Valuing Advocacy and MS Patient ‘Experts’


We all know the value of advocacy – it is the work that brings about change.  In the world of multiple sclerosis there are advocates everywhere, connecting the community of people affected with this disease with the  leaders who shape policy,  run non-profit organizations dedicated to improving quality of life, improving delivery medical care, and those who develop medical products.  It’s not unusual to be asked as an advocate to share my thoughts on an issue and I am more than happy to do so; I’ve even been known to do this without having been asked. Part of the role of an advocate is to identify issues and speak up for change where needed. This scenario pretty much describes every chronic disease community –advocates  are the go to people when others want to better understand the needs.

MS Advocates are also often viewed as patient experts and  contacted by the pharmaceutical industry for input on product design, especially in reviewing the marketing material for the multiple sclerosis drugs they own the rights to.  Successful bloggers and community leaders make particularly good marketing experts, being in the position where we are actively engaged with others who also are affected by MS, and we might be able to provide user insight not available in other ways.

A fellow blogger recently emailed several of us who have done projects with various MS drug companies in the past, wondering why several of  these companies, that make billions of dollars selling their drugs to us, are not willing to pay consultant fees for our ideas and more importantly, our time.  It’s a great question and one I would like to pose publicly.

The usual scenario for a project with one of the drug companies will be after the initial contact, we are provided with background material to read so we can think in advance about the topic and product.  Then we travel, sometimes long distances and always the day before the larger gathering, to meet in person at an always nice hotel, with very good food and comfortable beds.   I will agree that no money is spared in the travel accomodations. We spend an entire day, starting early and concluding in the late afternoon, listening to their presentations and providing feedback.  Then we either travel home that evening or head back the next day.  This is not a vacation and rarely is there time available to see any sights or enjoy the local environment. I always pack my swimsuit with the illusion that I will actually use the hotel’s pool, but that has yet to happen.  We arrive, meet, and then go home pretty much exhausted and spend another few days recovering. An in-person meeting easily consumes three full days, which is a huge commitment of time.

We do get the chance to spend time in person with like-minded advocates, and that is how I have finally been able to meet and spend time with people who I have known via their advocacy work for a much longer period of time. This is one big perk for saying yes to attending one of these meetings, but it might also be the only perk.

Why would we do this without any other type of compensation, such as a consultant fee or honorarium?  It sure isn’t for the frequent flyer miles.  And they aren’t giving us a year’s supply of their drugs for free.  Doing work pro bono for non-profit organizations is not part of this discussion – we’re all more than happy to support their work in any way possible.  Again, I have to note that I want to advance the needs of the MS community and I give consistently and often excessively of my time and talents for free to non-profit organizations; the donation of my time is worth way  more to them than if I were to open my wallet and give my small amount of money. All of my fellow advocates do the same, if not more.

What I’m particularly interested in understanding better is why when I am attending  some of these meetings, every person in the room is being paid either as an employee of the host organization or a member of the firm that found us and organized the meeting EXCEPT for the MS advocates?

Focus groups that are convened for online or telephone discussions are routinely offered compensation either as a small honorarium which is usually in the form of an Amazon gift card in a token amount; it is a nice gesture to show that our knowledge and time have value and is appreciated.

The looming question is about the differences among the various companies regarding these in-person meetings, with some who do offer compensation for our time while others insist it is against the law to give us any monetary compensation. In my thinking, the companies who do not consider  our worth and fail to compensate us are minimizing the value of the patient advocate and continue to perpetuate a system that takes advantage of our trust and good will. 

Compensation from the pharmaceutical companies who ask for our time and knowledge should be a standard part of this process and not a capriciously applied interpretation of rules and regulations. Of course this is solely my thoughts and I would welcome an open discussion with other advocates and with pharmaceutical representatives.  Please share your thoughts here or in our Facebook group Multiple Sclerosis Bloggers and Writers;  perhaps we can  then come to an understanding of expectations.


Be well,






Cost Effectiveness in MS Treatments


I’ve thought a lot about my treatment costs in the past few years and even have raised the question at OhioHealth, where I am treated with Tysabri, made by Biogen.  When I first went to this new location in January 2015 the cost was around $14,000 per month. This new medical provider (I followed my neurologist there when he decided to go to a different medical practice) constructed a new building and the infusion clinic was moved there. Initially I was shocked, but then angered to see the cost of my treatment, which was costly enough at $14K per month in their old building  had jumped to $22,585 per infusion in the new one, meaning my treatment cost would be billed at over $250,000 for the year.

When I checked my medical records for this story, I find my medical provider is now charging $24,908 per treatment, which is more than a 10% increase from January 2015 to April 2016.  Part of this is an increase in the drug’s cost and the remainder is their infusion clinic overhead.


When I question this, the explanation given is fairly predictable and had to do with negotiated payments and how my insurance was not going to pay that much and it would be a significantly reduced amount that was eventually paid.   For the increased bill of $24,908 the clinic provider is ‘only’ paid $12,578.    $160,000 per year is the real cost for my treatments based on today’s pricing, which is still a staggering amount to consider.


