The STEP Program™: Supporting Solutions from Patient Advocacy Organizations

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.

Funded programs include:

• Cancer Support Community’s CancerSupportSource®-Caregiver
  • 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.
• FORCE’s CAREgiver FOcused Resources for Survivors and Previvors (Project CARE-FOR)
  • A series of new multimedia resources that will help address the specific unmet needs of caregivers from hereditary cancer families, as determined through a community needs assessment.
• Lymphoma Research Foundation’s 2021 Caregiving and Chimeric Antigen Receptor (CAR) T Cell Therapy and Lymphoma Program
  • Expands existing resources to better educate lymphoma patients and their caregivers about immunotherapy and CAR T cell therapy.
• Sick Cells’ Sickle Cell Disease Caregiver Help Desk
  • Helps identify and close the gap in current resources available to sickle cell disease caregivers to better address their unique needs.
• The Sickle Cell Foundation of Tennessee’s SCDCARE for SCDCARE
  • Collects, collates, analyzes and shares real-life resilience strategies from sickle cell disease caregivers to help others caring for children and young adults with the disease.
• Triage Cancer’s Navigating Access and Equality: Providing the Answers that Matter
  • 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.

Funded programs  include:

• The American Macular Degeneration Foundation, Inc.’s “Cooking at Home with AMD Vision Loss, Safely, For Your Health and Sight”
  • 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.
• The SupportSight Foundation’s “My MacD Life”
  • 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.

Funded programs include:

• Accelerated Cure Project’s iConquerMS Caregiver Connection™
  • 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.
• Can Do MS’s Communication Guide for Support Partners and People Living with MS
  • 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 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:

• GO2 Foundation for Lung Cancer’s Project PROMOTE (Precision Oncology Molecular Testing Education)
  • An educational campaign that aims to increase biomarker testing in the lung cancer community.
• Patient Advocate Foundation’s Patient Guide to Biomarker Testing
  • A guide that will increase understanding and awareness of biomarker testing across cancer types.
• Sisters Network Inc.’s Pink Table Talk: Know Your HERstory
  • A multimedia campaign and online symposium to educate underserved African American breast cancer patients, caregivers, and the greater community on the importance of biomarker testing.
• The Life Raft Group’s Biomarker Testing Campaign
  • 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).
• Young Survival Coalition’s Let’s Get Digital
  • 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.

Funded programs include:

• All One Blood’s video series
  • Revealing powerful stories of those living with SCD to encourage self-advocacy.
• Children’s Research Institute’s INSERTT (ImproviNg SicklE TRansition Through Telemedicine)
  • A study evaluating telemedicine on improving health outcomes for SCD patients as they transition to adult care.
• Sickle Cell 101’s FACTSS (FAcilitating Communication BeTween PatientS and ProviderS)
  • A digital toolkit with customized communication strategies to empower patients to take control of their care.
• The Georgia Health Policy Center at Georgia State University’s educational videos
  • Equip patients and caregivers about the benefits and potential complications of therapeutic blood transfusions.
• The Sickle Cell Foundation of Georgia, Inc.’s interactive workshops
  • 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.

Funded programs include:

• FORCE’s XRAY: MBC (eXamining the Relevance of Articles for You: Metastatic Breast Cancer)
  • 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.
• METAvivor’s MBC PREP (Metastatic Breast Cancer Patient Resource and Education Portal)
  • Enables patients to easily access online information specific to their MBC diagnoses to make personalized and informed choices about their health.
• PAF’s Financial Resource Directory for Metastatic Breast Cancer Patients
  • An online tool that delivers information about financial resources to patients and caregivers who are experiencing or at risk of debt crisis as a result of their MBC diagnosis.

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

Recent Press Releases 

• Novartis awards $450,000 to eight nonprofit organizations through the STEP Program^TM
• Novartis STEP Program^TM awards nearly $375,000 to patient advocacy organizations for their innovative solutions in biomarker testing; now accepting proposals for caregiving in cancer and certain blood disorders
• Novartis STEP Program^TM now accepting submissions for proposals that address unmet patient needs in cancer biomarker testing
• Five nonprofit organizations to receive up to $250,000 through Novartis STEP Program^TM to support sickle cell patient initiatives
• Novartis to fund five innovative ideas to support patients and the sickle cell community 
• Novartis announces funding for patient advocacy initiatives to support and empower metastatic breast cancer community
• Novartis launches STEP Program™ to inspire solutions for people living with metastatic breast cancer

Contact Us

For questions about the STEP Program, please contact a member of the STEP Program team at step.program@novartis.com.

References:

1. National Alliance for Caregiving. Caregiving in the U.S. Executive summary. https://www.caregiving.org/wp-content/uploads/2020/05/2015_Caregivingint…. Published June 2015. Accessed July 2020.
2. Family Caregiver Alliance. Caregiving. https://www.caregiver.org/caregiving. Accessed July 2020.
3. National Eye Institute. Age-related macular degeneration. https://www.nei.nih.gov/learn-about-eye-health/eye-conditions-and-diseas…. Published August 2, 2019. Accessed April 10, 2020.
4. American Optometric Association. Age-related macular degeneration. https://www.aoa.org/healthy-eyes/eye-and-vision-conditions/macular-degen…. Accessed April 10, 2020.
5. National Multiple Sclerosis Society. Multiple sclerosis FAQs. https://www.nationalmssociety.org/What-is-MS/MS-FAQ-s. 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. https://www.caregiving.org/wp-content/uploads/2020/05/MSCaregivers2012_F…. Accessed November 26, 2019.
8. National Cancer Institute. Precision medicine in cancer treatment. https://www.cancer.gov/about-cancer/treatment/types/precision-medicine. 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. https://www.ncbi.nlm.nih.gov/pubmed/19927623. 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. https://www.cancer.org/cancer/breast-cancer/understanding-a-breast-cance…. Accessed September 12, 2019.
12. American Cancer Society. Breast Cancer Facts & Figures 2017-2018. Atlanta, GA: American Cancer Society, Inc.; 2017. https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-…. Accessed September 12, 2019.