My son has a rare disease called Cryopyrin-Associated Periodic Fever Syndrome (CAPS). Symptoms of CAPS can be severe, including recurrent episodes of fever and inflammation of many systems (skin, joints, eyes, brain, etc.). But the most concerning part is that CAPS is very hard to diagnose, and if left untreated, it leads to deafness, brain damage, and organ failure.
I feel very fortunate that we have been able to diagnose my son and that he is receiving treatment. Right now, he takes multiple medications (including four biologics injections a day) to try to control his symptoms. However, many people with CAPS eventually require a more advanced treatment than this, and insurance companies can be reluctant to pay for it due to the high cost and limited research on CAPS.
Simply put, there needs to be more research around CAPS—for my son and for those who go undiagnosed. I have done my best to raise money and awareness for additional research into this disease so effective treatments can more easily become available, but I can’t do it alone. I urge the Minnesota delegation to support the pharmaceutical industry so that companies can continue putting resources towards finding a cure for CAPS and other rare diseases. I am concerned that price setting measures like HR 3 may severely limit research and future innovation which could impact my family and so many others like mine battling rare disease.
We’ve seen the miracles of research and development. Look no further than the COVID-19 vaccine. I hope that with our lawmakers’ support, we can have additional information on CAPS, more accessible treatments, and through pharmaceutical innovation, maybe even a cure one day. — Kara Wicklund, Ramsey