This song is for Trey, for Jamie, Melissa, Andy and Ellen, for MPS parents, and for all parents who would do anything for their kids.
[youtube]http://www.youtube.com/watch?v=OZpaDfrWE1w[/youtube]
Our battle with Johnson & Johnson is heating up. In one week, the ShameonJnJ website has received over 10,000 hits from around the world. Yesterday, on ‘Anti-Bullying Day’ in Canada, MPS friends and supporters sent hundreds of emails to the point person in charge of the Elmiron MPS file, Dr. Steven Silber, the VP & Global TA Head of Established Products at J&J. Today, on International Rare Disease Day, another pile was sent to the Chief Scientific Officer for North America, Dr. Norman Rosenthal, CEO Alex Gorsky, and Chairman of the Board, William Weldon.
I have been blown away by the support for this cause. It’s public, it’s against one of the biggest companies in the world, it’s a big deal and a lot of work, but people have, despite these challenges, continued to support us. Because you care. Just saying that brings tears to my eyes. For all of you who have posted on the ShameonJnJ website, who have posted on our Facebook pages, on Twitter, on this website, you are AMAZING. You make my heart swell to the point of tears. THANK YOU. I cannot say thank you enough. Thank you.
We don’t want to fight. Fighting sucks. But we will do it for our kids, and you supporting us keeps our hearts full, while we continue to put on our armour.
I have a few more links for you, posts that have come out since my last blog. First is a post from my dear friend Jamie, another mom’s perspective on this fight: How Far Would You Go?
Second is a FAQ sheet posted by Andrew McFadyen with the hopes of clarifying any confusion on the J&J/Elmiron/MPS issue, you can read it here.
Also, the US MPS Society has decided to post on the issue, here.
Below is the letter I sent to Dr. Silber, Dr. Rosenthal, Mr. Gorsky and Mr. Weldon:
Dear Dr. Silber, Dr. Rosenthal, Mr. Weldon and Mr. Gorsky,
My name is Deb Purcell. I am from Vancouver, BC, Canada, and I have a son, Trey, who lives with MPS II. He is the same age as Isaac, Andrew and Ellen McFadyen’s son, of the Isaac Foundation.
I have been aware of Dr. Calogera Simonaro’s research with Elmiron ever since Andy and Ellen started funding it, but was not enlisted to help with anything until Andy told me J&J was not eager to help fund human MPS clinical trials with Elmiron.
Dr. Silber, you have told Andy that you work with rare diseases and families with rare diseases, so have an idea of what our life is like. Let me paint you our picture:
Similar to Andy and Ellen, we had to fight the government, in our case the BC government, for the first ever treatment for MPS II, Elaprase. I imagine you are aware of this IV Enzyme Replacement Therapy. Our next fight was to get Trey into an intrathecal clinical trial at the University of North Carolina under Dr. Joseph Muenzer, to infuse the enzyme he is missing into his central nervous system. Only accepting 16 kids worldwide for phase I/II, this was no small task. Along the way, I have also had to fight doctors who know less about MPS II than I do, for tests, procedures, and appointments that are in Trey’s best interests. My point in telling you all this, is that I have learned to fight. Being the parent to a child who is dying, I am a mother with nothing to lose.
Also similar to Andy and Ellen, we have fundraised. Due to this work, I have developed relationships with TV, radio and print media in Vancouver from Global TV, Shaw and CTV to the Vancouver Sun & Province, CBC etc. We are also currently part of two documentaries, one out of Denver about MPS II, and one out of the University of British Columbia (UBC) that is funded by the Canadian Institutes of Health Research (CIHR), to bring awareness to Canadians about rare diseases and rare disease treatments in our country. I have let both teams know about the situation between J&J and MPS and I hope they will get in touch with you.
In addition, my husband is in the film industry, and as a result, we have gained the support of many actors, who have hundreds of fan sites and thousands of followers. I will provide you with the information so that if you want to confirm my statements through your own research you can (you can read articles, listen to radio interviews and watch video footage on the media page of Trey’s website: http://www.treypurcell.com/blog/media/), but actors who have either donated to our cause or attended our events and galas are: the main cast, as well as writers, creators, and producers of ABC/CTV’s Once Upon a Time (Edward Kitsis, Steve Pearlman, Lana Parrilla, Ginnifer Goodwin, Jennifer Morrison, Robert Carlyle, Josh Dallas, Jared Gilmore), Jensen Ackles and Jared Padalecki of Supernatural, and many actors from the shows Stargate SG-1, Stargate: Atlantis and Stargate: Universe, such as Amanda Tapping and David Hewlett. Many of these actors have spoken publicly about our cause and I know many would go to bat for us here. These are actors with hundreds of thousands of followers around the world who can spread the word far and wide.
If you would like to read more about my son Trey and our journey, you can do so here: www.treypurcell.com. My personal twitter handle is: @purcelldeb and the twitter handle for our fundraisers is: @onceuponacure.
Here is what I know and where I’m at:
1. J&J has the money to fund a clinical trial for Elmiron, a drug that they manufacture, in MPS
2. J&J’s decision not to fund this trial is unethical and immoral (http://www.treypurcell.com/blog/2013/02/22/johnson-johnson-indifferent-unethical-immoral/)
3. From research I’ve done, J&J has a squeaky clean image that people associate with babies and families and a company that takes care of babies and families
4. There is nothing more important than our kids’ lives. Because our kids are dying fast, MPS parents have learned to fight harder than anyone else in the world. We are warriors and survivors. You have just taken on the toughest crowd in the world.
5. The MPS community has media and celebrity connections around the world, nothing to lose, and we are facing a company that tells the public how moral and ethical it is, when in this situation nothing could not be farther from the truth.
This effort is only going to grow. We have not yet reached out to media or our celebrity friends. These are our next steps and we are not giving up. Please do the right thing. It will save us all time and effort. Please feel free to contact me if you have any questions.
Sincerely,
Deb Purcell
