PUNE: India is often referred to as the capital of thalassemia patients, and faces a significant lack of awareness about this genetic disorder. Every year, approximately ten to twelve thousand children are born with thalassemia in the country. This blood disorder not only impacts the physical health of patients but also has profound effects on their mental, economic, and social well-being, making it a pressing social health issue. To achieve the vision of a ‘Thalassemia-free India’ by 2035, it is crucial to raise awareness and encourage preventive measures. On the occasion of World Thalassemia Day, an awareness rally was organized by the blood bank of Sahyadri Hospitals, in collaboration with the Indian Society of Blood Transfusion and Immunohematology (ISBTI) and the Thalassemia Society Pune Chapter (TSPC).

This was the first initiative of its kind in Pune city, witnessing enthusiastic participation from doctors, medical staff, numerous children suffering from thalassemia, and their parents. The rally, part of the ‘Thalassemia-free India’ campaign, commenced at 7:30 AM from Sahyadri Super Specialty Hospital, Deccan Gymkhana, and concluded at Shaniwar Wada, passing through Lakdi Pul, Tilak Road, and Bajirao Road.

Prominent participants in the rally included Mr. Girish Hukare, Joint Commissioner of Food and Drug Administration (FDA) Pune; Dr. Sunil Rao, COO and Medical Director of Sahyadri Group of Hospitals; Dr. Neeta Munshi, President of Thalassemia Society Pune Chapter (TSPC); Dr. Dilip Wani, President of the Indian Society of Blood Transfusion and Immunohematology (ISBTI); Dr. Purnima Rao, Sr Consultant of Blood Bank at Sahyadri Hospitals and Secretary ISBTI Maharashtra Chapter and Dr Smita Joshi, HOD of Blood Bank, Sahyadri Super Speciality Hospitals, Deccan Gymkhana and Treasurer of ISBTI Maharashtra Chapter. Additionally, renowned RJ Sangram Khopade from Big FM also marked his presence at this social initiative.

Addressing the gathering, Girish Hukare remarked, “Thalassemia presents a lifelong challenge for patients and their families, with prevention being the only effective cure. The government currently provides free blood and medicines to thalassemia patients. Utilizing these government facilities to their fullest and raising awareness about this disease are crucial steps towards achieving a Thalassemia-free India.”

Speaking on the occasion, Dr. Sunil Rao stated, “Thalassemia is a genetic blood disorder. Even if parents exhibit mild symptoms, their children can develop severe thalassemia. Genetic defects affect children’s haemoglobin production and reduce the lifespan of their red blood cells. Consequently, these children require at least one unit of blood every 21 days. We take great pride in the fact that for over 15 years, our blood bank and staff have been providing comprehensive medical assistance to thalassemia patients.”

Dr. Neeta Munshi stated, “Currently, Pune has over 1,000 thalassemia patients, with the numbers rising each month. We aim to make Pune thalassemia-free by 2030 and the entire country by 2035. To achieve this, it is essential to focus on prevention by conducting appropriate tests before marriage or planning a child, thereby preventing the transmission of this disease to future generations.”

Dr. Dilip Wani stressed the importance of collaboration among hospitals, blood banks, social organizations, patients, and their families to address this health issue and achieve a thalassemia-free India.

Dr. Purnima Rao expressed her gratitude to the attendees. She emphasized the critical role of blood transfusion treatments for thalassemia patients and highlighted the necessity of frequent blood donation drives across the city to ensure that economically disadvantaged patients receive the essential care they need.

Collectively, the attendees were urged to create awareness in society and actively participate in achieving the dream of a Thalassemia-free India and building a patient-centered future. Furthermore, Sahyadri Hospitals will be organizing Continuous Medical Education for blood banks and the medical fraternity to support this cause.

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MUMBAI: With a vision to strengthen treatment solutions for Thalassemia patients in the Gujarat region, DKMS Foundation India inaugurated a new Bone Marrow Transplant (BMT) Unit in Ahmedabad, today. Designed to meet the growing demand for stem cell transplantations in the region, the new center includes 10 specialized pediatric BMT beds, alongside essential apheresis care facilities and an outpatient center. More than 26 professionals, including four doctors and 14 nurses, will ensure the best possible care for patients. The non-profit organization Sankalp India Foundation operates the new unit with the medical advice support of Cure2Children on the premises of Health1 Super Specialty Hospital, Ahmedabad.

India faces a pressing healthcare challenge: over 12,000 children are born each year with thalassemia, a hereditary blood disorder that causes severe anemia. These children often require lifelong blood transfusions, and without proper treatment, many do not survive beyond the age of 20. Bone marrow transplantation offers the only curative option, but access remains limited due to financial and logistical barriers.

To bridge this gap, DKMS through its Access to Transplantation program has committed 31.15 million Indian rupees (approximately 350,000 euros) to fund the new BMT unit.

“By funding the BMT unit in Ahmedabad, we are bringing lifesaving care closer to home, reducing barriers to treatment, and supporting families who might otherwise have to travel long distances. We dream of giving every child suffering from thalassemia in India a second chance at life – a chance to smile, grow, and embrace the future they deserve,” explains Dr. Elke Neujahr, Global CEO of DKMS.

