National Digital Forum underlines urgent priorities on World Haemophilia Day

VIRTUAL EVENT HOSTED BY VOICE OF HEALTHCARE AMPLIFIES GLOBAL HAEMOPHILIA MISSION OF PARTNERSHIP + POLICY + PROGRESS. 

19th April 2022

Voice of Healthcare hosted a National Digital Forum on the occasion of World Haemophilia Day 2022. The goal of this digital forum was to amplify the global mission of aligning changemakers in policy, corporates and society to elevate outcomes in Haemophilia. 

The virtual Forum saw enthusiastic participation from distinguished institutions and leaders such as National Health Mission Directors from states of Haryana, Rajasthan, Madhya Pradesh, Himachal Pradesh and Kerala who dwelled at length about progress and vision for Haemophilia care in their respective states and regions. It was followed by a panel discussion with eminent minds in the Haemophilia Care space 

EXCERPTS FROM TOP VOICES 

Following are clips from noteworthy guests who graced the occasion… 

“Integrated Centre for Haemoglobinopathies and Haemophilia (ICHH) is going to start 4 new centres in- District Gurugram, Yamuna Nager, Rewari and Sirsa.”- Shri Prabhjot Singh, Special Secretary (H&FW) & Mission Director (NHM), Department of (H&FW) Government of Haryana. 

“A campaign ‘Mera Pramaan Patra Mera Sammaan’ was conducted in Rajasthan, to create disability certificates for newly identified people suffering from Haemophilia, Thalassemia and Sickle Cell Anaemia.” - Dr. Jitendra Kumar Soni, Mission Director (NHM), Department of (H&FW), Government of Rajasthan

“We have made a few action plans for going forward in Karnataka-  establishing a state level forum for haemophilia, providing on demand therapies, antenatal screening to all suspected, genetic counselling and providing recombinant 8A prophylaxis”  -Dr. Arundhathi Chandrashekar, Mission Director (NHM), Department of (H&FW), Government of Karnataka

“MP is one of the few states where we have the ‘State Haemoglobinopathy Mission’, it shares borders with many states, which at times poses unique challenges in providing equitable healthcare. For treatment, we have developed a Hub & Spoke type model. The patients are supposed to come to the hub centre one time, and once diagnosed, they can continue their treatment in their own district. We are integrating Haemophilia 9 into existing digital health portal of MP”- Ms. Priyanka Das, Mission Director (NHM) Department of (H&FW) Government of Madhya Pradesh

“Just to ensure that nobody has internal bleeding, from this year onwards we have allowed the prophylactic factor treatment. In which patients can take that particular factor they require, every week. We believe in the principle of 'Sarve Bhavantu Sukhinah; Sarve Bhavantu Niramaya’ so we want All to be Fit & Free from Diseases.” - Shri Hemraj Bairwa, Mission Director (NHM), Department of (H&FW), Government of Himachal Pradesh.

“In the state of Kerala, we have been managing haemophilia through a program called ‘Ashadhara’ successfully. Wherein we provide comprehensive treatment to those suffering from blood disorders not just haemophilia but other haemoglobinopathies as well as sickle cell anaemia” - Dr. Ratan Khelkar, Mission Director (NHM), Department of (H&FW), Government of Kerala.

SCOPE OF FUTURE ADVANCEMENTS & PROGRESS IN HAEMOPHILIA 

Luminaries and guests present on the occasion enriched the proceedings with expedient recommendations and considered views. 

On the emergent need for focused attention, Dr. Sashikant Apte (HOD, Department of Haematology Sahyadri Hospital, Pune and Vice President of Haemophilia Federation of India) said “Lots of patients bleed 25-30 times a year and sometimes spontaneously. These crippling bleeds are most times life-threatening”. 

To share how leading medical experts are managing haemophilia in the current context and scenario, Dr. Rahul Bhargava (Principal Director, Haematology, Fortis Memorial Research Institute, Gurugram), said “The new normal is Genomics, and we are riding onto this wave of knowledge which has been imparted post Covid-19. From on demand therapies, we are now exploring prophylactic therapies, to improve the overall quality of life”.

When asked, what additional measures the government is making for haemophilia care, Dr. K Madan Gopal (Sr. Consultant, Niti Aayog) replied “To improve the access, the first step we have adopted is to detect the problem as early as possible and a lot of focus is laid on developing proper public health infrastructure”. 

Looking at the brighter side of the equation, Dr. Shubha Phadke (Professor and Head of Department, Department of Medical Genetics, SGPGIMS, Lucknow) quoted “For successful early detection of haemophilia carriers, genetic counselling and genetic tests are a very necessary step.  Pre-natal diagnosis should be dome for pregnant carrier mothers and educating the family on possible outcomes is also non-negotiable”. 

Elaborating on ‘Best Ways’ to facilitate the gargantuan task of spreading awareness about rare diseases on nation-wide scale, Dr. Tulika Seth (Professor of Haematology, All India Institute of Medical Sciences, New Delhi) expressed “Our Indian population is very intelligent and if we give information in a simple way, it would improve their genetic literacy and help greatly to decide what is best for their family and its future”. 

The session was moderated by Dr. Asawari Savant, Public Health Specialist, Team VOH (Voice Of Healthcare). 

To watch the full session click here: https://www.youtube.com/watch?v=dT1xLOWfjMo

LET’S DELIVER CHANGE… TOGETHER!

For information on how our event calendar looks for the rest of 2022 - and how you or your organization can be a part of the change, we are ushering one event at a time, connect up with Pinky Chahar at pinky.chahar@voiceofhealthcare.org .

*This press release is published by VOH team.*