6:40am , Wednesday 20th January 2021

Thalassemia Patients Seeking Jobs Fall Victim to Outdated Health Rules

22 March 2012

Bayan, 28, did not know that there was an obstacle facing her career, until medical committees at the Ministry of Health diagnosed her as “unfit” for government employment, because her spleen was surgically removed when she was young.

Bayan, a Thalassemia patient – a type of chronic anemia passed from parents to children if both parents carried the disease – completed the requirements for employment.  An article in the Medical Committees Regulation issued by the Ministry of Health in 1977 deprived her from realizing her aspirations for a job.

Article 3 of Annex 3 of the Medical Committees Regulation stipulates that those who had their spleen removed as a result of a disease shall not be employed in the government sector.  Doctors argue that at least half of those with Thalassemia will potentially lose their spleen if their case exacerbates.  Hence, they are deprived of the job, or lose it retroactively in case any of them underwent surgery to remove their spleen.

Bayan, who completed her university education with honors in Accounting in 2008, has all the necessary qualifications to enter the labor market.  However, and like most Thalassemia patients, estimated at 1100 by the Ministry of Health statistics, she fell victim to “local” rules that prevent most Thalassemia patients from obtaining a job in the public sector, as Dr. Basem Al-Kiswani, director of the Thalassemia section of the Ministry of Health explains.

Al-Kiswani believes that “a great injustice was inflicted on those patients without any scientific, human or social justification for enacting this law.  Thalassemia patients whose spleen was removed are healthy enough, and their condition does not require such an article in the Regulation, because they are perfectly capable of working.”

He also criticizes the continued presence of this law without amendment since it was enacted in 1977, despite the development in treatment methods over the past decades.

According to Al-Kiswani’s estimates, 30 – 40% of Thalassemia patients are exposed to spleen removal, but this does not affect their health in case they continue to take the necessary medications after the operation.

The writer of this report carried out a field survey on a random sample to verify these percentages.  She found out that 7 out of every 10 Thalassemia patients have had their spleens removed, and are hence subject to the law banning them from working in government institutions.

Dr. Mohammad Al-Duweiri, the hematology consultant at Al-Hussein Cancer Center explained the indications that require taking the decision to remove the spleen of a Thalassemia patient. “Surgical removal becomes mandatory as a result of an enlarged spleen, which exerts pressure on the lower right abdomen, causing various problems to the patient.”  He adds that “when the medical necessity to remove the spleen presents itself, the patient can undergo the surgery, provided he is more than 5 years of age.”  He emphasizes, however, that “these symptoms do not reduce he patient’s ability to have any job, and spleen removal is better than periodic blood transfusions before surgical removal.”

Exceptional Cases, Few Beneficiaries

Mohammad Rouhi, a 23-year-old Thalassemia patient almost fell victim to this law, when he received a letter from the Ministry regretting that he could not remain in his position since his spleen was removed in 2002.  Rouhi remembers how the Ministry informed him that he could not join the teaching staff of the Ministry of Education three months after he was appointed on 3/10/201.”  Rouhi’s appointment violates the laws because he had undergone surgery, and his acceptance procedures were halted. (Attached is the prohibition letter)

This decision brought Rouhi back to his bitter reality, when he thought he had surpassed it after working for a few months.  He knocked at all doors he thought would help him solve his problem.  He went to seek the help of the Jordan Thalassemia and Hemophilia Society, which sponsors about 400 patients. His problem, according to him, “will present an obstacle to all similar patients.”

Ms. Rahmah Al-Hallaj, the Jordan Thalassemia and Hemophilia Society secretary general followed up on what happened with Rouhi, sending a number of memorandums to Ministers of Health and officials on various dates, demanding that the ministry reconsiders its committees’ system and cancels the item related to refraining from appointing patients whose spleens were removed, refusing the decision by Ministry committees to prevent Rouhi from practicing his job.  Rahmah Al-Hallaj’s decision resulted in an exceptional decision by the former Minister of Health, Dr. Mahmoud Al-Shayyab on 17/1/2011, which accepted the teacher back to his position but after 4 months of suffering.

