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
Sunday, November 22, 2009
Sunday, November 15, 2009
Leukemia in Lebanon, remembrance in Lahore: Part 4 concluded
My heart missed a beat as I clicked onto the message…It was a message delivery failure. I had apparently written the address wrong. I was a little annoyed with myself but then decided to email again.
The next day there was no electricity the whole day, the UPS was not working either. There were terrorist attacks inside Lahore and I was beginning to think….If there was a person who had a life threatening problem or a disease and needed to get to the hospital, how would that person be able to dodge the terrorists and reach the hospital in time? That person would never get another chance, even if he had the money, even if he had the will. Who are these people who don’t understand the basic expectation of a human being from life? The fair expectation to have life and health and happiness…
I was very disturbed that day. I didn’t understand it. Why was this all happening? What is the meaning of all of this? What is our role in this great design? In which there is the yearning for health and happiness, the artificial standards ordained by ‘money’ and the politics of terror?
After watching the live coverage of the terrorists’ attacks the whole day, I finally remembered I had to check my mail. Late at night I opened my inbox and there it was, a message from Dana. It was a three liner, written in bad English but sounding exactly the way she used to speak.
These were her words:
‘HI MY DEAR DO YOU BELIEVE THAT TODAY I LOOKED A LOT FOR UR MAIL I DIDN'T FIND IT AND LOOK YOU SENT FOR ME,WHY TO KNOW MY NEWS WHAT YOU WANT TO HEAR ABOUT ME I AM VERY SAD I HAVE A BIG LOST BUT I GAINED AN ANGEL IN THE HANDS OF GOD...ALLAH YERHAMA YA RAB SHE LEFT US LAST SUNDAY ON OCTOBER 4TH.PLEASE TELL ME ABOUT YOUR GIRLS..... ‘
I knew that Yasmin was going to die but now that I heard the news, I felt this sickness surge from the pit of my stomach, engulfing me completely. I think I would have preferred not hearing about her death.
The next day I wrote back to Dana.
‘My dear Dana,
I received your email yesterday but I had no strength to reply. I was afraid of hearing this sad news from you and to be honest, I did not want to call you up because I could not bear the thought of hearing about Yasmin's pain. I wonder if you will understand this, but I even thought of not contacting you at all so that , that way Yasmin lived forever in our memories because we would never hear about her passing away.
I can't explain how much you and your family meant to all of us in the most difficult period of our lives. Yasmin was like my Bilquis to me. We may be strangers in so many ways and we have such a lot of distance between us, but because of the friendship that our little daughters had together and because of the friendship that you and I had together, in those haunting days in the hospital, I feel I am closer to you than I am to any of my closest friends.
I had dreams about both Yasmin and Bilquis together...I will never forget her resemblance to Billy in many ways, Tammys being like our Dina and frankly, your being so much like me. I often felt that your family was so much like ours. Maybe that is why, your loss seems like my own.
As I write this, I feel like I am writing about my own daughter not being there anymore. I pray to God that you come out of all this to live life to the fullest with your Tammy. She needs you too. And you need her to remind you, everyday of your life, that God gave her to you to comfort you in your grief and to give you joy again in your life.
As for Yasmin, she will be living in a beautiful house in heaven where she can play with the flowers and the butterflies and always look pretty and have no pain. She is in a much better world and God will take care of her better than anyone on earth...but then you already know all of this. And you know what she will do in her beautiful little house? She will pray for you and Tammy and Haitham so that you all meet again. I pray to Allah that you do and when you meet, you have a life time of happy memories to tell her about.
I really do not have the courage to call you just yet. My husband and I are deeply affected by this news and we both really want to talk to both of you. Can you give me your husband’s cell number? My husband really wants to talk to him. I will call you after some weeks...I hope you can heal a little by then. If you would like to write about anything about the last four months that might help you to feel better, then I would be so thankful that you decided to share with me. If not, I will completely understand.
I would like to keep in touch with you, if that's okay
With my deepest condolences, prayers and love...’
A week has passed since that email and I never heard back from Dana. I know now that she will never contact me again. We shared something in pain, but we have almost nothing in common now. On the contrary, it might hurt her more if she stayed in touch…I still wish her all the best and wonder if our paths will ever cross again in life.
The next day there was no electricity the whole day, the UPS was not working either. There were terrorist attacks inside Lahore and I was beginning to think….If there was a person who had a life threatening problem or a disease and needed to get to the hospital, how would that person be able to dodge the terrorists and reach the hospital in time? That person would never get another chance, even if he had the money, even if he had the will. Who are these people who don’t understand the basic expectation of a human being from life? The fair expectation to have life and health and happiness…
I was very disturbed that day. I didn’t understand it. Why was this all happening? What is the meaning of all of this? What is our role in this great design? In which there is the yearning for health and happiness, the artificial standards ordained by ‘money’ and the politics of terror?
After watching the live coverage of the terrorists’ attacks the whole day, I finally remembered I had to check my mail. Late at night I opened my inbox and there it was, a message from Dana. It was a three liner, written in bad English but sounding exactly the way she used to speak.
