HLS 22RS-2138 ENGROSSED
2022 Regular Session
HOUSE CONCURRENT RESOL UTION NO. 76
BY REPRESENTATIVES PHELPS, ADAMS, BOYD, BRASS, BROWN, BRYANT,
CARPENTER, ROBBY CARTER, WILFORD CARTER, CORMIER, COX,
DUPLESSIS, FISHER, FREEMAN, GAINES, GLOVER, GREEN, HUGHES,
JEFFERSON, JENKINS, TRAVIS JOHNSON, JORDAN, LACOMBE, LAFLEUR,
LANDRY, LARVADAIN, LYONS, MARCELLE, DUSTIN MILLER, MOORE,
NEWELL, PIERRE, SELDERS, AND WILLARD AND SENATORS BARROW,
BOUDREAUX, BOUIE, CARTER, FIELDS, HARRIS, JACKSON, LUNEAU,
PRICE, SMITH, AND TARVER
HEALTH/SICKLE CELL ANEM: Expresses support for equitable access to transformative
therapies for sickle cell disease
1 A CONCURRENT RESOL UTION
2To express the support of the Legislature of Louisiana for equitable access to transformative
3 therapies for sickle cell disease.
4 WHEREAS, sickle cell disease is the most common inherited hemoglobin disorder,
5but despite its high mortality rates and severe economic impact, needs for effective therapies
6for the disease remain unmet; and
7 WHEREAS, the United States Centers for Disease Control and Prevention estimates
8that sickle cell disease affects roughly one hundred thousand Americans; and
9 WHEREAS, the disease occurs in approximately one out of every three hundred
10sixty-five African American births and one out of every sixteen thousand three hundred
11Hispanic American births; and
12 WHEREAS, sickle cell disease can affect any organ and has particularly harmful
13effects on the kidneys, lungs, and spleen; vaso-occlusive crises are common among patients,
14causing recurrent episodes of acute pain and leading to irreversible organ damage, poor
15quality of life, and stroke; and
16 WHEREAS, on average, life expectancy among persons who suffer from the disease,
17tragically, is twenty-five to thirty years less than among those who do not have the disease;
18and
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HCR NO. 76
1 WHEREAS, according to a 2018 study, sickle cell disease imposes a nearly three
2billion dollar economic burden on the U.S. healthcare system annually, of which fifty-seven
3percent is attributed to hospital inpatient costs; and
4 WHEREAS, the sickle cell disease patient community has long been medically
5underserved; in 1972, former president Richard Nixon signed the National Sickle Cell
6Anemia Control Act (Public Law 92-294) and pledged to end neglect of the disease, yet
7patients still encounter social, economic, cultural, and geographic barriers to quality care
8today; and
9 WHEREAS, recognizing the need for dramatic improvements in services and care
10coordination for sickle cell patients in this state, the legislature passed House Bill No. 260
11of the 2015 Regular Session, authored by the late Alfred C. Williams, former state
12representative for House District 61, and several coauthors; and
13 WHEREAS, enacted as Act No. 387 of the 2015 Regular Session, this legislation
14established Louisiana's Sickle Cell Patient Navigator Program; however, while innovative
15and tremendously promising for sickle cell patients and their families and communities, this
16program has remained unfunded since its enactment seven years ago; and
17 WHEREAS, many sickle cell patients receive inconsistent treatments, rely
18disproportionately on emergency care and public health programs, are unable to participate
19in clinical trials, and lack access to the limited number of medical providers with the
20knowledge and experience necessary to provide the highest-quality care; and
21 WHEREAS, with rapid advancements in technologies such as gene editing, sickle
22cell disease stakeholders are working diligently to expand availability of the transformative
23therapies that are currently building clinical momentum; and
24 WHEREAS, in 2018, the National Institutes of Health launched the Cure Sickle Cell
25Initiative to accelerate the development of therapies to cure the disease; at the end of the
26following year, the United States Food and Drug Administration granted accelerated
27approval for a new treatment, and it has granted orphan drug designation to sickle cell
28disease therapies in order to encourage scientific innovation; and
29 WHEREAS, the costs of sickle cell disease are enormous in both human and
30economic terms, but medical science provides hope for a long-awaited cure.
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HCR NO. 76
1 THEREFORE, BE IT RESOLVED that the Legislature of Louisiana does hereby
2express its support for equitable access to transformative therapies for sickle cell disease.
3 BE IT FURTHER RESOLVED that a copy of this Resolution be transmitted to the
4chairman of the Louisiana Sickle Cell Commission.
DIGEST
The digest printed below was prepared by House Legislative Services. It constitutes no part
of the legislative instrument. The keyword, one-liner, abstract, and digest do not constitute
part of the law or proof or indicia of legislative intent. [R.S. 1:13(B) and 24:177(E)]
HCR 76 Engrossed 2022 Regular Session Phelps
Expresses the support of the legislature for equitable access to transformative therapies for
sickle cell disease.
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