Shining Light on Clinicians Serving the Hereditary Blood Disorders Community
Introducing Dr. Prantar Chakrabarti MD, DBN, DM, a renowned Clinical hematologist with a specialty in Thalassemia, Hemoglobinopathies, and Bleeding disorders like hemophilia A, hemophilia B, and Von Willebrand disease.
GANSID: What hereditary blood disorder/s do you treat and what leads you to that specialty area?
Dr. Prantar: The hereditary blood disorders that I usually treat are thalassemia, hemoglobinopathies, and bleeding disorders like hemophilia A, hemophilia B, and Von Willebrand disease. I also take care of inherited platelet disorders like Glanzmann, Thrombasthenia, and Bernard-Soulier syndrome. Some of the primary immune deficiency syndromes are also referred to me and I take care of them in collaboration with pediatricians and immunologists. After specializing in internal medicine, I joined the Institute of Hematology at Medical College Kolkata in 2002 and hence my journey in this specialty started. Later, I did my postdoctoral fellowship training i.e. (DM in Clinical Hematology ) from All India Institute of Medical Sciences, New Delhi which then officially certified me as a clinical hematologist. I started teaching and ultimately became the professor and head of the department of Hematology at NRS Medical College Kolkata. Realizing the limitations of becoming a social activist while in a government job, I quit my job in 2019 and am trying to develop a comprehensive, accessible rural healthcare model empowering rural folk with the help of information technology and artificial intelligence.
GANSID: Can you share a major challenge you have encountered in your practice?
Dr. Prantar: The 2 major challenges I’ve encountered in my practice are the sheer number of patients who used to come to a single OP clinic at NRS Medical College, Kolkata, and the poor mental health status of the patients and their family members.
The average number of patients who were attending the thalassemia clinic was close to 250 patients on a single day. According to the rules of the government, we could not schedule any appointments. So, it was a walk-in clinic where any patient could walk in for a consultation. Realizing that we could not do justice to any of the patients as the average consultation time would be less than 2 minutes, we sat together and tried to design a solution.
The mental health problems arose because of several socioeconomic issues. Even in the case of thalassemic kids, the husbands used to blame their wives and abandon the child and mother to face social isolation and financial distress. The X-linked recessive Hemophilia made matters worse for the mothers who always carried the guilt. The “conspiracy of silence” was quite evident, and the patients were victims of stigmatization at the school and workplace. We wanted to work beyond prescription generation for this malady.
GANSID: How did you overcome that challenge?
Dr. Prantar: We overcame the first challenge by designing a special clinic where the patients could come and consult me directly at a prefixed frequency determined by the severity of the illness, with prior appointments and the number of patients was restricted. We could at least devote 30 minutes of our time to each patient so that we could deal with their problems with empathy and adequate discussion.
To take care of the mental health issues of the patients with genetic blood disorders, we formed an organization called “The Kolkata Hematology Education and Research Initiative (KHERI) and organized several activities including music and drama workshops so that they can engage themselves in different activities and think beyond their blood disorders and can be socially integrated. You can read about our activities in an article published in the Lancet Haematology:
GANSID: Is there a clinician/patient success story you would like to share with our audience?
Dr. Prantar: I had a Beta Thalassemia Major patient who had been transfusion-dependent since early childhood and had also lost her mother when she was in her teens. Previously, the patients had to pay out of their pockets for their transfusion as well as iron chelation. I was able to convince the administrators that the treatment should be free of cost and that was implemented helping many such patients. The lady was very much motivated and used to help other patients and would work like a patient ambassador. She had completed her masters in English literature, and I encouraged her to get a master’s degree in social welfare. When establishing thalassemia control units in different medical colleges and district hospitals of the state of West Bengal, we recruited her as a counselor as she fulfilled the educational criteria, and she has been the most empathetic counselor we ever had. Despite the regular transfusions and comorbidities, she would not only counsel all the families who were traumatized by the diagnosis of thalassemia and the natural history of the disease but help them in several ways going beyond her duties. She still works as a counselor and has been a beacon in the field of generating thalassemia awareness as well as educating the families of the patients so that they become more educated and take better care of the children with thalassemia.
GANSID: How can GANSID support your work?
Dr. Prantar: GANSID can support my work in various ways.
- It can partner with patient advocacy groups in India so that they learn about communication, project management, and advocacy skills to highlight their conditions and raise awareness so that genetic disorders can be prevented in the country.
- It can also help the twinning of centers in different parts of the world so that they may exchange their experiences and learn about their successes and failures and the ways to overcome their failures.
- It can also influence multinational pharmaceutical companies to conduct more clinical trials in the field of thalassemia, hemophilia, and other genetic disorders in developing countries so that the caregivers learn how to use the new molecules and the patients also benefit and get early access to the new technology.
- GANSID can develop training modules for nurses, counselors, and data managers for training online and certification.
- GANSID can partner with us in developing a user-friendly app for patients with genetic disorders where the patients can upload their prescriptions and reports and record their complaints so that the complete patient journey is documented.
