Before I founded the MTS Sickle Cell Foundation, I was a mother trying to navigate sickle cell disease for my three daughters.

I am still that mother. I know what it means to plan life around transfusions, appointments, and hospital stays. I have watched my girls navigate serious complications while trying to go to school, pursue their goals, and enjoy their lives. So when I hear about research that could make treatment easier to receive, I think about the difference that could make for families like ours. An appointment can take much more than the time spent with a provider. There is the drive, the waiting, the time away from work or school, and everything that has to be rearranged to make care possible. A treatment option that safely reduces that burden could mean so much. CMS is considering changes to how certain fixed-dose combination medicines are treated under Medicare drug price negotiation. My ask is that the agency carefully consider what those changes could mean for research into treatment options that make care easier for patients and families. Affordability matters deeply to our community. So does continued progress. Administrator Oz and CMS, please listen to the families living this every day. We need affordable treatments and continued investment in options that could give our loved ones more time to live the lives they are working so hard to build. #SickleCell #PatientVoices #CaregiverVoices #HealthPolicy #MTSSickleCellFoundation