North Carolina
Sickle Cell Syndrome Program
1997-1998 Annual Report
Vol. 1, No. 1 Department of Health and Human Services April 1999
Program History/Mission
The North Carolina Sickle Cell Syndrome Program The treatment for sickle cell disease and related hemoglo-
(NCSCSP) was established in 1973 by the ratification of bins, like that of most illnesses, is symptomatic and support-
House Bill 32. The bill authorized the Governor of North ive. Pain is a frequent feature of sickle cell disease and may
Carolina to appoint a Council on Sickle Cell Syndrome and be managed by a variety of analgesics.
decreed that recommendations of the Council should be
communicated to the Department of Human Resources, Recently, new research efforts have included the multicenter
study of hydroxyurea (HU), HUGKIDS (study of HU
Division of Health Services, in order to implement the North
treatment in children), the study of preoperative transfusion,
Carolina Sickle Cell Syndrome Program.
the multicenter study of acute chest syndrome and the
The mission of the North Carolina Sickle Cell Syndrome “STOP” stroke prevention trial. All offer promising results
Program is the promotion of health and well-being of in the management of this illness. Bone marrow transplants
persons with sickle cell disease through the reduction of also are an option for some patients.
mortality and morbidity and through the heightened aware-
The psychosocial aspect of sickle cell disease is also a major
ness of the disease and its complications.
factor in the patient’s well being. Chronic illnesses such as
sickle cell disease affect not only the patient but family
members as well. Financial strain, anxiety, depression, fear
Sickle Cell Disease – An Overview and unfamiliarity with the disease can place extreme stress
Sickle cell disease occurs in high frequency among various on families. Therefore, it is important that the North Caro-
ethnic groups that were exposed during evolution to selec- lina Sickle Cell Syndrome Program offer supportive
tion pressure from falciparum malaria, a disease believed to programs and interventions to insure the general well being
have killed more humans than any other disease in our of the patient.
history. Individuals of African, Mediterranean, Middle
Eastern, and Indian ancestry are at highest risk for inheriting
sickle hemoglobin. Objectives/Methodology
The first clinical description of sickle cell anemia was The objectives of the 1997-1998 Annual Report are as
published in 1910 by Dr. J.B. Herrrick, a physician from follows:
Chicago who reported some of the clinical and hematologic
1) to summarize the Newborn Screening Data compiled
manifestations of the disorder in a 20-year-old dental
student, Walter Clement Noel, from Grenada. by the State Laboratory of Public Health Hemoglo-
binopathies Branch,
Sickle cell disease is an inherited red blood cell disorder and 2) to summarize the data regarding hospitalizations and
refers to a group of genetic disorders characterized by the deaths as related to sickle cell disease compiled by
presence of sickle hemoglobin (Hb S), anemia, and acute the State Center for Health Statistics,
and chronic tissue injury. All tissues within the body are at 3) to summarize the data concerning Program services,
risk for damage as a consequence of the obstruction of blood i.e., service coordination, education and genetic
flow produced by the abnormally shaped red blood cells. counseling,
The common complications include: 4) to summarize the services provided by the medical
centers and
• painful episodes involving soft tissues and bones 5) to summarize yearly accomplishments.
• acute chest syndrome (a serious, often deadly, compli-
cation involving the lungs) The information for this report was furnished by the State
• chronic organ damage Laboratory of Public Health, the State Center for Health
• cerebral vascular accidents (strokes) Statistics and data forms completed by the regional staff,
• splenic and renal dysfunction community-based centers’ staff and medical centers’ staff.
The data regarding births and deaths will cover years 1994-
The most common type of sickle cell disease is sickle cell 1997 to provide a more comprehensive examination of this
anemia (Hb SS). Other forms of sickle cell disease include
data. Also, the terms client and patient will be used inter-
Hb SC disease, Hb SOArab, Hb SD and Hb SE disease.
changeably throughout this report.
