THE PATIENT VOICE

Welcome to Issue 6!

Having a chronic illness can easily dominate your life. It affects your finances, your relationships, and how much energy you need just to get basic services out of your healthcare. I can’t count how many people I’ve spoken to (and I am one of these) who at some point threw their hands in the air when trying to navigate some arbitrary maze just to get the treatments or testing their doctor wanted them to get. There are so many barriers. But when you have a rare disease, multiply all those challenges by thousand.

Samantha, one of our patient contributors, has experienced this super-challenge. Whether its arguing with insurance, or the pharmacy, or the doctors at the hospital there seem to be nothing but obstacles between what she needs and what she gets, thus her quote, “Going to the hospital almost always means getting worse before they make me better”.

One such obstacle for other rare and chronic illnesses are independent agencies like ICER who, under no legal authority, insert themselves into the discussion of whether or not a given treatment is financially justifiable. In that process, people living with rare diseases are especially disadvantaged because metrics like the Quality Adjusted Life Year that is used to evaluate financial feasibility measures each of them as less than one healthy life. 

This is why Patients Rising will be at the MIT Samberg Conference Center in Cambridge Massachusetts on July 25th, to make sure the Institute for Clinical and Economic Review hear the Duchenne Muscular Dystrophy community and other rare and chronic disease families loud and clear when they ask who put ICER in charge of their healthcare and proclaim that they are #notworthless than 1 healthy patient. 

-- Terry

“My photographs meant so much to me during a time when my chronic migraines were at their worst. I was constantly missing class and the migraine-fog restricted my ability to study. During this time, I was having so many migraines that I was running out of my migraine medication (taken as needed) every other week, resulting in hours wasted arguing with my insurance company to cover more of the medication I needed to function daily. However, even through the pain, nausea and depression that so often came along with the migraines I still found myself with the urge to create. 

One of the pieces included is a self-portrait, in which I try to convey the pain and inner turmoil that comes with having chronic migraines and depression. Completing this piece was cathartic, allowing me to finally express my hidden pain. Each piece has a different meaning, but they all represent me as an artist. Photography provided an avenue to pull myself out of the fog, and into the creative light.”

-- Ally Ferrara