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,






Shingles belong on the roof, not my body!


When  I woke Saturday morning in the king-sized bed at the Marriott, I just assumed the ache in my left side was from sitting or sleeping in the wrong position and it would go away.  It had been a busy few days at the Annual Consortium for MS Centers meeting and I recognized my body was feeling the strain of the long days. I hopped the plane and made it home, with no more pain from my side but later that evening, it again began to ache and I commented that it must be a muscle strain.

Sunday I woke still sore, but not too bad and certainly there was nothing that gave me a clue it might be something else.  It wasn’t until well after midnight and just before dawn I woke in such extreme pain I had my husband take me to the ER.

The kind ER staff took my vitals, gave me a hefty injection of morphine for the pain, wheeled me down the hall for a quick CT to look for kidney stones or other obstructions, and then came to the decision I had the shingles. There were three tiny red rash patches on my left side – that was all – and the ER doc was confident of her diagnosis.  I thanked them all for their prompt attention and kindness, their painkillers, and my prescriptions, and went home.  A few hours later the small rash had spread to larger areas and I had to agree with the doctor… I have the shingles.  AKA Herpes Zoster, a close cousin to the Chicken Pox virus varicella-zoster. The advertising theme of one manufacturers  at the conference had read ‘In MS, it starts with a flicker’ but I don’t think this is what they meant.

Exhibit promo

On the drive home I sent a text to my neurologist inquiring about the connection between shingles and my MS drug, natalizumab (Tysabri). The prompt reply said even though my immune system may be somewhat compromised by this multiple sclerosis drug, it was more likely the hectic pace I had been keeping at the conference I was attending and the after effects of major foot surgery was what made me susceptible to this viral infection. The irony is I was at a conference about MS and how to better treat people affected by the disease, and at no time did I hear shingles mentioned; but during my time there I must have been in contact with someone with an active case of one of the Zosters – either chicken pox or herpes.

I’ve considered the shingles vaccine in the  past because I have reached that recommended age, but had not pursued it because live vaccines are not ordinarily recommended for people with multiple sclerosis. Had I known what this outbreak would be like and the pain involved,  I would have gambled on the MS having a relapse and taken the shot as soon as I was eligible.  The nurse tells me once my shingles have cleared I should consider getting the vaccine and I replied there was nothing to think over – I will take that shot if it means avoiding future episodes of the shingles.


In the meantime, all I can do is wait this out. I was put on an anti-viral medication thanks to the intuitive ER doctor, and that may have cut the duration of this outbreak, but I still can’t stand to have things touch my body.  Consequently, I have spent the week in a loose-fitting nightgown and tried to move as little as necessary. I’ve cancelled all plans, including another trip next week and am happy to sit still and do nothing. I understand it will be too hot to go out this weekend anyway so I might try to make the most of this and sleep and write my way through the days ahead.

If you are eligible for the shingles vaccine and have not yet had it, do yourself the favor and get it!  The temporary discomfort to your body for the injection and your wallet for the cost can’t compare to the pain and inconvenience of an active case of the shingles.






World MS Day 2016 and OrangeMoji’s


World MS Day is May 25 and the Multiple Sclerosis Foundation (MSF) with support from Novartis is challenging us to bring out our best orange for the day – as in a real orange that we have turned into an OrangeMoji to bring awareness to MS.

ripe orange with leaves on white background

I have to go on record that  even though I love the color orange I still wish our official awareness color was one that could be rhymed.  Songwriters and poets have yet to come up with anything that rhymes with orange so instead we have to settle for the thought that a picture is worth a thousand words.   Keep thinking about it and let me know if you come up with a word or two.IMG_1886Interpreters say the dream of an orange is a symbol of health and the fulfillment of wishes.  Now they don’t say what kind of health that may be but perhaps someday as we all wish for, there will be a cure for MS and we will all have good health.  If this is the case, we might want to dream more about oranges but I think dreams about unicorns and rainbows would be even better since they signify hope and happy endings.


MSF invites everyone to create their own OrangeMoji that will convey the ‘I can do this!’ message of the song with the same name done by David Osmond. Please click on the link and have a listen – you might be surprised at the power of his message.  David also has MS and is a celebrity spokesperson for the Novartis company. People who submit an OrangeMoji will be eligible to win a chance to attend a listening party with David. So it’s simple – take an orange and some markers or other materials and make your own OrangeMoji, take a picture of it, and submit it online.  Your OrangeMoji might even appear in the next music video.


The message could show you’re not going to take what MS is dishing out ….IMG_1878

Or how your everyday attitude of laughing in the face of MS gets you through….IMG_1881

As David Osmond’s lyrics for I Can Do This remind us –

I’ve rehearsed a thousand times

I played it all out in my mind

And now it’s time to go, time to give the world the show

That I – I’ve been dreaming all my life


The day has come – I’m gonna give myself a chance

The fear is gone – This time I’m gettin’ off the fence

I’m moving on – The wait is over

Yeah, it’s my life, This is my life!


