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.
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.
Caregiving for Cancer and Blood Disorders
Approximately 44 million Americans have served as caregivers for family members and friends with chronic illnesses and conditions.1 Shorter hospital stays, a shift toward increased outpatient care and treatment advances that have extended lives are placing an increased responsibility on caregivers, and the physical and emotional demands of long-term caregiving can have a major impact on health.2 While some support exists for caregivers of patients with cancer and blood disorders, there is an opportunity to do more.
To help improve caregiver support for cancer and certain blood disorders,* the STEP Program provided a total of $300,000 to six patient advocacy organizations that demonstrate innovation in navigating care and treatment, self-care and addressing the needs of specific populations.
A caregiver distress screening, referral and support program that will better enable cancer caregivers to navigate care and treatment, practice self-care, and address the unique needs of their loved ones.
Helps blood cancer caregivers navigate complicated financial and legal topics, including health insurance, employment rights, financial strategies and estate planning.
*Proposals focused on cancer and the following blood disorders were considered for funding: sickle cell disease (SCD), immune thrombocytopenia (ITP), aplastic anemia (AA) and thalassemia.
Daily Living Needs for People With AMD
Age-related macular degeneration (AMD) is a progressive eye disease that affects the macula, a small portion of the retina, causing central vision loss in one or both eyes3 and is categorized as “dry” (atrophic) or “wet” (exudative).4 Individuals with AMD may experience difficulties navigating everyday activities at work or at home, such as self-care, cooking, driving, using a computer, or reading.
To help improve patient support, two patient advocacy organizations were provided a total of $150,000 for their proposals that demonstrate a commitment to addressing daily living needs of people with AMD.
A program with a television show-like format featuring a variety of experts to provide kitchen safety tips for those with low vision and teach community members how to prepare dishes scientifically designed to be beneficial to those at risk for, or with, AMD.
Podcasts to inspire and motivate the AMD community to better utilize technology, give people easy, uncomplicated access to information, and facilitate the sharing of powerful stories from other members of the community to support behavior change.
Raising Awareness Of MS Caregiver Needs
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.5,6 Due to the unpredictable nature of the disease, MS caregivers (also called “support partners” or “care partners”) can face many challenges while navigating the often-changing care needs for their loved one.7
To help improve caregiver support, the STEP Program provided a total of $150,000 to two organizations for their proposals that demonstrate innovation in emotional support, physical care, and everyday assistance needs.
Provides emotional support, everyday assistance, and other community-building resources to MS caregivers through easy access to dedicated MS caregiver resources, a peer-to-peer discussion forum, and social media platforms.
Includes multimedia and individualized toolkits that will provide resources and tips to help manage challenges of MS caregiving.
Advancing Biomarker Testing In The Cancer Community
Due to advances in precision medicine, oncology care has evolved from a trial-and-error approach to one that aims to target the right treatment to the right patient at the right time.8 These treatments are often guided by results of biomarker testing that can identify specific changes in cancerous cells.8 The benefits of personalized medicine can only be fully realized if there is a shift toward routine biomarker testing.
To help improve testing rates, the STEP Program provided a total of nearly $375,000 to five organizations for their proposals that improve awareness and education, self-advocacy and policy development for biomarker testing.
The campaign will launch a series of webinars and videos to promote awareness and education, as well as develop an abstract, to improve guidelines for patients with gastrointestinal stromal tumor (GIST).
A digital toolkit about biomarker testing for young adults with breast cancer.
Proposals were evaluated by an independent external review committee comprised of experts in the fields of oncology, advocacy and biomarker testing, as well as a health care practitioner and patient.
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.9 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 successfully transition 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.10,11 At this stage, the disease is incurable and life expectancy drops dramatically.12 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.
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.