Before you say ‘qubool hai’

August 23, 2010


When five-year-old Affifa goes to school she carries more than the burden of books on her shoulders. “My daughter was diagnosed with Thalassaemia, a blood disorder, at the age of three,” says Wajahat Ayaz, who works as an engineer at a leading power company in Karachi.

Affifa’s problems are compounded not only by the fact that her body generates an abnormal form of haemoglobin cells, but also by her rare blood group, known as the Bombay blood type. According to Dr Saqib H Ansari, chief of the Thalassaemia programme at the National Institute of Blood Diseases, there are only seven known donors in the country who share this blood group. “Patients like Affifa survive on blood transfusions, but it becomes a huge problem when one has a rare blood group because one can’t find matching donors,” Ansari says.

However, the little girl is lucky for now. Nuzhat, a woman of 40, is providing crucial life support for Affifa. “I will donate my blood to her as long as I live,” says Nuzhat. But what will happen after that?

Ayaz, who earns around Rs30,000 a month and spends close to Rs10,000 of that on monthly treatments for his daughter, says he can only pray that a miracle like Nuzhat will be around. However, that’s not the issue which torments him each day.

“If only I knew that we, the parents, would be the cause of her illness,” laments Ayaz, without saying anything about what he would have done had he known this fact beforehand.

Thalassaemia is a genetic blood disorder which a child inherits from their parents. “If both parents are Thalassaemia minor — that is, they carry the disease but it is not active in their system — there is a 25 per cent chance that their child will be a Thalassaemia major — an active patient –a 50 per cent chance that she will be a Thalassaemia minor and a 25 per cent chance that everything will be normal,” says Ayesha Mehmood, the spokesperson for the Fight Against Thalassaemia (FAiTh). Also, if a Thalassaemia minor’s partner is normal, their children, in all likelihood, will be born free of the disorder.


Ayaz supports recent initiatives taken in certain provincial assemblies regarding the nikahnama law that advocates testing for blood disorders like Thalassaemia, Hepatitis C and HIV/AIDS in couples before they marry. He suggests the government should make it mandatory to mention blood types on national identity cards so that potential donors can be identified.

But so far the Khyber Pakhtunkhwa provincial assembly is the only legislative body which has passed a bill making it mandatory for couples to carry out Thalassaemia and Hepatitis C tests before the marriage takes place. The law does not ban couples from getting married if they find out they are both, for example, Thalassaemia minor carriers, but it gives them the advantage of knowing what they’re getting into. Meanwhile, the Sindh Assembly has to date only passed a resolution urging the federal government to consider making such tests compulsory.

On July 08, 2010, the Punjab government’s Local Government and Community Development Department proposed eight amendments to the nikahnama law; these included complete medical check-up reports prior to marriage. However, the amendments were criticised because of the caveat that the nikahnama document must also be signed by the parents of the consenting adults and were consequently withdrawn.

Member of the National Assembly Sherry Rehman has strongly criticised the Punjab government’s move. Rehman fears the measure might increase the number of forced marriages in the country. “Having parents sign the nikahnama would have meant the return of the wali system for women. The Lahore High Court has a ruling against it,” she says. She added, however, that she was all for testing couples for disorders before marriage and would strongly advocate such a bill.

Meanwhile, Masood Alam, who is about to get married this year, voices another concern. He says that even if blood testing before marriage becomes federal law, it would be hard to convince families that it is a healthy measure. “I and my fiancée may agree, but our families might not want us to get tested because of social pressure and superstition,” Alam says.

Even Nuzhat, Affifa’s donor, says that girls in Pakistan already face a lot of problems getting married and the proposed changes to the nikahnama law may become an added hurdle.

Dr Ansari proposes a solution. “We can follow the Iran model, where the man is asked to get tested first,” he says, adding that the woman only need be tested if the man is found to be suffering from, for example, Thalassaemia minor.

Also, families can be convinced about the benefits of testing with a little persuasion, says Shahzad Shah, who married in 2009 and got himself and his fiancée tested before marriage. “After we told our families about the advantages, they themselves took us to get our blood tests done,” Shah says. He adds that today he is a proud father and his daughter has no genetic blood disorder.

