A Magazine Capturing the Story of Health- For People, Environment, Economy & Habitat

Building Future Value for in the Treatment of Children with Brain Tumors

Post 2 of this series – Capacity Building for Health

I always enjoy looking at pictures of healthy young children when they are smiling and displaying a very vibrant high energy. Pictures like this picture of Alex Barnes, age 5. Pictures like this convey the story of a health, high energy and happy child.  But a year earlier, Alex was diagnosed with a brain tumor.

By February 2009, Alex achieved a very unique status as “the first child in Britain cured of a brain tumor.”. He was cured by a revolutionary treatment called Proton Radiation Therapy.  To obtain this treatment, Alex and his family had to travel to a specialty center that provides this treatment in Florida from Britain, where the Barnes family live.  There is was no treatment center in Britain at that time.

To set up a facility to carry out Proton Radiation Therapy is excessively expensive.  The estimated cost of some equipment cost alone is $350M.

Alex’s treatment took six weeks to complete.  Proton radiation when aimed at the tumor, unlike non-ionizing radiation, stays within the boundary of the mass the radiation is aimed at and remains contained there.  Hence this reduces the side effects and harm that accompanies radiation therapy and chemotherapy treatments.

Side effects of radiation treatment from the shot-gun aim approach that does not contain the radiation within the targeted tumor is more harmful to children than adults.   When this treatment is given to a child it is during the period of time of brain development where the radiation can result in harm and injury to the child’s brain functioning for life.

Compare this picture of Alex a year before he was treated. Nothing stopped him from having a health year of growth for a 5 year old.

The total cost of Alex treatment in the US over six weeks  cost  $163K.  The treatment was done in Florida on an outpatient basis so the famiily could stay in a hospitable setting and enjoy themselves in the Florida area as if they were on a vacation.  Alex had a complete recovery and a opportunity for a full and healthy life was returned to him.

With the memory of being lost and dealing with the horror that your child might die, when the doctor announces to the family and child that the child is now cured, the usual response from children and their parents is, “We don’t want anyone else to go through what we went through.”

If the family, like the Barnes family discover a treatment that is not easily available is when a child and his family often turn into evangelical health advocates.  In Part 1 to this series, I told the story of how Betsy Mullen, Breast Cancer Survivor and Scott Johnson, MS Patient turned their passion for the discovery of a cure for their disease for the benefit of others into remarkable fund-raising activities for research.

The Barnes family became advocates to have a facility built in England. As of April 2009, there were 29 facilities available in the US,Canada, China, England, France, Germany, Italy, Japan, Korea, Russia, South Africa, Sweden, Switzerland, including England.

There is another benefit to this treatment for a child,  who is cured. The emphasis on followup care can be more holistic and foccused on prevention through education and coaching of the child/family to teach the child to select health eating habits, exercise and the right amount of sleep.

The harm caused by the old form of non-ionizing radiation usually results in treatment of chronic symptoms and illness that follow cancer treatment. Many children post-cancer treatment encounter an increased sensitivity to chemicals and environmental toxins and a high risk of autoimmune disorder  which in adult years can translate and grow into complications of a variety of diseases cause by inflammation like multiple sclerosis, arthritis or early onset of adult dementia. Who knows?

So why shouldn’t Alex mother return from the US to the UK and want to immediately create a Proton Radiation Therapy Center in the UK and organize with others all that this entail?

As of April 2010 there were 29 proton therapy centers in Canada, China, England, France, Germany, Italy, Japan, Korea, Russia, South Africa, Sweden, Switzerland, and USA.  The typical model in the US is to locate the treatment in a hospital medical center on an outpatient basis.  Australia’s first installation is being built as a stand alone operation.

While the technology has been available for the past 30 years, it was only 8 years ago that the first treatment center in the United States was set up at the Mass General Hospital in Boston. Mass General has a history of partnering with medical device and equipment companies to launch new technologies into practice.  The treatment and its availability is not well known.

Is this a model that can build future value for sustainable health?   When I talk to health professionals, they immediately think about how a hospital has to be involved and professional associations of peers who are trained in oncology.  But 2 nights ago, I was talking to global advisor, Christina Carvahlo Pinto.

I sent Christina an update email on the magazine and construction of a the portal  for the Sustainable Market Leader sector, prior to our call. As part of that email, I also shared with Christina my intention to build a new global model of health based on this treatment technology that will bring sustainable value to people and be a model of how to build a sustainable health eco-economy.

Christina read my notes with excitement. Christina immediately went to Google to find out what was happening in Brazil regarding this treatment.  When we talked, we had the most exceptional conversation, unlike any conversation I have had with any health professional ever.  Check in for Part 3 on Monday, March 7, 2011 — when you can hear the result of a conversation between two women with practical imagination and intent to act.


Lavinia Weissman



1 Comment»

  Sarah P. wrote @

Incredible post, Lavinia. You covered a very delicate and tragic topic in such an impactful way bringing to light new technologies while still covering holistic health approaches. Thank you for sharing the Barnes’ remarkable story, and let’s hope there will be many more “cured” stories to tell in the near future.

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