Thirty-eight people died from the genetic sickle-cell disease (SCD) in Bahrain this year. In the last four years, the number of SCD mortalities in the tiny Gulf kingdom has increased by 40%.
Of Bahrain’s native population of 500,000, some 18,000 have symptoms of the disease. In addition, 65,000 people in the country have the gene, which originally was a mutation resulting from the human body defending itself against malaria.
In places where people were extensively subjected to malaria, the size and shape of the blood cells of some people changed to become too small to host the malaria microorganisms. However, this led to people developing weak and insufficient blood cells, resulting in episodes of severe pain, immune deficiency, and a shortened lifespan.
The question, though, is why have 100,000 African American SCD patients stretched their lifespan to sixty years within only two decades, while the Bahrainis are saying goodbye to what appears to be four SCD youth mortalities every single month? And why do patients suffering from the disease in Bahrain have a shorter lifespan than patients in Nigeria?
More importantly, what could be done to control the disease and provide a better life for patients in the country?
The case of Nasreen Saif partly answers the above questions. Nasreen Saif is a 34 year-old banker. She has the mildest type of sickle-cell disease and almost never had pain crises. Her hospital-admission rate is almost one every ten years. However, she was admitted to the hospital last week upon "mild complications after food poisoning,” she said. “My admission was to control the fever.”
It is a standard measure to admit sickle-cell patients with fever in order to monitor any complication but Nasreen had to stay in the ER for three days waiting for a bed in the wards.
At the ward, she "didn't speak with anyone with a good lifestyle; no one exercises or eats healthy food and all need life coaching." Nasreen, who never eats junk food and goes to the gym five times a week said "the three elements to live well are: good nutrition, active lifestyle and a good mental state."
Although she might have a mild type of sickle-cell disease, Nasreen thinks that there are many reasons that the rest of the patients are suffering. She said reasons "ranging from the hospital to the service and the bathrooms…they make you sicker than you already were when you got to the hospital." But still she emphasizes that she “spoke with many, from young teenagers to seniors from different backgrounds. None of them has a normal healthy lifestyle."
"They need psychologists working side by side with hematologists for sure, but what can doctors do if the patients are in pain? It is true, they get severe pain."
Nasreen’s experience outlines many of the problems SCD patients face in Bahrain. Zakareya Al-Khadem, President of Bahrain Society for SCD Patient Care presents the solution to all these problems.
“Our goal is to own the tool,” he said, explaining the organization’s civic initiative to establish an SCD care centre. “Owning this tool could be done through partnerships with hospitals.”
However, there is at least one obstacle facing this partnership, and it is the same one that prevented medical companies around the world from investing in this particular disease – research and treatment.
“Because of the nature and the origin of the disorder, sickle-cell disease patients are poor. What would make a businessman in Bahrain invest in such center when he knows that the patients do not have the money to pay the bills,” asked Mr. Alkhadem.
“Therefore, we are pushing to legislate a medical insurance plan for sickle-cell patients.”
The plan should not only give patients the chance to be treated in private hospitals, who will be thrilled to provide high quality treatments for 18,000 potential life-long customers, but it should also reduce the pressure on the government's free medical complex. It is a win-win situation for all stakeholders; patients, government and investors.
“We understand the need for legislation,” said Alkhadem, pointing out that their initiative could not stand alone. “Hence, our honorary President is the Chairman of the Council of Representatives, Mr. Khalifa Al Dhahrani.”
The society, which entrusted its civic initiative with former MP Mohammed Almezel, seeks alliance with the National Assembly. This step comes along with their accomplishment of building bonds with the highest executive authority in the country, the Prime Minister himself.
The Society is also going to the train medical staff to work at the planned center in the future.
“We did not find medical staff who are specialized in treating SCD patients,” said Alkhadem, who is mainly targeting the unemployed. “We established our own training and research department to train our doctors and nurses.”
Headed by intensive care unit (ICU) consultant Dr. Hassan Al-Tublani, the department is also responsible for looking into “unsolved questions,” according to Alkhadem. “If we want to develop our treatment we need to do research.”
