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PROF D'S VERSION (draft)

Funding disparities

Lack of funding can hinder drug development for treatment and lowers research productivity overall, and publications, which impacts quality of life and survival. [3] Researchers have suggested that disparities in funding are connected to the perception of SCD as a disease that primarily affects Black Americans. [3] Differences in funding between SCD and cystic fibrosis (CF) illustrate such a disparity. SCD is three times as prevalent as CF, yet both federal and private funding reflects greater funding for CF on the federal and private levels. [3] Researchers suggest that in light of these disparities, the federal government should increase its funding of SCD. In a March 2020 report, scientists suggest that “the more complex societal challenge involves overcoming mistrust and racism to empower and engage a community affected by the disease that has been historically disenfranchised.” [3]

Progress in Funding research

In 2018, President Trump signed the Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act, which will fund treatment and prevention programs. [2]

The CDC announced in September of 2019 that they would be nearly $1.2 million to the Sickle Cell Data Collection program (SCDC). The program collects demographic information about people with SCD.[1]  The funds will go to states to support collecting data on issues affecting people living with sickle cell disease. Previously, only two states – California and Georgia – were tracking SCD data in a formalized way through the SCDC. This new funding brings the total to nine states participating in the SCDC. New states include Alabama, Indiana, Michigan, Minnesota, North Carolina, Tennessee, and Virginia.[1] Increased data will help to build a framework for researchers to gather and analyze data to better understand the needs of the SCD population. The SCDC program will also provide better estimates of the prevalence of SCD. [1] It has been previously estimated that about 100,000 Americans have this disease. It is believed to be most common among people of African descent. [4]

1 https://www.cdc.gov/media/releases/2019/p0925-cdc-awards-funds-sickle-cell.html

2 https://www.nbcnews.com/news/nbcblk/bipartisan-bill-aimed-fight-sickle-cell-disease-signed-law-trump-n949691

3 https://www.ajmc.com/newsroom/study-finds-funding-disparities-between-sickle-cell-disease-cystic-fibrosis

4 https://www.nhlbi.nih.gov/health-topics/sickle-cell-disease

Research and Funding The Centers for Disease Control also known as the CDC and Prevention both decided to announce that they would be nearly $1.2 million in development funding that would go to states with development systems to collect as much data on obstacle people with sickle cell disease have to face.As of right now there are only two states which are California and Georgia  that actually work with the CDC on the Sickle Cell Data Collection program which collects population based data, and  comprehensive health information about people that are sick with sickle cell disease. This new funding would bring the total to nine states that are in the Sickle Cell Data Collection program. By adding and expanding with additional states to collect data on sickle cell disease, this would new deal would build the framework and a way so that researchers can gather unique data and conduct analyses together so that they could have a better understanding of the needs and how they can improve the health of those who are vulnerable or exposed. A few years ago, President Trump signed the Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act, which allows national surveillance and prevention program. It gives the award of grants for three purposes, Collecting and maintaining data on sickle cell disease health outcomes and carrying out various public health activities that include education and training of health professionals at the community, local, and state levels; supporting local and state laboratories that conduct tests to detect sickle cell disease; and evaluating best practices for the prevention and treatment of complications from sickle cell disease. Sickle cell disease is an inherited red blood cell disorder. Healthy red blood cells are round, which helps them move easily through the body’s blood vessels. With sickle cell disease, these cells are crescent moon-shaped, like a farmer’s sickle, and can get stuck, especially in small blood vessels. This keeps blood from flowing properly, which can damage the body’s organs and cause severe pain. While the expanded Sickle Cell Data Collection program will provide better estimates of the prevalence of sickle cell disease, it has been previously estimated that about 100,000 Americans have this disease. It is most common among people of African descent. The difference in funding exist between sickle cell disease (SCD) and cystic fibrosis (CF),Based on a new study that was published in JAMA Network Open. For the sickle cell disease, the difference may be associated with novel drug development and the lower research productivity .Although both diseases got a similar amount of federal government research funding between 2008 and 2018, the researchers claim that SCD is three times as prevalent as CF. In addition, the US birth rate of SCD is 1 in 365 black individuals while the US birth rate of CF is 1 in 2500 white individuals.The researchers believe that because of the gap in private support and the association between funding with quality of life and survival, the federal government should increase its funding of SCD.