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ARKANSAS DEPARTMENT OF FINANCE AND ADMINISTRATION Powered By Docstoc
					                   ARKANSAS MINORITY HEALTH COMMISSION

   SICKLE CELL OUTREACH INITIATIVE GRANT
         REQUEST FOR APPLICATIONS
                          DATE ISSUED: MARCH 1, 2011
                       DEADLINE TO SUBMIT: APRIL 15, 2011

                                       AMHC SC012-RFP

The Arkansas Minority Health Commission (AMHC) is pleased to announce that it is seeking
applications from community and faith-based non-profit organizations for funding programs that
advance a greater understanding of sickle cell trait and disease (SCT/D) throughout Arkansas.

The purpose of the grant is to further the AMHC’s mission and strategic plan of increased
education and awareness regarding sickle cell trait and disease prevention. In addition, this grant
strives to support community-based initiatives that seek to improve the quality of life for Arkansans
living with sickle cell disease and better educate the general public about how sickle cell is
inherited. Due to the disproportionate health care costs and poorer health outcomes associated with
SCT/D, this grant program strives to build capacity among community based organizations that
address high-risk minority communities – particularly those that can reach these target populations
by:
 Improving community understanding of SCT/D through education and awareness campaigns.
 Increasing the number of minority Arkansans who have been screened for SCT/D and know
     their status.
 Increasing access to genetic counseling services.
 Increasing access to support services for patients and families affected by SCT/D.
 Increasing the number of support groups and organizations focused on SCT/D prevention,
     education, and care.

Improving the quality of life for people with sickle cell disease and increasing prevention requires
interventions on individual, family, health care system and community levels, including:
    a) People living with sickle cell disease
    b) Family-members of people with sickle-cell disease
    c) People with sickle cell trait, and
    d) Members of affected populations.

Therefore, AMHC encourages broad participation by eligible candidates to assist in reaching its
mission and goals.
                                         AMHC Sickle Cell Outreach Initiative Grant – Request for Applications




TABLE OF CONTENTS

AMHC SC012-RFP ............................................................................................................................ 1

A. BACKGROUND INFORMATION .............................................................................................. 3

   Racial and Ethnic Health Disparities in Sickle Cell Disease .......................................................... 3

   Epidemiology of Sickle Cell Disease ............................................................................................. 4

   Cost of Sickle Cell Disease in Arkansas ......................................................................................... 5

B. ARKANSAS MINORITY HEALTH COMMISSION’S SICKLE CELL OUTREACH
INITIATIVE ....................................................................................................................................... 6

C. ELIGIBILITY ................................................................................................................................ 7

D. SCOPE OF WORK........................................................................................................................ 8

E. APPLICATION & AWARD ......................................................................................................... 8

F. EVALUATION & SCORING ..................................................................................................... 10

G. DEADLINE ................................................................................................................................. 11

H. CONTACT INFORMATION...................................................................................................... 11




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                             AMHC Sickle Cell Outreach Initiative Grant – Request for Applications




A. BACKGROUND INFORMATION

Sickle cell disease is a genetic disease that affects the red blood cells. There are many different
forms of sickle cell (including Hemoglobin SS, Hemoglobin SC, and Sickle Beta Thalassemia), but
in general, they all cause these cells to form in the shape of a ―sickle.‖ When this happens, the
blood has difficulty flowing through the body, which causes severe pain and even organ damage.

Care and quality of life for sickle cell patients has dramatically improved since the 1970s, but
current life expectancy is still only 39 years,i exactly half of the 78 years for average Americans.
However, recent studies have shown that the latest standards of care, focused on prevention and
consistent treatment, can greatly increase both the quality and length of life for sickle cell patients.
Unfortunately, many health care professionals have insufficient knowledge about appropriate
treatment guidelines. Although people of African descent are disproportionately affected, sickle cell
disease affects people of all races, including Hispanics, Caucasians, Asians, and others.