N. C. Sickle Cell Syndrome Program – 1997-1998 Annual Report Page 1
Part I. Program Services ity or mortality once sickle cell disease was detected
(Clinical Practice Guideline – Sickle Cell Disease, Diagno-
Introduction sis, Management, and Counseling in Newborns and Infants
1993). A controlled clinical trial demonstrated that twice-
The North Carolina Sickle Cell Syndrome Program was one daily oral penicillin reduced both mortality and morbidity
of the first state programs in the country and has often been from infectious complications of sickle cell anemia and thus
recognized as a national model for its efforts in service provided the rationale for newborn sickle cell screening.
delivery, diagnosis, treatment and research of sickle cell (Gaston, Verter, Woods, et. al., 1986)
disease. Today, the Program continues to expand its services
and diversify to meet the growing needs of our population. Effective May 1994, all infants born in North Carolina are
Current Program services include: screened for sickle cell disease and other abnormal hemo-
globins. Universal screening ensures that no newborn is at
• newborn screening for all infants at no cost risk for early death from sickle cell disease because he was
• testing services for the public at local health depart- not identified in early childhood. Early identification is the
ments first step in efforts to save lives.
• state laboratory services for accurate diagnosis
• service coordination Since newborn screening began in our state, 354 infants
• educational services to clients, health professionals have been identified with sickle cell disease or related
and the public hemoglobinopathy (Table 1). Once newborns are identified
• genetic counseling for those persons identified with an through the Newborn Screening Program, the second task is
abnormal hemoglobin to link identified newborns with comprehensive health care.
• reimbursement of medical bills for eligible clients A recent report compiled by the North Carolina Sickle Cell
• medical and consultative services provided by the Syndrome Program indicated that 75 percent of all infants
medical centers identified with sickle cell disease during FY 1997-98 were
placed on penicillin within two to three months of life, the
Service delivery is provided through a multidisciplinary designated time frame recommended by state guidelines.
team of administrative staff (Program Manager, Program
Consultant and Education Consultant) all located in the
central office, nine Regional Sickle Cell Educator/Counse- Table 1
lors assigned to 81 counties, four community-based centers Newborn Abnormal Blood Screening
(Sickle Cell Disease Association of Southern Piedmont – by Disease Type, 1994-1997
Charlotte; Operation Sickle Cell, Inc. – Fayetteville; Sickle
Cell Disease Association of the Piedmont – Greensboro and Type 1994* 1995 1996 1997 Total
Sickle Cell Disease Association of America, Inc. – Eastern FS 31 51 64 56 202
N.C. Chapter – Jacksonville) assigned to 19 counties and six FSC 21 21 24 15 81
medical centers with comprehensive sickle cell programs FC 13 10 10 6 39
who provide medical care to clients from all 100 counties. FE 4 4 9 13 30
The North Carolina Sickle Cell Syndrome Program has a FF 0 0 0 2 2
client caseload of 2,400 clients. The Program serves clients Total 69 86 107 92 354
from birth throughout the life cycle. Currently, among the
*Does not represent a complete year of data.
oldest clients served by the Program is an 80-year-old
Southeast Asian with EE disease and a 75-year-old African
American with SC disease. In addition to those newborns diagnosed with sickle cell
disease and other abnormal hemoglobins (disease), 12,730
newborns were identified with a trait, i.e., FAS, FAC, FAE,
Services FAO and FAV (Table 2). People with a trait do not have
disease and their life expectancy is the same as that of
A. Newborn Screening persons with normal hemoglobin. However, these persons
Newborn screening for sickle cell disease began in the
United States in the early 1970’s. These initial screening Table 2
programs grew out of the recognition that sickle cell anemia Newborn Abnormal Blood Screening
was associated with significant morbidity and mortality. The by Trait Type, 1994-1997
principal causes of death in infants with sickle cell disease
are overwhelming infections with Streptococcus pneumoniae
organisms, cerebral vascular accidents, and acute splenic
Type 1994* 1995 1996 1997 Total
FAS 2,186 2,168 2,273 2,292 8,919
sequestration crisis where blood flow from the spleen
becomes blocked by the sickled red blood cells. FAC 649 640 659 691 2,639
FAE 62 49 60 63 234
Although laboratory procedures to detect sickle hemoglobin FAO 1 1 1 1 4
in newborns have been available for nearly two decades, FAV 173 279 268 214 934
newborn screening for sickle cell disease was not widely Total 3,071 3,137 3,261 3,261 12,730
implemented by State screening programs until the late
1980’s. Arguments against newborn screening included the *Does not represent a complete year of data.
