Understanding sickle cell disease: Impact of surveillance and gaps in knowledge

Mandip Kaur; Mary Brown; Ted W. Love; Alexis Thompson; Marsha Treadwell; Kim Smith-Whitley

doi:10.1182/bloodadvances.2019001000

Understanding sickle cell disease: Impact of surveillance and gaps in knowledge

Mandip Kaur^*, Mary Brown, Ted W. Love, Alexis Thompson, Marsha Treadwell, Kim Smith-Whitley

^*Corresponding author for this work

Pediatrics

Research output: Contribution to journal › Letter › peer-review

1 Scopus citations

Original language	English (US)
Pages (from-to)	496-498
Number of pages	3
Journal	Blood Advances
Volume	4
Issue number	3
DOIs	https://doi.org/10.1182/bloodadvances.2019001000
State	Published - Feb 11 2020

ASJC Scopus subject areas

Hematology

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10.1182/bloodadvances.2019001000

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@article{b8114af8afcc4075901b0cf2c53c2940,

title = "Understanding sickle cell disease: Impact of surveillance and gaps in knowledge",

author = "Mandip Kaur and Mary Brown and Love, {Ted W.} and Alexis Thompson and Marsha Treadwell and Kim Smith-Whitley",

note = "Funding Information: Although the data from 2 states provides key information to understand health care and outcomes of people with SCD in each state, drawing conclusions about national outcomes requires significantly more information about patients across the country as healthcare systems and patient populations vary by state. The challenges that patients face in 1 state may not necessarily be the same in other states, and as a consequence, recommendations for interventions to improve health outcomes may also be different. As a result, because of the lack of Congressional funding for the CDC{\textquoteright}s sickle cell activities, the SCDC program is funded, almost exclusively, by public-private partnerships through the CDC Foundation.24 Congressional appropriations in the FY20 Federal Budget for CDC to conduct the activities outlined in Public Health Law No. 115-327 would allow for the expansion of SCDC activities to additional states. Resources are needed to establish a national surveillance system to learn the exact number of people with SCD in the United States, to identify health disparities endured by the SCD population, and to provide the evidence needed to improve health outcomes for this condition. Without resources to sustain current activities and expand the SCDC program to additional states, our understanding of how new policies and new treatments affect access to care, health complications, health outcomes, and life expectancy will be eliminated, perpetuating health disparities among those living with SCD. But it is not just the SCD community that would be withheld from benefits: the state and federal governments, through Medicaid and Medicare, will continue to pay for the large majority of the SCD population{\textquoteright}s costly health care.25",

year = "2020",

month = feb,

day = "11",

doi = "10.1182/bloodadvances.2019001000",

language = "English (US)",

volume = "4",

pages = "496--498",

journal = "Blood advances",

issn = "2473-9529",

publisher = "American Society of Hematology",

number = "3",

}

TY - JOUR

T1 - Understanding sickle cell disease

T2 - Impact of surveillance and gaps in knowledge

AU - Kaur, Mandip

AU - Brown, Mary

AU - Love, Ted W.

AU - Thompson, Alexis

AU - Treadwell, Marsha

AU - Smith-Whitley, Kim

N1 - Funding Information: Although the data from 2 states provides key information to understand health care and outcomes of people with SCD in each state, drawing conclusions about national outcomes requires significantly more information about patients across the country as healthcare systems and patient populations vary by state. The challenges that patients face in 1 state may not necessarily be the same in other states, and as a consequence, recommendations for interventions to improve health outcomes may also be different. As a result, because of the lack of Congressional funding for the CDC’s sickle cell activities, the SCDC program is funded, almost exclusively, by public-private partnerships through the CDC Foundation.24 Congressional appropriations in the FY20 Federal Budget for CDC to conduct the activities outlined in Public Health Law No. 115-327 would allow for the expansion of SCDC activities to additional states. Resources are needed to establish a national surveillance system to learn the exact number of people with SCD in the United States, to identify health disparities endured by the SCD population, and to provide the evidence needed to improve health outcomes for this condition. Without resources to sustain current activities and expand the SCDC program to additional states, our understanding of how new policies and new treatments affect access to care, health complications, health outcomes, and life expectancy will be eliminated, perpetuating health disparities among those living with SCD. But it is not just the SCD community that would be withheld from benefits: the state and federal governments, through Medicaid and Medicare, will continue to pay for the large majority of the SCD population’s costly health care.25

PY - 2020/2/11

Y1 - 2020/2/11

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DO - 10.1182/bloodadvances.2019001000

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VL - 4

SP - 496

EP - 498

JO - Blood advances

JF - Blood advances

SN - 2473-9529

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Understanding sickle cell disease: Impact of surveillance and gaps in knowledge

ASJC Scopus subject areas

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