This is what $8000 dollars worth of drugs looks like. A friend’s journey with Multiple Sclerosis

A 12 week supply, for a patient with Multiple Sclerosis

“Facebook is for the living, not the dying” – Regina Holliday

It finally happened. The day my facebook feed included information about a friend’s illness. This is the photograph my friend Matt posted to his feed. Normally I don’t play that close attention to everything in there, but this caught my eye immediately.  The caption is the title of this post.

When we talked on the phone, I understood that this was his “coming out,” his words, as he says in the old days, people with Multiple Sclerosis went into the closet. I remembered the image of Multiple Sclerosis that my generation has, which is that of Annette Funicello, the perky mouseketeer turned into debilitated image of her former self.

Matt has been diagnosed for about 4 months now, he had his first flare probably 10 years ago. We talked when he was first diagnosed. This time he told me to tell his story freely, which I am doing here.

I had a few questions, first of which was, “How do you pay for this?”

He told me, “If you’re willing to crawl through the muck, you get the health care you need. In the US, there’s a lot of fear before you feel safe. When I first saw the cost of the medication (approx $30,000 per year), I started crying.”

He described the most confusing way in which the medication is financed – because Washington State insurers do not cover medication costs over $3,000 / year, patients apply to drug assistance programs which appear to redistribute funds in a way I don’t understand. The drug’s website has a whole section of testimonials by patients who have received this assistance – a separate section from the testimonials about the impact of the drug itself.

We talked about what it’s like to live with Multiple Sclerosis today and where people get help. He told me,”This generation (of MS patients’) tool is the keyboard. They don’t have multimedia yet.” This means that patients are just getting into social media, and their tool of choice appears to be YouTube, because still photographs are not as descriptive as video for this group.

CCSVI : Patients and Doctors and Curiosity of the Medical Profession

Matt told me about a medical controversy that is near the peak of activity, and it seems to have all of the elements of a situation that stretches the medical profession’s relationship with patients. CCSVI is Chronic Cerebrospinal Venous Insufficiency. If you look at this screen shot from YouTube, you’ll see it clearly: A patient reporting recovery from a new treatment that’s unproven, originated overseas (note the advertisement on the right), that didn’t originate from the medical establishment. He wanted me to see two different physicans’ approach to this controversy, which I have embedded below from a report by KOMO in Seattle, just a month ago.

First Neurologist: Matt told me that this physician’s commentary was less appealing, he did not see him as a supporter of the community. I watched the video and actually felt like I might have taken the same approach in thinking about this new treatment. Note the discussion of the impact of social media.

Then I watched the Second Neurologist: Matt told me that this physician was more appealing, more a supporter of the community, and I could see the difference. His son has the illness, and he clearly has the curiosity to find out “why.” It ties back to my post yesterday about patient empowerment, the idea that our patients want us to be curious about the “why,” that’s what they expect from us.

I do have a frame of reference for this controversy and it’s HIV. I remember when viral load testing was considered heretical, patients were left to die in hospital wards with minimal contact from health care teams, and interested infectious disease specialists were shunned by their colleagues for exploring alternatives. I don’t know if this treatment will follow the course of HIV (acceptance and mainstreaming) or not, and Matt didn’t ask me to predict this.

Which physician’s approach is more appealing to you, and how should the profession be when our patients want us to be interested on their behalf?

“Don’t judge yourself based on what your body can do”

Matt told me that the expression, “You have MS, MS doesn’t have you,” is bulls**t. He said, “MS has you, it has me, it has all of us. MS makes a lot of decisions for us and it doesn’t ask permission.” He also said:

While MS may have me, it may decide what I do, where I go, or even what I want to talk about. But MS is not me. It has nothing to do with me, and neither does my physical body, and neither do any of the other physical attributes or challenging conditions that have affected my life.