Whether you make an OrangeMoji or do something else, please be sure to join me and the 2.2+ million people in the world who have multiple sclerosis,  as we observe World MS Day 2016.  Whatever your OrangeMoji might look like – remember when you peel it open we are all the same and hoping for increased awareness to finding an end to MS for us and future generations.

be well,



Learning More about Lemtrada


The PR firm representing Genzyme Sanofi and the launch of their newest MS drug, contacted bloggers with the offer to speak with one of their neurologists about Lemtrada, the trade name for alemtuzamab.   Never one to turn down the opportunity to speak one on one with these specialists, I was happy to accept their offer and was connected with Dr. Ann Bass, from the Neurology Center of San Antonio.   Fortunately they allotted 30 minutes to talk by phone and we used every bit of that and could have used more.  There is a lot to talk about – this new MS treatment option has the MS community buzzing with excitement about the potential. Following are the questions and answers we exchanged and our discussion:

Q: Lemtrada has been approved for RRMS but will it also be studied for SPMS and PPMS? 

Dr. Bass immediately pointed out something I had not caught –Lemtrada is approved for relapsing forms of MS and that is not limited to just Relapsing Remitting MS, and it could include Secondary progressive MS. She said there are no plans for a study for its use in primary progressive MS (PPMS), and cited an older study that showed the drug, alemtuzumab showed no benefit in PPMS.   I asked if there might be doctors who would try to use it off label for PPMS and she said that would be highly unlikely because of all the serious warnings that accompany this drug, and the extreme exposure to liability a doctor would face using it in an unapproved manner.


Q: What criteria might a doctor use to decide if this would be a suitable choice for a person to try?

Dr. Bass  said the most obvious will be if a person fails two other types of drugs and is still relapsing.  This is the use the FDA approved, but she did say if a person had aggressive MS and it was deemed a medical necessity, the neurologist could strongly advocate for a person to be treated with Lemtrada as a first round of MS drugs.   She also said Lemtrada may be a good choice for someone who tests positive for the JC Virus and wants to discontinue Tysabri, because as of now they found no link between PML and Lemtrada.


Q: Lemtrada is intended to be given in multiple doses – five doses , five days apart and then nothing for a year.  At the beginning of the second year, the person is given three additional doses.  If necessary, a person might need to take additional rounds of alemtuzumab  for a third or even fourth year.  Can you share those numbers as to how many people needed additional rounds of treatment?


Dr. Bass said in the studies, 80% of the people were fine with treatment for just 2 yrs.  20% needed an additional round for the third year and 10 % needed treatment for the fourth year.    The need for additional treatments is based on finding two indications that additional treatment is needed, and could include clinical evidence, EDSS changes, or new lesions and enhancing lesions on MRI exam.


Q: Since we all respond to MS treatment in different ways how quickly would a person on Lemtrada see an improvement or would they have to wait the entire year to see cumulative improvement?

Dr.  Bass said the response is noted fairly fast, within the first few months for most people , with the full effect being felt in 6-12 months. It can take some time for the immune system to be rebooted after it is suppressed by the alemtuzumab.


Q: Many of the MS  therapies require a washout period (time without a drug so it can leave your system) before trying a different drug.  Is there a washout period if a person stops taking Lemtrada?

It is no surprise that Dr. Bass said there is a neurologist online community that regularly talks and this is a hotly debated question, because no one really knows that answer.  Their big debate is while the  lymphocytes were repopulating would there be a benefit to be on something else? The answer is not known at the present time.


Q: We then talked about side effects – there is a 30% rate of thyroid disorders reported among the people in the Lemtrada trial . What percentage of those are thyroid cancers?

She said that hyperthyroidism and hypothyroidism was the majority of that number, but 5% were cases of thyroid cancer.   Of the people with the hyper/hypothyroidism, 80% were reversible with treatment after it was detected.  20% of those cases had surgery to remove the thyroid and will need a lifetime of treatment to compensate for that loss.


Q: If a person has a negative reaction to Lemtrada, can the drug be removed from the system like Tysabri?

She says the drug itself has a relatively short life in the body and it is gone quickly but it is the effect of alemtuzumab that can’t be reversed  – it is long lasting, and suppresses B cells for 6 months and T cells for 12 months.  Those effects cannot be reversed. Because of the suppressed immune system people can be more at risk for infections, but it is a catch-22 because if you treat the infections, you are counteracting the lemtrada effects  and low counts repopulate sooner and bring back the disease activity.


Q: Alemtuzamab was used for many years as Campath, a  chemotherapy drug for leukemia.  Will Lemtrada be administered the same way?

Dr. Bass says Lemtrada will be given by IV, the same as Campath, and the times will be similar.  A treatment of Lemtrada will involve the infusion to take place over 4-6 hours and that an additional 2 hours of observation, making it at least an eight hour day.  Because of the side effects of this drug which is a potent chemotherapy agent,  they recommend pretreating the person with other pharmaceutical to help counteract the side effects.

Q: Can the cost of Lemtrada, versus what it was as Campath be justified?

Dr. Bass said she had not seen the final cost for Lemtrada but feels it needs to be a personal choice and not dictated by price.  She also discussed the long term costs to a person with MS and how those might be decreased if a person with Lemtrada remains healthy and free from MS progression.


Since our interview I have thought of a few more questions, but I appreciated the openness Dr. Bass displayed discussing the pros and cons of Lemtrada.  She noted that her clinic was a trial site for Lemtrada and she had several years experience with the drug,  and she is a compensated  spokesperson for Genzyme Sanofi.


I hope this gives you some additional insight into Lemtrada and what needs to be considered if you think this might be the next drug choice for you.

Be well,