Lack of awareness is the biggest cause of the high number of thalassaemia and polio cases in Pakistan. Arif Ali / AFP
Lack of awareness is the biggest cause of the high number of thalassaemia and polio cases in Pakistan. Arif Ali / AFP

It’s time for Pakistan to wage war on a rare disorder



As a father, I feel the pain of those parents whose children are afflicted with thalassaemia, an inherited blood disorder. The condition causes a deficiency of haemoglobin, a protein in red blood cells that carries oxygen, which leads to anaemia. The patient requires regular blood transfusions or red blood cell infusions to maintain an adequate supply of haemoglobin. In most cases, patients receive transfusions every two to three weeks.

More than 100,000 are affected by the disorder in Pakistan, where around 5,000 babies are born with thalassaemia each year.

Lack of awareness is the biggest cause of cases. There are many Pakistanis who do not consider thalassaemia as a possible condition. They just consider their medical issues to be related to an iron deficiency.

A bone-marrow transplant is one treatment option for thalassaemia, but there are only two institutes – one in Karachi and other in Rawalpindi – providing this treatment. A transplant can cost up to 3 million rupees (Dh108,000), a sum that is unaffordable for the vast majority of people in a country where more than 40 per cent of its 180 million people live below the poverty line.

In this gloomy situation, Bait-ul-Mal, a public sector body in Islamabad, has emerged as the light at the end of a dark tunnel.

The organisation runs the state-of-the-art Pakistan Thalassaemia Centre, which offers free treatment for the poor and underprivileged.

Approximately 20 patients, mostly children, are treated at the facility every day. In the past three years, Bait-ul-Mal has also provided financial assistance to a further 1,500 thalassaemia patients.

Led by its managing director, Abid Waheed, Bait-ul-Mal has taken a step in the right direction by taking the fight against thalassaemia to the poor and neglected sections of society.

What is needed now is a comprehensive awareness campaign to fight the ailment around the country.

A mass education programme should be initiated by the government so that young students can become better informed about the disorder. Similarly, a local media campaign should be launched to raise awareness about the symptoms.

Medical experts should be required to carry out the premarital counselling of young people and screen their families to help these couples understand the possible consequences of carrier marriages.

The country still lacks a national transplant registry, which must be established. The government should develop a fellowship training programme for all specialist doctors and paramedics. Haemoglobin electrophoresis is a special blood test conducted to identify the gene causing this hereditary blood disorder. The government should establish facilities for this test in districts, particularly in rural areas, across Pakistan.

Various studies suggest that children in remote areas succumb to this disease because of the lack of treatment facilities.

No doubt serious efforts are being made by some NGOs to provide a better quality of life and increased survival in thalassaemia patients, but a lot has still to be done in the fight against this deadly disorder in the least developed South Asian nation.

The government should take charge of this “war” on thalassaemia and allocate adequate resources in the budget to fight this affliction.

Syed Fazl-e-Haider is a development analyst in Pakistan

Book Details

Three Centuries of Travel Writing by Muslim Women
Editors: Siobhan Lambert-Hurley, Daniel Majchrowicz, Sunil Sharma
Publisher: Indiana University Press; 532 pages

Company Profile

Company name: Namara
Started: June 2022
Founder: Mohammed Alnamara
Based: Dubai
Sector: Microfinance
Current number of staff: 16
Investment stage: Series A
Investors: Family offices

Yahya Al Ghassani's bio

Date of birth: April 18, 1998

Playing position: Winger

Clubs: 2015-2017 – Al Ahli Dubai; March-June 2018 – Paris FC; August – Al Wahda

Company Profile

Company name: Hoopla
Date started: March 2023
Founder: Jacqueline Perrottet
Based: Dubai
Number of staff: 10
Investment stage: Pre-seed
Investment required: $500,000

The specs

Engine: four-litre V6 and 3.5-litre V6 twin-turbo

Transmission: six-speed and 10-speed

Power: 271 and 409 horsepower

Torque: 385 and 650Nm

Price: from Dh229,900 to Dh355,000

The specs

Engine: 3.5-litre twin-turbo V6
Power: 456hp at 5,000rpm
Torque: 691Nm at 3,500rpm
Transmission: 10-speed auto
Fuel consumption: 14.6L/100km
Price: from Dh349,545
On sale: now

How tumultuous protests grew
  • A fuel tax protest by French drivers appealed to wider anti-government sentiment
  • Unlike previous French demonstrations there was no trade union or organised movement involved 
  • Demonstrators responded to online petitions and flooded squares to block traffic
  • At its height there were almost 300,000 on the streets in support
  • Named after the high visibility jackets that drivers must keep in cars 
  • Clashes soon turned violent as thousands fought with police at cordons
  • An estimated two dozen people lost eyes and many others were admitted to hospital 
Five expert hiking tips
  • Always check the weather forecast before setting off
  • Make sure you have plenty of water
  • Set off early to avoid sudden weather changes in the afternoon
  • Wear appropriate clothing and footwear
  • Take your litter home with you
Hamilton’s 2017

Australia - 2nd; China - 1st; Bahrain - 2nd; Russia - 4th; Spain - 1st; Monaco - 7th; Canada - 1st; Azerbaijan - 5th; Austria - 4th; Britain - 1st; Hungary - 4th; Belgium - 1st; Italy - 1st; Singapore - 1st; Malaysia - 2nd; Japan - 1st; United States - 1st; Mexico - 9th

Where the Crawdads Sing

Director: Olivia Newman
Stars: Daisy Edgar-Jones, Taylor John Smith, Harris Dickinson, David Strathairn
Rating: 2/5

Sly Cooper and the Thievius Raccoonus

Developer: Sucker Punch Productions
Publisher: Sony Computer Entertainment
Console: PlayStation 2 to 5
Rating: 5/5