Every year on May 8, World Thalassemia Day reminds us of a serious, inherited blood disorder that impacts thousands of lives across the globe. While medicine has come a long way in helping patients manage the condition, there’s a side of thalassemia that doesn’t get talked about nearly enough—the cost. For many families, managing thalassemia isn’t just physically exhausting, it’s financially overwhelming. And for healthcare systems already under pressure, the long-term demands of this chronic condition add another layer of complexity.
A lifelong financial challenge for families
When a child is diagnosed with Thalassemia Major, it marks the beginning of an ongoing medical journey. These patients typically need blood transfusions every few weeks, paired with daily iron chelation therapy to prevent serious complications. But these treatments aren’t cheap—and most families can’t rely on public support to cover them.
In countries like India, for example, treatment costs often reach two - three lakh rupees a year. And that’s just the medical side. There’s also the cost of travelling to hospitals, missing work, or even relocating temporarily to access the right care. Over time, the financial strain builds up. Some families fall into debt; others make heartbreaking choices about whether they can afford to keep up with treatment at all.
The system feels it too
It’s not just individual families that feel the pinch. Healthcare systems—especially in developing countries—are feeling the weight too. Blood banks are constantly trying to keep up with the demand. Hospitals, particularly in cities, often find themselves stretched thin as patients from rural areas flood in for treatment.
Many national health programmes still don’t cover genetic disorders like thalassemia, leaving a significant gap in care. And without widespread screening programmes, new cases continue to emerge—adding even more pressure to already overburdened systems.
According to the Thalassemia International Federation, caring for a single patient over their lifetime can cost up to Rs 1.27 crore. That’s not pocket change for families—or for national budgets.
Breaking down the costs
Let’s take a closer look at what these costs actually include:
● Direct medical expenses: These comprise transfusions, medications, lab tests, and regular checkups.
● Hidden or indirect costs: Travel to and from hospitals, lost income from taking time off work, extra accommodation, and sometimes even the cost of withdrawing a child from school.
These aren’t just items on a bill—they’re real-life disruptions that can derail a family’s financial stability. It’s not uncommon for caregivers to pause their careers or sell off assets just to keep up with ongoing treatment needs.
What can be done?
This year’s World Thalassemia Day theme—“Empowering Patients, Building Stronger Systems”—sends a clear message. There needs to be a rethink on how families can get better support and systems can be strengthened.
Here are a few practical steps that could make a difference:
● Universal Health Coverage (UHC) should include thalassemia as part of its essential services, so patients aren’t left paying out-of-pocket.
● Iron chelation drugs and transfusions need to be made more affordable, possibly through government subsidies or negotiated pricing.
● Carrier screening and prenatal diagnostics should be scaled up, especially in high-risk communities.
● Public-private partnerships can help bring better infrastructure and resources to underserved areas.
● Telemedicine could ease the burden of travel and help connect patients with specialists from the comfort of their homes.
Countries like Iran, Maldives and Thailand have already made great strides through national-level screening and awareness programmes, dramatically reducing new cases. There’s a lot others can learn from their example.
A day to reflect—and act
World Thalassemia Day isn’t just about statistics or medical facts. It’s about the lives behind those numbers. It’s about the families who’ve had to choose between paying rent and buying medication, and the kids who’ve grown up in hospital rooms instead of playgrounds.
Despite the progress over the years, there is still much to do. Thalassemia is not just a health condition, but an economic issue that demands systemic change. Investing in prevention, supporting families, and building a more inclusive healthcare model, will signal real steps toward easing the burden.
(Dr Sharat Damodar is Senior Consultant, Clinical Lead, Director - Adult Haemato Oncology & BMT, Narayana Health City and Chairman - Oncology Collegium, Narayana Health Group)