Harris aims to raise awareness of sickle cell disease

HARRISBURG, May 23 – A group of organizations joined state Rep. Jordan Harris, D-Phila., to advocate for patients suffering from sickle cell disease, discuss new health policy initiatives and ask for support for science and clinical research.

"Sickle cell is a hereditary disease with a high prevalence among African-Americans and people of color,” Harris said. “The goal of this special month is to educate people about sickle cell and provide support to individuals and their families whose lives have been touched by the disease. It’s also an opportunity to support research activities that can lead to improved treatment and, one day, a cure.”

Sickle cell anemia is a serious blood disorder that causes acute pain, severe anemia, infections and vascular blockages that can lead to widespread organ damage and death. It is a genetic disease, affecting 2 million Americans, most often African-Americans and Hispanics. Until the past few decades, most people with sickle cell disease did not live beyond young adulthood, but advances in treatment have improved and lengthened the lives of patients who have access to good medical care.

“Children born with sickle cell are at a particularly high risk for complications, including stroke. Early detection and appropriate intervention is the key to treating sickle cell and minimizing its effects on patients,” Harris said.

Harris explained that in 2015, Pennsylvania created a new budget line item for health education, awareness and access to Hydroxyurea, the only FDA-approved drug to treat sickle cell disease. He also said, the implementation of Pennsylvania’s medical marijuana program has helped a considerable number of patients and their families to improve their quality of life.

“The Department of Health has approved more than 200 applications for the Safe Harbor Letter, which allows parents or guardians to obtain medical marijuana for a child out of state until Pennsylvania sets up its medical marijuana program. This means children with serious medical conditions like sickle cell and those who care for them can begin to experience an increased quality of life,” he noted.

The representative pointed out the need to collect data in order to support initiatives and develop an information technology-based system to connect patients to available health care resources.

“It’s our responsibility to provide the best health care available to patients when they need it and have it delivered in a way that provides the best outcomes,” he said.

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