CJI DY Chandrachud | (Photo: PTI)
Chief Justice of India DY Chandrachud on Saturday stressed the need to create awareness about rare diseases in society, to be empathetic and supportive to such parents and their families irrespective of cultural, religious or traditional barriers.
He said we can no longer afford to ignore genetic diseases.
Citing the National Policy on Rare Diseases launched by the Ministry of Health and Family Welfare in March 2021, he said more research is needed to define the definition of rare diseases and stressed the need to ensure equitable access to advanced medical therapy like gene therapy in a diverse nation like India.
Speaking at the conference organised by Narayana Nethralaya Foundation on Gene Therapy and Precision Medicine, Justice Chandrachud said, “In a country like India, which is home to the largest population in the world with over 4,600 distinct population groups, many of which are endogamous, we are faced with an increased burden of rare diseases. Unfortunately, such innovative therapies remain largely unavailable in India and other low- and middle-income countries. This is a situation that needs to change.”
Mentioning the country’s first indigenous gene therapy for cancer, launched by President Droupadi Murmu in April, the CJI said CAR T cell therapy has often been inaccessible globally due to its prohibitive costs.
“But the therapy introduced today is not only revolutionary, it also represents the most affordable CAR T-cell treatment in the world, and embodies the spirit of the Make in India initiative. While this innovation is a spark, we face a pressing challenge: ensuring access to such treatments for all patients, particularly those in underserved regions,” he said.
She also noted how people from marginalized communities face persistent barriers to accessing health care.
“Social determinants of health outside the healthcare system, such as class, caste, gender and regional location, often play a significant role in determining a person’s health status. Inequity in healthcare becomes apparent when we look at people not only through the lens of clinical symptoms, but by understanding their social determinants of health. This reality highlights the pressing need for targeted interventions that address these systemic barriers,” she said.
The CJI also emphasized how access to essential treatments is a fundamental aspect of the right to health, along with Article 21 of the Constitution (protection of life and personal liberty) and the need to design strategies that improve access to cutting-edge precision diagnostics and genetic therapies across the country.
She said increasing awareness among health care providers and patients about available treatments and ongoing clinical trials can empower more people to seek and receive appropriate care.
To truly address accessibility, we need to address the third key issue, which is affordability.
Recently, in a series of petitions filed by parents of children with rare diseases, the Delhi High Court clarified that no duties or customs charges should be levied on medicines, drugs and therapies for rare diseases, and urged customs authorities to ensure that these items are cleared promptly and without unnecessary delay.
“These initiatives represent a step forward in our efforts to improve access to essential treatments. However, to effectively address these challenges, we must prioritize the development of indigenous technologies specifically tailored to our patient population. This involves creating partnerships between research institutions, pharmaceutical companies and the government to promote innovation in the creation of affordable therapies,” he said.
He said the government must support our innovations in treating rare diseases by putting its backbone behind the evolution of technology.
“Supporting the advancement of gene therapy and the treatment of rare diseases requires a multi-institutional approach. There are three essential types of support that are needed first for any progress to occur. The first step is societal awareness. The general public needs to gain more knowledge, empathy and support for rare disease patients and their families, regardless of cultural, religious or traditional barriers.
“We can no longer afford to ignore genetic diseases,” he stressed.
Therefore, raising awareness across society about the realities of these diseases is crucial to building a culture of support, she said.
“Secondly, public-private collaboration as well as partnerships with global biotech and pharmaceutical giants have fostered an enabling environment for innovation in India… To further promote innovation in gene therapy and rare diseases, the industry needs to step up its support through corporate social responsibility initiatives or direct investment in startups,” Justice Chandrachud said.
He also noted that proposals for incentives and tax benefits should be put forward to encourage greater industry participation, especially since the market for treating their diseases is relatively small.
(Only the headline and image of this report may have been reworked by Business Standard staff; the rest of the content is auto-generated from a syndicated feed.)
First published: September 21, 2024 | 21:01 IS
Disclaimer:
The information contained in this post is for general information purposes only. We make no representations or warranties of any kind, express or implied, about the completeness, accuracy, reliability, suitability or availability with respect to the website or the information, products, services, or related graphics contained on the post for any purpose.
We respect the intellectual property rights of content creators. If you are the owner of any material featured on our website and have concerns about its use, please contact us. We are committed to addressing any copyright issues promptly and will remove any material within 2 days of receiving a request from the rightful owner.