“Our collaboration with DKMS has transformed the lives of more than 570 children in India since 2018,” says Rajat Kumar Agarwal, President of Sankalp. “With the new and expanded unit in Ahmedabad, where up to 120 children can be treated every year, even more children can be saved and return to a happy life. It represents hope and a brighter future for families facing the challenges of thalassemia.”

It is the second BMT unit in India funded by DKMS, in memory of Mechtild Harf, the late wife of DKMS founder Peter Harf. The first BMT unit in Bangalore, established in 2021 and also operated by Sankalp in collaboration with Cure2Children, has already had a positive impact on more than 460 children with thalassemia.

The inauguration of the new BMT unit represents a significant milestone in the advancement of healthcare in Ahmedabad and the surrounding region. It will not only enhance access to critical treatment but also contribute to the development of expertise in the field of bone marrow transplantation.

A story of hope: Tanvi

The impact of this initiative is best reflected in the story of Tanvi, a young girl diagnosed with thalassemia at just six months old. Born into a family facing daily financial struggles, her father – an auto-rickshaw driver – worked tirelessly to provide for them. For Tanvi, routine blood transfusions became a lifeline, but as the financial burden grew overwhelming, her father desperately sought help.

Thanks to free HLA typing funded by DKMS and facilitated by Sankalp, a genetic match –  and the foundation for a stem cell transplant – was found: Tanvi’s sister, Dhanvi. With renewed hope, the family accessed the BMT procedure at the former Ahmedabad unit, a turning point in Tanvi’s battle against the disease. Today, five years after her transplant, 16-year-old Tanvi is thriving – a joyful child who loves dancing and embraces life with newfound energy.

“I am immensely grateful that my daughter could receive this treatment thanks to DKMS and Sankalp,” shares Tanvi’s father. “Because of them, I can see her smile again. She now has the chance for a long and full life.”

In addition to receiving the transplant, Tanvi’s family benefited from DKMS’s Patient Funding Program, which helped ease the financial strain of the procedure, ensuring she got the care she needed.

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Dr. Kannan Subramanian, Consultant Haematologist at KEM Hospital, Pune, and Head of the Unit, said that while the unit is especially for pediatric patients, it is also completely equipped to treat adults.

The Unit will serve patients with leukemia, lymphoma, myeloma, thalassemia, aplastic anemia, primary immunodeficiency disorders, etc.

All processes related to  BMT – from stem cell harvest, and storage, to infusion will be undertaken under one roof. The facility is strongly supported by multi-specialty backup and critical care.

Dr. Kannan added that the Unit with cutting-edge technology, experts including hematologists, oncologists, and trained nurses and staff will ensure specialized care, and a multidisciplinary approach to overall health and well-being while tackling blood-related disorders.  

Along with an established Haematology Department, the new unit reflects our ability to diagnose and treat all blood-related disorders.

Dr. Farrokh Wadia, Trustee of the hospital and Director of the Renal Unit said that the launch of the BMT Unit is an important milestone for our hospital and reflects our efforts to offer end-to-end services with advanced technologies and multidisciplinary support at affordable rates.

Bone Marrow Transplant is a specialized and critical procedure that includes healthy bone marrow cells or stem cells replacing damaged bone marrow. It provides a ray of hope for restoring the body’s ability to produce healthy blood cells which is crucial for our immune function and overall health.

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Dr. Mahesh Sulaxane, IAP Secretary; Dr. J.S. Bhawalkar, Dean; Dr.P. Vatsalaswamy, Director Academics; Dr.Hanumant Chavan, Medical Superintendent; Dr.Shailaja Mane, Head of the Department of Pediatrics; Dr. Dnyaneshwar P Upase, Senior Consultant Hematologist and Hemato Oncologist from Dr. D. Y. Patil Medical College, Hospital & Research Centre graced the event. Thalassemia patients along with families, other healthcare professionals, and members of the community also joined this insightful event and contributed to the well-being of individuals fighting with thalassemia.

Dr. Mahesh Sulaxane, IAP (Indian Academy of Pediatrics) Secretary was the chief guest at the event. While addressing the event, he said, “It’s impressive to see the special efforts undertaken by the institute towards the well-being of their thalassemia patients. Dr. D. Y. Patil Medical College, Hospital & Research Centre has been consistently launching initiatives to create awareness about thalassemia as well as other serious conditions and has succeeded in raising the bar for healthcare across its contemporaries.”

Hon’ble Dr. Yashraj Patil, Trustee and Treasurer of Dr. D. Y. Patil Vidyapeeth (Deemed to be University), Pimpri, Pune, said, “We must stand united to raise awareness for those battling thalassemia and continue our efforts to empower the patients to lead fulfilling lives despite the challenges in their day to day lives. Additionally, such initiatives foster confidence and self-esteem, enabling them to navigate the complexities of managing their condition with greater resilience and resourcefulness.”

