Thalassemia is an inherited blood disorder in which the body produces less hemoglobin and healthy red blood cells, resulting in chronic anemia and prolonged health problems. Patients who are suffering from this disease don't only require regular blood transfusions; they need continuous medical care for survival.
In Pakistan, it is a big public health problem, with a lot of people and a lot of biological marriages. Here, we will look into the thalassemia treatment in Pakistan and guide you on how you can participate in tackling this disease.
What is Thalassemia? Explaining its causes & types
Thalassemia is caused by mutations in the globin genes that generally affect beta-globin chains (β-thalassemia). Typically, Carriers (thalassemia minor) are asymptomatic. But it can pass the gene to offspring. And two carriers have a 25% chance of having a child with β-thalassemia major. It is the severe form of thalassemia that requires regular medical intervention.
Approximately 5,000 children with thalassemia major are born annually in Pakistan. And the estimated carrier rate is approx 6% of the population. This translates to roughly 12 million carriers, given the country’s population size.
Explore the Main Thalassemia Treatments in Pakistan
Regular Blood Transfusions
Frequent blood transfusions are the most important part of treatment for people with β-thalassemia major. Usually, it takes every 2 to 4 weeks to keep hemoglobin levels high enough to avoid severe anemia. These transfusions help get more oxygen to the body. But it raises the risk of having too much iron in the blood.
In Pakistan, accessibility and availability of safe blood supplies are the main challenges. Logistical hurdles and waiting times are especially prevalent. Due to the high cost of treatment and the lack of public specialist facilities, many average families can't access the treatment.
Iron Chelation Therapy (ICT)
Repeated blood transfusions cause excess iron buildup, which can damage the liver, heart, and endocrine organs. ICT is mandatory for transfusion-dependent patients to manage their condition. Common agents include:
Deferoxamine (injection)
Deferiprone (oral)
Deferasirox (oral)
These medicines help the body excrete excess iron. Also, they reduce complications, including liver fibrosis and cardiomyopathy.
Barriers to ICT in Pakistan include:
Non-adherence: Many patients fail to follow the chelation regimen, often due to side effects or lack of understanding.
Cost constraints: High medication costs contribute to inconsistent usage.
Limited counseling support, which affects long-term compliance and outcomes.
Bone Marrow/Stem Cell Transplantation
For children with thalassemia, Hematopoietic stem cell transplant (HSCT) is a potentially curative therapy that replaces defective hematopoietic cells with healthy ones from donors, usually siblings. In this treatment, thalassemia children’s defective hematopoietic cells are replaced with healthy ones. These are often taken from their siblings who matched with them, enabling normal hemoglobin synthesis.
In Pakistan, local access is limited due to a shortage of trained specialists and equipped centers, and many families must look overseas for this treatment. The procedure is also costly, making it inaccessible to many.
Advance Therapies
Luspatercept, an emerging therapy approved in several countries, helps patients by increasing red blood cell production and lowering transfusion frequency. Although it is currently unavailable in Pakistan, researchers and healthcare advocates suggest exploring clinical trial partnerships to assess its local implementation.
Plus, gene therapy approaches are also determined curative treatments, though due to the high cost, accessibility remains a significant challenge.
The Growing Burden of Blood Disorders in Pakistan
According to a study, a systematic review of 14 studies with 3,786 transfusion-dependent β-thalassemia major patients in Pakistan revealed a seroprevalence of hepatitis C virus (HCV) at 26%. And hepatitis B virus (HBV) at 3.13%, indicating a markedly elevated incidence of transfusion-related infections among thalassemia patients relative to the general population. Patients over 10 years of age exhibited a significantly elevated HCV prevalence compared to their younger counterparts, and frequent transfusions were strongly correlated with an increased risk of infection.Therefore, Pakistan faces a persistent public health challenge due to widespread blood disorders, especially thalassemia.
This is the reason, thousands of children require regular transfusions throughout their lives. Nevertheless, thalassemia and other blood cancers intensify this challenge in the country. In Pakistan the government has established many programmes like Punjab Thalassaemia Prevention Programme (PTGD) to provide free thalassemia carrier screening and genetic counseling across Punjab.
Also, many non-profit organizations like Sundas Foundation work as volunteers to make thalassemia treatment in Pakistan more accessible for those who can’t afford it. They provide ethical, reliable, and patient-focused healthcare treatments to needy patients, battling with thalassemia and other blood disorders.
Do you know? Being a part of this community, you can also participate in this kind act. You can give donations, Zakat, and charities to support the nonprofit centres like Sundas Foundation and can be the reason to save deserving thalassemia patients’ lives.
Summary
Although the government and nonprofit centres established solid foundations to make advanced thalassemia treatment in Pakistan more accessible. Also, they are offering improved prevention strategies and crucial ongoing services for better outcomes for patients and families affected by this lifelong condition.As thalassemia requires expensive regular blood transfusions and careful iron management treatments, poor patients can't afford advanced therapies. This is the reason, it also requires volunteer participation from the community.
With coordinated efforts across federal, provincial, and community levels, Pakistan can improve its thalassemia care system, reduce disease impact, and enhance the quality of life for thousands.
FAQs
Who can receive treatment at Sundas Foundation?
Patients suffering from blood disorders who cannot afford long-term medical care can receive treatment. Priority is given to underprivileged and high-need cases.
How can I register as a blood donor?
Blood donors can register online or at donation camps.
Can I volunteer with Sundas Foundation?
Yes, individuals can volunteer in medical support, awareness, and event organization.
How is patient data protected?
Patient information is handled confidentially and securely.
Can I volunteer with Sundas Foundation?
Yes, individuals can volunteer in medical support, awareness, and event organization.
How can I register as a blood donor?
Blood donors can register online or at donation camps.
What is the mission of Sundas Foundation?
The mission is to save lives by providing ethical, accessible, and consistent healthcare. The foundation also focuses on prevention and community awareness.
Which diseases are treated at Sundas Foundation?
The foundation treats thalassemia, hemophilia, aplastic anemia, and blood cancers. All care is delivered under qualified medical supervision.
Does Sundas Foundation provide free treatment?
Yes, this is no profit trusted organization providing free thalassemia treatments and other blood disorders across the different regions of Pakistan. This helps ensure that financial constraints do not prevent lifesaving care.
How often do thalassemia patients need blood transfusions?
Most thalassemia patients require blood transfusions every two to four weeks. Regular transfusions are critical for maintaining healthy hemoglobin levels.
