Mar 17, 2021
  • The STEP (Solutions to Empower Patients) ProgramTM supports the development of creative new approaches to reimagine care
  • Recipients will launch variety of initiatives to help caregivers of people with cancer and certain blood disorders navigate care and treatment – and lessen difficulties faced by people with age-related macular degeneration

East Hanover, March 17, 2021 — Novartis recently awarded a total of $450 000 to eight US-based patient advocacy groups through the company’s signature initiative, the STEP ProgramTM, which was created in 2017 to support nonprofit organizations working on the front lines to address some of the most urgent and significant gaps in health care today.

Of the eight organizations, six were chosen for their novel ideas to help caregivers of people with cancer and certain blood disorders* navigate care and treatment, practice self-care and address the needs of specific patient populations, including those at different disease stages. Two nonprofits received funding for their innovative programs that aim to lessen difficulties faced by people with age-related macular degeneration (AMD) while performing activities of daily living, such as managing life at work or home.

The recipient organizations and their respective initiatives include:

  • Cancer Support Community’s CancerSupportSource®-Caregiver, a caregiver distress screening, referral and support program, will better enable cancer caregivers to navigate care and treatment, practice self-care, and address the unique needs of their loved ones.
  • Facing Our Risk of Cancer Empowered, Inc.’s CAREgiver FOcused Resources for Survivors and Previvors (Project CARE-FOR), a series of new multimedia resources, 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 will expand existing resources to help better educate lymphoma patients and caregivers on immunotherapy and CAR T-Cell therapy.
  • Sick Cells’ Sickle Cell Disease Caregiver Help Desk will help 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 will collect, collate, analyze and share 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 will help blood cancer caregivers navigate complicated financial and legal topics, including health insurance, employment rights, financial strategies and estate planning.
  • American Macular Degeneration Foundation, Inc.’s “Cooking at Home with AMD Vision Loss, Safely, For Your Health and Sight” will use 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” will use 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.

“Now more than ever, it is important that we stand behind these vital patient advocacy organizations working to help close gaps in care, especially as they continue to navigate the many additional challenges facing patients and caregivers as a result of the COVID-19 pandemic,” said Amber Spierer, Executive Director, US Patient Engagement, Novartis. “We look forward to seeing their dynamic, innovative programs come to life.”

Two external review committees reviewed the STEP Program proposals, with one committee focused on proposals about caregivers of cancer and certain blood disorders, and one dedicated to AMD submissions. The committees were comprised of experts in a variety of fields such as oncologic and ophthalmic nursing, behavioral health, human resources, optometry, psychology, advocacy, and health disparities. Additionally, individuals impacted by the diseases served on each review committee to ensure different perspectives were represented in the assessment process.

For more information about the STEP Program, including past areas of focus and funding recipients, please visit the Novartis US website’s STEP Program page.

*Proposals focusing on cancer and the following blood disorders were considered for funding: sickle cell disease (SCD), immune thrombocytopenia (ITP), aplastic anemia (AA), and thalassemia.

About Novartis 

Located in East Hanover, NJ, Novartis Pharmaceuticals Corporation – an affiliate of Novartis – is reimagining medicine to improve and extend people’s lives. As a leading global medicines company, we use innovative science and digital technologies to create transformative treatments in areas of great medical need. In our quest to find new medicines, we consistently rank among the world’s top companies investing in research and development. Novartis employs nearly than 16,000 people in the United States. For more information, please visit

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