60 Thalassemics visited the Check Up Clinic at Sir Ganga Ram Hospital
|Annual Picnic, Jan 2016 (TBA)|
|International Thalassemia Day, May 2017(TBA)|
Organised by Thalassemics India in collaboration with Thalassemia International Federation, Indraprastha Apollo Hospital and Sir Ganga Ram Hospital.
The 6th International Conference on Thalassemia was held at Hotel Eros, Delhi on the 24th and the 25th September,2016. The conference was held under the auspices of Ministry of Health and Family Welfare, Government of India.
We were fortunate to have a galaxy of national and international experts who apprised us of the latest developments in the management of Thalassemia. The faculty included nine international, and over seventy national experts who shared their vast experience on a range of subjects. The conference was attended by over 600 doctors, parents, patients and Government health officials. The format of the conference was designed in a way that patient and parent queries were duly addressed either during the presentations or panel discussions. The Chairpersons had been requested to summarize each of the presentations in Hindi at the end of each talk so that the essence and key messages reached each and everyone.
The tone for the conference was set by the first presentation by Dr Androulla Eleftheriou, Executive Director, Thalassaemia International Federation who explained the current Global status of Thalassemia with specific focus on India. The next talk was on “Safety and Adequacy of blood” by Dr Poonam Srivastava of the Lions Blood Bank who highlighted the importance of the availability of adequate and safe blood products to thalassemic patients, as this is the mainstay of optimal management of these patients. This was followed by a session on Blood Transfusion Therapy by Dr Mamta Manglani, Head of the Department, Sion Hospital, Mumbai who reiterated the principles of optimal transfusion of patients with thalassemia. She addressed the many issues encountered on a day-to-day basis when receiving transfusion therapy.
The conference was formally inaugurated before proceeding to further scientific sessions by the Chief Guest Dr. Arun Kr. Panda, Additional Secretary, Ministry of Health and Family Welfare, Government of India, along with H.E. Demetrios A Theophylactou, Cyprus High Commissioner, Dr Androulla Eleftheriou and Dr Michael Angastiniotis. The audience was apprised of the initiatives being taken by the Government bodies for patients with Thalassemia. Short presentations from West Bengal, Gujarat and Uttar Pradesh highlighted the work being done at the State level both in terms of prevention and management of thalassemia
Dr Anupam Sibal, Pediatric gastroenterologist, Apollo Hospital, Delhi discussed the recent advances in the management of Hepatitis B and C. He informed the indications of starting treatment. The new medications now available for Hepatitis C make a cure or clearance of infection realistically possible for the majority of patients.
The next two sessions addressed the important area of Chelation. Dr John Porter from UCL London shared the changing paradigm in chelation wherein we want all patients to have `ferritin` under 1000 so that there is no significant organ dysfunction in the long term. Deferasirox has truly made it possible for the majority of patients. Dr Antonio Piga from Torino University, Italy took the proceedings further by deliberating on combination chelation therapy, which is needed in some patients who are unable to reduce iron overload by using a single agent. He shared his vast experience on when and how agents should be combined to yield the best results.
The sessions on Transfusion and Chelation were concluded by a Panel Discussion which covered many areas which parents and physicians find challenging. The session was moderated by Dr Deepak Bansal from PGI, Chandigarh. The questions were based on frequently asked questions by parents and patients and was found to be very useful by the audience.
The next segment was on endocrine issues. Dr Heba Elsedfy from Ain Shams University, Egypt talked about growth problems, hypothyroidism, delayed puberty and poor bone health. She reiterated that optimal chelation is the cornerstone for prevention of endocrine dysfunction and the optimal management of these conditions. As it is difficult to discuss all issues in a single talk, this session was followed by a Panel Discussion format with Pediatic Endocrinologists from different hospitals and was moderated by Dr Deepak Bansal. The practical aspects of monitoring for and management of endocrine issues in thalassemic patients were discussed.
This was followed by a session on cardiac management by Dr John Malcolm Walker from University College Hospital, London. Once again, he emphasized that the only way to prevent cardiac complications by ensuring that excess iron overload does not get accumulated in the heart. He also shared tips for the doctors on managing the cardiac complications.
The final session of the first day was an open forum for parents and patients moderated by Ms Gagan Singh. This gave all attending to voice their own problems and also share their personal journeys and achievements with all.
The opening session on Day 2 was on T2* Imaging by Dr Harsh Mahajan, Founder and Chief Radiologist of Mahajan Imaging,New Delhi and Dr Amna Abdel Gadir from University College Hospital,London It is widely accepted now that T2* MRI is the best way to monitor iron overload in the heart and liver. Further progress in this area and the need to ensure accuracy and reliability of the test was highlighted.
The session on Monitoring was by Dr Antonio Piga who made us all aware yet again of the need for optimal monitoring and for optimal management.
This was followed by the sessions on BMT, and questions around it that bother virtually all our patients. Dr Mammen Chandy, Director, Tata Medical Center,Kolkata very clearly addressed all the key areas. He shared data that the current outcomes for Thalassemia transplant with matched family donors and fully matched unrelated donors are excellent. However, based on current evidence transplants with half matched donors (haploidentical) or with even slightly mismatched unrelated donors can not be advised for these patients. All these issues were further addressed by a Panel of BMT experts who answered numerous patient queries.
In the next session Dr Philippe Leboulch, director of France’s institute of Emerging Diseases and Innovative Therapies, France shared with the audience the progress made in the area of Gene therapy. A lot of exciting developments are happening in this area but it will still be a few years before the principles can be adopted in routine clinical practice. Dr Alok Srivastava from CMC Vellore, acknowledged their efforts to pioneer this in India also so that when the technology is ready for clinical use, Indian patients can benefit at affordable prices.
Following this was the section on Fertility and Pregnancy in Thalassemia.Dr Sanjivini Khanna, Director and Head, Dept. of Obs/Gyn, Fortis Hospital, New Delhi made everyone aware that fertility and pregnancy for thalassemia was a reality now and how to manage the young pregnant woman with thalassemia. Dr Abha Majumdar from Sir Ganga Ram Hospital discussed about
pre natal diagnosis which has made it possible to actually implant an embryo that is healthy and may even be fully matched with the patient. This is not, however, currently available in India.
The session on Thalidomide in Thalassemia: Hope or Hype was eagerly awaited by everyone as it is currently being prescribed widely for patients. Dr Amita Trehan, Pediatric Hematology Oncology unit, Chandigarh, discussed that whilst there were interesting case reports of four patients with thalassemia major and intermedia, who were given this drug in very difficult situations having benefitted from this drug. However, it would be unwise to start prescribing this drug without further studies and detailed analysis. For now, patients should be continued on the standard management protocols.
The talk on New Drugs on the Horizon was delivered by Dr John Porter. There is a lot of excitement about Lusatercept which can prolong the transfusion interval. This drug is currently undergoing extensive trials and we will now more in the next couple of years or so.
Finally, the section on Patient Voices brought to the fore three young, dynamic, patients who highlighted the hopes, aspirations and the achievements of the young thalassemic and how a positive outlook more than anything can shape our destiny.
The conference was concluded on this positive note. As organizers it was a hugely rewarding experience for us and we hope that all attending found it be an opportunity to learn, meet and make friends and move on to their personal journeys with the right knowledge and hopes in their hearts and dreams to achieve.
Secretary Scientific Committee
6th International Conference on Thalassemia
6th International Conference on Thalassemia