The other thing Matt told me is to always remember that there’s someone in the room that’s dealing with and needs the health care system, and he wants people to “watch their vitriol” when they think about the health care system. He doesn’t blame drug companies, it’s “the politicians, for not giving the guidance they should be giving.” I pressed him on this point, and he repeated it as written. He wants them to see the images, and this is why he posted the photograph above in the first place.

Have you ever met someone that you instantly got along with, who’s super smart and gets all of your jokes, that you spend almost all of your time laughing when you’re with them, who lets you make mistakes and helps you learn from them? That’s the kind of friend that Matt is for me. I couldn’t have predicted that he would be the first person on my facebook feed to demonstrate the impact of affordability (or lack thereof) in health care. I’m sharing his story here because I care about this issue, and because I care about my friend Matt, and all of the people he will help through his strength.

Thanks for reading.

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30 thoughts on “This is what $8000 dollars worth of drugs looks like. A friend’s journey with Multiple Sclerosis”

  1. Ted,

    How ironic that you posted this great post on the same day that the medicare advisory committee approved Provenge (sipuleucel-T), a therapeutic vaccine for prostate cancer from drugmaker Dendrion that extend survival by an average of 4 months at a cost of $93,000. It is the first immunotherapy vaccine to clear the hurdles to approval, and people are divided about its real impact. And some believe that when it starts to be used for early therapy it will show a much greater efficiency. Plus c'est different, plus c'est la meme chose!

  2. Dr. Eytan, I've never seen your website before, so this was quite a surprise and incredibly refreshing to say the least, considering the subject matter discussed here, namely MS patient's costs, treatment options, and the entrenched industry interests involved in medicine.

    As someone trying to navigate such a system with as yet diagnosed MS (due to the aforementioned issues,) I'm reminded so vividly of a moment in popular film culture on the subject. Macdowell plays a doctor-in-training in the film, St. Elmo's Fire (1985.) The scene is where she's trying to explain to Estevez's character (Kirby) why she became a doctor:

    Macdowell: Here's the worst of all. When I first decided to be a doctor, I thought it was because I thought I wanted to serve people. But now, well, I'm startin' to get this funny feeling that what medicine is really all about is money.

  3. I don't agree with the way CCSVI is already being treated with surgeries before the surgery is shown to be effective or before CCSVI has been shown to be the cause of MS. I do appreciate that it's an extremely difficult situation and when there's no cure people turn to anything that claims to be the solution.

    The only thing that separates physicians from chiropractors, naturopaths and homeopaths is science. When we abandon the scientific process that is the foundation of modern medicine, we're no longer doctors. Liberation must be examined in a good well powered study before we even consider it as a viable therapy.

  4. thedocsquawk,

    This is the problem. You're right, except that people with MS suffer obvious and continued disability that's life changing each year. But the doctors are all saying, "hmmm… we'll have to wait and see, of course I'm not going to do anything with it, but if someone does and it works out then maybe…"

    Hold it, you mean I can't walk and you're just not interested? Can I please get a doctor who's at least interested when something that looks like it might be a serious step forward shows up? Of you specialize in MS why aren't you interested in it?

    I don't care if they disprove it or prove it using science, but do something. Don't just sit on the sidelines while your patients lose everything.

    The other thing you may not realize is that MS is really not very well understood right now. They basically don't know very much at all. There are treatments, but they're very dangerous and the side effects are almost worse than the disease. It's not like there are already satisfactory treatments, so for doctors to ignore this opportunity is a slap in the face to their patients, and the patients definitely feel it.

    When you have MS you always participate in studies, and this is one everyone with MS wants to participate in. Yes, we are making the decisions for the doctors because they have shown us recently that they aren't really interested. If we are going to be in studies, they're going to be the ones we want. And if there aren't any studies and some guy in Egypt is offering, many people are going to accept that offer. That guy in Egypt is saying, "Thank you, doctors in America, for ignoring your patients needs so I can take advantage of them."

    1. Sounds like you feel as though most doctors are ignoring the problem. I assure you, that's not my experience. Most doctors I know are interested, but confused about what to do. There are positive studies, and negative studies. There are passionate advocates on one side, and on the other their training and the majority of their neurologist colleagues.

