Today the Fly for MS team and I are going to get in my Cessna 340, heading east, and fly over 29,000 thousand miles in about sixty days. That is far enough to circumnavigate the globe, and fewer than 300 people have flown a plane of this size for such a distance. No one has ever flown so far for a humanitarian mission, as mine is: we are flying to promote awareness for multiple sclerosis.
The flight will be as challenging as it will be exhilarating. At over 140 hours in the air, it is over two years of typical flying time for a small plane compressed into two months. Our route will take us over glaciers and stunning fjords to land in rarely used regional airports in countries with little private aviation; that's where the people with MS are. It is logistically and practically complex to route such a trip through 30 countries and to make every mile count. It's also a feat of extreme endurance, for the pilots as well as the plane, to go so far so quickly.
We will fly to people with MS throughout Europe, the United States and into Asia. We will fly some for treatment where treatments are unavailable; others we will just fly to share the joy and sense of freedom you experience when soaring above the clouds.
Before I became a pilot, or went to Wall Street, I was an engineer trained in Bucharest. Apart from knowing how to make something work, you need to know how it is supposed to work, and what it is supposed to do. Since the engineer is not the end-user, it is important to talk to the people who are, the people who might use it and buy it. The people to whom it is really going to matter what it does and how well it works.
Later I came to the United States and attended the Wharton School at the University of Pennsylvania. I worked at McKinsey for a while, and I became a biotech investor at Invus. I used the same methodology I had as an engineer. When looking at drugs for multiple sclerosis, I interviewed over six hundred patients and doctors to understand their needs for new drug therapies. I came to understand they had other needs as well.
Multiple sclerosis is a debilitating disease. It has no known cause and no cure is on the horizon. MS most often strikes people between the ages of 20 to 50, and affects about 50,000 children annually. Symptoms may include numbness or a temporary loss of feeling or motor control of a hand or limb. That loss of control may further deteriorate at an unpredictable rate, leading to other symptoms such as paralysis, speech impairment, and blindness. Sixty percent will become disabled over time.
People with MS face a number of challenges. Apart from the physical limitations imposed by their disease, many have limited access to therapy and to necessary specialists. In some cases, this is because they are too expensive; in others, because they simply aren't there. Even in a developed country like Ireland, there are only half as many neurologists as needed to treat people with MS. In most countries, the numbers are worse: only 1% of the 50,000 people with MS in Poland have access to appropriate therapy. Other patients are challenged to keep their jobs and health insurance from employers who don't understand MS and believe they should push people with MS into early retirement, or fire them, because they don't understand how utilize them more for longer. Those downsized by their disability wind up relying on government services and assistance to manage in everyday life. These are the kinds of programs hit hard by budget cuts.
The invisibility of the disease and the hidden suffering of its patients are striking. Most people are not sure what multiple sclerosis is, and many patients do not tell their employers and friends that they have it. They struggle to hide their symptoms for years until their disability is obvious. One patient's friends believed he was an alcoholic, since he frequently lost his balance and was an unsteady walker. People with multiple sclerosis often hide in plain sight, and as much as patients need effective therapies, they need awareness of and compassion for their plight.
When I learned to fly a plane, I was struck by the contrast with the ultimate sense of freedom I enjoyed and the physical limitations of the MS patients I had met. I wanted to share this experience with them, and I felt I could link the two somehow. I thought I could do something I love while making a difference -- it's important to remember that volunteering can, and should, be a joy. I joined with others who shared my vision, and reached out the MS community with a bold plan.
The response has been overwhelming and the significance of Fly for MS transcends the symbolic experience of the patients we are able to fly. The need for increased awareness is one reason; another is simple kindness, deeply felt and appreciated by a community that feels marginalized and ignored. Fly for MS is collaborating with 30 patient advocacy groups, including the U.S. National MS Society and the Multiple Sclerosis International Federation. Through media coverage of the mission and events, many people will be educated about MS and how to help. "Invisible" patients may be seen and understood with compassion and dignity. MS advocacy groups are energized to engage with their governments and communities.
For me, the flight is an opportunity to show to the hundreds of people with MS and doctors I have interviewed and questioned that I am listening. I hope other people will listen, too.