I consider myself a fairly simple man with some common sense. Having a life long auto immune disease like Multiple Sclerosis certainly provides me plenty of opportunities to witness dumb and dangerous decisions from our healthcare system. The United States probably has the greatest doctors, medications and treatments in the world. However, rules and regulations too often get directly in the way of what is proper and appropriate, and so much time and money is wasted fighting company policies and corporate profit margins to get the treatments we need.
My Million Mile Journey for a Cure started a decade ago. After attending a dozen or so patient educational events, I saw an opportunity to give back to the Multiple Sclerosis community. As a patient advocate, I could hopefully inspire others to not let their diagnosis stop them from doing the activities in life they enjoyed. I began speaking and sharing my story at pharmaceutical sponsored events in the New England area.
Eventually I went on to become one of the top patient speakers for the largest disease modifying drug manufacturer in the country. Getting my message out to thousands of patients in rural communities as well as spending time with newly diagnosed patients was the highlight of every free chicken dinner I was invited to speak at. The FDA regulates the drug industry with an iron fist and I was careful to always follow the rules while telling my story.
Over the first five years, I spoke at over 250 venues, traveling by motorcycle from New Hampshire to every single event regardless if it was in Florida, California or even Alaska! My goal was a million miles and the further away from home I had to travel, the better! I quit my day job. I was making a difference, helping others and getting to ride a motorcycle for a living. I discovered by finding something I love to do and making it more important than my disease, I was slowing it’s progression! I’m not saying the disease modifying medications were not helping, but I am saying having a positive outlook and purpose in my life absolutely contributed to my health.
I know I certainly wasn’t the first to discover the healing power of positive energy, but it was the first time I actually believed in it, because it worked for me.
check this out
Unfortunately, after about five years my positive energy treatment was abruptly halted. My medication which consisted of traveling and speaking to others who shared the same illness ran dry and I was denied refills. I was forced to either stop traveling by motorcycle or stop speaking for the pharmaceutical company.
The legal department felt my method of transportation was somehow a liability for them and were worried how it would look if a patient was injured on the way to one of their events. I argued that riding through NYC in an Uber was just as, if not more dangerous than riding my motorcycle. I had never missed an event, had never been late to an event and my expenses were less costly than flying and picking me up from my hotel in a limo. Over my lifetime of 25 years and 600,000 motorcycle miles at the time, I had never had a single incident or accident.
As a highly regulated industry, every word of the story I shared publicly at events had to be approved by the compliance and legal departments at the drug company. The entire story I was sharing with other patients was about how I had rediscovering the freedom and excitement of traveling long distances on two wheels and my million mile quest to help others. My love of riding was part of my story, the story the drug company approved and expected me to continue to share!
Even more important, my love of riding long distances was a big part of treating my disease. The pharmaceutical company’s change in travel policy hit hard and sent me and my disease back pretty hard. Their decision was based on someone’s fear of motorcycles and not the facts. The decision was a detriment to my health as I struggled financially, mentally and physically for a year or two before finding other ways to continue my journey and continue to make a difference in the lives of others.
I was lucky enough to attend and speak at a patient event provided by MS Views and News in recently. Dr. Ann Cabot was a neurologist specializing in MS and we had presented together at dozens of programs years ago. Her presentation was informative and entertaining as always. I realized it had been a while since I attended an event like this because I was amazed at the advances in medications and treatments for slowing the disease progression. When I was diagnosed in 2005, there were three options and all were injectables. Today newly diagnosed patients have about 25 different disease modifying therapies to choose from!
The pharmaceutical companies sure have been busy creating new and more powerful drugs that can slow the progression to a snail’s crawl or even slower. Many folks diagnosed today may never see their disease progress any further if they find the right treatment that works for them. These new medical advancements and treatments sounded great, but………….
After the presentation, the questions from the live and online audiences were all about how to get their health insurance to cover these new, and better class of medications. It is sad and sickening to hear the amount of time, anger and frustration patients spend to get approval for a medication that they need to stop a disease that when progresses, causes disability.
Pencil pushers with no knowledge of the patient’s medical history or the qualifications of the prescribing neurologist look at a chart with drug prices and deny the patient the medication they need. “You have to try the old and cheaper drugs first,” is the common answer from a phone operator with a fancy calculator and zero medical education.
How is it possible we live in a country that has treatments available that work better than the previous options to slow the progression of an incurable and often disabling disease and yet a phone operator or accountant at a health insurance company can go against the doctor’s orders and decide it’s not necessary?
Spending months fighting denial after denial, writing letters or trial and error with inferior, cheaper drugs before getting appropriate treatment from our health insurance companies causes stress, anxiety and can increase the chance of disease progression in any illness.
