No one should have to die suffering without adequate and meaningful medical care, but that’s exactly what is happening everyday in every town in this greatest country in the world that is supposed to have the best healthcare. The only reason every single cystic fibrosis patient doesn’t have to die in such a manner is because legislation was passed in every state over the course of fifty-two years ensuring that doesn’t happen. Patients with Crohns and lupus deserve the same courtesy. Children and young adults are dying from complications of these diseases never meeting the criteria for diagnosis because the medical industry refuses to change their protocol that is killing us combined with a culture of minimization and indifference. Patients suffer while doctors do nothing as irreparable damage is done. We need genetic testing, and we need the healthcare system to be forced to accept genetic diagnosis. We deserve access to cystic fibrosis centers and preventative care. Expensive drugs are not nearly as costly as a lifetime of office visits, tests, procedures and surgeries. They are literally waiting for inevitable damage to occur so they can treat it instead of preventing it. Even patients who managed to get a diagnostic label are choosing suicide over the treatment they are offered. People are dying, and no one cares. That needs to change because we deserve better treatment both literally and figuratively.

If you or someone you know have a personal story you'd wish to share with this petition when it is delivered to members of Congress and Governors of State, please send it to [email protected].