Religious scholars say that while conducting blood tests is not a necessity before marriage, according to Shariah law there is no harm in doing so. Darul Uloom Karachi’s Mufti Asghar Rabbani and Jafferia Alliance’s Maulana Sheikh Hasan Salahuddin say tests can help identify problems that an unborn child might face, because in the end, the child has to suffer the consequences.

8 kids test HIV+ after blood transfusion

July 14, 2010


Jaipur: Eight children suffering from thalassemia were found to be HIV positive and 43 children were infected with Hepatitis C after the blood transfusion in Jodhpur.

A probe by the Thalassemia Society has revealed that 51 patients got infected during blood transfusion at the Ummed Hospital in Jodhpur. The glaring negligence was found after the Thalassemia society conducted lab tests on these children.

“The blood that is being transfused into the children may contain HIV strains. This is why when the blood tests were conducted on December 28, 2008, only five cases of HIV positive and 29 cases of Hepatitis Cwere identified among the kids. When the tests were conducted again in May by the SN Medical College, numbers increased from five to eight HIV positive cases and from 28 to 46 Hepatitis C cases, ” said Secretary Vipin Gupta.

“The thalassemia patient is dependent on blood transfusion. The danger of the wrong blood entering the body is always there. But what can we do?”, said a local resident.

Hospital authorities blame lack of critical medical facilities to detect impure strains in blood for the fatal error.

Preventive Health Bill moved in PA Couples to show Thalassemia, Hapatitis-C reports Ali Sheikh

October 3, 2009

Courtesy by:

PESHAWAR: The Government on Thursday, presented in the Provincial Assembly The NWFP Preventive Health Bill, 2009. According to the Bill a Nikah registrar before solemnizing the marriage shall obtain premarital medical test reports of both bride and bridegroom regarding Thalassemia and Hepatitis C. These premarital medical tests of the two dangerous diseases would be mandatory and would help in spreading health awareness and would educate the future parents about the diseases as if infected they may give birth to the children with these contagious fatal diseases. According to the bill the nikah registrar shall keep the record of the medical reports for at least three years from the date the marriage is solemnized. Similarly, the license of a nikah registrar who solemnizes a marriage without obtaining these medical will be cancelled.

According to the bill, if a person other than a nikah registrar solemnizes a marriage in which the medical reports are not presented, the person will be fined Rs. 10,000. MPA Saqibullah Khan Chamkani presented the bill. Meanwhile,

The Provincial Motor vehicles (NWFP) (Ammendment) Bill, 2009 was also presented in the House. According to the amendment made the offender may deposit the challan fee in ‘any bank’ . Before it was written in the bill that the offender can only deposit the challan fee in only National Bank of Pakistan and Khyber Bank. This will help the offender in finding a bank and thus to deposit the challan fee easily. Meanwhile, 15 resolutions were also presented in the Provincial Assembly on Thursday.

Out of which eight resolutions were passed unanimously while others were either withdrawn by the movers or were lapsed because the movers were not present.

Sickle Cell and Thalassemia patients can’t get proper treatment in Ontario

May 31, 2009


The Coalition to Save Our Young Adults called on the Ontario government Monday to fulfill its responsibility to the Sickle Cell and Thalassemia community by providing appropriate, comprehensive care for adult patients.

Since 2004, the Coalition has met on several occasions with hospital staff and government officials over the critical lack of space in the Thalassemia and Sickle Cell Clinic at Toronto General Hospital. In spite of repeated pledges to improve access to care and the level of service, one physician said, “The situation has gone from a crisis to a catastrophe.”

About 150 young adults over the age of 18 have no place to go for care. In the last five years, there have been around 15 Toronto area patient deaths, many of which the Coalition said were preventable. Ironically, many of these deaths were patients who had survived blood transfusions in the 1980’s that were contaminated or at risk for HIV and Hepatitis C.

Thalassemia is an inherited blood disorder in which the body is unable to make normal functioning hemoglobin, a protein in the blood required for the transportation of oxygen. Without regular blood transfusions, persons affected are unable to survive. A generation ago, patients rarely lived beyond childhood. Thanks to medical advances, they’re living healthy lives today, pursuing careers, continuing their education and raising families.

