PROVIDENCE, R.I. (WPRI) — Papitto Opportunity Connection ( POC ) is hoping to help people struggling with a disease that it claims is “woefully understudied and underfunded.”

On Monday, POC awarded the Lifespan Comprehensive Sickle Cell Program with its first $1 million Innovation Grant.

According to the U.S. Centers for Disease Control and Prevention , sickle cell disease is a kind of inherited blood disorder that can be life threatening. Nearly all patients suffering from the disease are Black or Latino.

Georgina Dauda is a sickle cell patient who said she has been in pain all 31 years of her life.

“I would cry, and I would become swollen all over, and I was just always in distress,” Dauda said.

Daud said getting proper care for her disease hasn’t been easy.

“Whether it’s because of my skin color or because of the disease that I have which requires high doses of pain medication,” Dauda explained. “I’ve been called certain names like ‘drug seeker’ or I’ve been told that I’m lying that I’m not in pain.”

Dauda’s experience isn’t unique. POC said many people forego medical care despite the heightened risk of life-threatening complications to avoid the emotional strain.

According to POC, 300 Rhode Islanders suffer from sickle cell disease. That number continues to grow as it is being found in more children through the state’s newborns screening program.

“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,” POC said.

Lifespan said the grant will help make sure Rhode Islanders with sickle cell disease receive adequate care from infancy through adulthood.

“This group of patients that have suffered so much pain have never been prioritized,” said Dr. Patrick McGann, director of the Lifespan Comprehensive Sickle Cell Center at Rhode Island and Hasbro Children’s hospitals. “I hope that our program here can demonstrate … what it takes to take care of our patients and other places in the country can duplicate that.”

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