Sickle cell screening, national registry could identify trends in population

Two of the Bahamas Sickle Cell Association’s long-term appeals to government – mandatory newborn sickle cell screening and the establishment of a national registry -could become a reality.

Health Minister Dr. Michael Darville said as much during a recent meeting with the non-profit’s executives and other high-ranking members of his team.

“You are advocating for screening for everyone which is something that we can look at because we are expanding our packages with National Health Insurance Authority for our primary health care component,” advised Darville.

 “We need to get resources and we must take into consideration the screening for sickle cell, additional hematology, additional chemistry and additional cancer screening. They are the things we want to get in because all of those are a part of a robust primary healthcare component to try to keep people out of hospital.”

 He cautioned, however, that the cost associated with additional screening could be a dealbreaker if government finds it too exorbitant. The association assured him it was not.

 The health minister said he’s looking to repeal The Bahamas National Health Insurance (NHI) Act 2016 due to its limitations. In the coming weeks, the Davis administration will look to expand the basic healthcare package under a new NHI Bill 2022.

 NHI aims to deliver “accessible, affordable, and quality healthcare for the benefit of all Bahamians.”

 For The Bahamas Sickle Cell Association, whose goal is to educate and champion the rights of sicklers, robust screening is among its top four priorities.

“The importance of newborn sickle cell screening is to prevent babies from being vulnerable to infections and health complications by prompt diagnosis. It allows parents to seek proper medical attention for warriors from early, ultimately improving their quality of life,” said Kristin Beneby, BSCA’s president.

“I myself was born at the Princess Margaret Hospital. This test was not available for me. After repeated pain crisis and hospital admissions, doctors began to look deeper into what was causing severe pain episodes. At the age of five, I was diagnosed with Hemoglobin SS, which is the most severe form of sickle cell disease. Had this test been available at birth, I am confident I would have been able to be treated promptly and adequately. The mandatory newborn screening will prepare Bahamians to take on this life-threatening disease.”

Sickle cell disease is the name for a group of inherited health conditions that affect red blood cells, causing them to be unusually shaped and to clump together. These sickly red blood cells don’t live as long as healthy ones and can block blood vessels. A serious, life-long condition more common among Black people, sickle cell can restrict the flow of oxygen through the body. When that happens, it causes excruciating pain, that is known as a sickle cell crisis.

“Being forewarned is the first tool,” said Amanda Dean, the BSCA’s secretary. “With the newborn screening and the reporting, it would allow us to get data and data is key in how we can address the issues. If we don’t know what our numbers are, then we don’t know what medical resources we require for the sickle cell population.”

Around the world, national registries generate high quality, evidence-based data which can then be used to estimate the disease burden, trends in the population and mortality rate. It could also contribute to prevention, control and treatment.

“We are now looking very closely at our Cancer Registry with the intent to expand it to incorporate some of the chronic non-communicable diseases (NCDs) and sickle cell may be one of those we have to add to it as well,” Dr Darville noted.

“We need to know how many patients are in The Bahamas with sickle cell. We need to know the genetic makeup so that we can advise couples. It creates red flags if we know that you are on our registry and you have full blown or you have a trait and we know your partner, then we know that we need to do a screening.”

Other NCDs he’d like to incorporate into the cancer registry include hypertensive and diabetic patients who are very ill and individuals with polycystic kidney disease. The health minister said in The Bahamas, there is a genetic predisposition to the latter. Much like sickle cell, polycystic kidney runs in families.

“Primary health care insurance allows individuals to go to a physician of their choice and be screened on a yearly basis to look at various health indicators,” said Darville.“…We do not want people to present to our facilities with advance stages of diseases that we can keep at a level to prevent them from being admitted to hospital.”