For years, Thalassemia patients in Canada had access to the highest standard of care in the world. Unfortunately, provincial funding for the only adult program in Toronto has been capped at 99 patients since the late 1990’s. Once pediatric patients turn 18, they have no place to go for treatment, can’t get the appropriate monitoring for adult care or the right support for emergency cases.

When adult patients develop complications, they are admitted to emergency departments at adult hospitals where their records and hospital files are not available. Physicians are often unaware of problems associated with Thalassemia, so complications develop into more serious conditions.

In 2003, the previous Toronto District Health Council, one of 16 District Health Councils (DHCs) in Ontario developed to advise the Ministry of Health and Long-Term Care on health system issues of importance to Toronto, concurred with the acute need for coordinated transition from pediatric to adult care.

“The situation has seriously deteriorated since that time evidenced by the death of our young patients,” said Riyad Elbard, president Thalassemia Foundation of Canada. “We have lost 15 patients, which we think many of them may be due to improper and inadequate care.”

Sickle cell disease (SCD) is a life threatening, hereditary blood disorder that causes malformation of red blood cells that become distorted when they transmit oxygen through the body. Instead of staying soft and round, cells become hard and shaped like a sickle or crescent moon, which can get clogged in blood vessels causing unpredictable episodes of excruciating pain that can last for weeks, tissue damage in any organ of the body or even a stroke.

Even with constant care, SCD can be fatal. Although there is no cure, blood transfusions and pain killers makes it possible for patients to better cope with complications. In Canada, SCD affects in 1 in 600 people of African descent.

In 1967, Sherman Moore was diagnosed with SCD at Toronto General Hospital, where he is a patient in the Thalassemia and Sickle Cell Clinic. As a result, he’s felt fortunate to be living in a country and a province with a good health care system. “When you have SCD and a crisis hits, you may often need emergency care,” said Moore. “This is a critical time where complications could set in if treatment is delayed.”

With longer wait times now, emergency staff having no access to medical records and doctors reluctant to administer narcotics for fear a patient may be a drug addict, a visit to an emergency room for a Sickler in crisis today can be a very trying and painful experience.

If a patient can be treated with narcotics, intravenous fluids and oxygen as soon as possible, it can prevent further complications from developing. If not, liver or kidney damage could occur. Patients might need blood transfusions. Despite the fact that Moore has spent many hours in emergency rooms waiting for treatment, he hasn’t experienced serious complications. But others have.

Moore admitted he’s seen a definite decline in emergency room service. Lately, he’s waited 4 or 5 hours to see a doctor. He’s learned to take painkillers with him so he can administer his own medication in the emergency room, if so required. Often, he said, treatment is delayed after seeing a health care professional because of concern that the patient could be a drug addict, due to the addictive nature of narcotics.

“That’s why we believe that adult patients with SCD and Thalassemia deserve the same level of care as those with other diseases,” said Moore. “Adult patients should have access to high quality comprehensive care provided in an adult setting.”

Moore is concerned and said, “It’s unacceptable that many young adults cannot get access to the adult clinic at Toronto General Hospital.”

Victoria Idowu also suffers from SCD and, like Moore, is a patient in the Thalassemia and Sickle Cell Clinic at Toronto General Hospital. For the first 16 years of her life, she said, “I received wonderful and excellent care at the Hospital for Sick Children.” But once she turned 19, Idowu left behind the security and safety of  SickKids.

For the last year, she’s been placed in an adult hospital that she said struggles to meet her needs due to the lack of funding (Idowu’s doctor is only able to see Sicklers four days a month.) and knowledge of how to treat adults suffering from this disease.

Based on her emergency room experiences, Idowu doesn’t feel the staff knows much about Sickle Cell and, therefore, doesn’t know how to treat patients in crisis. “We need help but they just don’t know how to give us the help we need,” she said. “When we’re in pain we need to be attended to promptly to prevent complications.”

