Nearly $250,000 will be divided up among patient advocacy organizations and research institutions.
Started in 2017, the STEP program funds innovative efforts that empower patients with unmet needs to chart courses to improved care. The focus this year is SCD. Recipients will promote patient self-advocacy, help SCD patients better navigate the medical system, and support those transitioning from pediatric to adult care.
“People with sickle cell disease continue to face significant gaps in care which can be detrimental to their physical health and overall well being,” Ameet Mallik, executive vice president and head of Novartis Oncology, U.S., said in a press release. “Through the STEP Program, we aim to help make a difference in these patients’ lives by supporting innovative programs developed by organizations in the best position to tackle these challenges.”
Applications were reviewed by a committee made up of a patient, an SCD practitioner, and experts in advocacy, multicultural health, and psychosocial support.
The organizations and programs include:
- All One Blood’s commercial campaign series, which will include patient narratives and conversations. The advocacy organization is aimed at empowering and giving a voice to sickle cell patients through discussion and education.
- The Children’s Research Institute and its INSERTT (Improving Sickle Transition Through Telemedicine) study, which will assess the affect of telemedicine on SCD outcomes as patients switch to adult care. The institute is the academic arm of Children’s National Health System, and conducts and promotes medical research and education programs that lead to improved understanding, prevention, treatment, and care of childhood disorders.
- Sickle Cell 101 and its FACTSS (Facilitating Communication Between Patients and Providers) program, which will offer patients an online toolkit complete with personalized communication strategies. The organization uses social media to educate those affected by SCD.
- The Sickle Cell Foundation of Georgia and its plan to host interactive workshops to prepare youngsters to transition to adult care. The 48-year-old foundation is one of the nation’s oldest SCD-focused institutions. Its mission is to reduce the incidence rate of sickle cell, monitor the number of existing cases, and help improve patients’ quality of life.
- The Georgia Health Policy Center at Georgia State University, which will develop educational videos to promote understanding among patients and caregivers about the benefits and possible risks of therapeutic blood transfusions. The center integrates research, policy and programs to advance health and well-being.
“The volume, breadth and quality of the proposals we received this year speaks to the deep need within this community to remove the hurdles people with sickle cell disease face every day,” said Charles Jonassaint, PhD, assistant professor of medicine, social work, and clinical and translational sciences at the University of Pittsburgh, and a member of the STEP external review committee. “It was inspiring to see the passion of so many organizations dedicated to improving the lives of those impacted by the disease.”
In the first year of the STEP program, funding was provided to three organizations involved with metastatic breast cancer. Last year, it called for proposals for SCD.