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

 

 

 

 

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