      I appreciate what you're saying about how we need research now. I wish we knew now whether it works or not. But I can't think of anything else I can do right now as a physician except wait for the data to come. I'm not a vascular surgeon, nor am I a neurologist. I'm not a clinical scientist either. I've educated myself about it more than most others have and tried to keep an objective mind.

      I understand the desperation to get the studies done now, but I'm sure many of those private clinics in other countries aren't interested in publishing studies as much as they are taking money.

      If you do go for the procedure, I hope you have a good outcome. Be careful about where you go and ensure you have good followup. Sign up with a neurologist who can document your before and after symptom severity objectively so your experience may help others decide what to do.

      1. MS is a very interesting disease, it's not very treatable, it has horrible consequences, and yet the patients live often their entire lives with it. So what's happened is these patients are getting very vocal about their experiences.

        Non-MS doctors have it a little easier because by and large, their patients either die or get better. Either way, they stop talking about it, but that's not the case with MS patients.

        In fact, a few years in (or even a few months) MS patients can have almost a complete understanding of how the disease is treated and which treatments apply when, the side effects, costs and everything. They are effectively as smart as the doctors.

        Add to that the fact the we have experienced the disease itself, we get to this uncomfortable place of, "do we patients actually know more about this than you doctors?" Well, in many cases, yes.

        The assumptions made about the nature of MS are far from proven (for instance, the primary assumption that it's an auto-immune disease). It certainly is a disease with an auto-immune function, but a lot of doctors have jumped to the conclusion that the auto-immune function is the primary "problem", which hasn't been proven in any way. It's reasonable that it's a place where treatment occurs, but not much else is known.

        Patients are also beginning to realize there are different kinds of doctors. There are "auto mechanic" doctors that only apply predetermined fixes for problems. There are also "engineering" doctors that find fixes. There are many more doctors in the first group, and patients become frustrated when they realize these doctors aren't and are never going to research new fixes. MS patients especially, find these doctors to be almost literally useless, and MS has become a sort of "self serve" disease.

        "Do you feel you're ready for Tysabri? Well, you fit the general profile, so if you want, we'll start that."

        With a disease like MS, we really need "engineering" doctors. But when they show up, the "auto mechanic" doctors get all conservative and start working against them, or so it seems. (In reality they both are and aren't working against them.)

        So hopefully you can see the very odd situation we're in. I think I agree with everything you're saying, and I'm certainly not going to get the procedure done outside the US. I'm an engineer myself, and that is way too risky.

        However, there is this disconnect, at this particular time, between patients needs and doctor's skills and motivations. I don't dislike these doctors, and I'm totally understanding of their situation, but for a disease like MS, there should be a whole lot more engineering going on.

        For instance, these people on YouTube, why is it that they aren't flooded with requests from researchers to at least investigate their claims. Because there's no process for that. Here you have a whole bunch of patients making grandiose claims but proving them on camera, and ironically the it's the doctors who are paralyzed.

        There's no easy solution. It's a new deal. Doctors don't work like criminal investigators, but in this case they need to. There's physical evidence (related to CCSVI, but also to MS in general) all over the place, but nobody's looking at it.

        Why?

        (Hypothetical question.)

        1. Matt and Thedocsquak,

          Beautifully written, and Thedocsquak, I noticed, in a very positive way, how you modulated your initial response once the patient got into the conversation. This is a great example of the benefit of patient and family involvement and I think readers of this dialogue will notice it.

          I really like the idea of "doctors as engineers instead of auto-mechanic" – it is especially because I happen to know the kind of engineer that you are, which is part scientist, part artist. It is s perfect metaphor, and impressive to me how much you have learned about our profession in so little time. I can't wait for all patients to be similarly involved,

          Ted

        2. Matt,

          It's good that you have shared your MS experience and frustrations with those around you. Already a single photo has provided you with great support. It can be powerful.

