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