Approximately 1 in 12 African Americans have sickle cell trait, which means they have one of the
genes that can cause sickle cell disease. If two people with sickle cell trait conceive a child, there is
a 25% chance that the child will be born with sickle cell disease. Although sickle cell trait is not a
disease, and people with the trait do not typically have symptoms, everyone should know their trait
status and be educated about the risk for having children with sickle cell trait and sickle cell
disease. Despite the high prevalence of sickle cell trait, few people are aware of its causes and
effects. According to a study in St. Louis, approximately 30% of the African American women
surveyed were unaware of the existence of the disease, and of those who were aware, only 9.3%
understood how it was passed from parent to child.ii Federal law requires that all newborn children
are screened for the trait and the disease at birth, but because many do not understand the
implications of the trait, few parents share this information with their children.

To reduce the disparities in sickle cell disease care, the American Society of Pediatric Hematology
asserts that community members should play a key role in advocacy, service, and education.iii
Communities in Arkansas have the responsibility and opportunity to improve care for sickle cell
patients and better educate the public about the risks of inheriting sickle cell disease.

RACIAL AND ETHNIC HEALTH DISPARITIES IN SICKLE CELL DISEASE

Because sickle cell disease is most prevalent in minority populations, the treatment, or lack of
treatment, often highlights the racial and ethnic health disparities that exist across the country. A
study from the American Journal of Preventive Medicine reported that parents of children with
sickle cell disease often face more barriers to quality treatment than parents of children with other
ailments, including long waits in both inpatient and outpatient settings and difficulty scheduling
appointments. Although timely treatment can often minimize the need for extensive treatment,
these inefficiencies and barriers to care often intensify the problems that the patients are facing.iv


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                             AMHC Sickle Cell Outreach Initiative Grant – Request for Applications

Additionally, because most children with sickle cell disease are in low-income families, issues
including limited access to quality health care, substandard housing, lower-quality daycare centers
and schools, and neighborhood crime may complicate the consistency and quality of their care.
Comprehensive Sickle Cell treatment centers exist across the country, but the majority of people
with the disease do not have access to these centers, including patients in Arkansas.

Compared to other genetic diseases, research and treatment for sickle cell disease appears to be
extremely underfunded. Although approximately 90,000 people have sickle cell disease and only
30,000 suffer from Cystic Fibrosis, eight times more money is spent for Cystic Fibrosis research
and family support than is spent on sickle cell disease.

Many researchers and national experts have concluded that racial bias may affect the treatment and
care for sickle cell patients. Experiencing injustice and discrimination can affect the quality of life
for sickle cell patients, including increased chronic pain, stress, and disability.v Although scientific
advances have been made regarding sickle cell treatment during the last 30 years, these advances
have not been equitably dispersed to at risk populations. This is evidenced by the continuing
disparities in the quality of care and the mortality rates across the country.

EPIDEMIOLOGY OF SICKLE CELL DISEASE

Recent studies estimate that there
are up to 1,266 Arkansans living
with sickle cell disease and
between72,000 and 98,000 people
across the country. The map to the
right illustrates the total number of
infants that have been born with
sickle cell disease in each county
since 1988.

According to estimates from the
Grady Comprehensive Sickle Cell
Center, between 600 and 700 babies
are born in Arkansas each year with
sickle cell trait. This represents a
significant public health issue
because when these individuals
reach child-bearing age, there is a 1
in 4 chance with each pregnancy
that they will have a child born with
sickle cell disease, if their partner
also has sickle cell trait.




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                            AMHC Sickle Cell Outreach Initiative Grant – Request for Applications

Contrary to popular belief, sickle cell disease impacts people from all races and ethnicities.
However, the prevalence rate is highest among African Americans—approximately 1 in 400 has the
disease, compared with 1 in 19,000 Latinos.vi

COST OF SICKLE CELL DISEASE IN ARKANSAS

Nationally, there are over 75,000 sickle cell-related hospitalizations each year, costing more than
$475 million. Because almost 75% of the patients receive government sponsored health care, most
of these costs are publically funded. Nationally, 52.5% of sickle cell patients are Medicaid
recipients, although only 19.5% of the general population is enrolled in Medicaid. 20.4% are on
Medicare, and 19.9% have private insurance.vii Nearly 45% of patients live in areas with a median
income of less than $36,000.