          As an MS blogger, I'd like to welcome you to our community. Also, I'd like to share a post which expressed much of the same shock (and in my case serious financial frustration) regarding the cost of treatment. The post is almost 3 years old and the numbers would need adjusting, but the point is the same.

          The Value of Money or the Value of Health" Now, the medication shown is worth $12,000. One ounce of Copaxone = $3000.

          I am eager to catch up on your story and read your blog. Are you also on Twitter? Please let me know.

          Lisa

  5. Thedocsquak,

    I applaud anyone adding information so that people can make the best health decisions.

    I trained in at a medical school where we were taught to appreciate the successes and failures of allopathic medicine (University of Arizona).

    In the history of allopathic medicine, there are many examples of success and failure, so we have to be careful about elevating one approach above others in every case.

    If someone says we are differentiated by science, I would say that we've been differentiated by compassion and tolerance as well, in an inferior way, relative to our integrative medicine peers. Allopathic-ly trained practitioners like myself have been trying to close this gap for a long time. The stories of our patients are helping – a lot.

    When patients leave our exam rooms, it is their decision whether to follow our advice or not. I think what Matt is asking is for something very simple – "be curious, find out as much as you can using your skill and talent, help me make the best decision." Is that a reasonable request and what did you think of the two neurologist's approach in the post?

    Open to the dialogue because it is a dialogue,

    Ted

    1. You're right in that doctors should educate themselves about it. I can't agree with you more about that. That's why I've read as much as I can about it. So far my opinion is it's unproven and needs more investigation. Other physicians and patients may form their own opinion as they see fit.

      Certainly patients could use our guidance in this matter. But what must be kept in mind is this theory is new and convincing evidence to support it is not yet available. I'm completely with you about medical successes and failures, which is exactly why we need to be cautious about CCSVI. If there's one time we should be asking more questions, it's when things look too good to be true.

      If we compare CCSVI trials to the ongoing anacetrapib trials, should we start dumping this new drug into the water supply? No. We don't know enough about. Same with liberation surgery.

      Some may say MS is a more debilitating condition than hypercholesterolemia. But I submit to you that were it not for the scientific method and relying on evidence to guide our practices as well as what we tell our patients, we'd be never have discovered that Gleevec works, use goal directed therapy in sepsis, and we'd still be handing out estrogen and rosiglitazone like they were going out of style.

      All I'm asking is we apply the same level of scrutiny to CCSVI as we do everything else. Yes, the stakes are high. Yes, the testimonials are exciting. Extraordinary claims require extraordinary evidence. So far, none of the evidence has been extraordinary to me. I think Dr. Bowen said it best. "Science, in general, and my colleagues – we're more than willing to throw away old theories and adopt new ones if sufficient evidence can be raised to support that… A lot of the excitement about this has been pushed not by the scientific literature as it has by the social media and patients getting together and getting excited about this. The danger this time, a lot of the legitimate concerns of the scientific community have been viciously attacked in the blogs and the other social media outlets. Rather than expanding the discussion it has shut down a lot of scientific discussion of this, which is really unfortunate."

      MS sucks. But I have to keep my patients safe. It's a hard balance to strike, but until I know it is either extraordinarily effective, or at least safe, I can't in good conscience tell my patients to spend their savings on it. I have to say I agree more with the first neurologist, although I hope this therapy really is a cure.

      Great article, and great discussion.

      1. Thedocksquawk,

        As I mentioned above, kudos for altering the tone of your response and going back to read/listen/inform accordingly. It sends the message that you care.

        By the way, you say you aren't a surgeon or a neurologist, what are you? And do you have a name? Matt and I are not being anonymous….

        If you're still interested in the dialogue (and you may not be, but others will be I'm sure), a point for our patients, and a question –

        Point – Estrogen – We DID hand out estrogen for 40 years like it was going out of style. I cared for several women who nearly died because we did. Matt talks about crying when he saw the cost of his drugs above. I cried when I read the Women's Health Initiative results showing the impact of what we'd done. Science is not a savior in the absence of the simple question, "why?" that we didn't ask when our patients were hospitalized for cardiovascular events.

