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Hi All,
I’ve promised myself that I would post new blogs more often that I’ve found time for in the past. It’s been another crazy year, for sure, but if I’m confident I can find 5 occasional minutes to blog now and then!
Just wanted to post a quick update while it was first and foremost on my mind. I spoke with Dr. Ray at JnJ this evening and wanted to note how impressed I continue to be with the team at Janssen Pharmaceuticals and, as we’ve always referred to them as, Johnson and Johnson. Or relationship started off, as you may remember, quite rocky. The Isaac Foundation, along with our partner organizations, had long lobbied the company to commit to research of a highly promising drug (Elmiron) that the company makes and markets. After repeated no answers, and constant put-offs, we put our advocacy efforts on behalf of our kids in high gear. After months of hard work and patience, we finally had the opportunity to present our case to some decision makers within the company. From that moment forward, things changed, as did our view on the company.
Once the potential of Elmiron was recognized by JnJ, the company acted quickly to repair any damage that was done with our organization but, more importantly, with the MPS community as a whole. They committed to further study of their product, brought some of the most incredible MPS researchers and physicians together for a collaborative planning and educational session, and took a keen interest in our children. They put a team together that dedicated themselves to learning about MPS and the struggles families dealing with this devastating disease face, something that I was incredibly impressed with, and continue to be proud of.
What impressed me most was that they didn’t take a serious look at this drug for financial reasons - JnJ stood to lose a lot of money during the entire endeavour. They chose to look into this product because the data was compelling, and the impact it could have on saving our children was undeniable. We often took aim at the JnJ Credo Values - values the company promoted and prided themselves on. Once Dr. Amrit Ray took over the Elmiron/MPS file, that credo was put into action and the company showed me why they put such stock in their credo values. In short - they undertook this project because it was going to positively impact the lives of our kids, and they felt it was the right thing to do.
Unfortunately, JnJ was prevented from further study of Elmiron due to legal issues relating to patents, along with Mt. Sinai’s deal with another drug company. However, I’ve been fortunate to continue working with Dr. Ray and have had the opportunity to touch base with him on a regular basis. He and his team continue to learn about MPS and our children, and I’m incredibly touched at how caring and compassionate he and his team have been.
I spoke with Dr. Ray this evening. And like every time we chat, I was struck by how empathetic he is as it relates to our kids. Johnson and Johnson is lucky to have him at the helm, and we at The Isaac Foundation are lucky that our relationship has evolved over time to find us at the place we are today.
Thanks, as always, for the support you provide us.
With Love,
A.