I continue to have my own mental struggle as to whether this amount of money is worth it in the big picture, considering my age and other factors.  Is it fair for my treatment costs to affect the health care dollar costs like this and take a sizeable chunk out of the available monies? How much does my treatment affect the escalating costs of health insurance? MS is a chronic disease that as of now has no known cure and I could conceivably continue on this treatment for the remainder of my life, amassing treatment costs in the millions of dollars.


Fortunately for me the entire cost of treatment is covered by my private health care insurance along with the patient assistance program for Tysabri costs.  I have paid nothing out of pocket all these years but I imagine these types of bills are part of what is driving up the cost of health insurance, for which I do pay a lot and so does everyone else.


Just when I think I am over being angry or frustrated by my MS treatment cost there is often another reminder of this escalating bill, usually in the form of a notice from my insurance telling me how much they had been billed and  actually paid.  Today’s reminder came in a different way – through the writings of Dr. Gavin Giavanonni, and Bart’s MS Blog, written by MS doctors and researchers  with   the departments of Neuroimmunology, Blizard Institute, Barts and The London School of Medicine and Dentistry, in the United Kingdom.


In this particular article they talk about NICE, the National Institute for Health and Care Excellence in the UK. One of the functions of NICE is to set pricing for healthcare treatment, including drug costs.  NICE decides on what they consider a fair price to pay for a drug and then looks at other options for treating the patient and then decides which would be most cost effective for their government health care system. The blog authors are also concerned about affordability and accessibility of drugs and how the policies of NICE affect treatment and posted this observation from a recent conference

“Another ground-shifting poster was the ORATORIO study results (ocrelizumab in PPMS). This study is the first study to show a DMT slowing the rate of disability progression in PPMS. This has to be one of the most significant things to happen in the field of MS in the last 10 years. Despite this I am concerned that NICE may not view ocrelizumab as a treatment for PPMS very favourably. NICE always assesses cost-effectiveness using an incremental cost model. For PPMS the cost-effectiveness of ocrelizumab will be compared to what is out there already, i.e. best supportive care.”


Their writing had me thinking again about my own treatment cost and now I also wonder if I could put a price on what it might cost to provide  me with supportive care compared to the money being spent on my drugs.  For now I would not need much in the way of help and all of the money could be spent on someone else.  But that picture could change very quickly if my MS progresses because I was not on treatment and I found myself dependent on health care services for my activities of daily living.  Would that amount of money take care of me if I were in a nursing facility? In 2013 the average daily cost of nursing home care was $248/day or about $90,000.  Just think of the money that would be saved if somewhere someone decided the cost effectiveness of my Tysabri showed that health care money would be better spent by putting me in a nursing home?


Reading this question in the Bart’s MS Blog makes me concerned for all of us because the cost effectiveness model might be what’s needed to control our drug costs here in the US.  In some ways our insurance companies are already doing a form of this by often denying treatment or authorizing only certain drugs for reimbursement but not all of them.


The topic of cost effectiveness is one of the core points listed in the North American Registry for Care and Research in Multiple Sclerosis (NARCRMS) project, a major initiative for the US and parts of Canada looking to link patient clinical data together.

“Health Care Economics Core

Will identify information to be collected in the database regarding disability, utilization of health care resources, and employment to help better understand whether the use of expensive therapies has been worthwhile from an economic standpoint, what are the savings from fewer hospitalizations, less disability and longer employment spans, and decreased utility of other health care resources”

Unlike the system in the UK which helps with the other costs of living such as housing, transportation  and medical care for people who are  in need due to the financial demands of living with a chronic illness, we don’t have that broad ranging assistance here in the US.  My health insurance would not pay any of these living costs – but they will pay for my drugs.


Being financially responsible leaves me little choice –  I will continue on these treatments despite the escalating costs and my lingering questions  and do my best to avoid future care needs that I would have to pay from our own resources.  In the meantime I just hope the next bill I open doesn’t cause me to require treatment from choking on the price.


be well,



Zinbryta – newest MS drug in the pharmacy


Add another disease modifying therapy (DMT) to the possible treatments for MS – following is the official FDA announcement of the approval of Zinbryta (daclizumab) by Biogen…  I’m sure there will be more to write about this latest from news at the upcoming Annual Meeting for the Consortium of MS Centers.  In the meantime, here is the FDA release –


May 27, 2016


The U.S. Food and Drug Administration today approved Zinbryta (daclizumab) for the treatment of adults with relapsing forms of multiple sclerosis (MS). Zinbryta is a long-acting injection that is self- administered by the patient monthly.

“Zinbryta provides an additional choice to patients who may require a new option for treatment,” said Billy Dunn, M.D., director of the Division of Neurology Products in the FDA’s Center for Drug Evaluation and Research.

MS is a chronic, inflammatory, autoimmune disease of the central nervous system that disrupts communication between the brain and other parts of the body. It is among the most common causes of neurological disability in young adults and occurs more frequently in women than men. For most people with MS, episodes of worsening function (relapses) are initially followed by recovery periods (remissions). Over time, recovery may be incomplete, leading to progressive decline in function and increased disability. Most people experience their first symptoms of MS between the ages of 20 and 40.

