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Sickle Cell Disease (SCD): The Billion-Dollar Drain On the Economy Of Black People

EDITOR’S NOTE:

In this final installment by our research editors on the devastation caused by the blood-borne health condition, Sickle Cell Disorder (SCD) on the world’s Black populace, we were able to chronicle the economic and financial toll it takes on the carriers and their families. In this groundbreaking work, our editors also uncover an often neglected fact about those who suffer from the disorder, who apart from requiring care all their lives, most of them are unaware that their children are equally at increased risk for the disease and are most times unaware of their individual vulnerability. 

Please read on, and your comments are welcome:

A new study shows that the cost of medical care in the United States for people who suffer from sickle cell disease exceeds $1.1 billion USD in one year. To realize the total cost of SCD, we need to add to it the yearly per/person cost in lost wages, and the toll of the economic hardships borne by the families of those who carry SCD, which has been estimated in another study to stand at $1.5 billion USD, bringing the sum total to a staggering $2.6 billion per year. 

This constitutes a debilitating drain on American families of color who are naturally susceptible to this condition, the U.S. healthcare/medical sector, and the overall economy of the United States.   

SCD Family Unit Costs

The  $1.5 billion in lost wages and productivity per each year, comes to more than $650,000 loss over the average working life of a person living with the SCD painful genetic disorder.  Besides this economic loss, the SCD population and family units spend additional amounts to sustain their daily lives and cost of homecare and medicines and pain killing medications. These family and personal healthcare costs usually rise with age, from about $900 per month for children under 10 years old to $2,500 per month for adults over 50 years old. By age 45, total healthcare costs per person reach almost $1 million over a lifetime span. 

When considering the SCD economics and costs – we must factor in –  SCD’s costs as a family unit cost.  This is for following reasons: Firstly, SCD is inherited, simply stated it takes mother and father, both suffering from SCD who become caregivers to their SCD afflicted child.  Secondly, and based on the Center for Disease Control (CDC ), it is estimated that of 100,000 individuals with SCD, it would total to 33,339 SCD families/households if multiplied by three.

Taking this figure and applying it to the cost analysis reported in a SCD cost study by the healthcare insurance industry the estimated cost, per individual patient (in US) is 1.7 million for lifetime – the cost would be $5.1 million per SCD household unit – or total for all the SCD family units would be $170,028.9 million, or over $17.1billion.

In addition, the above healthcare industry study estimated that the out-of-pocket expense for a lifetime per single SCD patient stands at $44,000 – again multiplying this figure against the SCD family unit of three, the cost is $132,000 per family unit. 

As it relates to role of Medicare (available in the US to ONLY those over 65 years), here are available data:

This is Medicare information including emergency room (ER) use:

  • Overall, more than 70% of Medicare FFS beneficiaries with SCD were dual-eligible, qualified for Medicare and Medicaid.
  • Among Medicare FFS beneficiaries with SCD, 98.3% had an outpatient visit, 75.5% utilized the emergency department, and 59.3% had an inpatient stay and those aged 18-45 years, on average, had greater hospital utilization.
  • Among Medicare FFS beneficiaries with SCD, the most common chronic conditions included hypertension (65.8%), fibromyalgia (64.9%) depression (51.3%), and chronic kidney disease (47.0%).
  • More than four out of five Medicare FFS beneficiaries with SCD were non-elderly (less than 65 years old) and obtained Medicare coverage through disability insurance benefits.

Overall, the particulars for SCD are one of the most costly, demanding, complex, unpredictable and ancient of diseases in America. Heart disease, for example, is calculated as costing the U.S. economy and healthcare over  $444 billion, with a disproportionate number of SCD patients included. And this SCD heart disease cost is not counted on the SCD lists.   

In the United States the exact number of people living with SCD and/or SCT is Still unknown

That is an official position statement by CDC.  However, Centers for Disease Control and Prevention (CDC) together with U.S. Department of Health & Human Services stipulate that 100,000, mostly African Americans suffer from SCD and additional 2 million Americans suffer from SCD Trait or SCT.

Since the total number of SCD patients in the U.S. is not known, that becomes the first item to take a look at and establish what the SCD numbers are in the U.S.

 General knowledge of the SCD and SCT numbers includes the following: 

  • SCD occurs among about 1 out of every 365 Black or African-American births.
  • About 1 in 13 Black or African-American babies is born with sickle cell trait (SCT).
  • SCD occurs among about 1 out of every 16,300 Hispanic-American births.

With the prevalence of SCD numbers centered on direct African heritage entry into the U.S. during the Middle Passage, and the inherited nature of the SCD, we utilized the Trans-Atlantic Slave Trade Database to calculate presents CD numbers.

Many of the 10.7 million Africans who were brought to  the Americas about 388,000 were taken  directly to what is now the USA. The overwhelming percentage of the enslaved Africans were shipped to the Caribbean and South America, where SC continues to stress their national economics, especially in Jamaica and Brazil.  But many who originally landed there were trans-shipped North to the American Colonies.  The number is about, 60,000 to 70,000 – this brings the total in the US are, to approximately 450,000.  

We do not know how many were ‘captured’ and enslaved in Africa’s malaria areas and thus had the SCD malaria protection DNA, but a safe assumption can be that at least 30% came from the mosquito infestation areas of West Africa and the Sahara.  That would suggest that 30% of the 450.000 or 135,000 would have had SCD in their DNA.  From the original 450,000, we now count the 42 million African-Americans as descended from the group of less than half a million.  That 30% would be 13.5 million today, versus the CDC number of 100,000.  Although this may sound like a theoretical issue – the difference between what is officially used, and the potential reality needs to be questioned and looked into more fully.

What Else is New?

  • Sickle Cell Disease Comprehensive Care Act (H.R. 6216/ S. 3389). This important bipartisan bill, if passed, would authorizes the Centers for Medicare and Medicaid Services (CMS) to develop a demonstration project to improve access to comprehensive, high quality outpatient care, for individuals living with sickle cell disease (SCD) who are enrolled in Medicaid.
  • A new multibillion-dollar federal agency was created with a goal of supporting “the next generation of moonshots for health” in science, logistics, diversity and equality. And the agency now has its first leader, as President Joe Biden announced Renee Wegrzyn as director of the Advanced Research Projects Agency for Health, or ARPA-H, on Sept. 12, 2022.
  • Major development in the fight with SDC is the newly formed foundation by the Bill and Melinda Gates Foundation – after they successfully resolved the vaccine therapy of malaria, they are  now focused on solving the SCD, hence the establishment and funding of the multi-million dollar Melinda Gates  Sickle Cell Foundation  – it is anticipated that just like the effort to fight malaria their leadership will finally provide resolutions to SCD. 

SDC caused infections and complications lead to a significant economic and societal burdens. We believe that public awareness of SCD and SCT can change the mindset among civic and political leaders and their apparent timidity and shortsightedness when examining the economic and societal impact of SCD on the people of color in America and elsewhere. It will invariably guide them and public health officials as they seek to develop healthcare delivery policies and thus make appropriate budgetary allocation strategies in ameliorating the burden  of this health disorder on the American public, the nation’s economy and the healthcare industry.

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