Sickle Cell Disease:

Fighting to Improve Quality of Life

Adrian Boscolo-Hightower
July 11, 2015
HPA 432: PAP Power Point

What is Sickle Cell Disease

Sickle cell disease is a genetic order that causes changes in the
shape of red blood cells that carry oxygen in the body.
The changes to cell cause severe pain episodes that are
unplanned, unpredictable, and reoccurring and require multiple
prolonged hospitalizations and frequent readmission to the hospital.
(1,2)
Due to the unpredictability of pain episodes, upwards of 40% of
patients are readmitted to the hospital within 30 days of discharge.
(3)
In the United States, between 90,000 to 100,000 people are
affected by the disease, 4,000 to 5,000 of whom are residents of
Illinois.(4)

Treatment Options at Risk

University of Illinois at Chicago Sickle Cell Center
The Sickle Cell Center at the University of Illinois at Chicago
(UIC) serves as a regional leader in sickle cell disease, providing
care to 650 adult and 192 pediatric sickle cell patients in 2014.
(5)
Funding from the Illinois Department of Public Health has
allowed for the opening of an acute care infusion clinic at UIC
that is open sixteen hours a day/five days a week to control
sickle cell pain episodes in an observation unit which has been
shown to reduce hospital admissions.
Funding for the sickle cell center has been cut from the
current state budget that is under development. Elimination
of funding will directly impact patient services, including the
continued operation of the acute care infusion clinic.

Restore Funding to the Sickle Cell Center

Contact your State Representative and State Senator

and urge them to restore funding to the University of
Illinois at Chicago Sickle Cell Center.

Why contact State Legislatures?

In 2006, the the Illinois State Legislature identified the unmet needs of
sickle cell patients and appropriated $500,000 to the UIC Sickle Cell
Center.
The new funding allowed the opening of the acute care infusion clinic
which allowed sickle cell patients to receive treatment for their pain
episodes without seeking care in costly emergency rooms. The
opening of the infusion care clinic greatly improved quality of life for
sickle sell patients.
The state legislature has direct control over the state budget and the
appropriations of funds for the sickle cell center. The support of the
state legislature is vital to the continued high quality treatment of
patients at the UIC Sickle Cell Center.

Supporters in the Legislature

State Representative La Shawn K Ford
Representative Ford has introduced legislation, HR0255, which urges
the department of Health and Family Services to Waive the 30-day
readmission rule for those affected by sickle cell disease.
Representative Fords efforts to address this important issue identify
him as an important ally and he also could serve as a champion to
reintroduce funding for the UIC Sickle Cell Center into the state budget.

Senator Kimberly Lightford

Senator Lightford has been a strong supporter of health initiatives
focused on improving health care access for underserved populations.
She is well positioned to serve as an advocate for and supporter of
efforts to reintroduce funding for the Sickle Cell Center at UIC.

Marketing Approach
Presentations to Legislatures
In order to highlight the importance of funding to the UIC Sickle
Cell Center, presentations will be made directly to state
legislators highlighting the vital role funding has on the lives of
sickle cell patients.
Community Petition
A petition by voters to state legislators supporting the continued
funding to the UIC Sickle Cell Center strengthens the message
that residents of Illinois want to support improving the quality of
life of sickle cell patients.

Community Support
The organizations listed below actively support sickle cell patients
and and advocate for increased sickle cell research
Sickle Cell Disease Association of Illinois (SCDAI)
http://www.sicklecelldisease-illinois.org/
Lydia Smith Sickle Cell Foundation
http://www.sicklecellfund.org/
Have a Heart for Sickle Cell Anemia Foundation
http://hhsca.org/

Governmental Organizations
The organizations listed below are engaged in establishing federal
policy and/or guidelines related to sickle cell disease
National Heart, Lung, and Blood Institute
Responsible for identifying and supporting sickle cell research
Centers for Disease Control
Establish guidelines for sickle cell disease screening
Illinois Department of Public Health
Provides funding to University of Illinois at Chicago Sickle Cell
Center

References
1.
2.

3.
4.
5.

Strouse JJ, Jordan LC, Lanzkron S, Casella JF. The excess burden of stroke in hospitalized adults with
sickle cell disease. American journal of hematology 2009;84:548-52 .
Vichinsky EP, Styles LA, Colangelo LH, Wright EC, Castro O, Nickerson B. Acute chest syndrome in
sickle cell disease: clinical presentation and course. Cooperative Study of Sickle Cell Disease. Blood
1997;89:1787-92
Nouraie M, Gordeuk VR. Blood transfusion and 30-day readmission rate in adult patients hospitalized
with sickle cell disease crisis. Transfusion 2015:In press
Strouse JJ, Jordan LC, Lanzkron S, Casella JF. The excess burden of stroke in hospitalized adults with
sickle cell disease. American journal of hematology 2009;84:548-52
Information Services, University of Illinois Hospital. 2015.