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.

Cancer Support Community logo FORCE logo image Lymphoma Research Foundation logo
Sick Cells logo The Sickle Cell Foundation of Tennessee logo Triage Cancer logo

Funded programs include:

*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.

American Macular Degeneration Foundation logo Support Sight Foundation logo

Funded programs  include:

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.

Funded programs include:

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 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.

Accelerated Cure project and Can Do MS

Funded programs include:

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.

Funded programs include:

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.

Funded programs include:

Proposals were evaluated by experts in psycho-oncology, nurse navigation, as well as an MBC caregiver and expert in advocacy.

Recent Press Releases 

Contact Us

For questions about the STEP Program, please contact a member of the STEP Program team at


  1. National Alliance for Caregiving. Caregiving in the U.S. Executive summary.…. Published June 2015. Accessed July 2020.
  2. Family Caregiver Alliance. Caregiving. Accessed July 2020.
  3. National Eye Institute. Age-related macular degeneration.…. Published August 2, 2019. Accessed April 10, 2020.
  4. American Optometric Association. Age-related macular degeneration.…. Accessed April 10, 2020.
  5. National Multiple Sclerosis Society. Multiple sclerosis FAQs. Published 2019. Accessed November 26, 2019.
  6. McKeown L, Porter-Armstrong A, Baxter G. Caregivers of people with multiple sclerosis: experiences of support. Multiple Sclerosis Journal. 2004;10(2):219-230. doi:10.1191/1352458504ms1008oa.
  7. The National Alliance for Caregiving, National MS Society. Multiple sclerosis caregivers…. Accessed November 26, 2019.
  8. National Cancer Institute. Precision medicine in cancer treatment. Published 2017. Accessed September 12, 2019.
  9. Roseff S. Sickle cell disease: a review. Immunohematology: Journal of Blood Group Serology and Education. 2009;25(2):67-74. Accessed September 12, 2019.
  10. 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.
  11. American Cancer Society. Stages of breast cancer | understand breast cancer staging.…. Accessed September 12, 2019.
  12. American Cancer Society. Breast Cancer Facts & Figures 2017-2018. Atlanta, GA: American Cancer Society, Inc.; 2017.…. Accessed September 12, 2019.