The effectiveness of Zinbryta was shown in two clinical trials. One trial compared Zinbryta and Avonex in 1,841 participants who were studied for 144 weeks. Patients on Zinbryta had fewer clinical relapses than patients taking Avonex. The second trial compared Zinbryta with placebo and included 412 participants who were treated for 52 weeks. In that study, those receiving Zinbryta had fewer relapses compared to those receiving placebo.

Zinbryta should generally be used only in patients who have had an inadequate response to two or more MS drugs because Zinbryta has serious safety risks, including liver injury and immune conditions. Because of the risks, Zinbryta has a boxed warning and is available only through a restricted distribution program under a Risk Evaluation and Mitigation Strategy.

The boxed warning tells prescribers that the drug can cause severe liver injury, including life-threatening and fatal events. Health care professionals should perform blood tests to monitor the patient’s liver function prior to starting Zinbryta, monthly before each dose, and for up to six months after the last dose.

The boxed warning also highlights other important risks of Zinbryta treatment including immune conditions, such as inflammation of the colon (non-infectious colitis), skin reactions, and enlargement of lymph nodes (lymphadenopathy).

Additional highlighted warnings include hypersensitivity reactions (anaphylaxis or angioedema), increased risk of infections, and symptoms of depression and/or suicidal ideation.

The most common adverse reactions reported by patients receiving Zinbryta in the clinical trial that compared it to Avonex include cold symptoms (nasopharyngitis), upper respiratory tract infection, rash, influenza, dermatitis, throat (oropharyngeal) pain, eczema, and enlargement of lymph nodes. The most common adverse reactions reported by patients receiving Zinbryta when compared to placebo are depression, rash, and increased alanine aminotransferase.

Zinbryta is manufactured by Biogen, Inc. of Cambridge, Massachusetts.

The FDA, an agency within the U.S. Department of Health and Human Services, protects the public health by assuring the safety, effectiveness, and security of human and veterinary drugs, vaccines and other biological products for human use, and medical devices. The agency also is responsible for the safety and security of our nation’s food supply, cosmetics, dietary supplements, products that give off electronic radiation, and for regulating tobacco products.


Biogen’s Blue Pill Message Misses the Mark


Dear Biogen,

Upfront I have to ask – What on earth are you thinking with  your recent drug campaign?  I’m talking about Biogen’s multiple sclerosis drug Tecfidera commercial that is now running on national television.  The first time I caught it, I missed the opening and only saw the ‘consult your doctor’ finish- little did I know I missed the parts that would drive me  and many others crazy. I have now seen it several times but if you are not sure which ad campaign I’m talking about please  take a moment and watch it at .  After watching it, my comments which I posted at that  site  and here will make sense.

Multiple sclerosis treatment shouldn’t be shown as another ‘tiny blue pill’ ad like Viagra, but that is certainly the message that screams at me from this one.  You show everyone  that if we take this blue pill once a day we can do anything.  I am the first one to be encouraging,  but your ad takes it beyond that. Even people with ‘normal’ health will not hike, swim and go to the fair in one day and still look so good; someone with MS would be out of the day before they hit noon.

It’s the closing of the ad with the shot of the couple on the ferris wheel looking longingly at each other that puts this over the top:  the unknown person holding the blue pill (ok, it’s a capsule but you get the point) in front of them, then the voice over warning of not getting pregnant is a show stopper.  Damn, that could be humorous playing Tecfidera as a Viagra wannabee, but sorry, it is definitely a mood killer for the sex the person with MS  might be contemplating when your voiceover artist has to remind people they might die from this drug because of the rare but often fatal PML.  Your ad agency couldn’t get the timing right on this one no matter how hard they try.


An ad for an MS drug might slide by under the radar, and not make so many of us angry  and disappointed with Biogen  if it weren’t for:

1) It misrepresents MS and perpetuates all the myths we fight regularly but especially  the one that others often think we can just take something like this little blue pill and get over and  above our MS. Thanks for that help, Biogen. You just undermined the struggles of people with MS who are challenged regularly with the misperception and accusation of ‘but you look so good.’

2) A boat load of money was spent to produce this commerical as well as  purchase the television time. How  many people do you really think are going to change therapies because of a tv ad? This was a tremendous waste of money that could have been put into services we could benefit from or donated to a non-profit that provides direct help.

3.)  Your stockholders deserve better use of  profits than this low return on the dollars spent. If you spend this much money on creating an ad, and buying prime commercial time during the network news but then only a few people are convinced to change, what did that cost per person?  I know we listen more to our doctors than to a 60 second television commercial when it comes to selecting our treatment.

4) There’s nothing sexy about MS. Or am I missing out on a side benefit of living with multiple sclerosis?  If a little blue capsule would really make this all better, sign me up now and I’ll ride that ferris wheel around and around.
Tecfidera might be a fine drug but this isn’t the way to deliver  your message. Biogen’s team used to do a great job of understanding us but as of late you seem to have lost sight of the true north.

Please take this ad down, now. Stop running it in the morning, noon and at night on national airwaves. It is doing more harm than your creative marketing team imagined.