contention that little could be done to reduce either morbid-
Page 2 N. C. Sickle Cell Syndrome Program – 1997-1998 Annual Report
Table 3 Table 4
Newborn Abnormal Blood Screenings Client Services Provided
1994-1997 FY 1997-1998
Initial Contacts ................................................ 94
1994* 1995 1996 1997 Intake Assessments ........................................ 90
Total Number
Six Month Assessments ............................... 969
Screened 80,717 103,946 107,690 109,424
Annual Assessments .................................... 795
Sex Follow-up Services ..................................... 1,641
Male 1,562 1,630 1,667 1,666 Referrals .................................................... 2,767
Female 1,572 1,591 1,690 1,664
Genetic Counseling .................................... 1,616
Unknown 6 2 11 23
Total Services Provided ............................. 7,932
Race
White 199 297 324 313
Black 2,721 2,703 2,752 2,747
American Indian 45 34 50 45
Asian/Pacific genetic counseling. On-going education is provided to
Islander 0 180 112 36 patients and families affected by sickle cell disease to help
Other 155 0 111 191 them manage the illness more effectively. Education is also
Unknown 20 9 19 21 provided for health and human service professionals and
Total Abnormal statewide public education is provided for school groups and
Screenings 3,140 3,223 3,368 3,353 various professional and community organizations.
Percent 3.9% 3.1% 3.1% 3.1% In FY 97-98, the North Carolina Sickle Cell Syndrome
*Does not represent a complete year of data. Universal newborn Programs’ regional, community-based centers’ staff and
screening did not begin until May of 1994. central office staff provided 740 educational sessions to
various audiences including health professionals, clients,
students, professionals and the lay community (Table 5).
carry an abnormal gene and therefore are at risk for passing
Our data indicates that 68,320 individuals received educa-
this gene to their offspring. Table 3 is a compilation of
tion. However, students in grades 7-12 received education
tables 1 and 2; however, new data such as sex and race are more frequently than any other target audience.
introduced.
Genetic counseling is offered for those persons identified
with an abnormal hemoglobin (trait) and who may be at
B. Service Coordination future risk for having a child with sickle cell disease to help
them make informed parenting decisions. Genetic counsel-
The North Carolina Sickle Cell Syndrome Program’s Policy ing is also provided to parents who have newborns with
requires that sickle cell educator/counselors contact families sickle cell disease and other abnormal hemoglobins identi-
of newborns and new clients with sickle cell disease or fied through the Newborn Screening Program. In FY 97-98,
related hemoglobinopathy within 45 days to provide genetic approximately 1,616 persons received genetic counseling.
counseling, conduct a needs assessment, initiate a patient
care plan and coordinate referrals to the major medical
centers. The Program requires that sickle cell educator/
counselors conduct a minimum of two home visits per year
with children birth to 18 years of age in order to monitor Table 5
their health care needs and to provide psychosocial support. Educational Activities, FY 1997-1998
Adult clients, age 19 and above, should be provided a
minimum of one annual home visit. In FY 97-98, the Number of
Program staff provided a total of 7,932 services to the 2,400 Target Group Sessions
clients served by the NCSCSP (Table 4). The patient
Students (Grades K-6, 7-12) ............................... 367
caseload ranges from 88 to 370 patients per sickle cell
educator/counselor or community-based center. Other Lay ...................................................................... 206
services provided include, follow-up services and referrals Health Professionals ............................................. 41
to various agencies such as, Department of Social Services, Clients/Family (Patient Education) ........................ 31
Vocational Rehabilitation, Services for the Blind and the Professionals ......................................................... 35
North Carolina Sickle Cell Foundation. College Students ................................................... 22
Unknown* .............................................................. 38
Total Sessions ..................................................... 740
C. Education and Genetic Counseling
*The NCSCSP could not differentiate the target groups for 38
In addition to service coordination, The North Carolina sessions held in Guilford and Alamance counties.
