War of My Life – A Long Awaited Update

Hi Everyone,

Thanks for the patience.  I know there have been many of you wondering what’s been going on with our latest project, #ProjectOneMillion, and if things are progressing.

Since we launched our project, a lot of developments have happened, and things are moving forward (although not at the pace with which we want or expect).  So…I’ve decided to take a minute to give you a rundown about where we’ve been, where we are, and where we’re going!

Initial respose to our #ProjectOneMillion video (http://www.youtube.com/watch?v=iPhisB8_-wM) was incredible.  We quickly raced up the charts on YouTube and had 5000 views.  This was before the push actually began for us to get it trending!  As you know, the drug company that we need to sign on board with us, Johnson and Johnson, the maker of the drug that or children desperately need, was initially hesitant to help us complete the clinical trial for our kids.  After the video launched, I reached out to J and J and began discussions to see how we could obtain their support moving forward.

Well, as things tend to do in the pharmaceutical world, things progressed – but progressed slowly.  J and J agreed to have a teleconference with our Researcher and their medical advisory team.  Our lead physician was also scheduled to be on board.  However, due to numerous scheduling conflicts (and other unmentionable delays!), the teleconference got bumped from September, to early October, to late October, to today.

In the meantime, two other major pharmaceutical companies began a push to develop their own version of the drug that our kids need.  On the surface, this seems like cause for excitement.  However, it’s the farthest thing from exciting.  These companies want to take the current form of the drug and make it into a different form, something that is not in the best interest of our kids.  In addition, because they are creating a “new” treatment, it would have to be approved by the FDA (the drug from J and J is already approved).  As well, this “new” drug would have to go through the development stage, the early clinical trial stage, the late clinical trial stages, etc.  This is a very long process, and it’s time that our kids don’t have.  Finally, because this “new” drug would be considered a treatment for a rare disease, the drug company would gain market exclusivity on the drug for 7-10 years.  This means they can also set whatever price point they want – and this price point would be sure to be ridiculously high (current prices for rare disease treatments rank as some of the most expensive drugs in the world).  Again, this is not in the best interest of our children and will be a barrier to a great many being able to even attain it.  In the end, if one of these two drug companies are successful in creating their own drug, it could be upwards of 6 years before we see it in our children, and it will be incredibly expensive (I gauge these companies could end up making a billion dollars on the backs of our very ill children).

This leads us to today and our teleconference with J and J.  While I cannot share any details, I do want to impress on all of you that are interested, our very real determination to ensure that the drug currently being made and marketed by J and J ends up in our children in very short order, and our very real battle to prevent these other two companies from marketing their own drug.

Why is J and J the best option?  First, it’s already available and already FDA approved for use (and approved for use here in Canada as well).  This availability is paramount to ensure our kids can start their treatment early.  Second – it’s in a form that will allow our children to easly access it’s benefits (i.e – not a needle each and every day).  Third, it’s affordable.  So affordable that drug plans will not even question the cost to them on a yearly basis.

To be clear, we have the team in place to begin a trial immediately.  We have the data (which is incredible), we have the lead physician to run the trial, we have the location and are working on the parameters.  All we need is the ability to cover the cost – 1 million dollars.  My hope is that J and J can come through with help, and you’ve all done so very well in helping us so far.  But we have to get going soon, or one of those 2 drug companies will get their own form of the drug production under way, and our kids will continue to suffer needlessly as they wait for another million dollar treatment to become available to them.

So…there you have it.  I promise, I haven’t been sitting idle since the launch of our Project.  I’ve put off media interviews and my media release, but they are hounding me to chat with them because this is such a big story.  We won’t put them off much longer.  And when I chat with them, I hope I have good news to pass along to them 😉

My hope is that J and J will understand what incredibly good things they can be doing for our childern suffering from rare diseases throughout the world.  My hope is that they will understand the need for their product to go into immediate trial in our kids, and that they will work to block the other two companies trying to make hundreds of millions of dollars off of our kids.

And my hope is that you’ll continue to help us along the way.  There’s work yet to be done, and our kids will need you.

Till I can update again, thanks for your continued support.

With Love,

The Isaac Foundation