Indianapolis; January 21, 2018: The Indiana Sickle Cell Consortium (ISCC) and its partners will be holding a “Sickle Cell Statehouse Day” on January 29, 2018. This event, the first of its kind in Indiana history, will be held from 11:00 A.M. until 2:00 P.M. in the Indiana Statehouse.
The purpose of the event is to raise legislators’ awareness of the plight of the more than 1,000 Indiana citizens who suffer from Sickle Cell Disease (“SCD”) and to seek additional funding and support. “SCD is a tremendously challenging illness for patients and providers alike. In addition to its
intense pain, it creates numerous psycho-social and economic problems that dramatically challenge the lives of patients and their families. Many of these problems don’t have easy solutions and SCD patients need more help than is currently available,” said Gary A. Gibson, President and CEO of Martin Center Sickle Cell Initiative (MCSCI), one of the consortium members.
SCD is one of the most common genetically transmitted diseases on Earth. Estimates indicate that there are 1,000 people who suffer from it in Indiana. It is carried mainly by people with origins in Africa, South and Central America, the Caribbean, and the Middle East. Although SCD is most commonly found in people of color, it also affects a small percentage of Caucasians.
The “Sickle Cell Statehouse Day” event will include an information table staffed with ISCC staff members, SCD patients and other stakeholders. “We will be speaking directly with legislators and members of the public about SCD and the many issues it brings. Our goal is to bring attention to the challenges that adult patients like me face and to inspire our lawmakers to find ways to help us improve our quality of life.” said Sharon Hatcher-Hutchinson, an adult Sickle Cell patient/advocate.
The Indiana Sickle Cell Consortium (ISCC) is comprised of Indiana healthcare providers and community based organizations who are committed to improving the lives of individuals affected by Sickle Cell Disease (SCD). The ISCC currently works with the Indiana State Department of Health to provide follow-up educational services to families whose newborns have been identified as having Sickle Cell Disease or Sickle Cell Trait. “Our work with ISDH is very important and they are a very good partner,” said Dr. Emily Meier of the Indiana Hemophilia and Thrombosis Center, another ISCC member organization. “However, the resources currently available through the state and ISDH are very limited. Indiana is doing well when it comes to the pediatric population, but we need more
help for adult patients,” she added. According to Meier, these services should include psycho-social counseling, occupational assistance and medical provider education.
The ISCC Sickle Cell Advocacy Day will feature brief remarks from ISCC members, State Representative Gregory Porter and SCD patients.
For more details about the Indiana Sickle Cell Consortium., please visit http://www.indianasicklecell.org.
The purpose of the event is to raise legislators’ awareness of the plight of the more than 1,000 Indiana citizens who suffer from Sickle Cell Disease (“SCD”) and to seek additional funding and support. “SCD is a tremendously challenging illness for patients and providers alike. In addition to its
intense pain, it creates numerous psycho-social and economic problems that dramatically challenge the lives of patients and their families. Many of these problems don’t have easy solutions and SCD patients need more help than is currently available,” said Gary A. Gibson, President and CEO of Martin Center Sickle Cell Initiative (MCSCI), one of the consortium members.
SCD is one of the most common genetically transmitted diseases on Earth. Estimates indicate that there are 1,000 people who suffer from it in Indiana. It is carried mainly by people with origins in Africa, South and Central America, the Caribbean, and the Middle East. Although SCD is most commonly found in people of color, it also affects a small percentage of Caucasians.
The “Sickle Cell Statehouse Day” event will include an information table staffed with ISCC staff members, SCD patients and other stakeholders. “We will be speaking directly with legislators and members of the public about SCD and the many issues it brings. Our goal is to bring attention to the challenges that adult patients like me face and to inspire our lawmakers to find ways to help us improve our quality of life.” said Sharon Hatcher-Hutchinson, an adult Sickle Cell patient/advocate.
The Indiana Sickle Cell Consortium (ISCC) is comprised of Indiana healthcare providers and community based organizations who are committed to improving the lives of individuals affected by Sickle Cell Disease (SCD). The ISCC currently works with the Indiana State Department of Health to provide follow-up educational services to families whose newborns have been identified as having Sickle Cell Disease or Sickle Cell Trait. “Our work with ISDH is very important and they are a very good partner,” said Dr. Emily Meier of the Indiana Hemophilia and Thrombosis Center, another ISCC member organization. “However, the resources currently available through the state and ISDH are very limited. Indiana is doing well when it comes to the pediatric population, but we need more
help for adult patients,” she added. According to Meier, these services should include psycho-social counseling, occupational assistance and medical provider education.
The ISCC Sickle Cell Advocacy Day will feature brief remarks from ISCC members, State Representative Gregory Porter and SCD patients.
For more details about the Indiana Sickle Cell Consortium., please visit http://www.indianasicklecell.org.
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