SENATE BILL 24-042
BY SENATOR(S) Buckner and Fields, Coleman, Exum, Bridges, Cutter,
Ginal, Gonzales, Hinrichsen, Kolker, Marchman, Mullica, Priola, Roberts,
Rodriguez, Winter F., Zenzinger;
also REPRESENTATIVE(S) English and Bacon, Herod, Amabile, Bird,
Boesenecker, Brown, deGruy Kennedy, Duran, Epps, Froelich, Hamrick,
Hernandez, Jodeh, Joseph, Kipp, Lieder, Lindsay, Lukens, Mabrey, Marvin,
McCormick, Ortiz, Ricks, Rutinel, Sirota, Story, Valdez, Vigil, Weissman,
Willford, Woodrow, Young, McCluskie.
C
ONCERNING THE CREATION OF THE ARIE P. TAYLOR SICKLE CELL DISEASE
OUTREACH PROGRAM TO PROVIDE SUPPORT TO INDIVIDUALS LIVING
WITH SICKLE CELL DISEASE
, AND, IN CONNECTION THEREWITH ,
MAKING AN APPROPRIATION.
Be it enacted by the General Assembly of the State of Colorado:
SECTION 1. In Colorado Revised Statutes, add 25-1.5-121 as
follows:
25-1.5-121. Arie P. Taylor sickle cell disease outreach program
- contracts - administration - report - legislative declaration -
definitions - repeal. (1) T
HE GENERAL ASSEMBLY FINDS AND DECLARES
NOTE: This bill has been prepared for the signatures of the appropriate legislative
officers and the Governor. To determine whether the Governor has signed the bill
or taken other action on it, please consult the legislative status sheet, the legislative
history, or the Session Laws.
________
Capital letters or bold & italic numbers indicate new material added to existing law; dashes
through words or numbers indicate deletions from existing law and such material is not part of
the act. THAT:
(a) S
ICKLE-CELL ANEMIA IS A GENETIC DISORDER OF THE
HEMOGLOBIN IN RED BLOOD CELLS THAT CAUSES RED BLOOD CELLS THAT
CARRY OXYGEN TO STICK TOGETHER AFTER THE OXYGEN IS RELEASED
,
CAUSING BLOCKAGES IN THE SMALL BLOOD VESSELS ;
(b) T
HE MAIN SYMPTOMS OF SICKLE-CELL ANEMIA ARE ANEMIA AND
EPISODES OF SEVERE PAIN CAUSED BY THE BLOCKAGES IN THE SMALL BLOOD
VESSELS
; OVER TIME, PEOPLE WITH SICKLE-CELL ANEMIA ARE INCREASINGLY
AT RISK OF OTHER HEALTH COMPLICATIONS
, AND THE DISORDER DAMAGES
THEIR ORGANS
;
(c) A
CCORDING TO THE 2022-23 "COLORADO SICKLE CELL STATE
ACTION PLAN" PREPARED BY THE COLORADO SICKLE CELL TREATMENT AND
RESEARCH CENTER AT THE UNIVERSITY OF
COLORADO SCHOOL OF MEDICINE,
APPROXIMATELY FOUR HUNDRED FIFTY PEOPLE IN COLORADO ARE LIVING
WITH SICKLE
-CELL ANEMIA, ALTHOUGH THIS NUMBER LIKELY UNDERCOUNTS
THE POPULATION LIVING WITH SICKLE CELL DISEASE
;
(d) D
UE TO THE EFFECTS OF SICKLE CELL DISEASE , INCLUDING
EPISODES OF DEBILITATING PAIN