Al-Hallaj believes that Rouhi’s case was “a rare case included in the decision to exceptionally permit him to work.  Government employees with Thalassemia are very few,” numbering four or five.

According to Dr. Al-Kiswani, director of the Thalassemia section at the Ministry of Health, “the state spends about JD10 million every year on Thalassemia patients.”  Dr. Jamal Qannash, director of Medical Committees at the Ministry says:  “The Minister of Health has the authority to approve the appointment of any patient under the ‘special and humanitarian cases’ system, although such a patient violates the regulation provisions.”

Qannash admits that “the item that prevents spleen removal patients from working for a medical reason is unsound.  Thalassemia patients who have had their spleens removed are fully capable of working in case they commit to taking their medication and attending periodic check-ups.”  He also emphasized that “a committee comprising representatives from various sectors, including the Ministry of Health, Social Security and the private sector was formed recently to evaluate its items and amend whatever needs change, especially that no change has been made to it for over 30 years.”

On his part, the director of Legal Affairs at the Ministry of Health, Mr. Radwan Abu-Damis explained the reasons behind ratifying an item like this in the Medical Committee regulation:  “The Ministry is keen on preserving the health safety of anyone who occupies a public position.”  He added, defending the regulation:  “The medical committee entrusted with examining the eligibility of the patient takes into consideration the health state of the patient as a whole, and not simply the removal of his spleen.”

Abu-Damis, however, does not deny the need to amend the law.  “The current stage requires looking into amending the articles of the medical committees Regulation, especially that the societal outlook towards the nature of this ailment has now changed, after recent treatment developments.”

There are no official figures on the ground showing the number of patients who were prohibited from working because their spleen was removed, and were later allowed to do so, according to the Director General of the Civil Service Bureau, Mr. Sameh Al-Nasser.  “They can be counted on the fingers of one hand.”

Prohibited for Thalassemia Patients, Allowed for Others

Bashir, 31, a Thalassemia patient denounced the Medical Committee’s law allowing someone whose spleen was removed as a result of an emergency such as a traffic accident to work in government, and at the same time, preventing a patient whose spleen was removed as a result of a disease like Thalassemia from doing so. (Article 9 of annex 4 of the Medical Committees Regulation refers to the fact that diseases which do not prevent accepting an applicant in a job are those whose spleens were removed as a result of a non-disease reason.)

 No Work and No Government Support

Attempts by patient Sana, 24, to obtain a job opportunity by applying through a list for humanitarian cases at the Civil Service Bureau failed. She was directly rejected.

Mr. Sameh Al-Nasser, Director General of the Bureau, justifies the position of his institution in rejecting the application by saying that “Thalassemia is not listed as a humanitarian case.”  He emphasizes that “the problem lies in the Medical Committees Regulation, and the Ministry of Health should amend its items.”

According to the official website of the Civil Service Bureau, humanitarian cases approved by the Bureau are: special and emergency cases, acute poverty and various kinds of disability.  Article 28 of the Civil Service Bureau explains how a committee is formed from the Civil Service Bureau, the Ministry of Health and the National Assistance Fund, to look into approving applications submitted to list them under humanitarian cases.

Al-Nasser adds: “We feel with this group of patients, and we are in the process of addressing the Ministry of Social Affairs to work at listing them under humanitarian cases, or disburse a monthly pay to compensate them for the rejection.”

The position of Mr. Mohammad Aref, director of the National Assistance Fund contradicts this point.  The Fund deals with any citizen who applies for obtaining a monthly assistance within specific terms and conditions that apply to all citizens with special needs.”  He adds:  “There is no law that compels the Fund to pay assistance to Thalassemia patients, except if all other conditions apply to him.  The Fund lacks a specific statistic about Thalassemia patients who receive assistance,” according to Aref.

