Six is Lydia’s age in years. Six is also a number of months she lived after being diagnosed with DIPG. FDA’s Project Facilitate should help kids who, like Lydia, are denied compassionate use drugs. more→
Welcome to the Kids v Cancer blog
Sharing our thoughts and opinions is a big part of what we do. Advocacy is in essence an invitation to a discussion with the goal to persuade. Our work is more than organizing events and reporting accomplishments. It is a process of thinking, a search for logic and proof, a desire to uncover innovative solutions. Working for kids who have cancer is an emotional journey, a rollercoaster of incredible pain and hope. It is asphyxiating when another family loses a child. It is revitalizing when a compassionate use request is approved, when a new drug shows promise, when a teenager wants to advocate in memory of her baby sister.
Changing policies is a bumpy road with many blind turns. Let’s go for a ride.
Nancy Goodman, the executive director and founder of Kids v Cancer, received the Distinguished Public Service award in recognition of her outstanding leadership in cancer policy and advocacy at the 2019 annual meeting of AACR. more→
The new law doesn’t change a fundamental reality about compassionate use: the biggest hurdle is persuading a drug company to agree to provide access. more→
There are some searches that Google cannot help with. You have a child who urgently needs an unapproved drug, it’s a matter more→
One of the most challenging moments in the treatment of a child with cancer is when there is a promising drug in more→
Should age matter when requests for compassionate use are considered? Are children less likely or more likely to be granted access to more→
At a recent meeting on compassionate use, one of the attendees asked questions that were met with a prolonged silence in a more→