As much as I enjoy riding all over the country and hanging out at motorcycle rallies and trade shows, it only takes a minute to remind me of the reason I left the security of a steady job and decided to dedicate my foreseeable future to bring education, inspiration and hope to others living every day with the unpredictable symptoms and progression of Multiple Sclerosis.
It was a chance meeting at the American International Motorcycle Exposition (AIMExpo) in Las Vegas this past October that quickly reminded me of my true purpose for being there. I was a guest of Yamaha, showing off my new Star Venture touring motorcycle as well as handing out my brochures and Chasing the Cure wristbands. Inside the Mandalay Bay Convention Center I stood on my feet for twelve hours each of the four days of the event. The first two days were strictly for dealers and press, and the last two days were open for the general public. It is the largest motorcycle trade show in the country. It is exhausting, but provides great national exposure for my journey. It is also a great opportunity to meet potential corporate sponsors and supporters while trying to grow my social media followers.
Some time during the afternoon on Saturday, a middle-aged couple approached me after seeing the graphics on my bike showing I was Chasing the Cure for MS. It didn’t take them long to tell me their adult son had just been diagnosed with MS a week or two earlier. They were clearly shaken by the news, sad, scared and a bit overwhelmed with all of it. It has been 14 years since my diagnosis and because I have responded well to treatment, I sometimes forget how the emotional toll being diagnosed with a chronic and progressive disease collaterally strikes friends and family as well.
I started as I always do, inquiring about their son’s symptoms, where he was at regarding treatment decisions and stressing how important it was to find an MS specialist. After a while, they realized that I was actually a patient as well, bringing them a few tears but also a bit of relief. I gave them resources and websites to help navigate the vast information available as well as offered to call or speak to their son if they thought it would help. By the time they left my booth, the tears and fears had been wiped away and replaced with a round of hugs. I made them promise they would call me when they had more questions. They left with some better information and hope. (And a couple of Longhaulpaul’s Chasing the Cure wristbands)
Forty five minutes with a couple who must have had some interest in motorcycles (we never did actually talk about bikes) quickly reminded me the importance of my mission. It reassured me the financial struggles I face and the sacrifices I continue to make while continuing to share my story on the road are indeed worth it.
My journey is making a difference
In 2013, I agreed to be a patient in the first-ever live simulcasted roll out of a medication. A brand new oral medication to slow down MS progression.
Since then, and over the last five years, I have worked hard to become one of the top patient advocate speakers for multiple pharmaceutical companies, delivering inspirational talks to over 200 audiences across the country. I wrote articles for their websites, spoke at their national conventions, delivered inspirational talks to marketing teams, finance departments and became a poster boy for brochures, ads, and videos.
I mentored other patient speakers and provided feedback to improve patient experiences at educational events across the country. I was good at what I did, and knew I was helping people living with MS all over the country. The medication, by the way, just happened to become the #1 oral treatment for MS in the United States.
Speaking at educational events as a patient with experience on some of the therapy treatments available while also inspiring others to continue following their passions provided me with a source of income to continue doing what I felt was my purpose in life. As hard as it was for me, I followed all the strict FDA guidelines for the content of my talks and adhered to the legal and compliance policies that came with representing the drug companies at these events. One of the biggest drawbacks of being a patient speaker for me was not being able to tell the audience how they could follow my journey, my social media links or even my last name. I was not able to combine the two worlds, my very public presence on social media which I was trying to grow and being Paul P., Real Patient Living with MS. I was not allowed to publicly like, share, comment or invite my social media and motorcycle audiences to the pharmaceutical events. I was not allowed to share pictures or videos from anything I was doing for the pharmaceutical companies, even when the photos were of me and plastered across their websites.
Here I am with a stunt dog, doing a photo shoot which is actually the cover photo for the medication’s Facebook page
For liability reasons, my representing them at their events could not blend into my online social media posts in any shape or form; as anything I potentially might say or post on my personal pages could be held against them by the FDA. I followed the rules.
The only thing I required from day one, and reminded them of each year, was that I would go anywhere, accept every invite to speak as long as I was allowed to use my own vehicle, which was a motorcycle, to travel to each event. I wouldn’t need airfare, car service, airport parking or meals; I even agreed to pay all my own hotels, food and tolls while on the road, if they would just cover my mileage. They agreed. Being allowed to ride my motorcycle to each event instead of riding in planes and limos added tens of thousands of miles to my million mile journey each year.
