WHILE some public and private medical institutions have been putting systems in place to accommodate sicklers, especially when they are in a crisis, the issue of stigma and

discrimination remains a major problem.

Sabrina Kazim, President of Fight Against Sickle Cell Stigma (FACES), recently told the Guyana Chronicle that the organisation has been working closely with the Public Health Ministry, the Georgetown Public Hospital Corporation (GPHC) and the Sickle Cell and Thalassemia Association to raise the level of awareness about Sickle Cell anaemia.
The disease is caused by an abnormal type of haemoglobin called ‘Haemoglobin S.’ Haemoglobin is a protein inside the red blood cells that carries oxygen to all parts of the body.

Passed down through families, sickle cell anemia is a condition where the red blood cells that are normally shaped like a disc, take on a sickle or crescent shape. The abnormal cells deliver less oxygen to the body’s tissues and can easily get stuck in small blood vessels and break into pieces. Because of the presence of these abnormal cells, there is an interruption of healthy blood flow, cutting down on the amount of oxygen flowing to body tissues.

Almost all people with sickle cell anemia have painful episodes called ‘crises’. These can last from hours to days. Crises can cause pain in the lower back, leg, joints, and chest. Some people have one episode every few years. Others have many episodes each year and these crises can be severe enough to require hospitalisation.
With increased awareness and collaboration, Kazim said there has been notable improvement in the services provided to sicklers at GPHC’s Accident and Emergency (A&E) Unit headed by Dr Zulfikar Bux.

“The services provided to sicklers in the Emergency Department have improved significantly because of the support GPHC has given to FACES under the leadership of the new CEO Allan Johnson,” Kazim said.
According to her, Johnson and Bux have been offering much needed support to FACES in the hosting of awareness workshops.

RELUCTANCE
However, she said there still remains a problem at GPHC, contending that while the administrators of the hospital have been trying to provide the required treatment for sicklers, there are some nurses who are reluctant because of the narcotics involved for the international treatment for sicklers experiencing excruciating pain.

It was explained that if a sickler continues to experience pain after receiving two to three rounds of medication, the doctors at the A&E Unit would call in the Internal Medicine Team. That team after conducting its review, would review the patient’s chart and based on the information would prepare a treatment sheet. The patient is usually admitted, according to Kazim, who was diagnosed with the disease since age seven.

“Although the Internal Medical Team would prepare the treatment sheet, which is usually very detailed, there are some nurses who would refuse to give the patient the medicine because it includes opioids,” she complained, noting that in many cases sicklers are viewed as addicts.

Opioids are substances that act on opioid receptors to produce morphine-like effects. They are most often used medically to relieve pain.
“If the sheet says every eight hours, then you are supposed to get it, every eight hours,” Kazim lamented. According to her, just days ago, two sicklers had complained about the treatment meted out to them while hospitalized at GPHC.

DISHEARTENING
“It is disheartening, it’s painful and it’s life threatening,” to deny sicklers their medication on the basis that they are addicts and not really in excruciating pain.
This problem facing sicklers is reportedly being addressed by the administration of the hospital.

“It’s sad that sicklers get treated like crap because lots of doctors think we’re all addicts. I won’t lie and say that some aren’t but to tell someone that they aren’t in pain because you think they are lying, that’s just wrong,” Suzanne-Abigail Claxton told the Guyana Chronicle on Tuesday.
At the tender age of two, Claxton who hails from the mining town of Linden, Region 10, was diagnosed with the full-blown Sickle Cell disease. Over the years, she has been collaborating with a number of organisations to raise awareness.

“There are ethical ways to help sicklers that are presumed addicts to opioid pain meds. You can either give them a small dose of the opioid plus an anti-inflammatory pain killer plus the saline and oxygen or you give the anti-inflammatory with valium if they still cry out for pain, the doctor should check for infections. Infections are not only painful, they can kill sicklers. But too many times the doctor just sees the sickler, give them pain meds and saline then send them home,” Claxton contended.

In addition to working with the public hospitals, FACES has received the support of the St Joseph Mercy Hospital, Woodlands Hospital and the Davis Memorial Hospital, in addition to the Blood Bank. These private hospitals are reportedly putting systems in place to ensure that sicklers get the treatment they require on a timely basis.
According to the World Health Organisation (WHO), approximately five per cent of the world’s population carry traits of haemoglobin disorders, mainly sickle-cell disease and thalassemia.

An estimated 300,000 babies with severe haemoglobin disorders are born each year globally, and according to WHO, “the health burden of haemoglobin disorders can be effectively reduced through management and prevention programmes.”