        Question – Keeping patients safe. Do we think as a profession we can succesfully do this? Or can we protect them and help them protect themselves? I encourage you to watch Regina Holliday's story to see how well our system kept her family safe. In most cases, patients want to share the responsibility, it's their lives.

        http://www.health2con.com/2010/11/11/patients-and

        Thanks for being engaged in social media, feel free to stay awhile, teach what you know and we'll do the same,

        Ted

  6. This great exchange is an example of the potential that sits before us now to recreate the assumptions of the conversations needed between patients, docs and researchers to really advance true efficacy. The good will flowing through this commentary needs to be bottled and imbibed daily by everyone at the table!

    The traditional manner and method for attaining useful, practical and safe application of any therapy is in veritable upheaval. When Matt asks states, "Hold it, you mean I can't walk and you're just not interested?" he speaks for everyone suffering from any condition that remains baffling to medical science. "…do something…" is as plaintive — and direct — as it gets.

    Meanwhile the medical research enterprise is entering a new era, as defined by the federally established Comparative Effectiveness Research regime now in early implementation. In large part it is a reaction to the medical research establishment's self-acknowledged acceptance over the last 15 years that the research is not producing good results. The new era will include observational trials, outcomes understood more thoroughly from the clinical encounter, that will help "decision makers:" doctors and patients, payers and policy people. More input, it is hoped for, from the "real world."

    I heard Susan Love of the breast cancer advocacy organization that bears her name tell a conference of leading cancer researchers two weeks ago, that the medical research process should "disintermediate the medical establishment entirely." Researchers should be work directly with the public as well as to patient populations, in order to create better results. Extreme, and already in action: see http://www.armyofwomen.org to see how her organization is reshaping the trial recruitment process.

    I also love Matt's notion of "engineering doctors." It reminds me of my own question, which is, why aren't MS and other conditions attacked like that critical technical problem shown in the movie "Apollo 13?" NASA engineers literally had to fit a square box in a round hole in order to save the lives of Lovell, et al. From a jumble of stuff piled in front of them, they came up with "something."

    How many people on the MS problem are attacking with the same all-in focus of the NASA engineers? Not enough, obviously. Or maybe the process in which they work is flawed or encumbered. Maybe the traditional approach is capable of yielding only so much of a solution. I don't know.

    What is so maddening for all is the observation that thedocsquawk cites from Dr. Bowen: "…we’re more than willing to throw away old theories and adopt new ones if sufficient evidence can be raised to support that…"

    We all believe that to be true. But if that's the case, what's the hold up? There are surely legitimate "hold ups," that need to be expressed more clearly so patients like Matt can come to believe that medical science really is doing its damnedest. That feels like it will require a sea change across the board.

    Susan Love's disintermediation project (345,000 members; 80% are not patients or survivors), illustrates Dr. Bowen's observation about the effects of social media: "A lot of the excitement about this has been pushed not by the scientific literature as it has by the social media and patients getting together."

    Patient-infused exhortations to "do something," shepherded across a social landscape by organizations like Love's, will only become more prevalent. If they can be conducted with the honesty and grace evident among Matt, thedocsquawk and Ted here, we can go a long way.

    1. Taylor,

      The traditional research model is indeed flawed. A few small organizations are doing something about that. As far as MS goes, the Myelin Repair Foundation is actively facilitating accelerated research toward the goal of developing myelin repair therapies. You may be interested in reading about their unique research model.

      Lisa

  7. Hey, All!

    I read this post and all the comments yesterday, but I was overwhelmed with so many feelings and thoughts, I knew I'd just babble all over the place. I hope to do better than that this morning even though my emotions are still high.

    First, some disclosures, so you might understand from where some of my attitudes and opinions were formed.

