Camilo's MS Surgery Fund
Donation protected
Camilo is going to Seatle, WA, from the beginning of March to the end of April to undergo HSCT (Hematopoietic Stem Cell Transplantation) treatment for M.S. This treatment will cost approximately $250,000 USD.
This is my cousin, Camilo. He’s 36 years old. He’s married to his high school sweetheart Stephanie and they have an adorable toddler Paul. They live in a nice quiet tree-lined neighbourhood in Markham, Ontario.
Camilo used to enjoy taking his Labrador dogs for walks around the neighbourhood and socializing with all the other dog owners and neighbours. Camilo is very hard working. He enjoyed being active by playing all kinds of sports with his friends and family and loved working on home improvement projects.
If this story stopped there, you’d think Camilo has a picture-perfect life. But what you might not realize at first glance is that my cousin is fighting for his life. And until recently, he had every reason to believe that it was a losing battle. You see, for the past thirteen years, Camilo has been living with Multiple Sclerosis (MS). MS is a debilitating autoimmune disease where your immune system mistakes healthy cells for sick ones and essentially attacks the nervous system. It’s a bit of a spectrum, so while one person’s MS symptoms may be mild and invisible to the naked eye (i.e. fatigue or numbness), another person can experience the disease at it’s nastiest (i.e. absolute disability and complete dependence on health care workers and loved ones to help with even their most basic needs). There is no cure for MS, only medications whose aim is to suppress the immune system and make the disease (and life) just a little more tolerable. But my cousin has stopped responding to these altogether.
A few years ago, he had to stop working a job he loved. He was having a hard time getting around, he was utterly exhausted, and his “MS brain” (brain fog) and creeping disability prevented him from doing his job properly. In the past two years, his condition has deteriorated even further, to the point where he can barely walk 75 feet and is almost wheelchair bound. He suffers from constant leg spasms, memory loss, chronic pain in his arms and legs...I could go on. But none of this compares to the devastation brought on by not being able to play with his son. Camilo can’t teach Paul how to throw a ball, he can’t dance with him, or roll around on the ground when Paul is being silly. He can’t draw with him or take him to the park.
But now there’s some hope. For the past twenty some odd years, doctors have been treating some autoimmune diseases like MS with a therapy traditionally used on cancer patients, Hematological Stem Cell Transplant (HSCT). In short, an HSCT entails harvesting a patient's own stem cells, using powerful chemotherapy to wipe out their corrupted immune system, and then reintroducing the previously collected stem cells in order to give the immune system a total reboot. It’s a risky procedure because, initially, it renders patients extremely weak, highly vulnerable to illness and infections. But it’s also extremely effective. The majority of MS patients who undergo HSCT experience a halt in their progression, so they don’t get any worse! Most see major energy and cognitive improvements. And a good portion of them will be lucky enough to have a reversal of their MS-related disabilities. This means that one day in the not so distant future, Camilo might be able to take Paul to the park!
Today, I’m appealing to you to help me help my cousin. He’s a good man and he deserves a good fulfilling life. Having exhausted all of his options, an HSCT is his last shot at that life.
****************
FAQ
What is the success rate for an HSCT?
Because there are different types of MS, it’s difficult to answer this question. There are several factors that affect how well patients respond to HSCT: the type of MS they have, how long ago they were diagnosed, and their disability score (EDSS) are the most salient considerations. This graph shows how effective an HSCT can be in an “average” case. For perspective, on the probability axis, think of “low” as 1% and “high” as 99%.
Camilo has secondary progressive MS (SPMS) and his EDSS is currently 6, which makes his case especially time-sensitive.
If this procedure is so effective, why isn’t it being done in more places?
HSCT has traditionally been performed on cancer patients, whose conditions are life-threatening. The recovery period from HSCT is extremely critical and complications from infections during this time can lead to mortality (0.5-1%). Because MS is not necessarily a fatal disease, there is a reluctance to perform such a “risky” procedure.
Secondly, it is oncologists and the cancer community that are most familiar with the science behind HSCT. Regular neurologists, who deal with autoimmune diseases, are generally unfamiliar with the procedure and do not really understand how it works. Unfortunately, this gives rise to the opinion that this treatment is experimental or fringe. That being said, there is a lot more research and advocacy being done in this field and, slowly, resistance towards such a “harsh” form of therapy is starting to wane.
Finally, drug companies stand to lose A LOT of money from the recognition of HSCT as a valid treatment for MS. According to the MS Society of Canada, “the base cost of disease-modifying therapies for MS varies widely and typically falls in the range of $20,000 to $40,000 per year.” This means that for the amount of money it costs to treat MS for two years, a patient could get an HSCT once and be off MS drugs for the rest of their life!
It’s worth noting that it is possible to have HSCT done in Canada. Dr. Freedman is a leading researcher in the use of HSCT for MS at Ottawa Hospital. His findings have shed a positive light on HSCT and have shown how much promise this treatment holds. Unfortunately, he is extremely selective about how many people and who he agrees to see and will only work with patients whose neurologists are on board. This would naturally be my cousin’s first choice, but his requests to see Dr. Freedman have gone unanswered.
Where can I find out more about HSCT?
This site is a great overview of everything HSCT. This was our starting point when we were first trying to find our bearings:
http://www.hsctstopsms.com/what-is-hsct/
George Goss is a beacon of hope for MSers looking to get HSCT. Having undergone the process in 2009 and a scientist himself, he’s now one of the most knowledgeable voices in this realm. He’s super active on online MS forums, and without his expertise, we’d be pretty lost; for example, the graph above was created by George Gross and can be found on his site/blog:
http://themscure.blogspot.com
This is my cousin, Camilo. He’s 36 years old. He’s married to his high school sweetheart Stephanie and they have an adorable toddler Paul. They live in a nice quiet tree-lined neighbourhood in Markham, Ontario.
