In India, Haemophilia remained a rather neglected ‘orphan disease’ until the 2007-2008 when first fully comprehensive haemophilia care centre, HDCC,  was established in Maulana Azad Medical College & Lok Nayak Hospital in Delhi under directions emanating from the directions of Hon’ble High Court of Delhi, mandated to Prof. Naresh Gupta as Network Coordinator of Haemophilia. Until that time, there was no institutional haemophilia care setup under any State/ UT Govt to provide free treatment for haemophilia.

The rapid progress that this Delhi initiative of free haemophilia care made  was testimony to the deep vacuum that existed for adequate treatment of Haemophilia in India. With healthcare being a State subject, the Delhi initiative was getting overloaded. Soon, it overflowed  into neighbouring and other States with Delhi’s Advocacy and Capacity Building model. Within a decade almost all States and UTs were providing Haemophilia Care- a matter of great pride for Delhi.

Concurrently, the global developments in haemophilia care moved great strides with newer innovations, that improved the plight of haemophilia fraternity so gratifying. The rapidity of expansion in haemophilia care treatment modalities came with uncertainties and anxieties amongst not only patients but other stakeholders  including the treaters, administrators and policymakers. Regular meetings of like-minded public-oriented experts were going on during the regular scientific meetings, and left much to be desired. And a felt need for more cohesive and consensus approach esp. in the changing landscape of expanding armamentarium to manage haemophilias  was palpable from all corners. This is what lead to the birth of Haemophilia & Health Collective of North in July 2023 with contribution from experts from across the country. It has been recognized as a National level organization by the Government of India.

Haemophilia & Health Collective of North (HHCN) is a body of senior experienced faculty staff largely from the Government medical colleges in different States of North India. These founder members have shown their mettle for improving the lot of haemophilia and other related blood disorders, and health in general in India. With their long experience and knowledge of ground realities and administrative functioning, the members have empowered the HHCN to think and recommend the best decisions in the interest of patients at large while keeping the situational constraints in mind.

In the short span since its foundation in July 2023, Haemophilia & Health Collective of North® has shown its dedication and capabilities by organizing the following.

1. In July 2023, Haemophilia & Health Collective of North® soon organized a highly participative and successful ‘Haemophilia Conclave 2023’ on 20 July 2023 in New Delhi, striving to bring together the finest medical professionals and experienced caregivers, think tanks, leaders, administrators and  policymakers, and other stakeholders from across the nation, playing vital role in haemophilia care. The objective being, inter alia,  a Delhi consensus recommendation for protocols and policies for optimal haemophilia care resource-constraint settings.

2. In July 2023, the Haemophilia Conclave 2023, focussed sessions offering a deep dive into key issues that can potentially transform the future of haemophilia include Pharmacologic Treatment of Haemophilia, Non-Factor Therapy for Haemophilia, Are Newer Pharmacotherapy Really Worth the Money and Resources?, The Need for Uniform Treatment Policy & Protocols in India, Optimal Care in Haemophilia in India, Role of Physiotherapy & Occupational Therapy, Social Worker, and Psychology in Haemophilia Care, and more. The deliberations were intensive and of high quality as evident from the feedback and the ensuing recommendations.

3. In December 2023, Haemophilia & Health Collective of North® formally launched the print version of the HHCN Recommendations on Policy & Protocols for selecting the right product for Optimal haemophilia care in India.

4. In March 2024, Haemophilia & Health Collective of North® organized a core group Expert Meeting report on the “Changing Landscape of Hemophilia Care: Unmet needs and solution” in Dehradun, Uttarakhand. The focus was on deliberating on solutions for Improving adherence and confidence among PwH in the context of great inroads in treatment of haemophilia. The report is ready and will be incorporated in the next version of our National level guidelines on haemophilia care to be launched later this year.

5. In April 2024, Haemophilia & Health Collective of North® commemorates the World Haemophilia Day 2024 along with Maulana Azad Medical College and Lok Nayak Hospital. The whole day programme on 20^th April 2024 in the main auditorium on MAMC campus is geared to empower our Haemophilia Fraternity through their active participation and other day-long activities. This has been a regular annual celebration for more than a decade with a gathering of around 500 including patients, families, and other stakeholders including medical faculty.

6. In May 2024, Haemophilia & Health Collective of North® is organizing national Haemophilia Conclave 2024 on the Theme

           Policy and Protocols for Best Practices in Haemophilia Care in Developing Countries
                              -Policy & Protocols for Enabling Best Haemophilia Treatments

         Its proceedings will be incorporated in the next version of our National level guidelines on haemophilia care to be launched later this year.

While the expert founding Members (quod vide) of Haemophilia & Health Collective of North® are doing their best, we will surely benefit from constructive criticism. Meanwhile, it is our sanguine hope that these first national level recommendations on haemophile care will be perused by the different State administrations for optimizing health equity in haemophilia care. It is an expensive treatment but comes with unsurpassable benefits by ‘resurrecting the dead children back to normal life longevity and quality’.

We soon hope to update these Recommendations on Best Practices in Haemophilia Treatment during second half of this year.

With Best Wishes!

doctornaresh
Dr. Naresh Gupta