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.