The STEP Program™: Supporting Solutions From Patient Advocacy Organizations
Patient advocacy organizations are a key source of information, empowerment, and support for patients at every step of 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 — or caregiver — actually receives. By supporting the patient advocacy organizations that are best positioned to tackle these unmet needs, our goal is to reduce the burden of disease and help create a path to better care.
Proposal Submission And Review Process
Every year the STEP Program addresses a specific disease, condition or aspect of health care in which advocacy organizations are invited to submit proposals to develop programs or resources that address that one 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.
Current Focus Area: Raising Awareness Of MS Caregiver Needs
*Please note the review committee is in the process of identifying funding recipients of the STEP Program for MS caregivers. Applicants will be notified of the review committee’s decision on or before May 29, 2020.
Multiple Sclerosis, or MS, is a chronic, debilitating disease of the central nervous system that can significantly impact the lives of people living with the condition, as well as families and loved ones.1,2 Due to the unpredictable nature of the disease, caregivers (also called “support partners” or “care partners”) can face challenges on many fronts while navigating the often-changing care needs for their loved one living with MS.3 While there is some support available for caregivers, there is an opportunity to do more.
To help improve caregiver support, the STEP Program will recognize and fund up to two proposals that demonstrate innovation in the following areas:
For more information on this iteration of the STEP Program, please view the MS caregiver submission FAQ.
STEP Program Funding Recipients
Since its creation, the STEP Program has funded a variety of programs and resources that are helping to address educational gaps for 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.4 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.4 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.5-7
To help improve testing rates, the STEP Program will recognize and fund proposals that demonstrate innovation in the following areas:
Awareness and education
For more information on this iteration of the STEP Program, please view the biomarker 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 that produces abnormal red blood cells which cause ongoing damage to blood vessels and organs.8 It is a lifelong illness that places physical and emotional burdens on patients and their families as they manage issues with 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 an external review committee comprised of 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 Americans 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.9,10 At this stage, the disease is incurable and life expectancy drops dramatically.11 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 L, Kim E, McAneny B et al. Implementing Precision Medicine in Community-Based Oncology Programs: Three Models. J Oncol Pract. 2019;15(6):325-329. doi:10.1200/jop.18.00661
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(3):292-300. doi:10.1634/theoncologist.2015-0279
Mariotto A, Etzioni R, Hurlbert M, Penberthy L, Mayer M. Estimation of the Number of Women Living with Metastatic Breast Cancer in the United States. Cancer Epidemiology Biomarkers & Prevention. 2017;26(6):809-815. doi:10.1158/1055-9965.epi-16-0889