, MANY INDIVIDUALS LIVING WITH
SICKLE
-CELL ANEMIA AND THEIR FAMILIES NEED SERVICES AND SUPPORT IN
THE COMMUNITY TO MANAGE THEIR HEALTH CONDITION AND DAILY LIVES
;
(e) A
RIE PARKS TAYLOR WAS THE FIRST AFRICAN AMERICAN
WOMAN TO SERVE AS A
WOMEN IN THE AIR FORCE, "WAF", CLASSROOM
INSTRUCTOR AND OFFICER
; TO BE ELECTED TO SERVE IN THE HOUSE OF
REPRESENTATIVES OF THE
COLORADO GENERAL ASSEMBLY ; TO SERVE AS
THE CLERK AND RECORDER FOR THE CITY AND COUNTY OF
DENVER OR ANY
COUNTY IN
COLORADO; AND TO SERVE AS THE CHIEF CLERK OF THE DENVER
ELECTION COMMISSION
;
(f) P
ASSIONATE ABOUT THE CONCERNS OF INDIVIDUALS LIVING WITH
SICKLE
-CELL ANEMIA, DURING HER TIME IN THE GENERAL ASSEMBLY
REPRESENTATIVE
TAYLOR SPONSORED LEGISLATION THAT CREATED THE
SICKLE
-CELL ANEMIA TREATMENT AND RESEARCH CENTER AT THE
UNIVERSITY OF
COLORADO SCHOOL OF MEDICINE, WHICH PROVIDES SUPPORT
AND TREATMENT FOR INDIVIDUALS WITH SICKLE CELL DISEASE AND
CONDUCTS RESEARCH RELATING TO SICKLE CELL DISEASE
; AND
PAGE 2-SENATE BILL 24-042 (g) CREATING AN OUTREACH PROGRAM BY PARTNERING WITH ONE
OR MORE COMMUNITY
-BASED NONPROFIT ORGANIZATIONS TO ENHANCE
SERVICES AND SUPPORT IN THE COMMUNITY FOR INDIVIDUALS WITH SICKLE
CELL DISEASE AND THEIR FAMILIES WILL HELP ENSURE A BETTER QUALITY OF
LIFE FOR THESE
COLORADANS.
(2) A
S USED IN THIS SECTION, UNLESS THE CONTEXT OTHERWISE
REQUIRES
, "OUTREACH PROGRAM" MEANS THE ARIE P. TAYLOR SICKLE CELL
DISEASE OUTREACH PROGRAM CREATED IN SUBSECTION
(3) OF THIS SECTION.
(3) T
HERE IS CREATED IN THE DEPARTMENT THE ARIE P. TAYLOR
SICKLE CELL DISEASE OUTREACH PROGRAM
. THE PURPOSE OF THE OUTREACH
PROGRAM IS TO PROVIDE SERVICES AND SUPPORT IN THE COMMUNITY TO
INDIVIDUALS LIVING WITH SICKLE CELL DISEASE AND THEIR FAMILIES
.
(4) (a) T
HE DEPARTMENT SHALL SOLICIT APPLICATIONS FROM
COMMUNITY
-BASED NONPROFIT ORGANIZATIONS THAT ARE CAPABLE OF
IMPLEMENTING THE OUTREACH PROGRAM
.
(b) (I) O
N OR BEFORE JANUARY 1, 2025, THE DEPARTMENT SHALL
CONTRACT WITH ONE OR MORE COMMUNITY
-BASED NONPROFIT
ORGANIZATIONS TO PROVIDE COMMUNITY
-BASED SERVICES AND SUPPORT TO
INDIVIDUALS LIVING WITH SICKLE CELL DISEASE AND THEIR FAMILIES
.
(II) T
HE GENERAL ASSEMBLY SHALL APPROPRIATE TWO HUNDRED
THOUSAND DOLLARS FOR THE OUTREACH PROGRAM
, WHICH AMOUNT SHALL
INCLUDE ADMINISTRATIVE COSTS NOT TO EXCEED EIGHT PERCENT
.
(c) T
HE DEPARTMENT SHALL DETERMINE THE INITIAL TERM OF A
CONTRACT
, NOT TO EXCEED TWO YEARS, AND SHALL APPROVE THE SERVICES
AND SUPPORT TO BE INCLUDED IN A CONTRACT
.
