Sickle Cell Association (Antigua and Barbuda) Inc.

The Antigua and Barbuda Sickle Cell Association needs to operationalize a specialized Sickle Cell Clinic providing acute and maintenance care for patients with Sickle Cell Disease (SCD), as mandated by current guidelines. 

A sheltered workshop for our most severely affected patients will be incorporated. 

SCD is one of the most painful diseases known, causing recurring episodes of agony due to blockage of small blood vessels ("painful crises"), consecutive organ damage and a myriad of other complications.  

Painful crises are emergencies and need to be treated immediately. 

Emergency rooms are notoriously overtaxed. The work load is too high for the existing staff; most health care providers are inexperienced in the management of SCD and underestimate the urgency of the situation when a patient presents in crisis. Poor provider knowledge leads to escalation of pain crises and secondary complications. 

Not surprisingly, patients with severe course of illness often face a socio-economic downward spiral resulting in poor outcome, depression and poverty. The sheltered workshop addresses this issue.

The prevalence of SCD in Antigua is high. A specialized clinic is clearly needed. We have leased and near-completely furnished a building. Funding and support would be used to staff and run the clinic. 

The first patient I witnessed in crisis was a four-year old, sobbing, clinging to her Dad, unable to walk for two weeks after. One Sunday, she was brought to my home, motionless, white in spite of her brown skin. She had stopped crying because she was too weak from blood loss into her spleen - a deadly complication. It took eight hours to receive the blood she needed; by then, her blood count was 3.

Afterwards, I could not let go. I joined the association, consulted experts abroad, read every available study, joined Johns Hopkins’ weekly SCD sessions, spoke publicly, identified issues. Adult patients insisted on joining my practice. Today, I manage about a hundred SCD patients. 

I work towards better care, social integration, awareness, education and prevention. Against stigma, callousness and myths.

You never get used to it. The look of horror on a toddler’s face. A teenager trying to stifle his screams, a grown man being carried in like a baby. A preschooler, handicapped after three strokes. A child orphaned because his mother didn’t receive adequate treatment. So much suffering, injustice and disrespect for people who are the bravest folks I know. How not to be passionate?

Worldwide, over 300,000 children with SCD are born every year. Antigua is a developing nation with 100,000 people. We have an alarming 18% of carriers and an estimated 1,000 SCD patients. They face the same problems as SCD sufferers worldwide: lack of provider knowledge, inadequate treatment, disbelief when presenting in pain, unjustified branding as drug-seekers, stigma, socio-economic decline. We help on all levels, individually and nationwide.

We achieved implementation of general newborn screening in 2020, a huge step forward, since this identifies both sick babies and carriers, resulting in earlier care and family testing, thus improving outcomes and preventing the birth of more affected children.

We achieved increased allowance of analgesics by demonstrating the appalling inaccessibility of pain medication and providing documentation for the INCB.

We host seminars, conferences and awareness projects. We have just been asked to co-host the 5th Continental CBR Congress of the Americas in 2022.

We leased a building to serve as clinic. Services need to be provided free of charge in order to make them accessible for all patients. Incorporated into the clinic, we are presently creating a Sheltered Workshop for severely affected patients. This should improve depression and isolation and create opportunities for income.

The concept of a Sickle Cell Clinic is not new. Our discerning features are:

It’s a small place. Within our limits, we could create an exemplary SCD unit. Continuity of care is incredibly important for SCD. There is no objective measure of pain and everyone reacts differently to medication, so it helps to know your patients well. Being familiar with their social and overall circumstances allows us to assist in more ways than medically only, fostering trust and treatment adherence .  

Serving this cause requires a compassionate, dedicated, humble personality paired with expert knowledge. We want to hand-pick our staff. SCD units overseas offered to host and teach them for a month before they start working.

To our knowledge, incorporating a Sheltered Workshop into a Sickle Cell Clinic has never been done before. Our most severely affected patients should be allowed to work according to their individual abilities, without fear of dismissal due to sickness. They’ll be with people who understand their challenges, learn new skills, crafts, relaxation techniques, complementary pain management and self-care. This is a way out of social isolation and depression towards mental well-being. It may generate modest income and increase uptake of care, thus improving outcomes.

WHO has acknowledged SCD as a public health problem. Without intervention, high prevalence of the Sickle Cell gene results in increased numbers of affected newborns.

Antigua has about 1,000 SCD patients. Directly or indirectly, this affects our entire population. Implementing newborn screening was the first step towards improvement. Taking better care of affected persons and their families on a larger scale is the next one.

The Sickle Cell Clinic will improve medical and consecutively socio-economic outcomes - the effectiveness of Sickle Cell Clinics is well-established in larger countries. Integrating a Sheltered Workshop is a novel concept. It will result in better mental well-being and social integration of disabled patients.

We are part of the international Sickle Cell community of physicians, patients and care-takers. We communicate, share, support and learn from each other. Prevention, education, medical care, mental health care, social aid, awareness, stewardship, networking, fundraising – we all face the same challenges. This ties us together across borders, despite our disparity in resources. We all have the same passion for our patients, and we are all learning. Our project can serve as model for other small islands. If we can do it in little Antigua, others can, too.