feel so bad for you that this (insanely overpriced!) drug did nothing but make you feel awful. I am in awe of your willingness to try different treatments, my fear of your exact situation always stops me from trying anything new. I truly hope that you are able to return to your prior state of f#&ked up normal, not just for your sake but for my own selfishness....I have missed you! Sending all good thoughts your way.

  9. Hello Marc:
    You're like no other, what with your 'rivetting tales', 'your take on MS research' and 'random crap'. Now I 'need' to read your essays for an antidote to misinformation and goggle-dee-gook of the media and medical/pharma system. In Canada we are a hair's breath away from the US style of big pharma style of medicine. In the reading for your saga I was happy about the fact that your insurance company covered the 'cost' of the Gel. Thanks so much for your essays.
    To NZer1: BBB= blood brain barrier, CNS = central nervous system, CSF = ?, CD 57 = ? Could you fill in the blanks for me please?

    1. Wikipedia:
      Cerebrospinal fluid

      CD 57
      This antibody recognizes a 110kDa protein on human lymphocyte cell surface that is identified as CD57. NK-1 marks a subset of lymphocytes known as natural killer (NK) cells. Follicular center cell lymphomas often contain many NK cells within the neoplastic follicles. NK-1 reportedly also reacts with a variety of cell types in nonlymphoid tissues. NK-1 stains neuroendocrine cells and their respective tumors.

  10. I hope you'll feel better soon Marc!

  11. Healing thoughts and good wishes are being sent, Marc. Hopefully someday - make that someday soon! - one of these treatments works out for you!

  12. Sorry this thing keeps hanging on, whatever it is. For what It’s worth, your description of it did trigger some nice alliteration: “perpetual passer of piss.” Small consolation; yeah, I know. Anyway, on a more serious note. I notice that one of the potential side effects of Acthar is infection. I remember from the (very) old days, when ACTH was the only thing available for MSers and I received infusions, that my neuro warned me about staying away from people because my immune system had been depressed by the infusions. So, here’s my crazy point. Is it possible that after several shots, you opened the door to a virus/bacterium already residing in your body but which was usually controlled until your Acthar shots? And so what is causing all your symptoms is not the Acthar itself, but this newly freed infection? Just a thought. Maybe I’m missing some essential medical point here.

  13. Well wishes from a loyal reader.

  14. Marc, You always have my well wishes and healing thoughts; I was wondering what had happened to you this last month. I'm sorry that it was something so dismally medical.

  15. Thanks for the update. Sorry for what you ate going through and pray it stops soon. Looks like there is an opportunity for anyone wanting to make an alternative/generic version of ACTH.wish I had the money just to create some competition.

    1. Hi Marc, I'm still around periodically as you are, although I am not nearly as progressive as you. We seem to be on a paralel medical pharmaceutical track as I have read of your past experiences with IVIG Sorry to read of your latest experiences with Acthar Gel.

      I also took it for only one period of 5 days and it affected me the same way. I was in bed and have had continuing UTI's over the past year. The bacteria causing infections changes with every antibiotic I take. After a year of feeling like crap I told the urologist that I was through with the antibiotics until he can come up with a reason for the UTI's. I told him this is a form of "insanity....Repeating the same old same old over and over and expecting a different outcome!"

      Just wanted you to know I hope you get to feeling better really soon as I also look forward to reading your blog and comparing notes on our journey with "whatever" this MS turns out to be. Blessings, Gabriella

  16. You are not alone. I have had MS since 1970 DX and way back then ACTH was the only treatment. It seemed to work at first, but then it made me much worse. I was at U of M hospital and they discontinued it. Since none of the disease modifying drugs work for me, my neurologist suggested, after a bad exacerbation last spring, that I try the 'new' Acthar Gel injection at home. The first month, I took it for 5 days and felt 'kinda' bad. The second, third, and fourth months following, I gave myself a shot for three days a month. I felt worse and worse every month. Finally (I know, a slow learner) I said that's it!! Symptoms: legs too weak to stand on, GI tract quit working completely, couldn't see out of left eye, acute pain in all joints and muscles--I would lay on the sofa and Don would put hot packs along my back from head to toe., and on and on. It is now November and I am just now able to use my walker and we're looking for a power wheelchair. When the Acthar rep called me I told her about my side effects and she said they had never heard of any of that and implied that I was overstating the 'problems' I had.

    Needless to say, I was so happy/sorry to read your blog this month--validation, thank you!! Actually I enjoy reading your every blog and love your photography. I'm glad you are feeling better after the last $$$$$$$ miracle drug.

    Diane Petersen

    Diane Macall Petersen

    "There must be more to life than having everything." -Maurice Sendak

  17. I'm sorry. I seem to be in the same boat as you...I had a big hissy to be put on that stupid tecfidera, and I've steadily gone down hill - quite a problem since I'm a teacher (and now I can barely walk). I have been thinking more about your idea of no symptoms and then a quick death. If I can just get my daughter through high school and into college, I guess it'll be time. MS sucks. Right now I feel very sorry for myself, and keep reviewing any harm I've done to others in my life. I'm being punished, I figure.

