Sickle cell disease is a rare and complex genetic disorder. Nationwide, care costs are in the billions. In Florida alone, the cost of care totaled $600 million, with a staggering 80% being spent on institutional care (ER and inpatient facilities).
The high cost of care is due to a lack of affordable, community-based early treatment options and low adherence to therapy. There are also long-term implications, children who do not receive the services they need are at greater risk of dying from stroke and invasive pneumococcal infections or suffering from cognitive impairment.
The economic costs of the lack of good care weigh heavily on the US economy on healthcare, education, the workforce and other fronts. Despite universal newborn screening for SCD in the United States, a 2016 study by Chaturvedi and DeBaun found that 30.8% of children did not have long-term follow-up after diagnosis.
Today, mortality rates for adults with SCD have increased by 26% and counting. Adolescents and young adults between the ages of 15 and 26 face a seven-fold increase in deaths. Florida has the highest number of infants born with SCD in the nation.
What is needed?
- Equal access to treatment: SCD is associated with high treatment costs. The total lifetime health care costs for an average person with SCD reaching age 45 has been estimated at nearly $1 million. The annual cost is more than $10,000 for children and more than $30,000 for adults. Life-saving treatment options are available but expensive. However, not treating it is more expensive. A research study by Wang et al. from 2013 found that the total health care costs for children using hydroxyurea, an FDA-approved drug for SCD, was $1.8 million, compared to $2.5 million for those who did not receive this treatment. Many patients with SCD are on the low-income spectrum and have Medicaid or Medicaid-Medicare. More than 75% of adults with SCD with frequent pain crises are not receiving FDA-approved therapies and drugs such as Adakevo, Oxbryta, and Endari.
- Services: People living with SCD need a central center that provides comprehensive care and liaison services such as insurance counseling, pharmacy support, financial assistance, coping skills development and other supportive services and referrals.
- Community: Advocating for the rights of SCD patients and engaging in outreach activities to raise awareness of SCD and related conditions.
- Research: Curative therapies such as gene therapy are on the horizon, and patients and families need unhindered access to these emerging therapies.
- Professional health education: Training of healthcare professionals in multidisciplinary management of SCD and other professional development programs.
- Public health education: Promoting public awareness and education to break down stigma and other barriers to SCD treatment.
dr Based in Hollywood, Florida, Lanetta Bronté-Hall is responsible for the strategic planning, scientific and administrative oversight of the Foundation for Sickle Cell Disease Research (FSCDR), headquartered in Hollywood, Florida. She is a leading national and international researcher and public health scientist in the field of sickle cell disease, rare blood disorders, community-based participatory research and chronic disease management.
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