    I don't have MS, and I can't even imagine what the progressive deterioration of my body would be like. My knowledge of MS comes from a support group where many MS'ers had to stop participating because of the progression of the condition. Each loss was difficult and I had to quit the group. It's an emotional topic for me.

    I am an e-Patient and have been for some years due to the diagnoses of Fibromyalgia (FM) and Chronic Myofascial Pain (CMP) at a time when very little was kown about either. FM was considered to be a "trailer trash diagnosis": the latest complaint by bored housewives. My PCP at the time assured me he could treat me, then subsequently overprescribed muscle relaxers and pain medications. After he had his license revoked, I found a new PCP who was willing to learn how to treat me. We now both investgate new treatments for FM, including what he calls "complimentary care," and what others call "Alternative Medicine."

    @Ted Eytan: I am so grateful for physicians like yourself who are willing to listen, and then to speak out, about problems you see in our health care system, even when you don't necessarily have an answer. You help others form more intelligent and precise questions. I imagine those who work with and around you are influenced by you. Thank you so much for seeing the need for physicians who are "engineers." I'm glad Matt has a friend like you.

    @Matt: I feel so much for you! {gentle hugs} My experience is not your experience by any means. I think there may be some paralells, though. The medical community is investigating the cause of FM. 15 years after my diagnosis, there's some noise about a genetic predisposition and/or trauma while young, possibly followed by a triggering trauma as an adult for the condition to fully develop. This is exactly the same conclusion my support group had come to 15 years earlier, when I first joined. But, they didn't ask us. There are now a few (I believe 3) medicatios out now for FM. Two of them are SNRI's, a type of antidepressant which a good deal of FM'ers are already taking, like myself. The third is one with such considerable side effects most can't take it. There was a new one that showed promise, one that is already on the market for another condition, but the FDA postponed approval for FM use because warnings on the label weren't sufficient. Meanwhile, I spend most of my time in bed from the combination of pain, fatigue, depression, and side effects from the opiods that sometimes kinda sorta work (but mostly on my osteoarthritis). Would I jump at the chance to be in a clinical trial? Yep, as I have done before. Would I go to Egypt for a different treatment? I'm not sure, but only because the Middle East scares me. If it were Germany? I'm SO there. Anything that holds promise, I'm there for it. So I guess I understand a bit of your frustration. I am so grateful you were willing to have your story published here, and have allowed your emotions to come through. I hope your progression is slow, and that you find relief, and a CURE, for your MS.

    (An aside about medication costs: Most of the Medicare Medigap policies that are available, at least in my area, are no longer providing prescription conerage "through the gap." Also, a majority have doubled their premiums. I have no idea how I'm going to cover my health care costs in 2011, especially as this will be the second year Social Security will not be providing even a cost of living increase. Just had to point that out, for my own sake.)

    Annie

  8. Ted and Matt, thanks for this great conversation. I too struggle with the way we do medicine and science, albeit from the perspective of a physician researcher. Something Matt said made me think of the politician approach to answering questions: Answer only the question you want to answer, not necessarily the one being asked. Modern medicine reminds me of this platform — here is what we have, though it may not be exactly what you need (I have blogged about this some on my blog here http://evimedgroup.blogspot.com ).

    To Taylor's point, our research enterprise is indeed missing the mark. Though we strive for internal validity (hence double-blind randomized controlled trials), we know very little about how to apply this knowledge to real-world situations, and even less to real-world individual patients. The stakeholders in this research, mainly the FDA, CMS, AHRQ, are not the same as the stakeholders in the daily application of this research — the patient and the doctor. Hence the disconnect.

    I do believe that science is an important component of medicine, yet it is not the only component. Other ways of knowing have been virtually ignored by the establishment, and this is a disservice to both the patient and the provider communities. This may be a watershed moment, when there is enough recognition that something needs to change to actually effect some changes, though this has to be done carefully and in a deliberate way. Perhaps if there is enough interest in starting the conversation, we might have a critical mass to get moving, from the bottom up?

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