I was the easiest speaker to book, and never refused the tough assignments like getting to Staten Island or Brooklyn for 5:00 pm on a Friday, or downtown Boston during the playoffs. Averaged out, it was no more expensive to have me travel anywhere in the country than it was to fly and provide transportation to the other patient speakers. By 2016, I had established a good reputation as an enjoyable and engaging presenter and I was getting invited to speak an average of 3 times a month. Considering some of the events were across the country and took a week or more of travel time; holding a steady day job was just not possible. I tried working a day job part time, but event that didn’t cut it. It wasn’t by accident that I was getting more and more invites, it was my dedication and hard work, getting better and better at delivering memorable and inspiring presentations. In October 2016, I left the real work force to speak full time.
Everything was rolling along well until someone in bookkeeping discovered they were reimbursing personal travel expenses at a much higher rate to a single patient. ME. Without realizing I was also the only patient speaker who had ZERO expenses paid out to third parties on my behalf for each event, they slammed the red flag buzzer. Because of fear of violating FDA Sunshine laws, they decided to play it safe by changing the travel reimbursement rules. They didn’t look further into it or even understand the reason I was using traveling by motorcycle as part of my story. The travel clause of the speaker contract was quickly changed for all 200 speakers, but effected only one, ME. A maximum reimbursement that wouldn’t even cover my costs to travel a few hundred miles from my home was implemented. No such dollar limit was placed on any other travel means or costs, basically discriminating against anyone who didn’t fly. This change was a huge blow to me and made it impossible for me to continue as a speaker. “Just fly like everyone else,” I was told “and we will pay any and all your expenses”.
By now you know, that was not an option for me.
I didn’t go without putting in a good argument, offering to accept a travel fee equal to the costs associated with flying or a reduced reimbursement rate for longer travel; but they would have none of it. I continued to accept offers to speak, spending thousands of dollars out of pocket to travel last year while I argued my case as high into management as I could, which probably didn’t make the situation any better.
The last correspondence I received, acknowledging they realized the travel change only affected me and that my arguments were valid, but that they were now also concerned about my safety traveling by motorcycle. (The company was no more liable for me on my bike as they would be if I died in an Uber 3 miles from my hotel in route to the venue.) Considering I had never had an incident or was ever even late while riding over 150,000 miles to patient events, this revelation brought the sad realization that it wasn’t just about the travel expenses anymore, someone really hated motorcycles. Sadly, my time was up.
Ride to Reach Rural America
So, after six years on the road, 350,000 miles and over $150,000 raised for charity, my journey took a detour once again. As of 2019, I no longer will be speaking at pharmaceutical sponsored events, but will continue to share my story at unbranded and unbiased patient programs presented by a non-profit organizations. I will continue to grow my motorcycle presentations as well, hoping to visit dealers across the country offering seminars and meet and great opportunities.
After spending quite bit of time and energy trying to find a MS charity that had the same goals as I did and was willing to help promote my efforts and fundraising events, I am excited to be partnering with MS Views and News Inc. Based out of Miami, MSVN has been providing free educational events across the country for many years. I will be partnering with President Stuart Schlossman and his organization both for my fundraising events and as a patient advocate speaker at a number of their events.
Together, we are delivering a series of presentations to remote areas of the country where MS patients are not getting the same level of help or resources the bigger communities receive. The Ride to Reach Rural America initiative utilizes me on my motorcycle to bring education, inspiration and hope along the back roads of America, one small town at a time.
They can’t take away my motorcycle this time, RIDE is part of the program’s name.
Much like the events I was already speaking at, I will be delivering a bit of inspiration, some insight into my disease and treatment history, and for the first time, be allowed to add humor and a slideshow to my talks. No longer will my talk be scrutinized by legal and compliance departments or the FDA as it had been in the past. Being able to tell my story, share my journey and inspire others freely will allow me to reach more people at each event. For the first time in 6 years, I no longer have to remain anonymous and can provide my audiences the means to follow me or contact me through social media.
That’s right folks, Paul P. (actual MS patient) is dead.
LONGHAULPAUL is alive, on the road and coming to a small town near you.
Like, share, follow or get the hell out of his way!
Please check out my new fundraisers for 2019. The MS 1000 is an IBA sanctioned Saddlesore ride and my next world crazy world record attempt will be streamed LIVE March 29th, Nonstop to Nowhere