“Based on our experience, what medications reduced the pain episodes or controlled complications? Is it possible to extend our lifespan? What similarities and differences do our patients have with American patients for instance? Are we really 18,000 patients?” asked Alkhadem, attempting to illustrate the need for such a department.
The Ministry that failed to establish such research department and by no chance put any solution into practice to improve the lives of sickle-cell patients will soon be facing charges pressed by SCD patients Care Society. One more case is about to be added to the two open cases against the Ministry of Health, which have been pressed by families of affected patients.
“Where is the error? Is it an administrative error, a lifestyle error, or a medical staff error?” asked Alkhadem rhetorically.
The conflict, he said, is not with people themselves. It’s rather with an “old system” that has to be revised, a process that he claims to be “less prioritized” for the favor of less important matters. Only two medical consultants are responsible for treating all of Bahrain’s sickle-cell patients, which gives each one of them 9,000 cases to follow.
The Society reported that male sickle-cell patients are treated by gynecologists, due to the shortage of qualified staff. In such a situation, there is no room for follow-up appointments with patients who need to have their blood tested every two weeks. The absence of follow-up leads to emergency rooms crowded with patients who did not get the care needed to prevent complications. That is how the cycle keeps going.
The Society observed that most of mortalities this year were admitted to the hospital after they reached the terminal stage.
“Most of them had organ failure when they were admitted. At that point no one could save them,” said Alkhadem.
A real-life sufferer of the ER predicament described by the Society is Qassim, a 23 year-old salesperson in a hypermarket.
"Some members of the staff treat me like a junkie. There are not enough beds, and even getting to the ER requires waiting for a long time. Sitting on the chair makes me feel worse," he said. "Sometimes the doctors do not understand the situation, they don't know we are suffering because they are not qualified. Consultants trained to treat disease are rare."
Qassim often tries not to go to the hospital. "I try to control pain crises with drinking liquids. I go to hospital only if the pain is unbearable".
He gets admitted to the hospital for a week every four to six months, which affects his work. “They deducted BD 150 ($398) from my salary this month because I exceeded the allowed sick-leaves".
The average salary for salespeople in hypermarkets is BD 250-350 (USD 663 - 928). Though there are better jobs available for him, he says that employers don't hire him when they know about his disease.
Health and career are not the only aspects which sickle-cell disease affects. Qassim also suffered socially, as his marriage proposals were rejected for the same reason.
"I had more pain episodes after this”, he said. “Emotional stress affects us very badly".
Evidently, SCD can be devastating on all levels for affected patients. Thus, the SCD Care Society pays attention to one more stake that shapes the lives of patients alongside its civic initiative. It is indeed the most important factor and the most doable: raising awareness.
Mr. Alkhadem presents his experience as an example of how self-care could significantly help reducing complications. He speaks from own experience, having managed to go from weekly episodes to living free of pain for four years in a row.
“All I did was to write down what I ate, drank, wore, and places I went to before I felt the pain. After doing that for more than eight times, I complied a list of 14 causes to my episodes,” he said. “By avoiding them, I avoided weekly visits to the Emergency Room too.”
Driven by the challenge of having a difficult and a rather short life, Mr. Alkhdem is determined to enjoy the most of it, and to influence other patients to do so as well.
“We have short lives. Do we want to live them in stress, or do we want to be free to enjoy them?”
He was overwhelmed when he saw how his son stopped drawing pictures of him on hospital beds while having blood transfer and started to draw more beautiful pictures of his progress in coping with his illness.
Mr. Alkhedem strongly believes that sickle cell patients are capable of being creative and productive for themselves and society. Moreover, he thinks that the patients could easily cope with their illness and live with it.
“If Yan can cook, you can cook…this message should be delivered to the people” he said, stressing the fact if one can do it everyone can do it, quoting the slogan of a Chinese cooking show.
“If we build this confidence in the patients, we could say ‘mission accomplished.’”