Sickle Cell Disease: Understanding Its Impact on Florida Infants

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Dr. Lanetta Bronté-Hall

Sickle cell disease is a rare and complex genetic disease. The cost of care nationwide is in the billions. In Florida alone, the cost of care was $600 million, 80% of which was spent on institutionalized care (emergency department and hospitalization).

The high cost of care stems from the lack of low-cost, community-based early treatment options and low adherence to treatment. There are also long-term effects, children who do not receive the necessary services are at greater risk of death or cognitive impairment due to stroke and invasive pneumococcal infections.

The economic cost of the lack of good care imposes a heavy burden on the United States economy on health care, education, labor and other fronts. Despite universal newborn screenings for SCD in the United States, a 2016 study by Chaturvedi and DeBaun found that long-term follow-up after diagnosis was not performed in 30.8% of children.

Sickle cell disease is an inherited form of anemia in which red blood cells become stiff, sticky and don't carry enough oxygen around the body.

Today, mortality rates for adults with SCD are up 26% and increasing. Teenagers and young adults aged 15 to 26 are facing a sevenfold increase in the number of deaths. Florida has the highest number of infants born with SCD nationwide.

What’s needed?

  • Equitable access to treatment: Sickle cell disease is associated with high treatment costs. Total lifetime health care costs have been estimated at nearly $1 million for the average person with sickle cell disease reaching age 45. Annual costs are over $10,000 for children and over $30,000 for adults. Life-saving treatment options are available but expensive. However, not receiving treatment costs more. A 2013 research study by Wang et al found that overall health care costs for children on hydroxyurea, an FDA-approved drug for SCD, were $1.8 million, compared to $2.5 million. millions of dollars for those who did not receive this treatment. Many SCD patients are on the low-income spectrum and receive Medicaid or Medicaid-Medicare. More than 75% of adults with SCD with frequent pain attacks fail to get FDA-approved therapies and medications such as Adakevo, Oxbryta, and Endari.
  • Services: People with SCD need a one-stop center that provides comprehensive care and liaison services such as insurance advice, pharmaceutical assistance, financial assistance, coping skills development and other support and referral services.
  • Community: Advocate for the rights of patients with sickle cell disease and engage in community outreach efforts to raise awareness of sickle cell disease and related conditions.
  • To research: Curative therapies such as gene therapy are on the horizon, and patients and families need unfettered access to these promising therapies.
  • Professional training in health: Training of healthcare professionals for multidisciplinary SCD treatment and other professional development programs.
  • Public health education: Promote public awareness and education to reduce stigma and other barriers to sickle cell treatment.
Dr. Lanetta Bronté-Hall

Dr. Lanetta Bronté-Hall, based in Hollywood, Florida, is responsible for the strategic planning, scientific and administrative oversight of the Foundation for Sickle Cell Research (FSCDR) headquartered in Hollywood, Florida. She is a leading national and international researcher and population health scientist in the field of sickle cell disease, rare blood disorders, community-based participatory research, and chronic disease management.

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