Sickle Cell Syndrome Program staff provide education and
N. C. Sickle Cell Syndrome Program – 1997-1998 Annual Report Page 3
D. Reimbursement Component (Purchase of that will have far reaching effects in improving the health
Medical Care Program) and quality of life for patients affected by sickle cell disease.
Several medical centers also have satellite clinics in Raleigh,
The North Carolina Sickle Cell Syndrome Program has a Greensboro, Wilmington and Shelby to improve patient
reimbursement component that covers medical bills for accessibility to receiving medical care. A total of 232
clients who fall below the federal poverty scale. The patients were seen through satellite clinics in FY 97-98.
reimbursement program covers the following services for
children and adults with sickle cell disease:
• inpatient admissions Part II. 1997 North Carolina
• outpatient surgery
• hospital outpatient visits Hospitalizations for Sickle Cell
• physician office visits Disease
• therapy
• drugs and supplies The medical manifestations of sickle cell disease, including
• rental of equipment recurring acute pain, acute chest syndrome, stroke, splenic
sequestration, etc., often cause persons living with sickle cell
Usually the sickle cell educator/counselors complete the disease to be hospitalized for several days to a week or in
eligibility applications for the client. In FY 97-98, 2,417 rare cases much longer. According to the 1997 data, the
claims were paid on behalf of 175 eligible clients with sickle average length of stay for sickle cell patients was 6.4 days
cell disease. (Table 7). Data also indicates that patients 20 to 44 years of
age spent the greatest number of days in the hospital and
therefore their hospital charges far exceeded any other age
E. Services Provided by the Medical Centers group.
In an effort to assure expert consultative care and follow-up Blacks were hospitalized more than any other race or ethnic
to patients living with sickle cell disease, the North Carolina group, spending a total of 19,214 days in the hospital in
Sickle Cell Syndrome Program contracts with six medical 1997. The total charges for hospitalizations for all patients
centers to provide comprehensive medical services to was $29,553,262. Medicaid was the largest payer of the
persons with sickle cell disease. The medical centers are: hospital claims. Figure 1 describes the percentage paid by
each payer.
1) Carolinas Medical Center – Charlotte
2) Duke University Medical Center – Durham
3) East Carolina University School of Medicine –
Greenville
4) Presbyterian Hospital – Charlotte Figure 1
5) UNC Memorial Hospital – Chapel Hill
Inpatient Hospitalizations for Sickle Cell by Payer
6) Wake Forest University School of
Medicine – Winston-Salem North Carolina Residents, 1997
M e dica re O the r
The medical centers offer a diagnostic evaluation of sickle 2 7% G ov e rn m e nt
cell disease and all of its variants. Pediatric programs often 2%
initiate and monitor the administration of prophylactic S e lf-P a y ,
penicillin. The centers provide vaccines that aid in prevent- Ind ige nt, or
ing infections, they provide access to national research C ha rity
3%
studies such as hydroxyurea, butyrate, transcranial doppler
and renal studies that are producing new treatments for HM O
sickle cell disease. In addition, successful bone marrow 6%
transplants have been performed on sickle cell patients at
M e dica id
several of these medical centers. A comprehensive approach 5 0%
O the r P riva te
1 2%
to the medical management of sickle cell disease has
resulted in individuals living longer and experiencing an
improvement in their overall quality of life.