Although sickle cell has long been considered a childhood disease, according to hospital discharge
records, the majority of the money spent on sickle cell disease is spent on adult care. In 2007, 84%
of all sickle cell patients who visited emergency departments across the country were age 18 or
older. In Arkansas in 2008, 81% of total sickle cell hospital discharges were adults. Adult hospital
stays are also typically much more expensive than children’s stays. The mean hospital charge per
visit per child is $9,209. The mean charge is $13,577 for adults age 18-44 and $15,400 for adults
age 45-64.

According to the Arkansas Foundation for Medical Care, in 2008, $3,732,834 was spent among
sickle cell patients. Approximately 45.20% of sickle cell patients who had emergency room visits
or hospitalizations had three or more of these visits or stays. The Journal of the American Medical
Association reports that the average number of annual hospital encounters for these patients is
2.59—1.52 hospitalizations and 1.08 treat-and-release visits to the emergency department.viii Adults
age 18 to 30 have the highest number of hospital encounters, and those with public insurance have
3.61 visits or hospitalizations per year compared to 3.22 for those with private insurance. 18- to 30-
year-olds also have the highest re-hospitalization rate; 41% of them return to the hospital within 30
days. In general, re-hospitalization rates are highest for publicly insured patients.

Lack of education, awareness, and ability to comply with the latest standards of care for sickle cell
disease contribute to both the fiscal and human costs. Even when these guidelines are made
available, providers, patients, parents, and families are not always able to comply with the
recommendations. A study of infants enrolled in Medicaid with sickle cell disease found that at
least 60% did not receive the recommended daily doses of penicillin.ix Adherence or non-adherence
to lifestyle and treatment guidelines may correlate with the patient’s social and economic well-
being, security or other factors. Unfortunately, failure to follow national standards significantly
increases the likelihood of developing additional related conditions, including problems with
cognitive functioning, hearing, and vision. These problems then perpetuate the cost to the family
and ultimately to the entire community.




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                            AMHC Sickle Cell Outreach Initiative Grant – Request for Applications



B. ARKANSAS MINORITY HEALTH COMMISSION’S SICKLE CELL
   OUTREACH INITIATIVE

The Arkansas Minority Health Commission was established in 1991 to ensure that all Arkansans
have equal access to quality health care regardless of race or ethnicity and to eliminate racial and
ethnic health disparities in Arkansas.

Through the Tobacco Settlement Proceeds Act (Arkansas Code Annotated §19-12-101 et seq) the
Arkansas Minority Health Commission is charged with the administration of the Minority Health
Initiative in order to ensure minority health issues are appropriately addressed. The Commission
accomplishes this goal by increasing awareness and providing screenings or access to screenings
for hypertension, strokes, and other disorders disproportionately critical to racial and ethnic
minority groups in Arkansas and supporting the development of intervention strategies.

In FY2008, the AMHC, through a strategic planning process, performed an analysis of health
problems that disproportionately affect minorities. In that process, it was identified that while there
was increased incidence, prevalence, and mortality from sickle cell in minority communities, there
was not clear investment in primary prevention reaching grassroots populations in Arkansas.
Therefore, AMHC chose sickle cell trait and disease as a key focus and developed multiple
activities to address sickle cell in Arkansas.

In FY2009, the Arkansas Minority Health Commission partnered with the Minority Health
Consortium in educating legislators regarding the need for sickle cell education and awareness in
Arkansas. AMHC was one of several supporters of legislation to create a taskforce in Arkansas that
would focus on adult sickle cell care in the state. The Arkansas Legislative Task Force on Sickle
Cell Disease was created through Act 1191 during the 87th General Assembly of 2009. The
taskforce, by law, will expire on October 1, 2010. AMHC’s Executive Director and one AMHC
Commissioner are members on the Arkansas Legislative Task Force on Sickle Cell Disease,
playing a critical role to improve care of this disease in the State of Arkansas.