(d) I
N AWARDING A CONTRACT , THE DEPARTMENT SHALL GIVE
PRIORITY TO A COMMUNITY
-BASED NONPROFIT ORGANIZATION THAT :
(I) H
AS A MINIMUM OF TEN YEARS ' EXPERIENCE IN PROVIDING
SERVICES AND SUPPORT IN
COLORADO TO INDIVIDUALS LIVING WITH SICKLE
CELL DISEASE AND THEIR FAMILIES
, SPECIFICALLY IN THE DENVER
METROPOLITAN AREA OR
COLORADO SPRINGS, WHICH AREAS OF THE STATE
HAVE THE HIGHEST NUMBER OF INDIVIDUALS LIVING WITH SICKLE CELL
PAGE 3-SENATE BILL 24-042 DISEASE IN COLORADO;
(II) H
AS EXPERIENCE PROVIDING THE SERVICES AND SUPPORT
DESCRIBED IN SUBSECTION
(5)(a) OF THIS SECTION; AND
(III) IS ENGAGED IN FUNDRAISING FOR AND RAISING AWARENESS OF
THE NEEDS OF INDIVIDUALS LIVING WITH SICKLE CELL DISEASE AND THEIR
FAMILIES AND MAINTAINS A NETWORK OF PERSONS ABLE TO PROVIDE PEER
ASSISTANCE AND RESOURCES TO THOSE INDIVIDUALS
.
(5) (a) D
EPENDING UPON THE NEEDS TO BE ADDRESSED THROUGH A
CONTRACT
, THE COMMUNITY-BASED SERVICES AND SUPPORT PROVIDED
THROUGH THE OUTREACH PROGRAM MAY INCLUDE THE FOLLOWING
SERVICES AND SUPPORT PROVIDED BY A COMMUNITY
-BASED NONPROFIT
ORGANIZATION OR BY COMMUNITY HEALTH WORKERS OR SOCIAL WORKERS
EMPLOYED BY THE COMMUNITY
-BASED NONPROFIT ORGANIZATION :
(I) C
ULTURALLY APPROPRIATE HEALTH EDUCATION AND
INFORMATION CONCERNING SICKLE CELL DISEASE AND LIVING WITH SICKLE
CELL DISEASE
;
(II) I
NFORMAL COUNSELING AND GUIDANCE ON HEALTH BEHAVIORS ;
(III) D
IRECTION AND SUPPORT TO INDIVIDUALS AND THEIR FAMILIES
IN LOCATING AND ACCESSING SERVICES IN THE COMMUNITY TO ADDRESS
THEIR NEEDS
, INCLUDING NONMEDICAL NEEDS SUCH AS HOUSING , FOOD,
EDUCATION, TRANSPORTATION, EMPLOYMENT, LEGAL SERVICES, AND OTHER
SUPPORT
;
(IV) O
UTREACH TO THE SICKLE CELL DISEASE COMMUNITY
CONCERNING ACTIVITIES AND PROGRAMS AVAILABLE TO INDIVIDUALS LIVING
WITH THE EFFECTS OF SICKLE CELL DISEASE AND THEIR FAMILIES
;
(V) P
EER SUPPORT SERVICES AND REFERRALS FOR INDIVIDUALS AND
FAMILIES LIVING WITH SICKLE CELL DISEASE IN THE LOCAL COMMUNITY
;
(VI) A
DVOCACY REGARDING THE INTERESTS OF THE SICKLE CELL
DISEASE COMMUNITY THROUGH PARTNERSHIPS WITH THE GENERAL PUBLIC
,
STATE AND LOCAL GOVERNMENT ENTITIES , HEALTH-CARE PROVIDERS, AND
OTHER COMMUNITY
-BASED ORGANIZATIONS;
PAGE 4-SENATE BILL 24-042 (VII) REFERRALS FOR SICKLE-CELL ANEMIA SCREENING; AND
(VIII) ANY OTHER SERVICES AND SUPPORT AS DETERMINED BY THE
DEPARTMENT
.
