A Response To Kaiser Health News
I know that to the majority of readers I’m a misguided girl caught up in a pharma scheme, and that’s okay. After all, I was seventeen years old when I was interviewed for the piece that would come to be known as “Drugmakers Help Turn Patients With Rare Diseases Into D.C. Lobbyists.” I saw my face plastered beside that of my own best friend as I smiled and she plunged a needle into her thigh (a scene reminiscent of what I did twice daily just months prior.) If you read the article you probably pitied me and believed I was manipulated and caught up in something much bigger than I could have ever imagined. I don’t blame you, I would have thought the same thing.
Here’s the little known truth: I’m using pharma just as much as pharma is using me.
There came a time where I had to make the choice between living in an idealized reality or facing my real one. I wish that pharmaceutical companies would have the incentive to develop drugs for rare diseases without further benefits, yet 95% of rare diseases have no treatment. I wish that the medication that sent me into remission from my Autonomic Dysfunction was a drug specifically designed for that purpose and not an off-label last chance, but it was. I wish that I never had to attend the funerals of children less than twelve, but my nightstand is littered with awareness ribbons and memorial cards.
With that knowledge I play what I refer to as the Washington game. I use any avenue I can to get to my representatives office, not only to talk to them about the 21st Century Cures Initiative and OPEN ACT but also what parts of the Affordable Care Act are vital to my future, what awareness months I would like to see, or why my state needs to expand our medical marijuana pilot program. I wear pretty dresses and speak to the press about just how lovely everything is when all I want is to cry because another baby I know is on hospice. I work with pharmaceutical companies because attempting to create a mutually beneficial partnership is the only way I believe I will see treatments for diseases the average person struggles to pronounce in my lifetime.
I could choose to make what some would consider the righteous choice and advocate for patients without pharma influence, and trust me I’ve tried - but pharma is the very thing that we need to get medications and get in the door at our representative’s office. Until the system changes I will comply, I will play the Washington game, and I will work like hell to use what I have to my advantage. I’ll even be the villain or naive kid in your narrative if you want me to be, just know I do it so that my children will never bury friends because of Batten Disease, Spinal Muscular Atrophy, Epidermolysis Bullosa, or any one of the other monstrous diagnoses I’ve watched slowly kill people I love.
You don’t have to pity me for what I’ve done. I’ve known all along.