In FY2010, AMHC established a pilot project with Sickle Cell Support Services to provide sickle
cell disease education through community education workshops, provide patient education to
hospitalized patients which included 150-kits for patients; co-facilitate 4 blood drives; host a sickle
cell camp for 30 sickle cell youth consumers and provide sickle cell education literature broadly.

In FY2011, AMHC is expanding its outreach to grassroots community-, faith-based and
public/private nonprofit organizations to increase education/awareness, screenings, access to
support services for patients and families and support groups focused on sickle cell disease
prevention through this grant application process. In addition, during the month of September 2010
(National Sickle Cell Awareness Month), AMHC has partnered with the UAMS Partners for
Inclusive Communities, Sickle Cell Support Services, and the Arkansas Legislative Taskforce on



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                            AMHC Sickle Cell Outreach Initiative Grant – Request for Applications

Sickle Cell Disease to increase public education and awareness through an extensive television and
radio media campaign entitled Face Sickle Cell.

C. ELIGIBILITY

To be eligible, an organization must meet the following criteria:

    1. Be an Arkansas public or private non-profit agency. Applicants claiming private, non-
       profit status must include with the submission of their application:

            a. Current Certification from the state of Arkansas, Office of Secretary of State AND

            b. A letter from the US Department of the Treasury, Internal Revenue Service
               classifying the applicant administrative organization as a private, non-profit
               corporation.

                     i. Applicants ‘in process’ of gaining either a. or b. are NOT eligible

    2. Applicants or their principals must not be presently debarred, suspended, proposed for
       debarment, declared ineligible or voluntarily excluded from participation in any State or
       Federal assistance or grant programs. Applicants must be in good standing with the IRS,
       AMHC and other state agencies’ granting programs.

    3. Applicants must submit and have passed their most recent external fiscal audit and must
       have been audited within the past twelve months.

    4. Applicants must meet all eligibility conditions on the date proposals are due and must
       continue to meet these conditions throughout the selection and funding process. Grantors
       (AMHC) expressly reserve the right to review and analyze the documentation submitted
       and to request additional documentation to determine the applicant’s eligibility to compete
       for the contract award.

    5. Applicants must have policies and procedures to assure that no person in the State of
       Arkansas will, on the grounds of race, color, national origin, gender, sexual orientation,
       age, handicap or disability, medical condition or religion be excluded from employment
       with or participation in, be denied the benefit of, or otherwise subjected to discrimination
       under any program or activity performed as a result of a contract entered into pursuant to
       this RFA.

    6. Private non-profit organizations which apply must have a Board of Directors.

    7. Applicants must focus their program in regions that are most heavily affected by sickle cell
       disease, including but not limited to Crittenden, Jefferson, Mississippi, or Pulaski County.

The AMHC reserve the right to negotiate project elements as deemed necessary to meet program
goals.


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                            AMHC Sickle Cell Outreach Initiative Grant – Request for Applications



D. SCOPE OF WORK

There are three program areas, and applicants may apply to a single or multiple program areas.
However, the program description and evaluation plan must clearly delineate which program
area(s) are being included and addressed. The three areas are:

1. Community Education and Awareness—Insufficient community knowledge about sickle cell
   trait and sickle cell disease, including its causes and the effects on individuals, families, and the
   community, contributes to poor outcomes for sickle cell disease patients. Individual, group,
   and/or community-level interventions may be proposed to provide education and increase
   awareness for the general population. This may include testing for sickle cell trait, developing
   educational materials, providing workshops and training, and hosting communitywide events.

2. Support for Families Affected by Sickle Cell—Patients and their families often face unique
   challenges and lack support systems that will enable them to be healthy and make positive
   contributions to their families and areas of employment. Support networks and groups, access
   to resources, genetic counseling and education that empowers patients and families to advocate
   for policies to improve their quality of life may be proposed for this program area.

3. Healthcare Provider Education and Collaboration —Ultimately, improvements in access to
   quality care and support for sickle cell families require long-term commitments from key
   stakeholders, including health care providers, community leaders, public health professionals,
   and patients and families. Organizations that can facilitate coalition-building and the
   coordination of resources are eligible to apply for this program area.