I may be a simple man, but it is crystal clear to me that the complexity of rules, regulations and profit margins are getting in the way of patients benefiting from great advancements in medications and treatment options and our medical system is really, really broken.
check this out
Inappropriate Medical Advances
I consider myself a fairly simple man with some common sense. Having a life long auto immune disease like Multiple Sclerosis certainly provides me plenty of opportunities to witness dumb and dangerous decisions from our healthcare system. The United States probably has the greatest doctors, medications and treatments in the world. However, rules and regulations too often get directly in the way of what is proper and appropriate, and so much time and money is wasted fighting company policies and corporate profit margins to get the treatments we need.
My Million Mile Journey for a Cure started a decade ago. After attending a dozen or so patient educational events, I saw an opportunity to give back to the Multiple Sclerosis community. As a patient advocate, I could hopefully inspire others to not let their diagnosis stop them from doing the activities in life they enjoyed. I began speaking and sharing my story at pharmaceutical sponsored events in the New England area.
Eventually I went on to become one of the top patient speakers for the largest disease modifying drug manufacturer in the country. Getting my message out to thousands of patients in rural communities as well as spending time with newly diagnosed patients was the highlight of every free chicken dinner I was invited to speak at. The FDA regulates the drug industry with an iron fist and I was careful to always follow the rules while telling my story.
Over the first five years, I spoke at over 250 venues, traveling by motorcycle from New Hampshire to every single event regardless if it was in Florida, California or even Alaska! My goal was a million miles and the further away from home I had to travel, the better! I quit my day job. I was making a difference, helping others and getting to ride a motorcycle for a living. I discovered by finding something I love to do and making it more important than my disease, I was slowing it’s progression! I’m not saying the disease modifying medications were not helping, but I am saying having a positive outlook and purpose in my life absolutely contributed to my health.
I know I certainly wasn’t the first to discover the healing power of positive energy, but it was the first time I actually believed in it, because it worked for me.
Unfortunately, after about five years my positive energy treatment was abruptly halted. My medication which consisted of traveling and speaking to others who shared the same illness ran dry and I was denied refills. I was forced to either stop traveling by motorcycle or stop speaking for the pharmaceutical company.
The legal department felt my method of transportation was somehow a liability for them and were worried how it would look if a patient was injured on the way to one of their events. I argued that riding through NYC in an Uber was just as, if not more dangerous than riding my motorcycle. I had never missed an event, had never been late to an event and my expenses were less costly than flying and picking me up from my hotel in a limo. Over my lifetime of 25 years and 600,000 motorcycle miles at the time, I had never had a single incident or accident.
As a highly regulated industry, every word of the story I shared publicly at events had to be approved by the compliance and legal departments at the drug company. The entire story I was sharing with other patients was about how I had rediscovering the freedom and excitement of traveling long distances on two wheels and my million mile quest to help others. My love of riding was part of my story, the story the drug company approved and expected me to continue to share!
Even more important, my love of riding long distances was a big part of treating my disease. The pharmaceutical company’s change in travel policy hit hard and sent me and my disease back pretty hard. Their decision was based on someone’s fear of motorcycles and not the facts. The decision was a detriment to my health as I struggled financially, mentally and physically for a year or two before finding other ways to continue my journey and continue to make a difference in the lives of others.
I was lucky enough to attend and speak at a patient event provided by MS Views and News in recently. Dr. Ann Cabot was a neurologist specializing in MS and we had presented together at dozens of programs years ago. Her presentation was informative and entertaining as always. I realized it had been a while since I attended an event like this because I was amazed at the advances in medications and treatments for slowing the disease progression. When I was diagnosed in 2005, there were three options and all were injectables. Today newly diagnosed patients have about 25 different disease modifying therapies to choose from!
The pharmaceutical companies sure have been busy creating new and more powerful drugs that can slow the progression to a snail’s crawl or even slower. Many folks diagnosed today may never see their disease progress any further if they find the right treatment that works for them. These new medical advancements and treatments sounded great, but………….
check this out
After the presentation, the questions from the live and online audiences were all about how to get their health insurance to cover these new, and better class of medications. It is sad and sickening to hear the amount of time, anger and frustration patients spend to get approval for a medication that they need to stop a disease that when progresses, causes disability.
Pencil pushers with no knowledge of the patient’s medical history or the qualifications of the prescribing neurologist look at a chart with drug prices and deny the patient the medication they need. “You have to try the old and cheaper drugs first,” is the common answer from a phone operator with a fancy calculator and zero medical education.
How is it possible we live in a country that has treatments available that work better than the previous options to slow the progression of an incurable and often disabling disease and yet a phone operator or accountant at a health insurance company can go against the doctor’s orders and decide it’s not necessary?
Spending months fighting denial after denial, writing letters or trial and error with inferior, cheaper drugs before getting appropriate treatment from our health insurance companies causes stress, anxiety and can increase the chance of disease progression in any illness.
I may be a simple man, but it is crystal clear to me that the complexity of rules, regulations and profit margins are getting in the way of patients benefiting from great advancements in medications and treatment options and our medical system is really, really broken.