These were her words:
‘HI MY DEAR DO YOU BELIEVE THAT TODAY I LOOKED A LOT FOR UR MAIL I DIDN'T FIND IT AND LOOK YOU SENT FOR ME,WHY TO KNOW MY NEWS WHAT YOU WANT TO HEAR ABOUT ME I AM VERY SAD I HAVE A BIG LOST BUT I GAINED AN ANGEL IN THE HANDS OF GOD...ALLAH YERHAMA YA RAB SHE LEFT US LAST SUNDAY ON OCTOBER 4TH.PLEASE TELL ME ABOUT YOUR GIRLS..... ‘
I knew that Yasmin was going to die but now that I heard the news, I felt this sickness surge from the pit of my stomach, engulfing me completely. I think I would have preferred not hearing about her death.
The next day I wrote back to Dana.
‘My dear Dana,
I received your email yesterday but I had no strength to reply. I was afraid of hearing this sad news from you and to be honest, I did not want to call you up because I could not bear the thought of hearing about Yasmin's pain. I wonder if you will understand this, but I even thought of not contacting you at all so that , that way Yasmin lived forever in our memories because we would never hear about her passing away.
I can't explain how much you and your family meant to all of us in the most difficult period of our lives. Yasmin was like my Bilquis to me. We may be strangers in so many ways and we have such a lot of distance between us, but because of the friendship that our little daughters had together and because of the friendship that you and I had together, in those haunting days in the hospital, I feel I am closer to you than I am to any of my closest friends.
I had dreams about both Yasmin and Bilquis together...I will never forget her resemblance to Billy in many ways, Tammys being like our Dina and frankly, your being so much like me. I often felt that your family was so much like ours. Maybe that is why, your loss seems like my own.
As I write this, I feel like I am writing about my own daughter not being there anymore. I pray to God that you come out of all this to live life to the fullest with your Tammy. She needs you too. And you need her to remind you, everyday of your life, that God gave her to you to comfort you in your grief and to give you joy again in your life.
As for Yasmin, she will be living in a beautiful house in heaven where she can play with the flowers and the butterflies and always look pretty and have no pain. She is in a much better world and God will take care of her better than anyone on earth...but then you already know all of this. And you know what she will do in her beautiful little house? She will pray for you and Tammy and Haitham so that you all meet again. I pray to Allah that you do and when you meet, you have a life time of happy memories to tell her about.
I really do not have the courage to call you just yet. My husband and I are deeply affected by this news and we both really want to talk to both of you. Can you give me your husband’s cell number? My husband really wants to talk to him. I will call you after some weeks...I hope you can heal a little by then. If you would like to write about anything about the last four months that might help you to feel better, then I would be so thankful that you decided to share with me. If not, I will completely understand.
I would like to keep in touch with you, if that's okay
With my deepest condolences, prayers and love...’
A week has passed since that email and I never heard back from Dana. I know now that she will never contact me again. We shared something in pain, but we have almost nothing in common now. On the contrary, it might hurt her more if she stayed in touch…I still wish her all the best and wonder if our paths will ever cross again in life.
Saturday, November 14, 2009
Leukemia in Lebanon, remembrance in Lahore: Part 3
I did end up calling her then which was three months ago. Dana was driving the car and the kids were sitting behind her. I could hear them, screaming and shouting and laughing aloud in the background…And Dana explained that they were going to see a saint just then.
‘We’re going to all the saints in the city, these days. Yes, yes, things are good, things are fine.’ And then in an undertone, almost a whisper, she added, ‘I will write to you …. I will write to you about everything. I have to go!…’
She never wrote back.
She never wrote and I just waited wondering. I never stopped thinking about Yasmin. I knew that while we were going on living our lives doing the rounds of the hospital, the Lebanese family had not been fortunate to have that second chance at health, the chance that perhaps we were getting, with my daughter’s life.
I wrote another email to her telling her that I hadn’t forgotten Yara. I could not forget Yasmin, ever. We had lived together, both Yasmin and my daughter…Dana and I, in the same room in the hospital for a week. They were our room mates. Our children had played together, laughed together through the pain, given each other hope and given each other something to be happy about through the agonizingly long days. They shared that little something to look forward to, some little story, some little cartoon to watch together or some little game to play together. I’m so thankful to God, that my daughter had those few days of happiness in the hospital because of that little girl Yasmin because my daughter was distracted from her own pain and her own suffering, her own needles being pierced through her, the pain of the chemotherapy, and the pain of not being at home like a normal child. I would have to be cruel to forget Yasmin…
Four months had passed since Dana’s family had left Italy to move back to Lebanon. There was this nudging feeling that I needed to find out what had happened to Yasmin. And I was subconsciously putting off calling her for fear that I might catch Dana in the middle of caring for Yara in her last minutes or last moments. And I didn’t want to disturb her. I didn’t want to intrude upon those last moments.
My husband urged me to call. Why aren’t you calling up Dana, don’t you want to call? And I asked myself, to hear about what? I know Yara was going to die but how do I ask Dana to confirm, that which I know is the inevitable?
