The following article was the first advocacy article written by Ammara Farooq Malik and published in The News on Sunday on 24th November, 2009.
Ammara Farooq Malik
Six and a half years ago, if some one had asked me what a blood disorder was, I would have definitely shown my ignorance. My family had no history of blood disorders and so I could not have imagined in a million years what was going to happen to my own child…
|Facts: Pakistan has more than 1,50,000 thalassemia major casesAt least 10% of Pakistans population or 1 in every ten persons is a thalassemia minor carrier.There are 5,000- 6,000 thalassemia babies born every year.The estimated birth rate of thalassemia-affected children is 1.3 per 1,000 live births.At this estimated rate, the number of thalassemia cases will be doubled to over 200,000 in the next 10 years.The national exchequer incurs an expenditure of approximately Rs. 130,000 per thalassemic child annually. These are only estimated numbers, the actual numbers (including the unreported cases, the deaths following birth and the cases involving other blood disorders such as enzyme deficiencies) are much higher.|
It is high time that someone who has experienced the misery of having a child with a blood disorder speak out as well. Here I would like to elaborate that every single person who is affected by a blood disorder, thalassemia or leukemia, wishes from the bottom of their hearts that no one should have to go through so much pain. It’s just that very few people who are directly affected by this disease have the courage to put their depression and misery aside to speak up for others. One such person was 24 year old Salman Mahmood, a thalessemic, who died this October while trying to raise awareness about the difficulties faced by such families. Salman died advocating, like many others including my humble self, that at least premarital blood screening should be made compulsory in Pakistan
A cry of joy ran through the families of children who heard this November that the NWFP Government had finally passed the NWFP Preventive Health Bill 2009. The Sindh Government had also passed a similar resolution in October to make blood testing compulsory before a couple decides to get married. According to the Health Secretary Khushnood Akhtar Lashari, who spoke about the matter in August, the government is working on legislation for compulsory blood screening before marriage to protect newborn babies from thalassaemia and added that the bill in question had already been sent to the National Assembly Standing Committee. However the matter has not been raised for further debate in Parliamant yet and one hopes that further amendments to the proposal can still be considered before such a Bill becomes federal law.
Deciphering the pros and cons of the NWFP Preventive Health Bill (PHB) 2009
Let me first begin by lauding the spirit of this Bill that was proposed by ANP member Saqibullah Khan Chamkani and reiterate that only those directly affected by the scourge of these deadly diseases can fully appreciate the value of such a piece of legislation. However, there is definite room for improvement and further deliberation if we want this noble spirit to bear practical fruit.
Interestingly, the NWFP PHB 2009 which makes it mandatory for a prospective couple to get their blood tested for Hepatitis C and thalassemia traits creates no mechanism for the implementation of the same. There is a sanction imposed upon the Nikah registrar that in the event that he is unable to register the test reports of the couple in question before the solemnization of marriage, he will be liable to have his licence as registrar revoked. If, however, the couple decides to by pass the registrar and get another individual to solemnize their marriage without such blood test results, that person shall be fined Rs. 10,000 only.
For starters, the concept of premarital blood screening itself should not be criticized as a simple blood test itself really can save not just one life but the lives of all the members of such a family which has to deal with the financial and emotional difficulties of hereditary blood disorders.
When I discussed the proposal of making blood tests compulsory before marriage with the ex. Dean of Childrens Hospital, Dr. Sajjid Maqbool, he was of the view that it would be very useful to have such a law. Extending his help in whichever way possible to further such a cause he also suggested that the awareness about such a proposal should be made in the electronic media as well, as nowadays, this is the most effective means of reaching out to the nation.
