27 January, 2014 mcfadyena

Update – Jack Fowler – Shire is “Too busy to do a phone interview…”

EDIT – Shire’s PR Firm, Waggener Edstrom, has been visiting our website and the savejack.ca website. Sadly, I think Shire is more concerned with its public image and less concerned about the kids they are supposed to be helping. Be Brave Shire – the way to fix your image is to live up to your Credo, not through with some PR firm.

Hi Everyone,

Thanks for the hundreds of messages that we are receiving in support of Jack Fowler.  I’ll do my best to respond to everyone, but thought I would post a quick update here.  As of Monday morning, we still have not received a response from Shire CEO Flemming Orskov regarding our plea for them to objectively listen to the arguments we have to present in favour of Jack receiving access to the medication he needs.

In all of the advocacy efforts I’ve been involved with over the past few years, I’ve never experienced such a lack of compassion from any government body or pharmaceutical company I’ve dealt with.  Most often, we are able to find a member of the company or government organization to objectively listen to the case presented, present counter arguments, and work through the process to best meet the needs of all involved.  I am truly saddened and disappointed that no such person has stepped forward at Shire.

Shire prides itself on its relationship with the patients they try to help.  It’s in their credo.  It’s in the brochures, pamphlets, DVDs, and splashed all over the web.  In reality, we know that they have said that they “don’t deal with patients”  and they “don’t deal with families.”  We have asked time and time again to be heard and to have them lay out any counter arguments they have in a rational fashion.  Every time we make that ask, we are ignored.

The reason that Shire doesn’t want to respond is because we have a very strong case that supports Jack receiving treatment.  We have a strong case to save Jack’s life.  We have a doctor ready to provide the treatment he needs, a location and a review board ready to approve.  We have the necessary funding to ensure that all baseline testing is completed.  We have all the evidence from the FDA that supports our cause, and strong assurances from the FDA that anything that happens to Jack outside of the clinical trial setting will have NO bearing on the clinical trial whatsoever.  We have everything we need, except the cooperation from Shire.

We have had countless media inquires about Jack and the battle he is waging for his life.  So far, Shire has refused to provide a comment.  They are “too busy to do a personal phone interview”  for the media.  I can’t imagine how anyone can be “too busy” to comment on a decision they have made, especially if they are confident that decision was the correct one – a decision based on fact, reason, and something they could stand behind.

Jack Fowler’s life is worth more than silence, and his family deserves to be heard.  If Shire has GOOD reasons why they cannot provide this treatment, they should publicly address the points we would like to put forward.

I ask, once again, for Shire to listen.  I ask Shire to respond to our inquiries, respond to the family that is asking to be heard.  I am calling on Flemming Ornskov to take the time to remember what his ethical responsibility as a physician is.  In keeping with the Pillars of Medical Ethics, physicians are compelled to do good and to do no harm.  They are compelled to ensure that patients facing similar medical conditions have access to the same care.  They are compelled to support access to medical care for all people.

Dr. Ornskov, please step back from your unreasonable position and remember the medical principals that you are obligated to uphold.  Please remember the role you have carved out for yourself in the world of medicine.  Please help us #SaveJack.

Jack’s mom has just updated her blog.  Please drop over to read her latest entry HERE!  And if you haven’t done so already, please watch Jack’s dad describe his meeting with Shire below.