Other services provided by the medical centers include:
• physician education Part III. 1994-1997 North Carolina
• physician referrals and consultations Sickle Cell Deaths
• psychosocial services
• community satellite clinics Fifteen to 20 years ago, the median life expectancy for
• patient education and genetic counseling patients with sickle cell anemia (Hb SS) was estimated to be
15 years, and as many as 20 percent of children died within
In FY 97-98, the six medical centers provided 23,831 the first 3 years of life due to overwhelming bacterial
services to the 1,934 patients with sickle cell disease served infections. In 1994, the Cooperative Study for Sickle Cell
by the centers (Table 6). Three hundred and forty-six Disease (CSSCD) reported results of its first prospective
patients (346) were involved in various research protocols study of life expectancy and risk factors. Researchers
Page 4 N. C. Sickle Cell Syndrome Program – 1997-1998 Annual Report
Table 6
Sickle Cell Services Performed at Medical Centers, FY 1997-98
Medical Center Services
Duke CMC UNC Wake ECU Presbyterian1 Total
Clinic
Pediatric - New 45 29 18 23 23 0 138
Pediatric - Return 1,235 319 244 176 1,068 0 3,042
Adult - New 21 6 14 0 0 0 41
Adult - Return 901 57 277 0 0 66 1,301
Total 2,202 411 553 199 1,091 66 4,522
Outpatient/Clinic Services
Emergency - Pediatric 46 58 32 242 0 0 378
Emergency - Adult 355 171 212 0 0 23 761
Other Visits - Pediatric 0 321 176 157 247 0 901
Other Visits - Adult 0 62 1,049 0 0 0 1,111
Clinical Research - Pediatric 0 0 0 121 47 0 168
Clinical Research - Adult 0 0 598 0 0 0 598
Satellite Clinic Visits - Pediatric 98 11 58 0 38 0 205
Satellite Clinic Visits - Adult 27 0 0 0 0 0 27
Total 526 623 2,125 520 332 23 4,149
Inpatient Admissions
Illness Related - Pediatric 190 121 40 355 199 0 905
Illness Related - Adult 260 99 179 0 0 44 582
Research Admissions - Pediatric 0 0 0 0 0 0 0
Research Admissions - Adult 1 0 33 0 0 0 34
Total 451 220 252 355 199 44 1,521
Services Provided
Telephone Consultations 2,100 1,770 728 910 0 10 5,518
Genetic Counseling 0 213 0 184 0 4 401
Patient/Family Education 2,461 624 0 554 1,091 66 4,796
Health Care Provider Education 19 153 20 271 13 1 477
Group/Community Education 77 72 0 7 10 1 167
Total 4,657 2,832 748 1,926 1,114 82 11,359
Patient Follow-up*
Pediatric (Ages 0 to 18) 397 146 134 254 318 0 1,249
Adult (Ages 19 and over) 265 94 217 46 34 29 685
Total 662 240 351 300 352 29 1,934
Patients Followed on Protocols
Exchange Transfusion 2 1 9 12 23 0 47
Hydroxyurea 125 7 58 6 23 3 222
Renal Study 5 2 28 0 2 0 37
STOP 0 0 0 0 14 0 14
Transcranial Doppler Study 0 0 1 18 3 0 22
Hip Coring 0 0 0 0 4 0 4
Total 132 10 96 36 69 3 346
Total All Services 8,630 4,336 4,125 3,336 3,157 247 23,831
1
Presbyterian Hospital became a contracted Medical Center in April, 1998. This data represents their first quarter of operation.
*Represents an average.
analyzed data on nearly 3,800 patients enrolled in the with Hb SC the median age at death was 60 years for men
CSSCD study from 1978 to 1988. They found that the and 68 years for women (Laboratory Medicine, November
median age at death for individuals with sickle cell anemia 1995). Reasons for this relatively recent improvement in
was 42 years for men and 48 years for women, still consider- patient outcomes lie in a better understanding of the patho-
ably younger than the general African-American population genesis and natural history of acute and chronic organ
but more than double the pessimistic estimates. For patients damage that has led directly to improved clinical manage-
ment (Lane, Peter A. 1996).
N. C. Sickle Cell Syndrome Program – 1997-1998 Annual Report Page 5
Table 7
Inpatient Hospitalizations for Sickle Cell*
North Carolina Residents, 1997
*Represents all hospitalizations with ICD-9CM diagnosis=282.6.
