Tunis, November 2014 (Le Maghreb) – In November 2013 we accompanied a colleague who wanted to undergo pre-marital tests at the Majel Bilabass Hospital in the state of Al Qasrein, a 380 km drive from the capital.
The nurse at the hospital reassured him with these words: “Everything is Ok. The whole thing doesn’t require more than two forms of identity papers and congratulations to the newlyweds!”
After 30 minutes, he came back and handed him a signed medical report as per the required regulations for matrimony in line with Law No. 46/1964 which necessitates the carrying out of pre-marital medical tests in order to eliminate the transferring of any genes that may cause hereditary diseases to children.
The same scenario was repeated at the Faryana Hospital, 20 km from Majel Bilabass. Our colleague asked one of the nurses, a school friend, to help him with issuing of the required medical certificate so that he can tie the knot. Not much discussion was required and the report was given without any medical tests.
Acquiring these for-free certificates from governmental clinics and hospitals is easy and has become almost standard practice among doctors and nurses in a country where 30 to 40% of marriages are among cousins, according to a 2007 national census. Such reports are issued without the necessary medical tests, which should start with a detailed medical history followed by a physical examination and then blood tests for both him and her. Additional tests are carried out if required to make sure that they are free of any contagious or hereditary diseases.
The nurses and midwives responded with sarcasm when we asked about the importance of carrying out these pre-marital tests. And the relative of a bride and groom-to-be, said: “You surely must have lost your mind. There are no procedures or tests.”
This phrase reflects the on-goings of medical staff in private and government hospitals with regard to the issuing of medical certificates, without tests, for those wanting to get married. Some of them even offer bribes to avoid the tests. This is what these two reporters documented after a year’s investigation in the field.
The lack of seriousness in dealing with pre-marital tests is helping increase the number of Tunisians suffering from disabilities. According to official figures, 162,990 out of a total population of 10.866 million are suffering from disabilities.
Eight out of the ten couples we accompanied violated the law requiring pre-marital tests: five of them through “shaming” and three by paying bribes.
According to Dr. Mohammad Al Shawish, an official from the National Mother and Guardian Safety Program at the Basic Health Department, the “results” for these non tests are provided in minutes, instead of the three days it should take to carry out clinical and lab tests in the capital, Sousa and Safakis, or almost a month in the remaining 21 states that do not have laboratories.
These violations occur despite the fact that this law has been in existence for 50 years and stipulates that a “free” pre-marital medical test be carried in public clinics and hospitals prior to the marriage ceremony. The couple are required to undergo a number of tests and examinations. The overall tests cost $50 per couple at private hospitals or clinics.
At the Tajroueen (government) Hospital in the Al Kaaf state, 200 km from Tunis, another colleague who had accompanied us convinced the nurse to provide him with a medical certificate without much waiting in exchange for 10 dinars ($7). The nurse asked us to wait outside the hospital and came back after 45 minutes with the certificate.
We went through the same experience at the public Hussein Bouzayan Hospital in the state of Kafsa, 343 km from the capital. There the nurse asked for 20 dinars ($15) so that we don’t wait.
We also noticed an absence of directives for the doctors to follow when issuing these certificates let alone a schedule for the examination or any follow-up tests, in addition to negligence in the area of monitoring on the part of the health ministry (chart 3).
Add to that are non-existent punitive measures for doctors who do not comply with Law No. 46. No form of punishment is carried out unless a complaint is filed against the doctor. There are no registered complaints at both the Ministries of Health and Justice, officials say.
Law No.46/1964 issued on November 2nd, 1964 sets the guidelines for pre-marital testing. But the certification is not useful for a couple of reasons. Firstly, it relies on the doctor’s morality. Doctors are meant to issue certificates after the couple undergo a number of legally required medical tests, which include: a general physical examination, a chest x-ray and blood tests. If this is not carried out by the doctor, the law does not stipulate any punitive measures.
What can be pointed out is that issuing certificates without examination is a grave error on the part of the doctor as per the regulations of chapter 28 of the handbook on the duties of physicians. This means the doctor himself can be prosecuted. The problem however is with monitoring since Law No. 46 does not stipulate that records should be maintained by doctors once these certificates are issued. This makes it very difficult to prove whether or not the law has been adhered to.
The second reason that makes Law No. 46 weak lies in its shortcomings from the regulatory aspect. For even if the doctor complies with the necessary testing prior to certification, his role is limited to simply informing the patient of the medical condition and warning him/her of any repercussions that may arise in the passing on to children of any diseases should he/she be a carrier of such hereditary genes.
The doctor has the authority to withhold issuing a certificate or postponing it to a later date. But this is not done and is in effect not useful as the couple can simply go to another doctor for certification.
The avoidance of pre-marital medical tests is harming children.
In a non-scientific survey of 100 families conducted by these two reporters via social media (Facebook and Twitter) seven out of ten couples admitted to having gotten away with not testing prior to their marriage. They said that their children have developed illnesses including anaemia and mental disabilities. Three out of the ten couples said they received their certificates after paying money.
According to the same survey, none of the couples who had undergone testing before marriage complained of their children having any disabilities.
The Ministry of Health estimates the cost of treatment for any child with a hereditary disease or disability at 35 thousand dinars ($20 thousand) per year.
Dr. Lamia Bin Juma’a, Director of the Genetic and Heredity Diseases Department at the Manji Salim government hospital, and an expert in heredity sciences, says the cost of treatment of parients suffering from hereditary diseases increases with age.
