| |
|
|
HOUSE CONCURRENT RESOLUTION
|
| |
|
|
WHEREAS, Sickle cell disease is the most common inherited |
|
|
hemoglobin disorder, but despite its high mortality rates and |
|
|
severe economic impact, the need for effective therapies remains |
|
|
unmet; and |
|
|
WHEREAS, The U.S. Centers for Disease Control and Prevention |
|
|
estimates that sickle cell disease affects approximately 100,000 |
|
|
Americans, occurring among about 1 in every 365 African American |
|
|
births and 1 out of every 16,300 Hispanic American births; and |
|
|
WHEREAS, Sickle cell disease can affect any organ, including |
|
|
the kidneys, lungs, and spleen; vaso-occlusive crises are common |
|
|
among patients, causing recurrent episodes of acute pain and |
|
|
leading to irreversible end-organ damage, poor quality of life, and |
|
|
stroke; the life expectancy among sufferers is reduced, tragically, |
|
|
by some 25 to 30 years; and |
|
|
WHEREAS, According to a 2018 study, sickle cell disease |
|
|
imposes a nearly $3 billion economic burden on the U.S. healthcare |
|
|
system each year, of which 57 percent is attributed to hospital |
|
|
inpatient costs; more than 70 percent of patients are insured under |
|
|
state Medicaid programs; and |
|
|
WHEREAS, The sickle cell disease patient community has long |
|
|
been medically underserved; in 1972, then-president Richard Nixon |
|
|
signed the Sickle Cell Anemia Control Act and pledged to end neglect |
|
|
of the disease, but today, patients still encounter social, |
|
|
economic, cultural, and geographic barriers to quality care, |
|
|
including inconsistent treatments, high reliance on emergency care |
|
|
and public health programs, limited participation in clinical |
|
|
trials, and lack of access to the limited number of medical |
|
|
providers with appropriate knowledge and experience; and |
|
|
WHEREAS, With rapid advancement in such technologies as gene |
|
|
editing, sickle cell disease stakeholders are working diligently to |
|
|
expand availability of the transformative therapies that are |
|
|
currently building clinical momentum; in 2018, the National |
|
|
Institutes of Health launched the National Heart, Lung, and Blood |
|
|
Institute Cure Sickle Cell Initiative to accelerate the development |
|
|
of therapies to cure the disease; at the end of the following year, |
|
|
the 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 |
|
|
WHEREAS, The costs of sickle cell disease are enormous in |
|
|
both human and economic terms, but medical science provides hope of |
|
|
a long-awaited cure; now, therefore, be it |
|
|
RESOLVED, That the 87th Legislature of the State of Texas |
|
|
hereby express support for equitable access to transformative |
|
|
therapies for sickle cell disease. |
|
|
|
|
|
* * * * * |