ENROLLED
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
A CONCURRENT RESOL UTION
To express the support of the Legislature of Louisiana for equitable access to transformative
therapies for sickle cell disease.
WHEREAS, sickle cell disease is the most common inherited hemoglobin disorder,
but despite its high mortality rates and severe economic impact, needs for effective therapies
for the disease remain unmet; and
WHEREAS, the United States Centers for Disease Control and Prevention estimates
that sickle cell disease affects roughly one hundred thousand Americans; and
WHEREAS, the disease occurs in approximately one out of every three hundred
sixty-five African American births and one out of every sixteen thousand three hundred
Hispanic American births; and
WHEREAS, sickle cell disease can affect any organ and has particularly harmful
effects on the kidneys, lungs, and spleen; vaso-occlusive crises are common among patients,
causing recurrent episodes of acute pain and leading to irreversible organ damage, poor
quality of life, and stroke; and
WHEREAS, on average, life expectancy among persons who suffer from the disease,
tragically, is twenty-five to thirty years less than among those who do not have the disease;
and
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WHEREAS, according to a 2018 study, sickle cell disease imposes a nearly three
billion dollar economic burden on the U.S. healthcare system annually, of which fifty-seven
percent is attributed to hospital inpatient costs; and
WHEREAS, the sickle cell disease patient community has long been medically
underserved; in 1972, former president Richard Nixon signed the National Sickle Cell
Anemia Control Act (Public Law 92-294) and pledged to end neglect of the disease, yet
patients still encounter social, economic, cultural, and geographic barriers to quality care
today; and
WHEREAS, recognizing the need for dramatic improvements in services and care
coordination for sickle cell patients in this state, the legislature passed House Bill No. 260
of the 2015 Regular Session, authored by the late Alfred C. Williams, former state
representative for House District 61, and several coauthors; and
WHEREAS, enacted as Act No. 387 of the 2015 Regular Session, this legislation
established Louisiana's Sickle Cell Patient Navigator Program; however, while innovative
and tremendously promising for sickle cell patients and their families and communities, this
program has remained unfunded since its enactment seven years ago; and
WHEREAS, many sickle cell patients receive inconsistent treatments, rely
disproportionately on emergency care and public health programs, are unable to participate
in clinical trials, and lack access to the limited number of medical providers with the
knowledge and experience necessary to provide the highest-quality care; and
WHEREAS, with rapid advancements in technologies such as gene editing, sickle
cell disease stakeholders are working diligently to expand availability of the transformative
therapies that are currently building clinical momentum; and
WHEREAS, in 2018, the National Institutes of Health launched the Cure Sickle Cell
Initiative to accelerate the development of therapies to cure the disease; at the end of the
following year, the United States Food and Drug Administration granted accelerated
approval for a new treatment, and it has granted orphan drug designation to sickle cell
disease therapies in order to encourage scientific innovation; and
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WHEREAS, the costs of sickle cell disease are enormous in both human and
economic terms, but medical science provides hope for a long-awaited cure.
THEREFORE, BE IT RESOLVED that the Legislature of Louisiana does hereby
express its support for equitable access to transformative therapies for sickle cell disease.
BE IT FURTHER RESOLVED that a copy of this Resolution be transmitted to the
chairman of the Louisiana Sickle Cell Commission.
SPEAKER OF THE HOUSE OF REPRESENTATIVES
PRESIDENT OF THE SENATE
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