She adds: “the physician determines whether or not there is a danger of any disease or disability to unborn children and might ask the couple to undergo additional tests if there is any doubt.”
She also says that two out of three children being treated for hereditary diseases at the Manji Salim hospital are a result of the marriage of cousins.
Radia and Yousef gave birth to mentally disabled twins in 1994 in the state of Al Qasrein, 380 km west of the capital. Yousef says: “We cannot blame anyone as this is our fate, but I could have avoided this tragedy had I undergone the medical tests prior to our marriage.”
He adds: “Unfortunately my children can no longer continue their education because of their disability despite my having spent thousands of dinars on their well-being.”
Yousef and Radia got their pre-marital certificate by “shaming” the hospital staff because of their proximity to the family.
Professor Reda Bin Murad, a member of the Heredity Diseases Department at the state-run Charles Nicole Hospital says: “the doctor’s role is limited to providing guidance and suggestions of treatment. However he/she is unable to legally stop a couple from getting married. The law does not provide any supervisory measures to confirm the doctor’s decision.”
The most recent statistics from the Institute in 2004 indicate that same-family marriages constitute 33% of all marriages. Professor Reda Bin Murad expects this trend to continue. Most of these are marriages are between first-degree cousins and the rate is to remain the same in 2013. He bases this conclusion on the number of patients he sees at his department.
According to 2000 figures from the Disability Welfare Statistics Centre – a government institution – one person from 14% of the couples about to get married underwent medical tests, whereas the rate for a complete no show from either the bride nor the groom was 62.8%. This means that six out of every ten couples do not complete the required pre-marital medical tests and that a bride and groom out of every seven couples do not undergo tests.
The National Statistics Institute shows numbers that indicate that marriages have been on the increase in the last five years, reaching 111,000 in 2013 compared with 81,605 in 2009. In 2010 the registered numbers were 87,081 and 91,520 in 2011. No numbers were recorded in 2012 due to the disruptions that the country went through after the revolution.
According to his own figures, Professor Bin Murad estimates that 4% of the registered 214,500 births in 2013 carried hereditary diseases and 15.5% had disabilities.
Statistics from the Heredity Diseases Department at Charles Nicole Hospital indicate that 22,000 residents have sickle-cell disease (one of the hereditary diseases that destroys red blood cells). Records there show that 19 out of every 1000 residents are suffering from Thalassemia (anaemia resulting from a hereditary genetic disorder in the blood cells), especially in the mountainous northwest central areas.
The study found that 32 out of every 100,000 residents had neurological diseases with 15 to 27 cases out of every 1000 residents suffering from hearing loss.
Figures obtained from the National Institute for Statistics showed that hereditary diseases had increased at a rate of 25% in less than a decade (2004-2013), with a 20% increase in births in the period between 2005 and 2013. Using the same equations, we found that in the first decade (1964-1974) after the passing of Law No. 46 there was a decrease of almost one third in hereditary diseases due to the proper implementation of the law. Numbers remained steady in the second decade (1974 – 1984), taking into account population increase. The negative trend started to occur in the last decade.
“Any person knowingly infected with a communicable disease (venereal diseases) and goes out of his way to pass along this disease to another person shall be punished with a period ranging between one and three years”, according to Law No. 71/1992 dealing with communicable diseases.
The Ministry of Justice said it lacks information regarding judicial complaints dealing with communicable diseases.
The Ministry of Health referred the two reporters to the National Office for Family and Population, where they found that the most recent statistics on hereditary diseases went back to 2001.
We went back to the Health Ministry where we were told by the Director –General Nabil Ben Saleh that there were no recent figures on the spread of hereditary diseases. “There are no statistics, official figures or evaluations on the spread of hereditary diseases.”
Dr. Ben Saleh said this issue was not on the agenda of his ministry now as it had to deal with more pressing issues.
However, he confirmed that more couples were avoiding taking pre-marital tests, probably due to lack of awareness on their part.
He also admits to “violations” taking place at state hospitals due to weak monitoring. Society had a role to play in educating couples-to-be on the need to undergo pre-marital tests, he said.
Violations are also occurring at private clinics.
In November 2013, we accompanied a colleague to a clinic in the area of La Fayette in the capital. He asked the doctor to provide him with a pre-marital medical certificate. The latter refused saying he needed to carry out medical tests before issuing the report.
The man immediately came up with a story saying that he and his fiancée had already had sexual relations and as a result she became pregnant. The physician issued him with a certificate without any further questions.
In the city of Karm (the state of Tunis), our colleague Nada went to a private clinic to obtain a pre-marital medical certificate.
She told the doctor that she was in a hurry and would be getting married in less than three days. The doctor asked about her fiancé’s place of residence and she said he was out of the country and would return a day before the wedding. The physician provided her with the necessary papers after asking her to show him proof of identity for both parties.
Huda, 30, did not even bother to go to get the certificate. She sent her sister to the family doctor in the city of Radis in the state of Bin Aroos. The latter asked the doctor for two medical reports after giving him the names of couple.
Anis Bin Mohammad, a young man from the state of Al Qasrein, does not consider carrying out medical tests before getting married to a cousin to avoid spoiling the ceremony.
This investigation was completed with supported from Arab Reporters for Investigative Journalism (ARIJ) and coached by Hanan Zbeiss.