The survey prepared by the writer of this report on 40 Thalassemia patients who are capable of working indicates that 6 out of 10 suffer from tough living standards because they are incapable of joining the labor market and their inability to obtain any assistance from any other party.

Deprived from Working in the Private Sector as Well

The Medical Committees Law is not less stringent than the disease itself on Thalassemia patients.  It deprives the patient from practicing his or her work in the private sector as well.

The Thalassemia patient is normally refused the job simply when the work owner looks at him.  His facial features are distinguishable; pale, with facial bones protruding, as a result of blood transfusions.  The secretary of the Thalassemia and Hemophilia Association, Rahmah Al-Hallaj says.

As an example of what normally happens when a Thalassemia patient applies for a job, Mohammad Rouhi, 23, tells his story with the Medical Committees employees when he took the tests (4/8/2010).  One of them said as he saw him:  “Can’t you see the look on your face, which tells that you have the disease?  How could you take this step and apply?”

Husam, another patient, recalls another story of discrimination against Thalassemia patients:  “I tried to apply for a job in a private institution, but my application was turned down every time, to the extent that I was sent away from in front of a factory, the minute the business owner looked into my face.”

He summarizes the situation of Thalassemia patient as:  “Even if there are vacant positions, business owners refuse to appoint us, and if one of them accepted that we submit an application, they never call us again.”

Deprived from Work and Depressed 

The mother of Asma, who died on 29/5/2011 at 28, describes her daughter’s situation a few weeks before she passed away. She was under shock and severely depressed after a bone marrow transplant operation failed, depriving her of a chance to fully recover from the disease.  Asma plunged into psychological problems, and she spent long hours sleeping. She refused to be part of her society.  She slowly stopped taking her medications, increasing the level of iron in her blood.  Asma’s mother continues: every time Asma went looking for a job, she returned depressed because she was turned down by business owners when they knew about her disease.

“Slow death”.  This is how Nivine describes her case with her friends, due to their psychological suffering from the disease, saying:  “I lost many of my friends, who were depressed as a result of psychological pressures they suffered from.  Some of them ended their lives by refusing to take their medication and treatment.”

The most difficult thing facing Thalassemia patients is the sense of pity they receive from society.”

Asma and Nivine are not the only two people who fell prey to the depression trap. According to a survey carried out by this reporter on 40 Thalassemia patients who are capable of working, nine out of ten patients suffered from depression because they could not find a job opportunity.

Dr. Hassan Al-Khuza’ei, a sociologist, says:  “The employer’s refusal to employ Thalassemia patients’ results in dissatisfaction and discontent, and their outlook to society in which they live becomes dark, especially towards relevant institutions that were originally created to serve him.

Al-Khuza’ei says that “civil society institutions are better off embracing any person suffering from a sickness or a disability, and is able to work, and should be his or her best assistant.

Yet work alone is not sufficient to delete what may stick in those patients’ psyche.

Jihad Al-Banna, chair of the Jordanian Forum for Health Education explains that the “problem from which our patients suffer, and is starting to cast its shadows and affects on us, does not lie only in modernizing the laws related to the rights of sick people as is the case in most countries, but the in the absence of psychological care, which places us in a worse situation.”

Al-Banna criticizes the absence of psychological care that includes these patients at the Ministry of Health. The ministry only spends on medications and periodic check-ups but does not pay for psychological counseling.

In light of the official admission of the need to review the system that deprives Thalassemia patients of work, and under the weight of the slow move towards amending it, this overwhelmed group remains captive to an official systems that paralyze it, and a society that refuses to work with them as a group capable of giving in all aspects of life.

This report was prepared with support of Arab Reporters for Investigative Journalism (ARIJ) under the supervision of Amr Al-Kahki from the International Center for Journalists.


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