Each application should define and address challenges related to awareness, access to care,
coordination of resources among targeted populations. Each application must also reflect a focus on
racial and ethnic health disparities, new or innovative and effective methods to reach target
populations, cultural competency in serving target population, and/or strategic planning for creation
of sustainable programs.



E. APPLICATION & AWARD

1. The application, budget spreadsheet, and additional documents to assist with the application
   process can be found at: www.arminorityhealth.com

2. All grant awards are contingent upon funds available to the Arkansas Minority Health
   Commission, Outreach Initiative Grants Program, as certified to the Commission by the
   Arkansas Department of Finance and Administration and approval by the Arkansas Legislative
   Council.



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                           AMHC Sickle Cell Outreach Initiative Grant – Request for Applications

3. The total amount to be awarded through this request for applications shall not exceed $100,000.
   The total amount awarded to any one grantee shall not exceed $25,000.

4. Awards shall be based on the proposed budget and review committee recommendations.
   However, lesser amounts may be awarded than those requested in the application.

5. Applicants must be in good standing on any existing federal and/or state awards.

6. Applicants must complete and submit all documents required under the application guidelines
   by the deadline to be considered for a grant.

7. Award period will run July 1, 2011 through June 30, 2012.

8. Grants will be funded based on actual costs of reimbursable expenses. Specifically, the grantee
   incurs and pays expenditures according to the sub-recipient’s approved budget. The grantee
   then requests reimbursement of its expenditures by submitting a Request for
   Reimbursement/Monthly budget form along with documentation supporting the cost requested
   (receipts, canceled checks, etc).
            a. All state funds must be accounted for with receipts and/or other supporting
                documents. In addition, all services performed and expenses paid must be within
                the scope and purpose of the grant.
            b. You may request advance funds with justification that will be limited to 10-
                20% of the award amount. If advance funds are approved by AMHC, all state
                funds must be accounted for with receipts and/or other supporting documents. In
                addition, all services performed and expenses paid must be within the scope and
                purpose of the grant. Cost base reimbursement will begin once the grantee has
                spent 90% of the advance funds and demonstrated complete financial
                accountability. The grantee will still be expected to submit your
                Reimbursement/Monthly budget form and supporting documents demonstrating
                funds spent.

9. Applicants who receive a grant award will be required to attend an Evaluation Workshop to
   coordinate the evaluation process with the regulatory needs and requirements of the AMHC
   Outreach Initiative Grants Program.
          a. The workshop will also enable grantees to discuss and assess any development and
               technical assistance needed to support their efforts.
          b. During this time, each Grantee will be assigned a Program Manager/Advisor, who
               will serve as a primary contact and grant monitor throughout the duration of the
               grant period.

10. The successful applicant must willingly comply with monthly, bimonthly, and grant-end
    reporting requirements. AMHC will supply the forms to be used for all reporting; all required
    reports must be submitted by the stated due date on the forms supplied by our office.




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                           AMHC Sickle Cell Outreach Initiative Grant – Request for Applications



F. EVALUATION & SCORING

Following the AMHC administrative review of applicant materials for eligibility and compliance
with proposal requirements, an independent panel will review and score each proposal. The
completed proposal packets are the only items provided to the reviewers. The panel of independent
reviewers will include community representatives and medical and public health professionals with
expertise in minority health and sickle cell disease. The independent review team will make
recommendations for awards to the Commission after reviewing all eligible grant proposals. The
Arkansas Minority Health Commission will determine final grant awards.

Applicants who propose new initiatives to address unmet needs and prevent sickle cell disease
within racial and ethnic minority populations in Arkansas will be favorably scored. Proposals will
also be evaluated for their strengths in the following areas:

1. Applicant Background (20%)
       Relevant mission, experience, expertise, diversity

2. Program Design and Feasibility (30%)
       Clear, appropriate, innovative, holistic, culturally specific

3. Evaluation (20%)
       Proven methods for monitoring, feedback, measurable results, accountability

4. Coordination/ Collaboration (15%)
       Effective teamwork, community partnerships, cross-disciplinary approach, etc

5. Budget Appropriateness (15%)
       Realistic, reasonable, efficient, and appropriate




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                            AMHC Sickle Cell Outreach Initiative Grant – Request for Applications



G. DEADLINE

The deadline to apply for the Sickle Cell Outreach Initiative Grant is April 15, 2011 by 5 pm CST.
Exceptions or extensions will not be granted.

