PROVIDENCE – The Papitto Opportunity Connection recently announced it awarded its first $1 million Innovation Grant to the Lifespan Sickle Cell Program.
The funding will help expand and enhance the program to care for those with sickle cell disease in Rhode Island.
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Sickle cell disease is a life-threatening blood disorder that is inherited and affects more than 100,000 Americans and millions worldwide. Almost all patients with the disease are Black or Latino.
Currently, approximately 300 Rhode Islanders face sickle cell disease, and more children are born with the disease each year and identified by the state’s newborn 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 health care 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.”
While the disease has been recognized for more than a century, the development of sickle cell disease therapies has been limited mainly because of lack of research funding.
“For too long, sickle cell disease has been ignored and not made a priority within the health care system in Rhode Island and across our country,” said Dr. Patrick McGann, 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.”
Along with limited research, those with sickle cell disease also face interpersonal racism that can affect their access to health care. They’re often labeled as drug seekers and accused of exaggerating their pain and the mischaracterization can lead to people choosing not to seek medical care.
Most children with sickle cell disease now survive into adulthood, but as they get older, there’s a lack of resources, and studies have shown that the lifetime medical costs for the disease are more than $1 million.
Katie Castellani is a PBN staff writer. You may contact her at Castellani@PBN.com.
