Have A Heart for Sickle Cell Anemia Foundation is a not for profit organization, which strives to diminish suffering and improve the quality of life for those individuals affected by sickle cell disease. We are committed to raising the public’s awareness and providing education to patients, their families, health professionals, legislators and the general public about sickle cell disease, its management and its challenges. Through these efforts we strive to promote positive patient relationships, thereby empowering them to effectively cope with their illness. Furthermore, we recognize our responsibility to generate funding for research and the continued advancement of medical care in treating sickle cell disease.


My name is Bonnye Johnson and I represent Have a Heart for Sickle Cell Anemia Foundation.   We and a coalition of community based sickle cell organizations along with individuals affected by sickle cell disease have come together on behalf of those suffering with this devastating disease.  We have representatives from Circle of Life Center 4 Hope Sickle Cell Disease Foundation, Sickle Cell Disease Association of Illinois, Lydia Smith Sickle Cell Foundation, Sickle Cell Anemia Volunteer Enterprise and Javon’s Gift Foundation.

Our purpose here is to present a petition with over 5,500 signatures requesting that funding be restored to UI Sickle Cell Center. We understand the state’s budget deficit, but the budget cannot be balanced on the backs of those with the most needs!  Secondly, that our state legislators support HR 0255 which urges the Department of Healthcare and Family Services to waive Sickle Cell Disease from the 30-Day Readmission Rule.  Because those with sickle cell disease have unplanned, unmanageable pain that frequently requires re-hospitalization within 30 days of discharge and therefore why should institutions caring for these patients be penalized because of the nature of the disease.  Lastly, to begin to address capitation of benefits as a result of patients receiving Medicaid benefits being enrolled into managed care.

We are here to ask our legislators and the governor to have a heart for those with sickle cell; it is not a choice you are born with it!!

I would like to thank State Representative La Shawn Ford and State Senator Donne Trotter for their continued commitment and support.

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