On June 19th of every year, we commemorate the end of slavery in the United States. In the last hundred years, the healthcare field has made great strides in treating disease, yet many people still receive poor and unequal care. Compared to white people in the United States, people of color have less access to high-quality health care.¹ For people suffering from pain—which includes almost everyone in the pancreatitis community—the inequities are severe. Black people are less likely to have their pain taken seriously, less likely to have their pain recorded accurately in their medical record, and less likely to get effective pain treatments.²
Today, we want to highlight the disproportionate impact of pancreatic disease, including pancreatitis, on Black, Indigenous, and people of color.
All pancreatic disorders affect Black people more than any other race
Risk of pancreatitis is 2–3 fold higher among Black people than white people
Pancreatic cancer rates are considerably higher in Black people than in any other racial group
Incidence of hospitalization for chronic pancreatitis is 2-3 x higher for Black patients as compared to whites, and there is a greater risk of readmissions after a hospital stay
The prevalence of constant pain, severe pain, and disability are significantly higher in Black chronic pancreatitis patients.
In light of these inequities, we want to share our commitment to Diversity, Equity, and Inclusion within Mission: Cure. We are dedicated to learn, listen, and act against systemic inequalities that plague the healthcare space. Fundamentally, we believe that all patients deserve access to high-quality medical care.
Below we’ve listed our goals in regards to Diversity, Equity, and Inclusion (DEI) for the next year.
Reflect on and Work Against Systemic Racism
We are committed to educating ourselves about systemic racism and raise awareness on our platforms.
- We acknowledge that the first step in working against systemic racism within and outside our organization is to inform and educate ourselves.
- In consultancy with Black, indigenous, and people of color (BIPOC), we are planning social media campaigns to raise awareness on systemic racism in the medical space.
- We are using our reach on social media platforms to start conversations and point to systemic racism and issues affecting pancreatitis patients in particular.
Diversify our Patient Community
We are committed to actively working on expanding our reach within marginalized communities.
- We are analyzing our social media data to evaluate which patient groups are underrepresented. We are creating plans on how to include these groups.
- To increase representation on our channels, we are including images we use show Black, indigenous and people of color.
- Corporations with Black, indigenous and people of color patients, communities and doctors, are especially valuable to us.
- We are interviewing pancreatitis patients of color on their priorities regarding advocacy, care and cure development. These insights will help us understand their experiences and needs and improve our DEI efforts.
Increase Language Inclusivity
We are committed to expanding our audience by alleviating language barriers for those who do not speak English.
While most of our content and resources are in English, we have translated several of our webpages to Spanish and Arabic. We recognize that we still have a long way to go to ensure the inclusion of as many patients as possible.
- We are translating our webpages and materials to different languages. We are prepared to publish content in Hebrew and German by the end of the summer.
- We are working on making our website more user friendly so our audience can easily locate resources in different languages.
Improve Equity and Accessibility for People with Disabilities
We are committed to taking steps to ensuring the accessibility of our services for people with disabilities.
- We are translating key content and resources into Easy-to-Read Language.
- To further the inclusion of people with vision impairment or vision loss, we are paying special attention that the content of our webinars is understandable without seeing the slides. Moreover, we are uploading audio recordings of webinars.
- To ensure the readability of our content, we are experiment with using bigger font sizes.
- We are increasing the representation of people with disabilities in the pictures we use on our social media accounts and webpages.
Mission: Cure is committed to addressing these inequities and to learning, listening, and acting against systemic racism. We have started this work, but we need to do more, and we will.
We will convene regularly to discuss the progress and implementation of these commitments. Additionally, we will connect and consult with other non-profits and companies to exchange practices regarding diversity, equity and inclusion. We believe we need professional help to achieve our DEI goals and are in the process of selecting a consulting group that works for our unique needs as a small nonprofit in the rare disease and healthcare space.
¹Institute of Medicine (US) Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care; Smedley BD, Stith AY, Nelson AR, editors. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Washington (DC): National Academies Press (US); 2003. RACIAL AND ETHNIC DISPARITIES IN DIAGNOSIS AND TREATMENT: A REVIEW OF THE EVIDENCE AND A CONSIDERATION OF CAUSES. Available from: https://www.ncbi.nlm.nih.gov/books/NBK220337/
²Hoffman, Kelly M et al. “Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites.” Proceedings of the National Academy of Sciences of the United States of America vol. 113,16 (2016): 4296-301. doi:10.1073/pnas.1516047113