However, where there are supporters of the cause there ten times more critics. A famous hematologist in Lahore, on condition of anonymity, gave a half hearted response to such a proposal saying “How can such a law be made? It would be impossible for everyone to get their blood tested. It’s so expensive! Such laws suit other countries more than Pakistan!”
|Case Study: Saudi Arabia Granted that Pakistan has a host of problems but one of them does happen to be the rise in the number of thalassemia and other blood related disorders. If one must compare the position of Pakistan with other countries then among many other Islamic states that have similar laws on the point, a relevant example to quote can be that of Saudi Arabia, where compulsory blood screening for thalassemia before marriage became law in 2004. Though initial research findings of the premarital screening programme under the 2004 legislation in Saudi Arabia, which has included tests for AIDS and hepatitis since 2008, are rather sobering, one has to give this programme more time to show positive results. According to a study published in 2007, of 488,315 individuals tested, 2,375 couples were rated “high-risk.” A total of 89.6 per cent of these couples got married despite the risk involved while only 11% of these couples decided to call off their weddings. But the point is: at least 11% did. According to Dr Shadia Matbouli, a physician at King Abdulaziz University Hospital in Jeddah, people in the Saudi Kingdom were sceptical at first and many complained about the requirement of blood screening. However, now the process is fairly well accepted since a lot of families with generations of consanguineous marriages among their kin have suffered greatly from these diseases and so appreciate this compulsory blood screening.|
| Pakistanis from U.A.E. support Bill: A Pakistani couple who has decided to settle in the U.A.E. and who had a thalassemic child eventually decided to undergo a risky bone marrow transplant to cure their daughter. Now after almost 6 years of good health, the parents are keen to help others to fight this disease as well. When contacted to express their views about such a legislation in Pakistan which can help control thalassemia, the mother remarked, “It would be wonderful if such a law can be passed in Pakistan. Thank God, it’s compulsory in the U.A.E. to have ones self tested before marriage…so by the time it’s my daughter’s turn to get
married, we can make an informed decision…”
According to the number of patients treated at the Thalassemia Centre in Dubai, the blood disorder affects one in 12 people in the UAE, with Emiratis and Pakistanis, being affected the most. Though blood screening is compulsory before marriage in the U.A.E. as well, the authorities are considering making it compulsory for university students to get themselves screened at any time while they are in University and before they get involved with another possible carrier of thalassemia. This seems like a logical consideration because naturally by the time many couples are serious enough to get married, they are willing to undertake the risks involved in having a thalessemic child and so go ahead with the marriage in any case.
In Pakistan by comparison, it would be difficult to lay down one uniform law for all provinces on this point, considering we have a very low percentage of the population which reaches university and a high illiteracy rate in any case. But according to Barrister Ahmad Farooq Malik who is an active volunteer at SEPLAA ( a health and social awareness think tank) and a parent who understands the importance of such a legislation, “What can be done here is that at the time of the making of the national identity cards of the entire population, a requirement of the process should be an evaluation of blood type and with it testing for thalassemia traits. The issue of ‘stigmatization’ as critics have pointed out can therefore be averted at least to the extent of thalassemia carriers who are not carriers of HIV. This will ensure that people can know their status of hereditary conditions before they are planning to get married as opposed to right before their marriage…by which time it may be too late or difficult to change ones mind.’
The NWFP law does not force a high risk couple to not get married however focuses more on letting the couple be informed about the consequences of their decision. The law further requires the registrar to keep the blood test reports for a period of two years. The problem with this requirement is that medically a report for identifying thalassemia traits may remain valid even after 2 years but a test to identify Hepatitis may not be valid even after a few months. Saudi Arabia requires men to get themselves tested for thalassemia and HIV every time they are about to enter into wedlock and acknowledges such blood test reports to be valid for a period of 6 months only.
It’s doubtlessly easier to enforce such a law in places such as U.A.E., Iran, Saudi Arabia or even Malaysia but where there are all sorts of people living together in Pakistan, satisfying the intellectual hunger of every single Pakistani and emancipating the uneducated can be a cumbersome job. According to health officials, “The disease spreads because of intermarriages and most of the victims are Baloch, Pathan, Memon and other such communities where intermarriages are common. As a result, the disease is carried from generation to generation,”
Ignorance begets ignorance and enlightenment begets enlightenment. If we want to educate the people about the menace of HIV, hepatitis and the misery of a life long blood disorder such as thalassemia, then we will have to break the shackles of profound ignorance once and for all. When the family planning initiatives were started by the Government of Pakistan in the 1980s, the narrow minded individuals were determined to oppose any such steps calling it an ‘invasion of privacy’ and a step to undermine the importance of the Islamic obligations under marriage. The point to hammer home here is: Can having fewer children and giving them a better quality of life by giving them two square meals and a decent education rather than split the same over 4-8 children, be an ‘undermining of the Islamic obligations under marriage? Similarly can having compulsory premarital blood screening so as to save a new generation a life long misery of transfusions and /or the suffering through contagious or hereditary disease, be an infringement of the ‘right to privacy’ under art .14 (1) of the 1973 Constitution.? In short can the attempt to save a human life be equated with an infringement of a prospective married couple’s ‘right to privacy’?
