Black Americans remain tormented by lack of sickle cell funding

Black Americans remain tormented by lack of sickle cell funding

By Derek Joy

Black History Month has come and gone again without much focus on the research funding gap between sickle cell anemia/trait and other debilitating diseases.

The battle to find improved methods of treatment, medication and a cure for sickle cell anemia/trait is an uphill one.  Securing funding for that research is an equally daunting task.

Dr. Lanetta Jordan, a trained and board certified psychiatrist and professor of public health at the University of Miami School of Medicine, is waging that battle in relative obscurity.

“Sickle Cell falls under public health,” said Jordan, who was born in Creedmoor, N.C., and grew up in nearby Raleigh.

“It’s prevalent among African Americans.  But it has been diagnosed in some Hispanics, in India and Saudia Arabia.  The disease came about from malaria. It was identified in America 100 years ago.”

The disease, according to Jordan, causes red blood cells to lose their round shapes and form the shape of a sickle in-stead.

Typical blood cells live for about 120 days, while sickle cells live only 12 to 15 days. Most sickle cells don’t carry oxygen very well, don’t bind oxygen.  As a result, a lot of organs suffer damage.

There is constant pain and a shortened lifespan for those who have sickle cell anemia. With some forms of the disease the life expectancy for males ranges from early to 40’s, while females have a life expectancy from the early 40’s to mid 60’s.

“There are a lot of psycho social challenges. Treatment has come a long way.  All babies are screened at birth for newborn diseases,” said Jordan, who earned her undergraduate, graduate and medical degrees from the University of North Carolina at Chapel Hill.

Jordan noticed the challenges and began working to over-come them during 12 years of service at Broward Memorial Regional Hospital.

She founded the first Sickle Cell Day at Memorial Regional, which is the first and only one of its kind accredited by the Joint Commission in 2003.

“Sickle Cell is not different from any other disease.  You just need to be a caring doctor.  There’s still a lot of suffering because of a stigma.  People see it as a Black disease.

“It’s the most commonly diagnosed disease among newborns.  But it gets the least amount of money for research.  It’s diagnosed more in newborns more often than hemophilia and cystic fibrosis but gets much less money for research.

“We’re trying to get money for research.  All of what we know in medicine came from research.  There are no drugs.  You can’t have a chronic disease and no drugs to treat.

“We (Black Americans) don’t do that very well in our culture.  We’re waiting around for help.  Others are more organized, more sophisticated.  That’s why they get millions and millions of dollars for research,” Jordan said.

Another possible problem that hinders fundraising for re-search, according to Jordan, could be the Tuskegee Experiment.

The Tuskegee Experiment was a clinical study conducted by the U.S. Public Health Service at Tuskegee University from 1932 to 1972.  The study set out to record the natural history of syphilis in Black Americans.

During that study, some 399 Black American males were denied treatment and the use of drugs. The results of that study were kept quiet, swept under the rug for years and became recognized as the most horrible scandal in American medicine in the 20th century.

“Most of the sickle cell disease in America is in the Tri County (Miami Dade, Broward and Palm Beach) area,” said Jordan.  “Florida is number one and New York is number two.”

In addition to raising funds for research, Jordan also raises money to send kids to camp at no cost to their families. Hence, Jordan will host the third edition of a 5K run, under the auspices of the Foundation for Sickle Cell Disease Research.

The run, being organized by pre-med student Eboni Peoples, is scheduled for April 6, starting at 7 a.m., in Broward Regional Park.  As in past years, some 30 to 40 kids from Broward and 20 to 30 kids from Miami Dade will get an all expense paid trip to Boggy Creek Camp.