Navigating any illness has many challenges, and one of the most daunting aspects can be seeking help. The emotional weight of the diagnosis, coupled with the fear of burdening others, often leaves individuals feeling isolated. But what if there existed a platform crafted specifically to ease these concerns? What if this platform offered a nurturing community tailored to individual needs? Introducing RAISE (Resources and Assistance to Support Empowerment),1 a pioneering initiative established by the Tigerlily Foundation in partnership with WiTT Forever that stands ready to redefine how patients confront and conquer the many nonclinical hurdles that come with a cancer diagnosis.
At the heart of RAISE lies a simple yet profound mission: to empower patients by bridging the gap between their needs and the opportunity to have a better quality of life while in treatment or in a clinical trial. By harnessing the power of digital connectivity along with human support, RAISE enables patients to articulate their needs, from financial assistance and other logistical needs to emotional support, with ease and dignity. RAISE does not replace existing systems that capture, and report patients’ needs but instead, RAISE is used to enhance current ecosystems by enabling a safe and trusted place to capture everything that is needed and requested by the patient on a real-time basis, not only when healthcare navigators intervene, or systems intervene.
Patients shouldn’t have to fight to get support while fighting for their lives. RAISE makes it easy for them to share their needs; it makes it easy for individuals who want to help to GIVE; it makes it easy for healthcare systems and companies that truly want to meet their health equity commitments to do so by sponsoring the platform in order to give patients direct support to overcome social determinants of health needs; and it allows healthcare providers, navigators, and us to identify gaps in care for patients and fill them.
The Problem: Health Equity
In the quest for health equity, the numbers paint a jarring picture. According to the Centers for Disease Control and Prevention, the decline in life expectancy between 2019 and 2021 was disproportionately larger for American Indians and Alaska Natives, Hispanic, and Black individuals compared with White individuals.2 Further, according to the Health and Human Services Office of Minority Health:
Black/African Americans have the highest mortality rate of any racial and ethnic group for all cancers combined and for most major cancers. Death rates for all major causes of death are higher for Black/African Americans than for non-Hispanic whites, contributing in part to a lower life expectancy for both Black/African American men and women.3
A few words from RAISE participants
“It has been very helpful with bills and things that I need. I’m very thankful to be a part of it through Tigerlily.” —Paris C.
“It was straightforward and easy to use! I liked the email about the concierge help, I thought that was helpful for people who aren’t as tech-savvy.” —Jazmine S.
“Overall, the platform is amazing. It’s super easy to use, it’s straightforward. It really takes the emotional aspect out of it (asking for help).” —Aisha P.
The RAISE platform aims to provide support to individuals of all ethnic groups who have been diagnosed with breast cancer. These statistics underscore the profound disparities in health outcomes experienced by marginalized communities. These disparities are not merely coincidental but rooted in a complex interplay of social determinants of health. According to the World Health Organization,4 individuals in these marginalized groups, defined by social characteristics such as sex/gender, race/ethnicity, socioeconomic status, and sexual orientation, continue to face elevated risks of chronic conditions and poor mental and physical health. Moreover, life-course perspectives highlight how these marginalized groups are subjected to an accumulating series of health-damaging risks and inaccessibility to health-promoting resources early in life, placing them on a trajectory of deteriorating health.
As articulated by scholars like Kimberlé Crenshaw, the concept of intersectionality emphasizes how multiple systems of oppression, such as racism, sexism, classism, and heterosexism, intersect and mutually reinforce one another to produce unique adversities.5 As we strive for health equality, it is imperative to recognize and address these causes of health disparities, rooted in the intersectionality of various systems of oppression. Only then can we truly achieve a future where every individual, regardless of their background, can thrive in good health.
The Solution: Building Community Through RAISE
Over the past 20 years, there has been more than $179 billion invested in health equity6; yet according to a survey by Kaiser Permanente, “68% of Americans surveyed have experienced at least one unmet social need.”7 We know that tackling social determinants of health is key to achieving health equity, enabling everyone to have access to full health and not be disadvantaged due to their social circumstances. RAISE was developed to help patients overcome social determinants of health, such as financial barriers, while being interwoven with a tapestry of hope, solidarity, and community. With thousands burdened by the complexities of illness, this platform emerges as a beacon of support, fostering not just a sense of belonging but also a profound understanding among patients and their support networks. The significance of community within RAISE goes beyond mere camaraderie; it becomes a crucial element buffering the challenges patients face, optimizing their health outcomes, and addressing health equity head-on.
