THE RECENT #ALSIceBucketChallenge moves me in a very different way as the Father of Two Beautiful Young Ladies with SICKLE CELL DISEASE(SCD)--BELETA LYNNEE RUSH( WHO SUFFERED SO PAINFULLY FROM THIS AWFUL EVIL, AND WHO NOW LIVES IN HEAVEN WITH JESUS--AS A RESULT OF THIS DISEASE; AND BARBARA LYNET MONICA RUSH-WHO HAD HER FIRST STROKE AT THE AGE OF 5 YEARS OLD, OWING TO SCD---IT IS HARD FOR ME TO GET INTO THE SPIRIT OF RAISING FUNDS AND AWARENESS OF DISEASES IN AMERICA, WHEN THERE IS SUCH DISPARITY WHEN A DISEASE HAS AS ITS PRIMARY SUBJECTS, AFRICANS, OR AFRICAN AMERICANS--I SAW IT TODAY AGAIN WITH THE DOCTOR AND THE OTHER MISSIONARY TAKEN FROM AFRICA AND GIVING THE EXPERIMENTAL DRUG WHILE HUNDREDS, IN DEED THOUSANDS OF AFRICANS ARE DYING AND REMIND QUARANTINED IN LIBERIA.(THERE WAS A SIDE-BY-SIDE PICTURE OF THE OUT COME OF THE AMERICANS VS THE AFRICANS AS REGARDS THE EBOLA CRISIS)...I LIVED ALL OF THOSE PAINFUL YEARS WITH TWO VERY PRETTY LITTLE GIRLS THAT NEVER WAS ABLE TO GO TO SCHOOL FOR AN ENTIRE YEAR WITH OUT BEING IN INTENSIVE CARE; NEVER ABLE TO BE A NORMAL CHILD; ALWAYS ENDED UP IN A HOSPITAL BED BESIDE TERMINALLY ILL CHILDREN, WHO SOMETIMES DID NOT MAKE IT THROUGH THE NIGHT;.....DONT BELIEVE ME... I KNOW THAT I AM A LOVING AND ANGRY AND CONCERNED FATHER--LISTEN TO GARY GIBSON, THE PRESIDENT OF MARTIN CENTERS SICKLE CELL INITIATIVE AS HE SPEAKS SO FORCIBLE ON BLACK/WHITE HEALTH DISPARITY AND ESPECIALLY SICKLE CELL ANEMIA----- *Disparity in Research A review of the history of SCD research shows a sustained pattern of disparity of alarming proportions. Since its identification in 1910 until the passage of the National Sickle Cell Control Act in 1972, approximately $1 million had been spent on SCD research. That equates to a little more than $16,000 per year. The situation drastically improved with the passage of that legislation yet SCD research is still not on par with other diseases that affect far fewer people. Dr. Lauren Smith notes that a glaring disparity exists between SCD and Cystic Fibrosis research. She claims, “Although per capita expenditures do not fully capture the differing experiences of disease by individuals, it is notable that NIH [National Institutes of Health] allocates almost 4 times more funding per person affected with cystic fibrosis as it does for those affected by SCD. These levels of funding have been essentially stable over the past 4 years.” 17 The true extent of this disparity is found in the fact that SCD affects approximately 100,000 individuals and Cystic Fibrosis affects only about 30,000 persons. Cystic Fibrosis is not the only disorder that eclipses research funding for SCD. Research expenditures for Alzheimer’s Disease will be $498 million; Asthma research will total $221 million; Cystic Fibrosis will reach $79 million; Hepatitis-C research spending will be around $113 million; and Lupus research will top out over $105 million; Multiple Sclerosis will be $121 million;and Parkinson’s Disease research will reach $151 million. In comparison, the money spent on research in 2012 for SCD is expected to amount to $65 million.18
Posted on: Thu, 21 Aug 2014 21:10:21 +0000
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