On Wednesday, February 20, Johnson & Johnson (or more specifically, Janssen Pharmaceuticals, who is a company of Johnson & Johnson) told Andrew McFadyen of The Isaac Foundation that they would not fund a clinical trial to explore the effects of a drug they manufacture, Elmiron, on children who live with MPS. You can read my last blog or Melissa Hogan’s blog for more information.
That afternoon Andy began a website to bring public awareness to J&J’s disregard for humanity: http://www.shameonjnj.com/. The website received over 2,000 hits in less than 12 hours. J&J has also been checking in on the website, spending less than 3 seconds per page on our kids’ stories, but instead focussing on the comments and feedback (yours is welcome, J&J is obviously paying attention!). By Friday, February 22, Andy had a response from Janssen/J&J, you can read it here. Andy’s response is here.
A press release will be issued next week throughout North America. Stay tuned! Rare diseases may have a lot of things working against them, but two things that MPS does have going for it is community and motivation. We are family and we will fight; from Vancouver to Toronto, Chicago to Tennessee, and North Carolina to California.
We are also putting together a document of frequently asked questions, to address questions we’ve received to date.
I cannot express in words my gratitude for your support over time, for our fundraisers, for our family, for MPS. This cause takes time away from everything else you do in life and I want you to know that we recognize that. Although J&J’s responses to date have been incredibly disappointing, my heart is full from all your love and support. Thank you.
Below are some further comments of support:
“When a company that pretends to care for the common good and clearly demonstrates, through their actions, that they only care about profit, they deserve to be boycott!”
“Dear people who care about kids: Johnson and Johnson holds the key to a potentially life-changing drug that could transform the life of one child I know. Please write to them, call them, and ask them to move this drug into a clinical trial!”
“This is where capitalism really fails. Finding ways to help those in need should be of utmost importance to all of us including pharma, regarless of profit.”