BARAMATI: Thalassemia, often referred to as “blood cancer,” is a genetic disorder with symptoms that see a fall in haemoglobin leading to fatigue and progressive organ impairment. Thalassemia primarily affects children. As the incidence of this ailment is high in our country, India is also called the Thalassemia capital of the world. Government statistics suggest that there are around 42 lakh patients of this debilitating disease in the country and they exact a major financial and emotional toll on the families of those who are impacted by this disorder. Through its various programmes, the government has endeavoured to help many of those who suffer from Thalassemia, but does this aid really reach the last mile?
In Baramati, Maharashtra, Akshay Sable, the head of a family of eleven, is struggling to put food on the table from the earnings his fledgling sanitary napkin unit provides. In these challenging circumstances, Sable just can not afford to have a sick person in the family. Luck is just not favoring him.
In 2015, Sable’s daughter Digantara, just a year and a half old then, was diagnosed with Thalassemia. Since then, the family’s financial resources have been stretched thin, with lakhs of rupees being spent on her treatment.
Maharashtra is home to over 11,000 registered Thalassemia patients who depend on frequent blood transfusions, a substantial number of them being children. These young patients require blood transfusions every 15 to 20 days, just to sustain their lives. Tragically, most of the patients that suffer from untreated beta Thalassemia die by 30 years of age- hence the desperation for blood transfusion and the more expensive bone marrow transplant.
On an average, Sable spends Rs 7,000-8,000 each month on medications, in addition to the cost of frequent blood transfusions. Moreover, Sable has to travel from Baramati to Pune to consult with a specialist for these transfusions. He laments that government hospitals do not provide the costly tablets, which range from Rs 50 to over Rs 100 each, making private treatment their sole recourse.
“The only benefit we receive from the Maharashtra government is the ability to obtain a blood bag priced at Rs 1200 to 1500 for just Rs 300. But that is hardly enough,” he explains.
Desperate to find a solution that reduces the need for these expensive transfusions, Sable has been tirelessly seeking alternatives. While one potential treatment for Thalassemia is bone marrow transplantation, it presents its own set of challenges. Finding a suitable donor with matching chromosomes is a matter of luck, and even with a successful surgery, a complete cure is seldom guaranteed. With costs exceeding Rs 25 lakhs for transplant, families just wilt under pressure.
Over many years, there have been many attempts by the government and public sector companies to provide funds and the treatment to those suffering from this genetic disorder. For Instance, in 2017, Coal India launched the ‘Thalassemia Bal Sewa Yojana’ to support the treatment of underprivileged children affected by Thalassemia. The Coal India CSR-funded Hematopoietic Stem Cell Transplant (HSCT) program is a unique initiative aimed at providing a one-time cure opportunity to underprivileged Thalassemia patients who have a matched sibling donor but lack the financial resources to cover the procedure’s cost. During its two phases, the program has successfully completed 356 bone marrow transplants for Thalassemia patients.
The program has empaneled 10 reputed hospitals across India, including AIIMS, New Delhi; CMC Vellore; Kokilaben Dhirubhai Ambani Hospital, Mumbai; MCGM Hospital, Mumbai; PGIMER, Chandigarh; Rajiv Gandhi Cancer Institute, New Delhi; SGPGI, Lucknow; Narayana Hrudayalaya, Bangalore; CMC, Ludhiana and Tata Medical Centre, Kolkata among others.
“In its recently launched third phase, the project has allocated an outlay of Rs 30 crores, with a goal of conducting up to 300 life-saving bone marrow transplants.” Though a small number in the face of a gargantuan problem, this phase promises hope for those who are searching for both money and medical competence to fight this disorder.
Furthermore, Fortis Healthcare has partnered with Coal India to provide medical care for underprivileged children afflicted by Thalassemia as part of the ‘Thalassemia Bal Sewa Yojana’ CSR initiative by the central public sector enterprise. An MoU was officially inked on July 28th 2023 at the Fortis Memorial Research Institute in Gurugram.
Central government has made Thalassemia screening mandatory for all pregnant women to prevent it from affecting the child. This is a tough and expensive exercise, but the screening is critical to prevent the spread of this disorder as marriage between two Thalassemic patients can cause the birth of a child that has 25 percent chance of being afflicted by it.
Thalassemia remains a formidable adversary that has impacted the lives of countless children in Maharashtra and across other states. Despite many government programmes to help the needy, people like Sable have not benefited from them. It seems that a Kafkaesque situation prevents him from getting succour for his problems. He answered in the negative when asked- “are you registered with PM Jan Arogya Yojana (PMJAY)”? The big question is can the government provide a way out for those who can’t deal with a claustrophobic bureaucracy and quickly provide relief to the needy?
