'Marriage with strings attached' Article published in The News International

The News on Sunday, 22 November, 2009
http://www.jang.com.pk/thenews/nov2009-weekly/nos-22-11-2009/dia.htm#4

awareness




Marriage with strings attached

Interestingly, the NWFP PHB 2009, which makes it mandatory for a prospective couple to get their blood tested for hepatitis C and thalassemia, envisages no mechanism for its implementation

By Ammara Farooq Malik

Six and a half years ago, if someone had asked me what a blood disorder was, I would definitely have 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.

It is high time that someone who has experienced the misery of having a child with a blood disorder spoke out. Every single person who is affected by a blood disorder, thalassemia or leukemia, wishes 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 trying to raise awareness about the difficulties faced by such families. Salman died advocating that at least premarital blood screening should be made compulsory in Pakistan.

Facts about thalassemia

- Pakistan has more than 1,50,000 thalassemia major cases.

- At least 10 per cent of Pakistan's population or one in every ten persons is a thalassemia minor carrier.

- There are 5,000 to 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.


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 (PHB) 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 Health Secretary Khushnood Akhtar Lashari, 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 the Parliamant yet and one hopes that further amendments to the proposal can still be considered before such a bill becomes a law.

Interestingly, the NWFP PHB 2009, which makes it mandatory for a prospective couple to get their blood tested for hepatitis C and thalassemia, envisages no mechanism for its implementation. There is a sanction imposed upon the Nikkah registrar that in the event that he is unable to register the test reports of the couple before the solemnisation 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 solemnise their marriage without such blood test results, that person shall be fined Rs 10,000 only.

The premarital blood screening 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.

Former Dean of Children's Hospital, Dr. Sajjid Maqbool, is of the view that making blood tests compulsory before marriage would be very useful. He also suggested that a media campaign should be launched to create awareness about such a proposal.

However, where there are supporters of the cause there are critics too. 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."

Saudi Arabian case

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. Many other Islamic states have similar laws on the point. In Saudi Arabia, blood screening for thalassemia before marriage became a 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 per cent of these couples decided to call off their weddings.But the point is: at least 11% did.

A Pakistani couple that decided to settle in the UAE and had a thalassemic child eventually decided to undergo a risky bone marrow transplant to cure their daughter. Now after almost six 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 UAE to have oneself tested before marriage…so by the time it's my daughter's turn to get married, we can make an informed decision."

In Pakistan, it would be difficult to lay down one uniform law for all provinces on this point, considering we have a very low percentage of high literacy rate and access to healthcare facilities. But according to Barrister Ahmad Farooq Malik, who is an active volunteer at a health and social awareness think tank: "What can be done here is that at the time of making the national identity cards, an evaluation of blood type and testing for thalassemia traits should be done. This will ensure that people can know their status of hereditary conditions before they get married."

The NWFP law does not force a high risk couple to not get married. However, it 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 two 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 six months only. According to health officials, "The disease spreads because of intermarriages. As a result, the disease is carried from generation to generation,"

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. 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 without 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 per cent increase in the Fiscal Budget 2009-2010 for the health sector. However, sources said that the programme for the prevention and control of thalassemia had been discarded due to the financial crunch. Philanthropists and NGOs must step forward at this stage after the passage 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.

Though this law may not be the only solution for protecting people from HIV/AIDS and hepatitis, it certainly is a way to avoid a hereditary disease which cannot 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, but this bill is a first step in the right direction. A parent whose child has thalassemia remarked, "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 is currently writing her memoir on dealing with bone marrow transplants and can be reached at ammarafm@gmail.com