Applicants are required to submit TWO copies of their application and budget spreadsheet.

    a) Email one scanned electronic copy (with signature) to Silvia Fernandez at
       Silvia.Fernandez@Arkansas.gov



    b) Mail the original paper copy with signatures in blue ink to:

        Silvia Fernandez
        Sickle Cell Outreach Initiative Grant
        Arkansas Minority Health Commission
        1123 S. University Avenue, Suite 312
        Little Rock, AR 72204

Non-profit organizations must also submit a Current Certification from the state of Arkansas,
Office of Secretary of State AND a letter from the US Department of the Treasury, Internal
Revenue Service classifying the applicant administrative organization as a private, non-profit
corporation.

The electronic copy will not substitute for the original copy signed in blue ink. Both electronic and
paper copy must be received by April 15, 2011 by 5pm CST.

Late applications and incomplete applications will not be accepted.

                    Event                                                 Date
                RFA Issued                                            March 1, 2011
         Due Date for Letter of Intent                                March 22, 2011
        Due Date/Time of Applications                                 April 15, 2011
            Award Notice Posting                                      May 25, 2011
               Contract Start                                          July 1, 2011




H. CONTACT INFORMATION

Questions will only be received and answered via email (silvia.fernandez@Arkansas.gov ). All
questions and answers will be posted to the website weekly at: www.arminorityhealth.com


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                               AMHC Sickle Cell Outreach Initiative Grant – Request for Applications



i
   Hassell, K.L. (2010). Population estimates of sickle cell disease in the U.S. American Journal of Preventive
Medicine. 38 (4S), S512-S521.
ii
    Boyd, J.H., Watkins, A.R., Price, C.L, Fleming, F., & DeBaun, M.R. (2005). Inadequate community
knowledge about sickle cell disease among African-American women. Journal of the National Medical
Association, 91 (1), 62-27.
iii
    Hassell K., Pace B., Wang W., Kulkarni R., Luban N., Johnson C.S., Eckman J., Lane P., Woods W.G.
(2009). Sickle cell disease summit: from clinical and research disparity to action. American Journal of
Hematology; 84 (1): 39-45
iv
    Boulet, S.L., Yanni, E.A, Creary, M.S., & Olney, R.S. (2010). Health status and healthcare use in a national
sample of children with sickle cell disease. American Journal of Preventive Medicine, 38 (4, Supplement),
S528-S535.
v
    Zempsky, W.T. (2009). Treatment of sickle cell pain: Fostering trust and justice. Journal of the American
Medical Association, 302 (22), 2479-2480. DOI: 10.1001/jama.2009.2811
vi
    Smith, L.A., Oyeku, S.O., Homer, C. & Zuckerman, B. (2006). Sickle cell disease: A question of equity and
quality. Pediatrics, 177: 1763-1770. DOI: 10.1542/peds.2005-1611
vii
     Smith, W. (2010 June 2). Arkansas’s Best Options for Creating an Adult Sickle Cell Disease Clinical
Program: Preliminary Findings [Power Point]. Sickle Cell Task Force. Arkansas State Capitol, Little Rock,
Arkansas.
viii
     Brousseau, D.C., Owens, P.L., Mosso, A.L., Panepinto, J.A., & Steiner, C.A. (2010). Acute care utilization
and rehospitalizations for sickle cell disease. Journal of the American Medical Association. 303(13):1288-
1294
ix
    Warren, M.D., Arbogast, P.G., Dudley, J.A., Kaltenbach, L., Ray, W.A., Wang, W.C., & Cooper, W.O.
(2010).Adherence to prophylactic antibiotic guidelines among Medicaid infants with sickle cell disease.
Archives of Pediatric and Adolescent Medicine. 164 (3), 298-299.




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