Increase NIH Funding for Sickle Cell Disease
- by: Dominique Friend
- recipient: Francis S. Collins, M.D., Ph.D. NIH Director
In the United States, there are >80000 people affected with SCD. It affects 1 in 400 blacks and 1 in 19000 Latinos and has a carrier rate of 1 in 12 and 1 in 100 for black and Latino populations, respectively. In 1970, Scott highlighted a substantial difference in the research effort for sickle cell anemia compared with other chronic childhood diseases, measured by the number of National Institutes of Health (NIH) grants. Scott noted that there were 3 times as many grants for the more highly publicized conditions of cystic fibrosis and muscular dystrophy as there were for SCD
Sickle Cell Disease.
Sickle Cell Disease from the Patient Point of View Follow-up to the meeting of October 19, 2009 with Mr. Kareem Dale, Special Assistant to the President for Disability Policy.
Sickle Cell Disease: A Question of Equity and Quality Lauren A. Smith, MD, MPHa, Suzette O. Oyeku, MD, MPHb, Charles Homer, MD, MPHc, Barry Zuckerman, MDa
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Increase NIH funding for Sickle Cell Disease (petition)
We the undersigned, is calling forth complete review of NIH funding policy as it relates to Sickle Cell Disease from members of the United States Congress.
NIH allocates almost 4 times more funding per person affected with cystic fibrosis as it does for those affected by SCD.
It is tragic and unjust for a particular group of patients to suffer avoidable complications and even death because effective new therapies have not been uniformly implemented. Although this is not unique to SCD, the severity of the disease and the nature of who suffers from it make the impact of this failure both severe and disparate.
For 2004, NIH reports spending $90 million on SCD across all of its institutes. This funding figure includes all of the research that NIH deems either directly or peripherally related to SCD. This contrasts with $128 million NIH spent on cystic fibrosis, which affects 30000 individuals in the United States
In large part, Sickle Cell Disease has been overlooked by researchers, misunderstood by the public, undertreated in non-specialized medical facilities and hasn%u2019t gained the attention that it should merit, given the number of people who are affected. The United States should be setting a standard of care that can serve as an example to other nations and our eminently qualified researchers should be vigorously pursuing a cure that could impact tens of millions of lives around the world.
There is no denying that race matters in the United States: as a country, we continue to struggle with the implication of past and present racial bias for health
In summary, the existing, unsatisfactory characteristics of current SCD treatment and research that must be addressed include: treatment disparities based on geography or on poorly dispersed clinical findings, a lack of education on SCD for health care providers and for the general public. Under-funded research for a cure for SCD and for creating improved treatment options, ignorance of the non-medical concerns of SCD patients and their families, Languishing recommendations of leading practitioners in SCD treatment and research, lack of government policy leadership at the federal level
Refs;
Sickle Cell Disease from the Patient%u2019s Point of View Follow-up to the meeting of October 19, 2009 with Mr. Kareem Dale, Special Assistant to the President for Disability Policy.
Sickle Cell Disease: A Question of Equity and Quality Lauren A. Smith, MD, MPHa, Suzette O. Oyeku, MD, MPHb, Charles Homer, MD, MPHc, Barry Zuckerman, MDa
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