THE biggest challenge facing the local sickle cell community has been found to be a lack of knowledge about sickle cell disease, ultimately leading to stigmatisation and discrimination against ‘sicklers’ by the wider community, and even some functionaries in the medical profession.This is the view expressed by professional director in the performing arts and actress, Sabrina Kazim who, diagnosed at age seven, has been living with the disease for the last 28 years, and has been at the receiving end of a trail of stigmatisation over the years.
Stigmatisation in a case like this can have negative spin-offs, since, depending on the extent of the stigma, it can invariably serve to heap mental and psychological pain on the sickler, compounding the physical and sometimes excruciating pains, he or she already suffers, living with the disease. Sicklers are persons living with sickle cell anemia.
SICKLE CELL ANEMIA
Sickle cell anemia is caused by an abnormal type of hemoglobin called ‘Hemoglobin S.’ Hemoglobin is a protein inside 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.
“The goal of treatment is to manage and control symptoms, and to limit the number of crises. People with sickle cell disease need ongoing treatment, even when not having a crisis,” according to MedlinePlus.
More than 30 years a sickler, and having had numerous crisis episodes, Sabrina has had close shaves with death during her ordeal. She has developed a condition known as ‘avascular necrosis’ of the hip and requires a hip replacement surgery which is estimated to cost about G$1.5M at any private hospital locally. But through it all, she is a fighter and has survived the odds. Against this backdrop, she is determined to make the difference in the lives of sicklers in Guyana. She feels that the key to removing stigma and discrimination from sickle cell anemia lies in a sustained sensitisation and education of the masses of the Guyanese people on what the disease is, how it works and its effects on persons living with it.
FACES – a sensitisation NGO
To this end, Ms. Kazim is soon to launch an organisation called ‘FACES’ – Fight Against Sickle Cell Stigma. The organisation, slated to be launched within the first week of April 2015, initially has a core group comprising Ms. Sabrina Kazim as Founder, Jashmine Wong, Mr. Sherod Duncan, and Adam Harris, Public Relations Officer, as well as persons living with the health condition.
The key movers recently met with Chief Executive Officer of the Georgetown Public Hospital (GPHC), Mr. Michael Khan to discuss the initiative. Foremost among the recommendations is that a Ward be set up at the GPHC dedicated for sicklers, and that a doctor/doctors specially trained in the management of sickle cell disease be assigned to work exclusively with those patients.
The GPHC, through its Institute of Health Sciences Education or other appropriate means, will embark on the training and sensitisation of nurses who will staff that ward, coaching them in all aspects of the disease; providing care for sicklers; administering of sickle cell medication; how to relate to such patients, with an emphasis on being sensitive to their needs, compassionate, respectful and not least – teaching the nurses the cardinal tenets of confidentiality.
The CEO is reported to be favourably disposed to accommodating a written proposal from ‘FACES’, with the intention of having sicklers properly monitored and managed so as to bring relief to their sufferings.
Says Ms. Kazim, “The objective is that through the organisation, Guyana can be made sickle cell friendly, because I believe the institutions in Guyana are not sickle-cell friendly in its entirety.”
In addition, ‘FACES’ will also be reaching out to the private medical institutions such as Woodlands Hospital, St. Joseph Mercy, David Memorial, Medical Arts and others, so that when sicklers are utilising their services they (the institutions) need to make certain that the ‘stigma and discrimination’ does not affect their treatment.
“We want to stretch out a hand in friendship, not in antagonism against any medical institution. While this is so, the administration needs to know of some of the problems, the uncomfortable and near-death situations in which some sicklers find themselves when admitted to hospitals.”
Addressing the need for respect and confidentiality within the wards, and citing the degree of stigmatisation to which sicklers are subjected, Kazim insisted there is severe stigma and discrimination attached to sicklers locally.
USE OF CONTROLLED NARCOTICS
Citing one crucial example she explained: “Given a sickle cell condition referred to as a ‘crisis’, where the body goes into excruciating pain, the ordinary medicine or drug will not work. In this case, what is used locally is morphine and pethidine which are controlled narcotics. If the pain is not managed in a timely manner, it can result in other complications during that crisis, even death.
But since morphine and pethidine are controlled drugs and cannot be had in drugstores, it means that the sickler must be admitted to a medical institution for it to be administered. That creates another problem, because when patients in ‘crises’ visit the hospital ‘too often’ for treatment to be administered, some medical personnel not convinced that they are truly in crisis, are least cooperative, Kazim outlined. They even point out sicklers to other staff and identify them as ‘drug seekers’.
She said that it is not uncommon that sicklers be left on the chair for hours at a time, in severe pain until the relevant person or persons are convinced that the crisis explained is in fact an authentic one.
“The nurses and medical staff may say to you: ‘You were here last week,’ or ‘You were here the other week, so how come you come back again?’ according to Kazim.
Recalling that she has been the victim of that kind of blatant disrespect on more than one occasion, Kazim said that this is not second hand information. It’s what she has seen and personally experienced.
“Honestly I feel like asking these medical personnel at times ‘Do you really think that I would want to put myself in this position for you to disrespect and abuse me just so I can be ‘high’, when there are drugs available in the streets at affordable prices without this sort of abuse and ridicule?”
She blames this on the fact that Guyana has not edified our people enough about sickle cell disease, and woefully some of our medical personnel lack this training. “What I am saying, is that as a medical person you cannot risk a person’s life because of your suspicion or your personal definition of the situation. You have to be professional.”
However, Kazim noted that there may be persons with chronic diseases including sicklers, who may be dependent on narcotics and she is therefore encouraging the relevant persons to set up the needed protocol to address such a narcotic dependency.
Even if it is accurately ascertained that the sickler may be dependent on narcotics, when the person is in a crisis, should the medical institution leave that sickler to die of excruciating pain because the person is addicted to narcotics? Doesn’t that seem barbaric?’ she questioned. After effectively managing that sickler and their crisis comes to an end, then some sort of rehabilitation system or protocol should be instituted, Kazim reasoned.
Kazim has constantly been in contact with other sicklers who relate their experiences, and who all agree that there is a crying need for concerted and sustained information dissemination to the wider community and medical institutions as well, on sickle cell disease.
She considers it unfortunate that there is not a lot of literature available to the public on the disease, as compared to say, cancer or HIV.
By Shirley Thomas