In other settings, with both Thalassemia and SCD, emergency procedures would be in place in the emergency room. So if a patient comes in to emergency, the right procedure can be put into place, rather than challenging patients as to whether or not they’re actually in pain. With ongoing monitoring, however, patients are less likely to end up in emergency in the first place.

“We have Thalassemia patients that by the time they get to emergency, they’re having a heart crisis,” said Durhane Wong-Rieger, President and CEO, Anemia Institute for Research and Education. “They may not recover from that.”

Over the last 10 years, the Coalition, which includes the Anemia Institute for Research and Education, Thalassemia Foundation of Canada, Seed of Life, Sickle Cell Association of Ontario and Camp Jumoke, has met with hospitals, regional health authorities and with the Ministry of Health pleading for additional resources for adult Thalassemia and Sickle Cell care.

Although the response has often been sympathetic, there has been no increase in resources or positive action on the part of the hospitals or the Ministry. Meetings with the regional health authorities resulted in a report published in 2003, but no action on the basis of that plan.

“The deaths of young adults with these diseases in Canada are occurring at a time when other countries, with comparable populations but comprehensive care programs, have had few or no deaths,” said Wong-Rieger.

Yesterday, the Coalition called on the Minister of Health to honour the commitment made in 2005 and repeated in 2007 to adequately resource the adult Thalassemia and Sickle Cell clinic at Toronto General Hospital so that it can provide the highest level of comprehensive care, treatment and support to the approximately 150 adult patients now being denied access.

Patients outside the GTA and the province also have difficulty accessing comprehensive care. Janet Mulgrave, who is the president of the Sickle Cell Association of Ontario, said her group gets calls from all over Canada from people who can’t find proper care. In Ontario, the Association is trying to develop a Sickle Cell program in the Windsor area for a large patient population who don’t have access to proper care.

“We try to get patients care quickly thereby decreasing the chances of them going to an ICU (Intensive Care Unit) later on,” said Mulgrave. “Because we all know how expensive an ICU bed can be. So that’s the point of having access to care in a timely manner.”

Study shows awareness about premarital screenings lacking

May 5, 2009

Courtesy by:

JEDDAH: A recent study conducted by the fourth-year medical students at the King Abdulaziz University (KAU) suggests a general lack of awareness about the importance of premarital tests and how they help reduce the incidence of recessive gene disorders, such as thalassemia.

The study called on marriage officials to make sure prospective couples abide by the law and are pre-screened for the presence of shared recessive genes, as well as HIV and hepatitis B and C. A ministerial decision in 2004 obliged prospective couples to undergo genetic testing. In 2008, sexually transmitted infections were added to the mandatory testing.

The KAU study urges more resources be devoted to testing centers, including more staff and equipment. Awareness campaigns, the study says, play an important role in explaining to the general public the importance of pre-marriage screenings.

Last year, the Ministry of Health revealed that over a 10-month period, 49 people tested positive for HIV/AIDS; 3,250 people were found to carry hepatitis B or C; 545 people had the recessive gene for the common blood disorder thalassemia (meaning that their children were at a greater risk of inheriting the gene); and 8,251 of those screened had thalassemia.

The study said premarital tests and awareness centers have so far succeeded in finding out cases but not in changing the view about the test as a tool that can prevent potential health risks.

The study analyzed public perceptions before and after conducting an awareness campaign to evaluate if such campaigns are worthwhile. It surveyed three groups — students (the largest group at 3,479), 645 health care workers, and 655 people who visited these testing centers.

About 38.5 percent of those surveyed said their parents were cousins. The study found that before the awareness campaign, 91.9 percent of the student group did not have a clear idea about why the tests were necessary.

Out of the surveyed health care workers, 77.4 percent said they had not undergone any specialized training pertaining to these premarital tests. The average of awareness jumped from around 8.5 percent to 20.3 percent after the health awareness campaign.

Families and friends seemed to be the main source of information about the tests before the awareness campaign; this was followed by newspapers and TV.

Awareness in the university sample was more among women compared to men and better among students in science-related subjects compared to students of arts. Awareness was also greater among students whose parents were university educated and earned over SR5,000.

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