By Svetlana Marshall

A LOCAL sickle cell organisation – Fight Against Sickle Cell Stigma (FACES) – is calling on the Public Health Ministry to institute measures that allow sicklers to be given priority treatment at public health facilities across the country.Founder and President of FACES, Sabrina Kazim, said there is need for an across-the-board protocol in the local health sector for treatment of sicklers. Kazim said while there is an established protocol at the Georgetown Public Hospital (GPHC), sicklers are often “left out in the cold” at other public hospitals.
“There are some hospitals that do not have any protocol when it comes to sicklers… a sickler in crisis should not have to sit at a hospital for four hours and then get treatment,” she said.
The sickle cell disease is an inherited blood disorder, characterised mainly by chronic anaemia and periodic episodes of pain called “painful crises.”
FACES President said once identified, sicklers should receive immediate attention, but said the organisation is cognisant of the fact that there will be “life-and- death” cases that would require the attention of doctors.
Kazim spoke to the media shortly after the opening ceremony of a “Sickle Cell Awareness Workshop” at the GPHC’s Resource Centre. FACES hosted the workshop on Thursday in collaboration with the Public Health Ministry.
Chief Medical Officer (CMO), Dr Shamdeo Persaud, echoed similar sentiments. “I really [would] like to see some standardisation to the approaches being taken when dealing with sicklers,” he said.
The one-day workshop drew participation from the Public Health Ministry, the Ministry of Agriculture, the Ministry of Social Protection, FACES and the GPHC, including sicklers.
This year, the Public Health Ministry announced its intention to place greater emphasis on sickle cell. Last year, Vice-President of the Sickle Cell and Thalassemia Association, Nurse Grace Bond, called the ministry out over its non-recognition of World Sickle Cell Awareness Day which is observed on June 19.
In a Guyana Chronicle award-winning article at the PAHO/WHO 2015 Media Awards, “Enough not being done for ‘sicklers’ …Dr Norton pledges gov’t support,” Bond had said “Since 2009, our country has not been highlighting this disease, and so I am asking this Government to recognise that Sickle Cell is one of the worst genetic conditions.”
The United Nations General Assembly in 2009 adopted a resolution for the recognition of Sickle Cell Anaemia as a public health problem. Sickle Cell Anaemia has been identified as one of the world’s foremost genetic diseases which has severe physical, psychological and social consequences for sicklers and by extension their families. As such, June 19 has been designated by the UN as World Sickle Cell Awareness Day.
In addition to acknowledging World Sickle Cell Awareness Day, the association would like the Public Health Ministry to establish a National Sickle Cell and Thalassaemia Register, implement guidelines and protocols of care, newborn screening, introduce a daily penicillin prophylaxis along with folic acid and introduce pneumovax from age two years for people with the Sickle Cell disease.
Health Minister Dr George Norton, in acknowledging that there might have been some oversight in giving due recognition to World Sickle Cell Awareness Day, pledged his ministry’s commitment to strengthen relationships with organisations such as the Guyana Sickle Cell and Thalasasemia Association.
“Certainly they will get our support,” he had said. It is clear, that the ministry is living up to this pledge. In a recent statement, the ministry said it is playing an active role in the local observances which are being held under the theme: “Exhibit courage and address ineffective areas of support.”
According to the World Health Organisation (WHO), approximately five per cent of the world’s population carries traits of haemoglobin disorders, mainly sickle-cell disease and thalassaemia.
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.”
In an effort to bring assistance to sicklers and persons living with haemoglobin disorders, the WHO has adopted two resolutions. The resolution on Sickle Cell disease was adopted during the 59th World Health Assembly in May, 2006, while the second resolution on Thalassaemia was adopted during the 118th meeting of the WHO Executive Board. These resolutions have called upon affected countries and the Secretariat of WHO to strengthen their response to these conditions.
Additionally, a resolution on the prevention and management of birth defects, including Sickle Cell disease and Thalassaemia was adopted by the 63rd World Health Assembly in May 2010.