Providence, Rhode Island –Today, the Papitto Opportunity Connection (POC) announced it is investing $1 million in a program working to create systemic change in Rhode Island and reverse decades of inequity. POC has awarded its first ever $1 Million Innovation Grant to the Lifespan Comprehensive Sickle Cell Program, which will allow for expansion and enable it to become a regional leader and a national model for sickle cell care.

Sickle Cell Disease is a life-threatening inherited blood disorder affecting more that 100,000 Americans and millions worldwide. Nearly all patients with sickle cell disease (SCD) are Black or Latino, and nationally the disease is woefully understudied and underfunded. Currently, approximately 300 Rhode Islanders suffer from sickle cell disease, with more children born each year with the disease and identified by the state’s newborns screening program.

“POC was founded on the premise of creating real change in communities with the most need in Rhode Island,” said John Tarantino, Managing Trustee of the Papitto Opportunity Connection. “The expansion of the Lifespan Comprehensive Sickle Cell Center will directly address the inequity in healthcare faced by those who suffer with this disease – due to lack of access to treatment and lack of funding for this disease. POC strongly encourages other foundations in Rhode Island to join us by investing funds in this program. Working together, we can create a solution to this inequity, one that benefits our entire state.”

Although the disease has been recognized for longer than a century, the development of sickle cell disease therapies has faced significant obstacles, largely stemming from insufficient research funding that many researchers and scholars have attributed to systemic racism.

“For too long, sickle cell disease has been ignored and not made a priority within the healthcare system in Rhode Island and across our country,” said Patrick McGann, MD, Director of the Lifespan Comprehensive Sickle Cell Center at Rhode Island and Hasbro Children’s hospitals.” This initial contribution from the Papitto Opportunity Connection is a testament that we are taking sickle cell seriously and will continue to strive to make Rhode Island the best place to receive sickle cell care in the world through innovative and patient-centered solutions. This funding is only the beginning of a long journey.”

Beyond issues impeding research, individuals living with sickle cell disease also encounter interpersonal racism that disrupts their access to, and delivery of, high-quality healthcare. Individuals with sickle cell disease are sometimes unjustly labeled as drug seekers and accused of exaggerating their very real and severe pain. This mischaracterization results in inadequate treatment and additional suffering. Many individuals choose to forego seeking medical care due to these challenges and the emotional strain associated with the perceived racial stigma, which ultimately heightens the risk of life-threatening complications.

Yet despite these barriers to care, most children diagnosed with SCD now survive into adulthood. But as they transition from childhood to adulthood, there are a lack of programs and resources, resulting in an unacceptable premature mortality rate for young adults with this disease. Studies have shown that the lifetime medical costs for SCD are well over one million dollars per individual.

With support from the Papitto Opportunity Connection, the Lifespan Comprehensive Sickle Cell Program will enable further enhancements in support and care for those suffering from sickle cell disease across Rhode Island. This unique program will ensure those with SCD receive the patient centered equitable healthcare they deserve from infancy through adulthood.

Since it was established in December 2020, POC has supported hundreds of nonprofit organizations in our state. POC focuses on supporting programs that create transformative change and in June 2024 launched the $1 Million Innovation Grant. The Lifespan Comprehensive Sickle Cell Center is the first to receive this POC Innovation Grant.

About the Papitto Opportunity Connection:

The Papitto Opportunity Connection (POC) is a non-profit private foundation dedicated to listening and working together with Rhode Island’s communities in need to empower and create systemic change by investing in education, job skills training, health care and entrepreneurship. Established in December 2020, POC has provided support to hundreds of non-profit organizations across the state and invested nearly $100 million dollars to support programs that provide crucial services to uplift Rhode Island’s communities in need. Learn more at POCFoundation.com.