Total Length Average
Total Average of Stay Length Total
Charges1 Charge (in days) of Stay Discharges
Sex
Male $17,141,237 $8,746 13,051 6.7 1,960
Female $12,412,025 $8,123 9,425 6.2 1,528
Age
Under 1 $694,938 $11,392 405 6.6 61
1 to 5 $1,544,357 $4,752 1,255 3.9 325
6 to 12 $1,899,181 $5,720 1,516 4.6 332
13 to 19 $2,839,400 $7,152 2,597 6.5 397
20 to 44 $19,768,747 $9,481 14,662 7 2,085
45 to 64 $2,462,439 $9,850 1,772 7.1 250
65+ $344,201 $9,058 269 7.1 38
Race
Black $25,447,560 $8,694 19,214 6.6 2,927
Other $296,673 $8,726 205 6 34
White $247,131 $7,723 206 6.4 32
American
Indian/Eskimo $100,520 $5,913 71 4.2 17
Asian/Pacific
Islander $154,359 $12,863 98 8.2 12
Unknown $3,307,018 $7,097 2,682 5.8 466
Payer
HMO $1,796,444 $8,893 1.385 6.9 202
Other Private $2,893,393 $6,905 2,238 5.3 419
Medicaid $14,539,161 $8,173 11,460 6.4 1,779
Medicare $9,197,492 $9,795 6,604 7.0 939
Other Government $494,755 $8,530 408 7.0 58
Self Pay, Indigent
or Charity $632,017 $6,945 381 4.2 91
Total $29,553,262 $8,473 22,476 6.4 3,488
1
The total charges are rounded numbers.
Between 1994-1997, 145 patients in North Carolina died
related to complications of sickle cell disease (Figure 2). Figure 2
Those dying from sickle cell related complications were North Carolina Resident Deaths
compared to those who died from other causes (the general due to Sickle Cell, 1994-97
population in North Carolina not affected by sickle cell
disease) (Figure 3). Data indicates that for persons who died 50
43
from other causes not related to sickle cell disease, the 41
40
greatest number of deaths occurred in those aged 65 and
Number of Deaths
34
over (71.1%). However, the greatest number of deaths in the 30
sickle cell population occurred in those between 35-64 years 27
of age (53.1%). Sickle cell patients between 18-34 years of 20
age followed in deaths.
10
Sickle cell related deaths occurred fairly equally between
0
males and females between 1994-1997 (Figure 4). The
1 99 4 1 99 5 1 99 6 1 99 7
majority of those who died also had a high school education
(Figure 5). Year
Page 6 N. C. Sickle Cell Syndrome Program – 1997-1998 Annual Report
Part IV. Summary
Figure 3
The North Carolina Sickle Cell Syndrome Program contin-
1994-97: NC Resident Deaths by ues to look for new ways to improve services to patients
Age Group and Cause with sickle cell disease and other abnormal hemoglobins. In
FY 97-98, the NCSCSP organized a Mecklenburg County
U n d er 18
2 .5
9 .0
Task Force on Sickle Cell Syndrome to improve care
coordination for adult sickle cell patients in Mecklenburg
County and surrounding areas. Many adult patients did not
Age Group
3 .6
18 to 34
3 3 .1 have a primary care provider and received their medical care
O th e r C a u s e s
through the emergency departments at Carolinas Medical
2 2 .8 S ic k le C e ll
35 to 64
5 3 .1 Center and Presbyterian Hospital. To help address this issue,
Presbyterian Hospital in Charlotte became the sixth con-
65 an d u p
7 1 .1 tracted medical center. The staff at Presbyterian in addition
4 .8
to Carolinas Medical Center will provide comprehensive
0.0 20.0 40.0 60.0 80.0
care coordination for adult sickle cell patients in Mecklenburg
County and surrounding areas. Plans are also underway to
Percent of Deaths
address the issue of patients’ accessibility to comprehensive
medical care in other areas of the state such as the west and
parts of the east where there are no readily accessible
medical centers with sickle cell programs for children and/or
adults. East Carolina School of Medicine is the only
comprehensive sickle cell medical program providing
Figure 4 comprehensive services for children in the east.