(b) I
N DETERMINING THE SERVICES AND SUPPORT INCLUDED IN A
CONTRACT
, THE DEPARTMENT MAY CONSULT WITH THE SICKLE -CELL ANEMIA
TREATMENT AND RESEARCH CENTER
, CREATED IN SECTION 23-21-203, TO
IDENTIFY THE COMMUNITY
-BASED SERVICES AND SUPPORT THAT IS LIKELY
TO HAVE THE GREATEST IMPACT ON THE INDIVIDUALS AND FAMILIES SERVED
THROUGH THE OUTREACH PROGRAM GI VEN THE AMOUNT AND DURATION OF
THE CONTRACT
.
(6) (a) P
RIOR TO THE EXPIRATION OF A CONTRACT , A
COMMUNITY
-BASED NONPROFIT ORGANIZATION IMPLEMENTING THE
OUTREACH PROGRAM SHALL PREPARE AND SUBMIT A WRI TTEN REPORT TO
THE DEPARTMENT DESCRIBING
:
(I) T
HE TYPE AND AMOUNT OF SERVICES AND SUPPORT PROVIDED TO
THE COMMUNITY PURSUANT TO THE OUTREACH PROGRAM
;
(II) T
HE NUMBER OF INDIVIDUALS AND FAMILIES IMPACTED THR OUGH
THE SERVICES AND SUPPORT
;
(III) T
HE CHARACTERISTICS OF THE INDIVIDUALS RECEIVING
SERVICES AND SUPPORT
, INCLUDING WHETHER THE SERVICES OR SUPPORT
WAS PROVIDED TO ADULTS OR CHILDREN WITH SICKLE CELL DISEASE OR
THEIR FAMILY MEMBERS
, BUT EXCLUDING PERSONALLY IDENTIFYING
INFORMATION REGARDING THE INDIVIDUALS
; AND
(IV) THE LOCATION WHERE THE SERVICES AND SUPPORT WAS
PROVIDED
.
(b) T
HE DEPARTMENT SHALL PROVIDE THE REPORT TO THE HOUSE OF
REPRESENTATIVES HEALTH AND HUMAN SERVICES COMMITTEE AND THE
SENATE HEALTH AND HUMAN SERVICES COMMITTEE
, OR THEIR SUCCESSOR
COMMITTEES
. THE DEPARTMENT MAY INCLUDE WITH THE REPORT
INFORMATION KNOWN TO THE DEPARTMENT CONCERNING THE OUTCOMES OF
THE SERVICES AND SUPPORT PROVIDED
, AS WELL AS OTHER RELEVANT
INFORMATION CONCERNING THE IMPACT OF THE OUTREACH PROGRAM ON
PAGE 5-SENATE BILL 24-042 INDIVIDUALS LIVING WITH SICKLE CELL DISEASE AND THEIR FAMILIES .
(7) T
HIS SECTION IS REPEALED, EFFECTIVE JULY 1, 2030.
SECTION 2. Appropriation. For the 2024-25 state fiscal year,
$200,000 is appropriated to the department of public health and
environment for use by the division of administration and support. This
appropriation is from the general fund and is based on an assumption that
the division will require an additional 0.1 FTE. To implement this act, the
division may use this appropriation for the Arie P. Taylor sickle cell disease
outreach program.
SECTION 3. Safety clause. The general assembly finds,
determines, and declares that this act is necessary for the immediate
preservation of the public peace, health, or safety or for appropriations for
PAGE 6-SENATE BILL 24-042 the support and maintenance of the departments of the state and state
institutions.
____________________________ ____________________________
Steve Fenberg Julie McCluskie
PRESIDENT OF SPEAKER OF THE HOUSE
THE SENATE OF REPRESENTATIVES
____________________________ ____________________________
Cindi L. Markwell Robin Jones
SECRETARY OF CHIEF CLERK OF THE HOUSE
THE SENATE OF REPRESENTATIVES
APPROVED________________________________________
(Date and Time)
_________________________________________
Jared S. Polis
GOVERNOR OF THE STATE OF COLORADO
PAGE 7-SENATE BILL 24-042