I spend my time tracking and graphing symptoms, medications and treatments, researching new doctors, connecting with new patient communities that might have insights I haven’t thought of, finding articles that may be relevant to Zach’s care or a possible diagnosis. Each of those clues is a stone on the beach and I can’t leave any of them unturned. Most of them will yield no answers, but I can’t risk missing one. The more time I waste doing any of those things, the less time I have for finding answers. I don’t have time to waste.
But at every turn, I run into walls. The Paywalls, to be exact. Those effing paywalls. For us paywalls aren’t just frustrating, they can be a block to a better therapy. A block to whether or not Zach can get out of the house, whether or not he experiences less pain, whether or not he receives better care. They are a personal affront to me. They are a time-waster as I work to find a way to get through them.
Now I recognize that I am enormously privileged because I have gathered an amazing community around me that I can quietly ask to grant me access. And they always generously help me. But I hate to go begging. And I recognize that one in 12 people will have a rare disease in their lifetime – a huge number of people. Most people won’t have easy access to friends with the ability to send them paywalled articles. Why should I have access while others don’t? Why should I access better treatment through current research while others in the rare disease community are shut out? Open Access helps to even the playing field and gives all of us more ability to partner with our health care providers for better care in the search for better treatments.
Some of my community were recently at a Child’s Brain Health conference that was put on in partnership with the research, clinician, and Parent community. I couldn’t be there, but followed intently on Twitter. @jackhourigan tweeted from @raeofsunshine79’s talk: “A worried mother does better research than the FBI."