North Carolina Sickle Cell Deaths In FY 97-98, the Program continued to expand its statewide
by Sex, 1994-1997 educational efforts for health professionals and the general
population. Program guidelines for administering penicillin
to children with sickle cell disease were developed for
primary care providers who care for youngsters with sickle
cell disease. Various educational materials were created in
Spanish. Statewide public service announcements and talk
F em ale
M a le shows were aired via the radio throughout the state in both
47%
53% April, Public Health Month, and September, National Sickle
Cell Month, to raise the awareness of sickle cell disease. The
North Carolina Sickle Cell Syndrome Program also pre-
sented and exhibited at national and statewide conferences
including but not limited to, the National Institutes of Health
Conference in Washington, D.C., the annual Baby Love
Conference in the Research Triangle Park and the Early
Intervention Conference in Winston-Salem.
The North Carolina Sickle Cell Syndrome Program distributed
Puzzles, a story about a school-age child with sickle cell
disease, to nearly one-third of the elementary schools in North
Carolina. The Program also published and circulated statewide
Figure 5 10,000 biannual newsletters entitled, “Sickle Cell Information
North Carolina Sickle Cell Deaths Exchange.” The NCSCSP coordinated and held four quarterly
by Education, 1994-1997 teleconferences at 10 sites across the state. The teleconfer-
70
64 ences are designed as a part of the on-going training for health
60 and human service professionals who work with sickle cell
patients and families. The teleconferences were entitled:
Number of Deaths
50
40 • “Legal Issues Surrounding Genetic Counseling”
• “Transitioning the Pediatric Sickle Cell Patient”
30
23
26
• “Establishing Trust – A Prerequisite for Working
20 Effectively with Families”
10
9 10
6
• “Annual Planning Meeting for Medical and
5
0
2
Community-Based Center Directors”
No
E ducation
Less t han
HS
The Program was also instrumental in placing two parents of
S ome H S H igh
S chool
S ome
C ollege
C ollege G r ad
S chool
U nknow n
Education children with sickle cell disease on the Children and Youth
Section’s Parent Advisory Council in the Division of Women’s
This figure reflects the education level at the time of death; and Children’s Health. Through our comprehensive team of
therefore, children are represented as well as adults under
the categories of no education and/or less than high school. health care professionals, we are providing “hope for a brighter
future” for clients and families coping with sickle cell disease
and other abnormal hemoglobins.
N. C. Sickle Cell Syndrome Program – 1997-1998 Annual Report Page 7
This report was prepared by Kimberly H. Leathers, Education Consultant, N.C.
Sickle Cell Syndrome Program. The Program also recognizes Kathleen Jones-
Vessey and Jean Stafford, State Center for Health Statistics, for graphs and design
and Robbi Safko, State Laboratory of Public Health, for the newborn screening data.
For more information, contact:
Division of Women’s and Children’s Health
Sickle Cell Syndrome Program
P. O. Box 29597
Raleigh, NC 27626-0597
(919) 715-3411
Glenda P. Harris, Program Manager
State of North Carolina
James B. Hunt Jr., Governor
Department of Health and Human Services
H. David Bruton, M.D., Secretary
A. Dennis McBride, M.D., M.P.H., State Health Director
North Carolina Public Health 5,000 copies of this public document were printed at a cost of $490.00 or 10¢ per copy.
EveryWhere. EveryDay. EveryBody.
NC Sickle Cell Syndrome Program
North Carolina Department of Health and Human Services
Division of Women’s and Children’s Health
Sickle Cell Syndrome Program
P. O. Box 29597
Raleigh, NC 27626-0597
Printed on recycled paper
Page 8 N. C. Sickle Cell Syndrome Program – 1997-1998 Annual Report