  18. I look forward to your posts, because I know you are still waging on against this evil demon of a disease. I wish they could just find some sort of relief for your suffering. Have you any idea how wonderful of a writer you are? Surely you must. I first started reading your posts, because I was newly diagnosed with MS this year and I am also a photographer/writer. Now I read your posts, because I am captivated by your writing style. You have a way with words. Thank you for putting your thoughts, feelings, and experiences out there for other MSer's to read. I truly hope that someday there is relief for your pains and struggles. Until next time my friend.

  19. Marc, sending healing thoughts and prayers your way! I too am so sad to hear such an unfortunate outcome with yet another drug. I admire your courage to even try the treatments you have tried and the humor and wit in which you share you experiences. Thank you for opening your life to all of us with MS. Your writing is truly amazing and is a gift to the world. With caring thoughts, Paige

  20. Me DX RR MS November 2001. Problems with bladder/bowel, tingly but can still work part-time. 2 weeks ago came down with chicken pox/shingles.
    Anyone out there in the cyberworld with virus activity like this?

    1. Problems like yours are discussed at

  21. My dog, Abby, would sit next to you and gaze soulfully in your eyes, offering her support. I wish I had words that would communicate the same...

  22. Your silence is torture for all of us who know and love you. Thank you for the update, you are always in my prayers. xoxo

  23. Oh brother Marc. It sounds awful and I am so sorry you are going through all of this. xo amy

  24. Hey Bub, Sorry this is taking so long to pass. What a B--ch! Keep you head up, we need you.


  25. This is a bunch of suck! Positive everything to you and Karen!

  26. Hey Marc, So sorry to hear about your setback due to the med reaction. It's so much "fun" to be an anomaly to the medical community when it comes to med reactions...I get anaphylaxis from Solumedrol, even though all the doctor's say that shouldn't happen. I've heard about Acthar and knew it was expensive...thanks for the back story about the cost history of the med. Hoping you begin to start feeling better soon. Thanks, as usual, for a great post...we've missed them.

  27. Marc--this post is terrible. Not because of your writing abilities...but because you really didn't need this setback, and it's hard to read about it. I'm sorry, and Jeff and I continue to send you and Karen good thoughts. The whole pricing situation for MS and orphan drugs is really insane.

    I take a MUCH cheaper Armour product--their dessicated thyroid medicine. Never knew the history of how the meat packing plants were looking for uses of the inedible parts. (I suppose we should be know better than to be messing around with pig leftovers. So not kosher.) Pease recover from this, get your energy back, and return to writing, entertaining and enlightening your readers. Maybe have some chicken soup with matzos, as an antidote to the wretched $150,000 pig juice? Please hang in there.

  28. Praying that you feel better

  29. So sorry about this crappy reaction to this crappy drug for whatever crappy disease it is. I've been feeling crappy for months now. On Tecfidera and no sustaining upswing other than 2 weeks mid summer of feeling pretty okay. Since then, back to Crapville and living there almost full time. sigh. I am praying you bounce back and return to the normal bad and then wishing you find something to help get you up from there. Hope today is a better day Marc.

  30. I'm sorry that you are afflicted with MS or any of the people who commented have been afflicted with MS, HOWEVER, your take on QCOR PHARMA is completely wrong. Their mission statement is to provide HP ACTHAR Gel to anyone who needs it irregardless of financial status. If you cannot afford it and your insurance will NOT cover it and you have a life altering disease (MS) they will get it to you for nothing. Now if someone can please explain to me again how QCOR PHARMA is exploiting people again, I'd appreciate it.

    1. You're kidding, right? A company takes a 60-year-old drug that had been available only 20 years ago for about $50, hikes the price to $28,000, and aggressively markets the compound for off label uses that have nothing to do with its orphan drug status, and you want to know how Questcor is exploiting people? It's very nice that they will give the drug to people who can't afford it, especially since their profit margins can be nothing but astronomical for all of those who do get it approved through their insurance companies. Acthor Joe should be the poster child of all that is wrong with the current US healthcare system.

      Guess my take on the company isn't quite out of left field, as the federal government has several investigations going on regarding Questcor's marketing practices, as well as an antitrust investigation centering on the company. Other than that, everything's on the up and up…


    Marc, see the above link. Acthar deadly adverse effects,. Came out a month after my injections

  32. Very interesting. Thanks for the link. I've also learned that no one is quite sure what exactly is in Acthar gel. Wonderful…

  33. "no one is quite sure what exactly is in Acthar gel".

    That is exactly what the pigs running Questcor would like you to believe, that their product has some "secret sauce" that cannot be easily duplicated. Smells like BS to me. Acthar has one labeled active ingredient, ACTH, and the effectiveness of the drug is due entirely to the production of Cortisol from the patients own Adrenal glands. Any claims otherwise have not been scientifically substantiated.

    The worst part of this tale of corporate greed is that there is no clear cut evidence that Acthar is any more effective or has fewer side effects than synthetic steroids such as Prednisone. Prednisone costs pennies per dose.

    My best wishes in your struggle with your illness.