Mufti Kafayatullah a JUI member validly opposed the NWFP Bill on the grounds that it would be very difficult to screen people in places such as Kohistan and Chitral. One can argue logically here that it is the responsibility of the government to allocate funds within the provincial budgets to make allowance for such compulsory screening. There is no point in making a law where there can be no possibility of its implementation rather where it would be impractical to abide by such a law. Naturally the person who will have to bear the brunt of such a legal violation under the PHB 2009 will be the nikah registrar or any other such person who will solemnize the marriage despite not having the requisite test results. When the poor and possibly uneducated residents of Kohistan and Chitral will not be able to afford the tests themselves then they may work their way around the law and get married anyway, giving rise to corruption and legal violations.
The government allocated a 20% increase in the Fiscal Budget 2009-2010 for the Health sector. However sources have confirmend that the programme for the prevention and control of thalassemia which was initially proposed has been discarded due to the financial crunch and officials considered the project to be of lesser priority. Philanthropists and NGOs must step forward at this stage after the passing of the PHB 2009 to urge the government to allocate funds for the implementation of this law because without it, the spirit of this law and the morales of 150,000 thalassemia major patients and their families will indeed be crushed.
While many thalassemics welcomed the news of the Sindh and NWFP governments making blood tests compulsory before marriage, one person remarked, ‘Is the blood test compulsory for just the oppressed males or is it compulsory for both the genders?’ Another person who was trying to make sense out of the law questioned, “Okay, so I have to get my prospective wife tested and then what?” Despite not being a women’s rights activist and speaking strictly with the view point of improving health systems, this wonderful nation can never move forward where there is such male chauvinism and yes, this can further cause problems for women. The solution lies not in the abandonment of this law but in creating it’s awareness and benefits. The need of the hour is that men should be educated that though women are not biologically responsible for giving them sons yet it can be the combination of the genes of both parents that can give them a child with a hereditary disorder. Here men and women can play an equal role in determining the genetics of a child.
Whereas one can argue that this law may not be the only solution for protecting people from HIV/AIDS and Hepatitis, it certainly is the only way to avoid a hereditary disease which can not be checked by safe intercourse practices, women’s empowerment or accessibility of quality services.
There may be doubts about the law’s implementation and effectiveness and the people may be justified in not trusting the government or it’s laws but what the critics need to realize is that this Bill is a first step. Without a doubt this needs to have measures to ensure implementation but perhaps what is needed most now is the awareness of such legislation and the benefits of having premarital blood screening. No amount of legal sanction can force an unconvinced couple to acknowledge the benefit of the compliance of such a law. And no law can please everyone. If it did, there would be no lawyers!
A parent whose child has thalassemia remarked, “Is it really possible that they are making such a law to force couples to get tested before marriage in Pakistan?! This is a very positive step! This can save so many people the agony of having a child who has to have a life of transfusions and pain…and who may possibly die just by the age of 10.”
What such a health policy gives a couple is a CHOICE…a choice many couples were not able to have. Couples may feel that they still want to go ahead and get married despite knowing that they are thalassemia or other blood disorder carriers but then they will become solely responsible for the health concerns of their off springs. If the effects of thalassemia and other blood disorders can be fully explained then hopefully with more awareness, not many couples will be willing to live with this guilt of knowingly bringing a child in pain into this world.
The writer is an academic lawyer and founder of SEPLAA , a health and social Think Tank. She can be reached at firstname.lastname@example.org