Dr. Dnyaneshwar P Upase, Senior Consultant Hematologist and Hemato Oncologist at Dr. DY Patil Medical College, Hospital & Research Centre, Pimpri, Pune, said, “Our institute believes that every individual regardless of their economic and health condition, deserves an opportunity to reach their full potential. By coming together to celebrate this day we can create a bright future for those affected by this condition and give them a chance to truly thrive in this dynamic environment.” Dr. Upase elaborated on a comprehensive array of treatment options such as bone marrow transplant for potential cure, emerging non-transfusion therapies like luspatercept injections, and the use of blood transfusions alongside iron chelation therapy. Regular check-ups were emphasized to ensure the overall well-being of patients with thalassemia.

During the session, Dr. J.S. Bhawalkar, Dean, Dr. DY Patil Medical College, Hospital & Research Centre, Pimpri, Pune, stated, “Our institution is committed to providing holistic care to the thalassemia patients that goes beyond medical treatment. We are aware that this disorder requires not just physical but also emotional support and through this event, we aim to foster a sense of accomplishment and self-worth by enhancing their quality of life.”

The event offered multiple soft skills workshops and training sessions catering to the interests and abilities of thalassemia patients. From vocational skills to educational opportunities, the patients were able to get hands-on experience that would ensure that they were equipped with skills that would help them in different walks of life. In addition to this, the institution had planned several art activities to encourage self-expression and creativity of the patients to discover their artistic talents through painting, drawing, music, essay writing, etc., which were designed for the personal growth and development of the patients.

Through this event, Dr. DY Patil Medical College, Hospital & Research Centre, Pimpri, Pune once again reiterated its commitment to community well-being through arranging such initiatives, contributing to the broader effort to raise awareness about thalassemia and its impact on the affected individuals and their families.

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INDIA: Thalassemia, a genetic disorder affecting hemoglobin, presents a significant health challenge in India, with the world’s largest population of Thalassemia Major children and around 42 million carriers of the beta thalassemia trait. As the most prevalent genetic disorder globally and in India, Thalassemia Major requires focused attention. To combat this challenge, DKMS BMST Foundation India has come up with a Thalassemia Programme for such patients.

DKMS-BMST’s Thalassemia program has facilitated over 14,800 Thalassemia children and family members to receive free HLA typing, leading to 345 successful transplants and offering a transformative impact on their diagnostic accuracy and potential for stem cell transplantation.

The UN designates December 3rd as the International Day of Persons with Disabilities and aims to raise awareness and understanding of various disability issues and mobilize support for the dignity, rights, and well-being of persons with disabilities. Thalassemia, as a disability, can be cured with a stem cell transplant, but there is only a 1 in a million chance that someone comes up as a match for a patient, and Indian patients mainly require an Indian tissue match.

Dr. Sunil Bhat, Director and Clinical Lead of Pediatric Hematology, Oncology, and Blood and Marrow Transplantation at Narayana Health Group of Hospitals, said, “Because of International Day of Persons with Disability, it’s crucial to spotlight the challenges faced by Thalassemia patients in India. India is called the Thalassemia Capital of the World, as every year, more than 10,000 children are born with this genetic disease. Addressing the Thalassemia challenge in India requires a comprehensive approach, and stem cell transplantation is a cornerstone in this endeavor. It offers a real chance at a healthier life, disrupting the course of this genetic disorder and bringing newfound hope to individuals and their families. Thalassemia is a preventable genetic disorder, and prevalence has been brought down drastically in many countries with effective prevention strategies.”

Patrick Paul, CEO of DKMS BMST Foundation India, said, “The DKMS-BMST Patient Funding Programme and the DKMS-BMST Thalassemia Programme, integral to the DKMS mission, strive to enhance accessibility to transplantation for underprivileged patients in India. Collaborating with local NGOs and transplantation clinics, the Thalassemia program organizes events facilitating free HLA typing for pediatric patients and their siblings. DKMS Germany covers the associated costs. This initiative extends support to cases without matching siblings, aiding in an unrelated donor search. Since 2018, over 14,800 Thalassemia children and family members have received free HLA typing, leading to 345 successful transplants and offering a transformative impact on their diagnostic accuracy and potential for stem cell transplantation.”

To combat this challenge, DKMS BMST Foundation India has come up with a Thalassemia Programme for such patients. The program collaborates with local NGOs and transplantation clinics, organizing events facilitating free HLA typing for pediatric patients and their siblings. DKMS Germany covers the associated costs. This initiative extends support to cases without matching siblings, aiding in an unrelated donor search.

The DKMS-BMST Patient Funding Programme and the DKMS-BMST Thalassemia Programme, integral to the DKMS mission, strive to enhance accessibility to transplantation for underprivileged patients in India. With a vision to identify a matching donor within the family as well as support unrelated donor searches for patients who do not find a suitable match within their family.

Thalassemia is a preventable genetic disorder, and its prevalence has been brought down drastically in many countries with effective prevention strategies. However, India still faces a substantial burden of this condition, and experts call for awareness to combat this challenge. To register as a potential blood stem cell donor, please visit www.dkms-bmst.org/register.

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