As we commemorate World Health Day, it is essential to acknowledge the untiring efforts of those who strive to improve global health and confront the challenges posed by genetic disorders. One such relentless warrior in the fight against Thalassemia and Sickle Cell Anemia is Mr. Chandrakant Agarwal, President of the Thalassemia Sickle Cell Society (TSCS). With around 3.4% of the Indian population being carriers of the β-thalassemia gene, according to a study published in the Indian Journal of Human Genetics, the need for awareness, prevention, and effective management of these disorders cannot be overstated.

In this exclusive Q&A, Mr. Agarwal offers a unique perspective on the importance of spreading awareness, the evolution of TSCS, and the crucial role of government involvement and partnerships in the fight against Thalassemia and Sickle Cell Anemia. Join us as we delve into the inspiring story of TSCS and its unwavering commitment to making a lasting impact on the lives of those affected by these genetic disorders.

An Exclusive Interview with Mr. Chandrakant Agarwal, President – Thalassemia Sickle Cell Society (TSCS)

Q1. As we celebrate World Health Day, can you share your thoughts on the importance of raising awareness about genetic disorders like Thalassemia and Sickle Cell Anemia?

Thalassemia and Sickle Cell Anemia are often overlooked genetic disorders that significantly impact thousands of lives in India. Unlike other diseases, these genetic conditions fly under the radar due to a general lack of awareness. Spreading knowledge about these disorders is the first crucial step towards their prevention and eventual eradication, as it brings attention to the issue at both the public and governmental levels.

Q2. Your dedication to providing free services to as many Thalassemia patients as possible is commendable. What motivates you to continue this mission, and how do you see TSCS’s role evolving in the future?

My personal experience with Thalassemia has fueled my passion to help others facing the same challenges. The joy and hope we bring to the families afflicted by this disorder is a powerful motivator. TSCS aims to expand its reach and leverage technology in our fight against Thalassemia and Sickle Cell Anemia, from grassroots to national levels. We are proud to be the world’s largest society serving Thalassemia patients, thanks to the support of the Telangana government and our donors.

Q3. Can you discuss the journey of TSCS from its inception to now, serving over 3600 Thalassemia children daily? What have been some significant milestones in this journey?

TSCS began in 1998 as a collaboration between parents of Thalassemia patients, philanthropists, and medical professionals. Over time, our tireless efforts and selfless service attracted more people from diverse backgrounds, turning TSCS into an internationally recognized center for Thalassemia treatment and prevention. Our collective strength has given families the courage to believe that they are no longer fighting a losing battle.

Q4. As TSCS expands into Tier-2 markets, what strategies are you implementing to ensure the availability of quality healthcare services for Thalassemia and Sickle Cell Anemia patients in these areas?

TSCS is focusing on Tier-2 towns as they represent the heart of India, and our experiences in Mahboobnagar, Khammam, and Kurnool reflect this belief. We are committed to providing the highest quality of care regardless of location, adhering to universally recognized medical standards and protocols in both big cities and small towns.

Q5. With a national network of partners, how does TSCS coordinate its efforts to serve Thalassemia patients across India, and how do you plan to strengthen these partnerships in the future?

TSCS collaborates with a diverse range of institutions, including hospitals, NGOs, blood donor groups, schools, colleges, and pharmaceutical companies. Our partnerships are instrumental in serving Thalassemia patients across India, and we expect these relationships to grow organically as we continue our mission. Our united front against Thalassemia embodies the spirit of “one for all, and all for one.”

Q6. In your conversation with Vice-President M Venkaiah Naidu, you highlighted the need for financial support for genetic disorders. Can you elaborate on the importance of government involvement in addressing these health issues?

The government plays a crucial role in catalyzing change. A single decision can have a transformative impact on the lives of Thalassemia patients, such as the introduction of Aarogya Shree. Likewise, a government order mandating HbA2 testing for pregnant women during their first trimester, followed by appropriate interventions, could significantly reduce the prevalence of Thalassemia in India. Thus, government involvement is vital in tackling these health issues effectively.

Q7. What are the primary awareness and prevention activities that TSCS is currently focusing on, and how do you plan to expand these efforts in the coming years?

TSCS is actively engaging in national-level conferences on Thalassemia prevention, training medical officers, opening new centers, hosting visits from renowned doctors and scientists, organizing blood donation camps, and conducting numerous tests for early detection. As we move forward, we aim to amplify our efforts to reach more people and make a more significant impact in the fight against Thalassemia and Sickle Cell Anemia.

Q8. Can you shed some light on the Thalassemia situation in Telangana and the importance of introducing a Government Order (GO) for antenatal testing in the state?

In Telangana, as in other regions, many families are not aware of Thalassemia until they have already experienced the pain and struggle of dealing with the disorder. A GO for antenatal testing would radically reduce the burden on families and healthcare providers by enabling early detection and intervention. Our team at TSCS is committed to raising awareness and providing free testing services to combat this disease effectively.

Q9. In your opinion, what are the critical factors that need to be addressed to make India Thalassemia-free?

The most critical factor in making India Thalassemia-free is spreading awareness. A mandatory HbA2 test for pregnant women in their first trimester, prescribed by a government order, would be a game-changer. Thalassemia thrives due to lack of awareness, and once knowledge about the disorder becomes widespread, its prevalence will significantly decrease.

Q10. As TSCS marks its 25th anniversary, what are your future plans and aspirations for the organization, and how do you envision its growth and impact in the next decade?

As we celebrate 25 years of TSCS, our commitment to providing compassionate, high-quality care to Thalassemia patients and raising awareness for prevention remains steadfast. On World Health Day, we express our gratitude to every healthcare platform that supports our efforts to increase awareness of genetic disorders. We believe that prevention is better than cure, and our aspiration is to make Telangana the first Thalassemia-free state in India. We are optimistic about our progress and hope that a government order will make a substantial difference in achieving this goal.

Our enlightening conversation with Mr. Chandrakant Agarwal has provided us with a deeper understanding of the challenges faced in addressing Thalassemia and Sickle Cell Anemia in India. It also highlights the incredible progress made by TSCS in its 25-year-long mission to provide hope, care, and support to thousands of patients.

The road to a Thalassemia-free India may be arduous, but with the dedication of organizations like TSCS, government initiatives, and strong partnerships, that goal is gradually becoming attainable. As we celebrate World Health Day, let us recognize the invaluable contributions of TSCS and countless other organizations, who work relentlessly to ensure a healthier future for all.