Press Release

Leadership And Action Across Sectors Are Essential For Rare Diseases

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5th August 2020: People to People Health Foundation (PPHF) and GRID Council, with support from Takeda Pharmaceuticals, convened an international webinar on “Resilience approach towards rare disease policy in India” from 11 am to 1 pm on 4th August 2020. The agenda for the webinar was Resilience Approach Towards Rare Disease Policy in India highlighting the need to resurface and prioritize Rare Diseases as a health priority. In February 2020, PPHF also conducted a multi-stakeholder roundtable discussion on Draft National Policy for Rare Diseases and the recommendations were submitted to MoHFW and PMO.

The current webinar represented a combination of very high-level speakers from USA and India from sectors like Academia, industry, ministry, public health organizations, and patient advocates to help us better understand the opportunities and challenges for prioritization and management of Rare Diseases.

The discussions focused on highlighting the need to resurface and prioritize Rare Diseases as a health priority. Suggestions included prioritization of preventive strategies at all levels (e.g. genetic counselling, prenatal screening and diagnosis, Newborn screening), capacity building on various aspects of rare diseases including improving education and awareness among medical professionals /health care workers and public. Issues regarding making specific therapies and supportive care universally available for patients with rare diseases were important concerns, and the suggested strategies included insurance coverage, state and central government partnerships and CSR. Major stress was given to strengthen research in RD particularly in drug development. Networking of patient care services from the primary health care level to tertiary care centers was projected as an urgent need. State of Karnataka provided many examples for nationwide scale up, and highlighted creating Robust program for local prevalence data, Pyramidal model of service delivery, technical and operational research, Expansion and scale up in a phased manner. OPPI stressed on MultiStakeholder models, Central Government & the State Government collaboration, Greater role for academia, industry efforts to build awareness and diagnosis capacity. Patient advocate brought a real-life essence to the entire discussion and requested for streamlined system for counselling, awareness, diagnosis, management, drug procurement, financial and peer support

With over 120 stakeholders gathering, the event acknowledged participation from varied sectors including Ministry of Health & Family Welfare, State Health Departments, Epidemiologists, Patient Advocacy groups, Industry bodies, Healthcare professionals, Research, and academia organizations, WHO, International bodies, PSUs etc.

Key takeaways by each of the Eloquent speakers were:

Dr. Laxmikant Palo, CEO, PPHF, “Rare disease poses unique public health challenge, though the numbers are small, but conditions are complex with high burden of disease and suffering. We need to recognize people living with Rare Disease as a high-risk population and provide them with needed support.”

Takeda India GM, Mr. Koki Sato, “It is especially important to appreciate and recognize the fact that the Government is showing commitment towards rare disease by consolidating the expert views to address the patient needs and issues. It is indeed incredibly positive step in the direction of assuring the patient treatment and well-being.”

Dr. Archisman Mohapatra, Executive Director, GRID Council “Rare diseases require very strong sensitization efforts and it is multi-dimensional strategies that can really work in this space.”

Ms. Rachel Sher, Vice President Policy and Regulatory Affairs (NORD USA) “If there is a bright side to this pandemic then it is the high uptake of tele-medicine. So many people in the rare disease community for many years have tried to get access to broadened tele-medicine and amid this pandemic we are seeing an uptake like we have never seen before.

 Dr. Madhulika Kabra Professor, Division of Genetics, Department of Pediatrics, AIIMS Delhi, “We are moving in the right direction and in the last decade India has really done well around rare diseases. Capacity building efforts for education, diagnostics, prevention, research, and community education have gone in but we need further strengthening on all fronts. A sustainable strategy is to be planned for specific treatment and supportive care needs strengthening at all health care levels…I am sure we will succeed if all stakeholders join hands together and work toward this cause.

Dr. Sanjeeva GN Nodal officer – Centre of excellence for Rare diseases at Indira Gandhi institute of Child Health, Bangalore – “Rare disease being heterogeneous, one pill approach will not work in this situation. We need to have robust local data and depending on that local actions can be prioritized.” He emphasized on research on local affordable alternatives for patients and decentralization without affecting the quality of services.

Mr. KG Ananthakrishnan Director General, (OPPI), “We are going through a crisis of COVID-19 but let us take that crisis as an opportunity. I have seen a renewed focus on the health sector over the last 6 months. Building a comprehensive and sustainable policy for Rare Diseases is possible now, given the tremendous efforts of the Government in the health space. This can be achieved through multi-stake holder partnerships and collaboration.”

Mr. Saurabh Singh Patient Advocate, “Working on community awareness and medical insurance is important. Insurance companies can especially support supportive treatment.” Building greater collaboration with the stakeholders working on Rare Disease is essential to achieve greater visibility for rare diseases in India backed by a better RD policy.

About PPHF

People-to-People Health Foundation(PPHF)-, formerly known as Project HOPE India, a global health non -profit organization, works towards transforming lives for improved health and wellbeing through locally- driven solutions. It has worked in about 12 states of India to build the skills of health care providers, strengthen management capacity, help create sustainable systems to improve access to quality health services. PPHF work closely with communities and key actors on sustainable solutions for public health challenges:

1.Non-Communicable Diseases, 2.Women, Adolescent and Child health, 3.Nutrition, 4.Infectious diseases and, 5.Environmental Health.

We focus on building public health capacity and community actions for better health outcomes. We work collaboratively with stakeholders, leveraging partnerships and influencing policies and practices. Drawing on our experiences and recognizing the unique needs of each region in India, PPHF works in partnership with key stakeholders to design and deliver targeted responses. All of our programs integrate innovative, evidence-based interventions in three key areas:

1.Building the skills of health care workers and the capacity of the local health care system, 2.Improving access to quality services, 3.Establishing and expanding community support systems.

Disclaimer: The views and opinions expressed in this article are those of the authors and do not represent those of Diggaj Media. The pictures are provided by the author and is not authorized to be used by anyone else.

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