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More on thalassemia
Dr A Q Khan
Monday, June 04, 2012
From Print Edition
I would like to share some of the comments I received on my article of May 21. Even though thalassemia is a serious, sometimes fatal, disease, if it is properly controlled the patient can live a normal life. Treatment is expensive and here the golden rule: “Prevention is better than cure” applies.
As an aside I would first like to comment on Yaum-e-Takbir, May 28, 1998, when we became a nuclear power – the seventh in the world and the first in the Islamic world. I did not write a separate column on the subject since it is now an old story. That was 14 years ago and we should now look forward, not back. Even though the country was provided with a formidable nuclear and missile defence, our politicians found in it only a golden opportunity for merry-making. Instead of putting all their energy and efforts into developing the country by making use of the abundant talent and rich resources available, our rulers saw fit to plunder the country. Fakirs have become billionaires and the common man is starving – no food, no clothes, no housing, no pride – all beyond their means. Drone attacks have become a daily routine.
I would like to elaborate on two emails I received, one from Mr Kashif Mulla and the other from a friend in Multan, Dr Abdul Rashid Seyal. The former reached me through a friend of mine.
Dr Seyal is a cardiologist. He has written many useful books on medicine and religion. Some of these were discussed in one of my earlier columns. Because of its importance, I am quoting his email: “As you know, I am neither a haematologist nor an oncologist, but I have always kept my eyes open to all kinds of patients coming to see me. It is now more than 30 years since I happened to have observed this herbal drug given to a cancer patient by a Hakeem. The drug did not have cytotoxic affects (effects due to treatment for cancer) but could really avert the toxic effect of the cytotoxic regime, such as hair falling out.
The need for transfusion was also reduced quite a bit. There was no discolouration of the skin and appetite remained good. I gave that drug to my patients and saw marvellous results. In 1988 the sister of my hospital receptionist suffered from Thalassemia Major and was almost at death’s door. Just for the sake of doing something, I gave her this particular drug and, surprisingly, after a few months she showed not only remarkable improvement, but tested negative for thalassemia (checked by Aga Khan Hospital). It was then that I started giving this medicine to all thalassemic patients and the results have been very encouraging – Thallasemia Minor cases becoming negative in a couple of weeks and blood transfusion requirements in Thallasemia Major cases gradually decrease.
The drug in question is Fegonia Critica, the whole flowering plant (plants collected during March and April show excellent results). This drug probably affects the stem cells besides having an immuno-supportive effect... The refined bitter alkaloid of the herb does not seem to have any influence on thalassemia or as a supportive therapy in cancer. Surprisingly, this herbal plant has shown unbelievable results in Hepatitis C patients.. .” Dr Seyal’s email address is: firstname.lastname@example.org.
Mr Kashif Mulla is public relations officer of the Sindh Chapter of the Thalassemia Federation of Pakistan, and Trustee and Joint Secretary of the Kashif Iqbal Thalassemia Care Centre (KITCC). This centre was founded in 1996 when Mr Iqbal, the chairman, lost his only son at the age of 16. Mr Kashif Mulla’s keen interest and devotion to KITCC is due to the fact that his five-year-old son is a thalassemia patient.
He has sent me detailed information on the commendable work done by this centre and has pointed out that, observing the positive and important role played by legislative measures for the eradication of this painful and costly disease in Iran, Cyprus, Greece and Italy, the KITCC together with some NGOs in Pakistan have been struggling for the past few years to have premarital screening for thalassemia made mandatory. Unfortunately, no fruitful results have been obtained so far due to lack of interest on the part of the government (they pass bills for their own benefit within minutes), unavailability of testing facilities in remote areas and differing opinions amongst major thalassemia organisations in the drafting of the bill.
At the initiation of Sen A Haseeb Khan, an initial draft was prepared by a committee of specialists of KITCC and the Fatimid Foundation. Suggestions were solicited from all parties concerned and a final draft has been prepared by consensus in a conference held by the KITCC on April 28, 2012, at the Federation of Pakistan Chambers of Commerce and Industries (FPCCI). The Bill is now with Dr Sagheer Ahmad (minister of health, Sindh) and Sen A Haseeb Khan for presentation to the Sindh Assembly, the National Assembly and the Senate. Some of the salient features of this bill are:
• The purpose of the bill is not to create financial or social burdens on the citizens, but to create awareness in the general public and to emphasise the importance of testing so that families do not suffer for life due to this disease.
• It will be mandatory for all male citizens to have their thalassemia status checked before marriage.
• In case of a positive result in the groom, the bride must also be checked.
• The bill does not aim at restricting marriages between carriers. The purpose is to make them aware of the consequences of their marriage and to try to prevent a social burden (and mental agony) on them.
• The possibility to add the thalassemia status must be created on to the National Identity Card and the B-form so that those desiring to add this information may do so. While this is optional, certification before Nikah will be mandatory.
• It will become a punishable crime for someone to perform Nikah without a Certificate of Thalassemia Status.
As in many cases, legislation alone is useless unless seriously supported by all concerned. It will require full government commitment, establishing powerful, sustained, health education campaigns and establishing quality laboratories for screening, prenatal diagnosis and providing genetic and obstetric services. Mr Kashif Mulla’s email is: email@example.com.
Because of the serious consequences of this disease, I would strongly advise all young people and all couples planning to marry, to have themselves tested and join the campaign for legislation and a better future for their children.
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