The team at Modus Therapeutics is focused on developing therapies that are designed for patients with the help of patients. To do this we are regularly in touch with patients throughout the sickle cell community, learning more about the disease and the current gaps in treatment. We love to hear from patients, so please reach out to us at anytime. We are here for you.
In 2017, Modus partnered with Micromattie Consulting Inc. to gain a deeper understanding of the perspectives and experiences of persons living with sickle cell disease in the United States. Almost 300 members of the sickle cell community, including Sickle Cell Warriors, responded to our survey. Patient input was critical to informing our program for an at-home injectable pain therapy for use use when feelings of a vaso-occlusive crisis begin. Our first study for our at-home therapy began in February in Florida.
“When I feel a pain episode coming, as a sickle cell disease patient, I’d rather treat the pain to the best of my ability at home without having to turn to opioids.” Cassandra Trimnell, Executive Director, Sickle Cell 101, Patient Advocate & Consultant
“I was in so much pain that I audibly exclaimed, “I wish everything was black, I wish I had a button to just make everything black forever so I could feel no pain.” Research from Raremark, Member of Raremark’s sickle cell patient community
“Hooked up to an IV, stuck in bed, 3 meals a day, nurses in & out & in & out. I have spent countless memorable days in the hospital, including my own birthday.” Research from Raremark, Member of Raremark’s sickle cell patient community
Patient input gathered by the FDA in the “Voice of the Patient, Sickle Cell Disease”, confirms the value of a therapy like sevuparin. During the meeting, participants highlighted that current pain medications are suboptimal due to the potential for abuse, cognitive side effects and varying degrees of effectiveness. When asked about the ideal treatment, patients highlighted an interest in treatments that they can self-administer and a treatment that can “stop a pain crisis in its tracks.” Sevuparin, for the at-home treatment of pain from vaso-occlusive crisis, directly addresses these issues.