As the name suggests, rare diseases are rare but affect millions worldwide, most of whom may be left untreated due to challenges in timely diagnosis and access to treatment. The story in India is no different and maybe more complicated. The country is said to have one-third of the world’s rare disease population. This presents an opportunity to identify the issues and challenges to bridge the gap and bring value to patients with rare diseases.
Over the years, India’s rare disease landscape has witnessed considerable evolution with sustained and focused discussions. Today, the most pertinent challenge for rare disease patients is early diagnosis, availability of resources, and access to healthcare professionals. While disease awareness is gaining momentum, it is instrumental in working on a multi-pronged ecosystem approach to creating a model that ensures access to awareness, diagnosis, and treatment.
Strategic partnerships may prove instrumental in mobilizing efforts and resources across hierarchies and beyond the health sector to build a solution-oriented approach for rare diseases with the vision of universal health coverage. The responsibility of the industry is also significant here. The industry should continue investing in the research and development of rare disease drugs to bring innovative healthcare solutions to patients. Given the gap between the number of patients and investment in terms of human resources, infrastructure, and availability of resources, an innovative pricing model may be worked upon in alignment with government support to bring additional value to patients and society.
The Public-Private Partnerships (PPP) model may also add significant stimulus to the system to drive national-level disease awareness, education, and improving capacity to broaden the impact of such initiatives and efforts. Partnerships and alliances could additionally present a solid platform for stakeholders across the value chain to bring their knowledge, expertise, and understanding to the table to build pragmatic long-term sustainable solutions for patients.
Technology today is integral to human existence. When it comes to rare diseases, technological innovations could support creating crowd-sourced open access disease registries, a range of virtual knowledge, a platform for telemedicine, and telehealth services to help healthcare professionals manage diseases in the most effective manner.
National and regional consultations on rare diseases, the challenges, and probable solutions over the past couple of months have garnered a commitment from stakeholders across the industry, PAGs, and different government entities at various levels. It is now time for all stakeholders to address the rare diseases’ ecosystem gaps to collaboratively build a sustainable roadmap for better health and a brighter future for the patients suffering from rare diseases.
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