Progress at the Heart Program
Progress at the Heart Program
Harmony Biosciences is proud to announce the launch of a new funding opportunity for 2021, Progress at the Heart, created to support innovative programs that address disparities, injustice, and inequities in the rare disease and sleep disorder community.
Sleep health disparities are impacted by race, socioeconomic status, discrimination, geography, social patterns, and access to healthcare as well as other complicating factors.1 Despite recent findings, tying racial/ethnic and socioeconomic position differences in sleep health, the contribution of sleep deficiency to health disparities remains largely unexplored.2
Progress at the Heart applications were accepted for programs that focused on one or more of the following categories, originally suggested by the Biotechnology Innovation Organization’s BIOEquality Pillars of Change, the Rare Disease Diversity Coalition, and Project Sleep’s Social Justice and Health Disparities Policy Recommendations:
- Community Programs: People-centered, community-led programs to improve awareness and treatment in the sleep disorder and rare diseases with sleep deficiencies communities and help achieve greater equality for underrepresented racial, ethnic, or other minority groups
- Education: Public health and healthcare provider education and programs that increase awareness and decrease time to diagnosis of sleep disorders and rare diseases with sleep deficiencies found in underrepresented racial, ethnic, or other minority groups
- Other proposals that help achieve greater equality within the sleep disorder and rare diseases with sleep deficiencies communities
Harmony is proud to announce the first awardees of Progress at the Heart. In total, $105,000 was awarded in 2021 for the following projects addressing health disparities and inequities for people living with sleep disorders and rare diseases with sleep disorders.
Community Health Clinic
Enhancing Sleep Health Awareness Among Chicago’s Medically Underserved Population
This project will provide educational materials about sleep health and various sleep disorders to the target population at Community Health Clinic (CHC), which primarily includes patients from Spanish- and Polish-speaking communities, whose annual income is at or below 100% the federal poverty line. Additionally, this project provides the framework and platform upon which to create and disseminate educational materials that are applicable for similar clinics serving low-income communities across Chicago.
Duke Department of Neurology
Duke Health Disparities in Neurology Scorecard
Creation of the Duke Racial Disparities in Neurology Scorecard, inspired by the White Coats for Black Lives Racial Justice Scorecard for medical schools. A calculator will be published electronically that will aid other neurology departments across the country to create their own scorecards.
Florida Sickle Cell Center
CRiSIS (Circadian Rhythm and Sleep Impact on Sickle Cell)
An initiative to investigate the sleep quality of patients living with sickle cell disease (SCD). The objective of this program is to better understand the sleep quality of people living with SCD and how their sleep quality may be contributing to or exacerbating their underlying condition.
Project Sleep
Focus Groups to Understand Barriers and Improve Sleep Disorders Awareness, Diagnosis, and Treatment in Black American Communities
This project aims to uncover important insights by conducting focus groups to better understand the first-hand perspectives of Black Americans, healthcare providers, and trusted community leaders. The findings will help inform future awareness and education campaigns, aiming to reduce delays to diagnosis and treatment of sleep disorders in underserved communities.
The Hypersomnia Foundation (HF)
Diversity, Equity, and Inclusion (DEI) Initiative
The DEI Initiative is focused on understanding and identifying the challenges people of diverse backgrounds may face when they need healthcare for excessive daytime sleepiness and other symptoms of sleep disorders. A five-step program, led by a DEI Task Force, HF plans to hold listening sessions in the community as first steps.
The Sleep Doctor
Bio-Rhythm Program
A behavioral health intervention designed to promote weight loss through using Fitbit technology to monitor circadian rhythm and coach participants to maintain proper sleep, nutrition, and activity habits. This program will help educate and monitor participants from underserved Hispanic communities in El Paso, TX, to address the high prevalence of sleep disorders contributing to obesity.
Click here to read our full 2021 press release.
Applications were reviewed by members of Harmony’s Commercial, Corporate Affairs, Compliance, Legal, and Medical teams and evaluated based on a standard set of review criteria, which included the quality of the application, creativity of the solution, and the organization’s infrastructure and past program successes.
For questions or more information, feel free to contact
progress@harmonybiosciences.com.
Stay tuned for our next Progress at the Heart program announcement in Q2 2022!
People with rare diseases often have limited access to diagnosis, treatment, and care. The disparities can be even greater for people from underrepresented racial, ethnic, or other minority groups in both access to care and underrepresentation in research and clinical trials. Together, these disparities make timely diagnosis and adequate treatment exponentially harder, potentially resulting in serious health consequences.3
Sleep deficiencies, which include insufficient or long sleep duration, poor sleep quality, and irregular timing of sleep, are disproportionately distributed among populations that experience health disparities in the United States.4 Studies have also suggested that racial/ethnic minorities and the socioeconomically disadvantaged may be more likely to experience sleep patterns that are associated with adverse health outcomes. Adverse outcomes of insufficient sleep and/or sleep disorders include weight gain and obesity, cardiovascular disease, diabetes, accidents and injuries, stress, pain, neurocognitive dysfunction, psychiatric symptoms, and mortality.5
References: 1. Billings ME, Cohen RT, Baldwin CM, et al. Disparities in sleep health and potential intervention models: a focused review. Chest. 2021;159(3):1232-1240. 2. Laposky AD, Van Cauter E, Diez-Roux AV. Reducing health disparities: the role of sleep deficiency and sleep disorders. Sleep Med. 2016;18:3-6. 3. #RiseForRare. The Rare Disease Diversity Coalition website. Accessed March 16, 2021. 4. Jackson CL, Walker JR, Brown MK, Das R, Jones NL. A workshop report on the causes and consequences of sleep health disparities. Sleep. 2020;43(8):zsaa037. 5. Grandner MA. Sleep, health, and society. Sleep Med Clin. 2017;12(1):1-22.
