87R18691 BPG-D     By: J. Johnson of Harris H.C.R. No. 86       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.