I decided to send a one liner email asking how she was. The next day I got a reply...
‘We’re going to all the saints in the city, these days. Yes, yes, things are good, things are fine.’ And then in an undertone, almost a whisper, she added, ‘I will write to you …. I will write to you about everything. I have to go!…’
She never wrote back.
She never wrote and I just waited wondering. I never stopped thinking about Yasmin. I knew that while we were going on living our lives doing the rounds of the hospital, the Lebanese family had not been fortunate to have that second chance at health, the chance that perhaps we were getting, with my daughter’s life.
I wrote another email to her telling her that I hadn’t forgotten Yara. I could not forget Yasmin, ever. We had lived together, both Yasmin and my daughter…Dana and I, in the same room in the hospital for a week. They were our room mates. Our children had played together, laughed together through the pain, given each other hope and given each other something to be happy about through the agonizingly long days. They shared that little something to look forward to, some little story, some little cartoon to watch together or some little game to play together. I’m so thankful to God, that my daughter had those few days of happiness in the hospital because of that little girl Yasmin because my daughter was distracted from her own pain and her own suffering, her own needles being pierced through her, the pain of the chemotherapy, and the pain of not being at home like a normal child. I would have to be cruel to forget Yasmin…
Four months had passed since Dana’s family had left Italy to move back to Lebanon. There was this nudging feeling that I needed to find out what had happened to Yasmin. And I was subconsciously putting off calling her for fear that I might catch Dana in the middle of caring for Yara in her last minutes or last moments. And I didn’t want to disturb her. I didn’t want to intrude upon those last moments.
My husband urged me to call. Why aren’t you calling up Dana, don’t you want to call? And I asked myself, to hear about what? I know Yara was going to die but how do I ask Dana to confirm, that which I know is the inevitable?
I decided to send a one liner email asking how she was. The next day I got a reply...
Wednesday, November 11, 2009
Leukemia in Lebanon, remembrance in Lahore: Part 2
Continued from Part I
We stayed on in Italy where my daughter was being treated. I emailed Dana once after our last meeting, hoping to get a reply but she never did. I of course had no complaints. I was sure that she must be busy rushing from one hospital to the other, bringing Yasmin home for the few moments of respite that they could get in the midst of all the medical tests, nausea and discomfort. They would be trying their best to cherish those few moments of relief they could get away from the hospital, by seeing the two little sisters playing together.
My heart goes out to both of them, to both little Tammy and little Yasmin because they were like my own daughters. And I know that when Dana and Haitham saw my daughters together there was this deprived look in their eyes, a longing and a certain yearning to see their own daughters happy and together for many years to come.
Though my own daughter was going through a very difficult period, it was probably that suffering that brought us together, a family from Pakistan and a family from Lebanon, together in a strange world in Italy.
I can only imagine what could have happened in the past four months. Yasmins blood counts must have started dwindling. She must have started losing weight, must have lost her appetite. And Dana must have been running after her ‘Please eat Ysmin, please eat. Eat so that you can be strong. PLEASE. Please….please.’
A month after they had left. I secretly thought that maybe Yasmin wouldn’t have died just yet and maybe things were not so bad. And so maybe I could call them…
We stayed on in Italy where my daughter was being treated. I emailed Dana once after our last meeting, hoping to get a reply but she never did. I of course had no complaints. I was sure that she must be busy rushing from one hospital to the other, bringing Yasmin home for the few moments of respite that they could get in the midst of all the medical tests, nausea and discomfort. They would be trying their best to cherish those few moments of relief they could get away from the hospital, by seeing the two little sisters playing together.
My heart goes out to both of them, to both little Tammy and little Yasmin because they were like my own daughters. And I know that when Dana and Haitham saw my daughters together there was this deprived look in their eyes, a longing and a certain yearning to see their own daughters happy and together for many years to come.
Though my own daughter was going through a very difficult period, it was probably that suffering that brought us together, a family from Pakistan and a family from Lebanon, together in a strange world in Italy.
I can only imagine what could have happened in the past four months. Yasmins blood counts must have started dwindling. She must have started losing weight, must have lost her appetite. And Dana must have been running after her ‘Please eat Ysmin, please eat. Eat so that you can be strong. PLEASE. Please….please.’
A month after they had left. I secretly thought that maybe Yasmin wouldn’t have died just yet and maybe things were not so bad. And so maybe I could call them…
Tuesday, November 10, 2009
Leukemia in Lebanon, remembrance in Lahore: Part I of the Italian journey
I recently found out what became of a dear little girl Yasmin (I've changed her name to protect her identity). I thought I'd share a little bit about her here since she was supposed to have a bone marrow transplant...
As I write this my heart is filled with a sadness I cannot explain in words. I can still picture Dana and Haitham, the Lebanese couple who had an ailing eight year old daughter, Yasmin, being brought in to the hospital, the Policlinico San Matteo, in
After spending a month in the Italian hospital and going through chemotherapy for her chronic leukemia, the doctors in
I think some amount of reason prevailed and Dana and Haitham decided then that they would rather go back home to
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