The STEP Program™: Supporting Solutions from Patient Advocacy Organizations
Patient advocacy organizations are a key source of information, empowerment and support for patients throughout their health care experience, helping them and their families navigate the care they need.
Novartis developed the STEP (Solutions to Empower Patients) Program™ to fund innovative projects from United States (US)-based nonprofit organizations that help address some of the most pressing gaps between best practices and the care a patient actually receives. By supporting the patient advocacy organizations that are best positioned to tackle unmet patient needs, our goal is to reduce the burden of disease and help create a path to better care.
Proposal Submission and Review Process
The STEP Program continues to update its focus areas on a specific disease or aspect of health care, and advocacy organizations are invited to submit proposals to develop programs or resources that address an area of significant unmet need. Once the submission period closes, an external review committee evaluates the proposals against common criteria and identifies those with the greatest potential to make a positive impact on patients and caregivers.
Each review committee consists of a diverse group of subject matter experts, including health care providers and patients and/or caregivers, to provide broad perspectives on the submitted proposals. Once the final proposals are identified, recipients are notified and recognized by Novartis.
STEP Program Funding Recipients
Since its creation, the STEP Program has funded a variety of programs and resources that are helping to address gaps in care faced by patients, their caregivers and the health care community.
Current Focus Area: Advancing Biomarker Testing in the Cancer Community
*Please note the review committee is in the process of identifying funding recipients of the STEP Program for biomarker testing. Applicants will be notified of the review committee’s decision on or before January 31, 2020.
With the acceleration of personalized medicine, we hope that treatments will one day be tailored to each person’s cancer. In oncology, personalized medicine is often guided by results of biomarker testing that can identify specific changes in cancerous cells. This testing is also referred to as genomic testing, molecular profiling or tumor profiling, among other names.1 Though biomarker testing has become one of the cornerstones of personalized medicine, especially within oncology, there remain significant challenges when it comes to education, access and reimbursement.2,3,4
To help improve testing rates, the STEP Program will recognize and fund proposals that demonstrate innovation in the following areas:
For more information on the STEP Program focused on biomarker testing, please view the program submission FAQ or read our press release.
Sickle Cell Disease (SCD) Recipients Represent Broad Impact of the Disease
SCD is a genetic blood disorder which produces abnormal red blood cells that cause ongoing damage to blood vessels and organs.5 It is a lifelong illness that places physical and emotional burdens on patients and their families as they manage issues around work, school and family.
Through the STEP Program, five organizations received a total of nearly $250,000 for their proposals to improve the lives of people living with the disease.
Providing adolescents with tools to succesfullytransition from pediatric to adult care.
Proposals were evaluated by experts in the fields of advocacy, psychosocial support and multicultural health, as well as an SCD practitioner and patient.
Metastatic Breast Cancer (MBC) Recipients Making a Difference
Approximately 155,000 people in the US are living with MBC, a form of cancer that has spread from the breast to other parts of the body, such as the brain, bones, or liver.6,7 At this stage, the disease is incurable and life expectancy drops dramatically.8 An MBC diagnosis can be overwhelming, and people living with the disease face many unique challenges.
Through the STEP Program, three advocacy organizations were provided a total of $225,000 to support the MBC community.
A resource that helps patients and their caregivers interpret media coverage of MBC research, understand the relevance of this research for their clinical care and discuss the information with their health care providers.
Levit LA, et al. Implementing precision medicine in community-based oncology programs: three models. Journal of Oncology Practice. 2019;15(6):325-329.
Ciardiello F, Adams R, Tabernero J, et al. Awareness, understanding, and adoption of precision medicine to deliver personalized treatment for patients with cancer: a multinational survey comparison of physicians and patients. Oncologist. 2016;21:292–300.
Roseff SD. Sickle cell disease: a review. Immunohematology: Journal of Blood Group Serology and Education. 2009(25):2:67-74.
Mariotto A, et al. Estimation of the number of women living with metastatic breast cancer in the United States. Cancer Epidemiology and Prevention Biomarkers. 2017;26(6):809-815.