A look back at 2017 before jumping into 2018

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Hello 2018!

So much multiple sclerosis research, learning and advocacy took place for me in 2017 and very little of it was captured here in my personal blog, so I thought it would be a good time to do a brief recap.  Not much changed in our personal lives- my husband is still working; our children are still productive adults; the grandchildren continue to grow into amazing and compassionate people; a new grand-dog was added to the pack; and I still have MS.

Family Christmas 2017

My MS Care & Treatment

On the MS front, I changed therapies and jumped from the monthly infusions of natalizumab (Tysabri)  to the every six months regimen of ocrelizumab (Ocrevus).  Do I notice a difference?  Other than not spending as much time with my favorite MS infusion nurses, not yet. I’m no worse but certainly I’m not better.  The verdict is still out on this change.

Professional Conferences

2017 was a stellar year for conference opportunities as both a participant and an observer.  I was able to hear from some of the leading minds in MS research as an audience member and as a member of the press at ACTRIMS, and CMSC.  (American Committee for Treatment Research in MS and Consortium for MS Centers).  Sitting on patient advisory panels sponsored by MS pharmaceutical companies also happened this year and I learned more about the work of EMD Serono and iQuity. I also attended the annual Health Literacy Conference in Baltimore, which focused on how we communicate health information, and I did a plenary presentation at the UT San Antonio Health Disparities Conference and chaired a panel for the Drug Information Association annual meeting in Chicago.

iConquerMS Research

My own research interests continue with the growth of the iConquerMS patient network. We have approximately 4,400 people with a personal interest in MS enrolled and sharing their own health data.  I still pinch myself in disbelief that I get to work with the amazing people at Accelerated Cure Project for MS. We have made application to develop a learning health system focused on MS, and look forward to further developing this concept with experts from across the country. In September over 40 dedicated MS advocates gathered in MS to map out the future of iConquerMS.

iConquerMS 2017 Leadership Summit (photo courtesy of ACP)

Healthcare Advocacy

There were also great opportunities to rejuvenate and refuel my passion for advocacy by meeting with other amazing health care advocates at PCORI’s annual meeting (where I shook Alan Alda’s hand, and was moved and inspired by Freddie White-Johnson and her work with the Fannie Lou Hamer Cancer Foundation), HealthEVoices 2017 sponsored by J&J/Janssen, and Connexions2017 hosted by HealthUnion.  These 100’s of people aren’t just focused on MS, but a wide variety of health and social justice conditions, and face many of the same challenges such as access to care, affordable medicines and searching for cures. I have made friends with so many wonderful, compassionate and dedicated advocates who work hard every day to improve the lives of everyone.

I attended the Ohio NMSS Chapter annual MS Advocacy day in Columbus visiting state lawmakers, and I also continue to advocate using Twitter (please follow me  – @lkay54) for MS education and political change.  #TheResistance needs us all to make sure the most medically and economically needy are not ignored, and speaking up regularly is one way I can contribute.

What’s next?

For only a brief moment can I stop and reflect on having done so much in 2017, because there can be no rest until we find a cure for MS. Though I must admit each event I attend requires many days of recuperation time.There’s already a lot on my calendar, and 2018 should bring even more opportunities to be a voice for the MS community. I hope you will find your own voice and join me – we’re really in this together.

Wishing you well,

Laura

Valuing Advocacy and MS Patient ‘Experts’

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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,

Laura