RAISE addresses health equity by creating a virtual community that transcends traditional barriers.
Compassion, kindness, and truly listening to patients are the bedrock of health equity. RAISE addresses health equity by creating a virtual community that transcends traditional barriers. The innovations in telehealth embedded in RAISE ensure that individuals, regardless of their background or circumstance, can access the platform easily, entering a space where health equity isn’t just a goal but could be a lived reality. RAISE becomes a testament to the transformative power of community, breaking down barriers, empowering individuals, and ushering in a future where health is truly accessible to all.
How Does RAISE Work?
Patients who register with the Tigerlily Foundation RAISE platform create a registry-style list of their unique individual needs. This can include things like financial support for rent payments or medication costs as well as assistance with daily tasks like childcare, groceries, or basic home maintenance. After this list is created, patients can share a special link with their friends, family, neighbors, or other important members of their personal community. These individuals can claim the patient’s list items that they’re able to support and can provide financial assistance directly through the platform. Donated funds are securely transferred directly to the patient.
How You Can Engage With the RAISE Platform
There are a myriad of ways people can engage with RAISE:
- Patients: Easily create an account, enter your needs, and share with your network
- Healthcare providers: Share information about RAISE with your patients
- Healthcare systems: Integrate RAISE into your support offerings
- Sponsors and biotechnology companies: Sponsor/fund the platform as part of your health equity commitment, so that patients can get help in overcoming barriers
Call to Action
RAISE transcends its role as a mere platform—it’s a lifeline, a beacon of hope, and a testament to the transformative power of community and compassion. As patients grapple with the uncertainties of illness, RAISE stands as an example of what patients can build for other patients, to overcome obstacles to equal health. Every donation, every act of kindness, reaffirms our shared commitment to supporting one another, forging a world where no patient ever walks alone on their path to healing.
To all those navigating the challenges of illness, RAISE extends a hand of support. You are not alone, and your community stands poised to assist every step of the way. Let us rise together, emboldened by compassion, and united in our pursuit of health and healing.
We issue an urgent call to action to healthcare professionals and any stakeholder touching the life of a patient to join Tigerlily Foundation in this mission to uplift and empower those affected by illness. Together, let’s harness the power of community to break down barriers, advocate for equitable care, and ensure that every individual receives the support they deserve.
To learn more about RAISE and how you can contribute to this vital cause, visit https://raise.tigerlilyfoundation.org/.
About the Author
Maimah Karmo is the founder of Tigerlily Foundation, a breast cancer survivor, and an advisory board member of Conquer.
Tigerlily Foundation is a national breast cancer organization whose mission is to educate, empower, support, and advocate for young women ages 15 to 45 before, during, and after breast cancer. Tigerlily Foundation is dedicated to ending disparities of age, stage, and color. To learn more, visit tigerlilyfoundation.org.
References
- RAISE Platform for Patients and Donors. https://raise.tigerlilyfoundation.org/
- Arias E, Tejada-Vera B, Kochanek KD, Ahmad FB. Provisional life expectancy estimates for 2021. Vital Statistics Rapid Release. Report no 23; August 2022. Accessed May 17, 2024. www.cdc.gov/nchs/data/vsrr/vsrr023.pdf
- US Department of Health & Human Services. Cancer and African Americans. Accessed May 16, 2024. https://minorityhealth.hhs.gov/cancer-and-african-americans
- World Health Organization. Closing the Gap: Policy into Practice on Social Determinants of Health: Discussion paper. 2011. Accessed May 17, 2024. www.who.int/publications/i/item/9789241502405
- Crenshaw K. The urgency of intersectionality. Presented at TEDWomen 2016; October 2016; San Francisco, CA. Accessed May 17, 2024. www.ted.com/talks/kimberle_crenshaw_the_urgency_of_intersectionality?language=en
- Kayser A. 20 years, $179B spent on health equity: Why isn’t the needle moving? Beckers Hospital Review. April 14, 2023. Accessed May 17, 2024. beckershospitalreview.com
- Kaiser Permanente. Americans see unmet needs in housing, food, social connection as a growing concern and significant barrier to health. PR Newswire. June 4, 2019. Accessed May 17, 2024. www.prnewswire.com/news-releases/americans-see-unmet-needs-in-hous ing-food-social-connection-as-a-growing-concern-and-significant-barrier-to-health-300861235.html#:~:text=In%20fact%2C%2068%25%20of%20Americans,doctor%20or%20getting%20a%20medication