Camilo used to enjoy taking his Labrador dogs for walks around the neighbourhood and socializing with all the other dog owners and neighbours. Camilo is very hard working. He enjoyed being active by playing all kinds of sports with his friends and family and loved working on home improvement projects.
If this story stopped there, you’d think Camilo has a picture-perfect life. But what you might not realize at first glance is that my cousin is fighting for his life. And until recently, he had every reason to believe that it was a losing battle. You see, for the past thirteen years, Camilo has been living with Multiple Sclerosis (MS). MS is a debilitating autoimmune disease where your immune system mistakes healthy cells for sick ones and essentially attacks the nervous system. It’s a bit of a spectrum, so while one person’s MS symptoms may be mild and invisible to the naked eye (i.e. fatigue or numbness), another person can experience the disease at it’s nastiest (i.e. absolute disability and complete dependence on health care workers and loved ones to help with even their most basic needs). There is no cure for MS, only medications whose aim is to suppress the immune system and make the disease (and life) just a little more tolerable. But my cousin has stopped responding to these altogether.
A few years ago, he had to stop working a job he loved. He was having a hard time getting around, he was utterly exhausted, and his “MS brain” (brain fog) and creeping disability prevented him from doing his job properly. In the past two years, his condition has deteriorated even further, to the point where he can barely walk 75 feet and is almost wheelchair bound. He suffers from constant leg spasms, memory loss, chronic pain in his arms and legs...I could go on. But none of this compares to the devastation brought on by not being able to play with his son. Camilo can’t teach Paul how to throw a ball, he can’t dance with him, or roll around on the ground when Paul is being silly. He can’t draw with him or take him to the park.
But now there’s some hope. For the past twenty some odd years, doctors have been treating some autoimmune diseases like MS with a therapy traditionally used on cancer patients, Hematological Stem Cell Transplant (HSCT). In short, an HSCT entails harvesting a patient's own stem cells, using powerful chemotherapy to wipe out their corrupted immune system, and then reintroducing the previously collected stem cells in order to give the immune system a total reboot. It’s a risky procedure because, initially, it renders patients extremely weak, highly vulnerable to illness and infections. But it’s also extremely effective. The majority of MS patients who undergo HSCT experience a halt in their progression, so they don’t get any worse! Most see major energy and cognitive improvements. And a good portion of them will be lucky enough to have a reversal of their MS-related disabilities. This means that one day in the not so distant future, Camilo might be able to take Paul to the park!
Today, I’m appealing to you to help me help my cousin. He’s a good man and he deserves a good fulfilling life. Having exhausted all of his options, an HSCT is his last shot at that life.
****************
FAQ
What is the success rate for an HSCT?
Because there are different types of MS, it’s difficult to answer this question. There are several factors that affect how well patients respond to HSCT: the type of MS they have, how long ago they were diagnosed, and their disability score (EDSS) are the most salient considerations. This graph shows how effective an HSCT can be in an “average” case. For perspective, on the probability axis, think of “low” as 1% and “high” as 99%.
Camilo has secondary progressive MS (SPMS) and his EDSS is currently 6, which makes his case especially time-sensitive.
If this procedure is so effective, why isn’t it being done in more places?
HSCT has traditionally been performed on cancer patients, whose conditions are life-threatening. The recovery period from HSCT is extremely critical and complications from infections during this time can lead to mortality (0.5-1%). Because MS is not necessarily a fatal disease, there is a reluctance to perform such a “risky” procedure.
Secondly, it is oncologists and the cancer community that are most familiar with the science behind HSCT. Regular neurologists, who deal with autoimmune diseases, are generally unfamiliar with the procedure and do not really understand how it works. Unfortunately, this gives rise to the opinion that this treatment is experimental or fringe. That being said, there is a lot more research and advocacy being done in this field and, slowly, resistance towards such a “harsh” form of therapy is starting to wane.
Finally, drug companies stand to lose A LOT of money from the recognition of HSCT as a valid treatment for MS. According to the MS Society of Canada, “the base cost of disease-modifying therapies for MS varies widely and typically falls in the range of $20,000 to $40,000 per year.” This means that for the amount of money it costs to treat MS for two years, a patient could get an HSCT once and be off MS drugs for the rest of their life!
It’s worth noting that it is possible to have HSCT done in Canada. Dr. Freedman is a leading researcher in the use of HSCT for MS at Ottawa Hospital. His findings have shed a positive light on HSCT and have shown how much promise this treatment holds. Unfortunately, he is extremely selective about how many people and who he agrees to see and will only work with patients whose neurologists are on board. This would naturally be my cousin’s first choice, but his requests to see Dr. Freedman have gone unanswered.
Where can I find out more about HSCT?
This site is a great overview of everything HSCT. This was our starting point when we were first trying to find our bearings:
http://www.hsctstopsms.com/what-is-hsct/
George Goss is a beacon of hope for MSers looking to get HSCT. Having undergone the process in 2009 and a scientist himself, he’s now one of the most knowledgeable voices in this realm. He’s super active on online MS forums, and without his expertise, we’d be pretty lost; for example, the graph above was created by George Gross and can be found on his site/blog:
http://themscure.blogspot.com
Organizer and beneficiary
Claudia Fabiano
Organizer
Bolton, ON
Sara Fabiano
Beneficiary
