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In April 2003, there was much jubilation, justifiably so, across the world as the Human Genome Project announced that it had generated the first sequence of the human genome. It had truly opened up vistas and facilitated a better understanding of the human body, how it works, how it fails and what we need to do to treat patients. This landmark achievement meant that we now had “fundamental information about the human blueprint”, which was predicted to, and indeed, has since accelerated the study of human biology and improved the practice of medicine. India first sequenced a complete human genome in 2006, but last week’s announcement that the government had completed its ‘10,000 genome’ project too was significant. As Jacob Koshy explains, the ‘10,000 genome’ project — an attempt to create a reference database of whole-genome sequences out of India – has created a database that is representative of the diversity of India’s population, is seen as a key step to being able to learn about genetic variants that are unique to India’s population groups and use that to customise drugs and therapies. The United Kingdom, China, and the United States are among the countries that have programmes to sequence at least 1,00,000 of their genomes.
About 20 institutions across India are involved in the project with the Indian Institute of Science (IISc), Bengaluru and the Centre for Cellular and Molecular Biology, Hyderabad being the lead institutions coordinating the project.
The Indian population of 1.3 billion consists of over 4,600 population groups, and many of them are endogamous. These factors have contributed to the genetic diversity of the current population. Thus, the Indian population harbours distinct variations and often many disease-causing mutations are amplified within some of these groups. “There are harmful mutations that are less prevalent in the world but located in endogamous groups at a high frequency [relative to their population] in India,” said Kumaraswamy Thangaraj of CCMB, and one of the leaders of the initiative. “This has been a revolutionary initiative but going ahead we will need to sample many more thousands of genomes to pick out more, rare mutations.”
The main outcomes of such an enterprise would be to gain deeper insight into India’s population diversity, improve diagnostic methods and medical counselling, find genetic predispositions to disease, develop personalised and customisable drugs, improve gene therapy and throw more light on individual susceptibility to infectious disease. Do hit the link above for more on the story.
It was World Rare Diseases Day on the last day of February this year. While much has been done in the field in the last couple of years, the occasion provided a moment to pause and examine the intensity of the implementation of the policy at the field level. In a recent revelation in Parliament, in response to a question raised by Kerala MP Shashi Tharoor, shocking facts came out into the open: States that were sanctioned funds for helping treat persons with rare diseases and raise funds for their prolonged treatment, were largely unutilised. Mr. Shashi Tharoor and Shashank Shekhar followed it up with a piece in The Hindu: India’s fight against rare diseases. They start with the tragic death of 19-year-old child actress Suhani Bhatnagar from dermatomyositis, a rare disorder that causes inflammation in muscles.
They go on to recount that India accounts for one-third of the global rare disease incidence, with over 450 identified diseases. These range from widely known ones such as Spinal Muscular Atrophy and Gaucher’s disease to lesser-known ones such as Mucopolysaccharidosis type 1 and Whipple’s disease. “Though our country lacks a standard definition for rare diseases, a rough estimate suggests that about 8 crore-10 crore Indians suffer from one rare disease or another; over 75% are children. Yet these diseases are largely overlooked. Resource constraints apart, India languishes near the bottom on awareness, diagnosis, and drug development for rare diseases.” The authors point out that funds are a major challenge too. The Budget’s allocation for rare diseases, although increasing over the years, remains low at ₹93 crore for 2023-2024, with previous years. Under the National Policy for Rare Diseases guidelines, up to ₹50 lakh is allowed per patient, which will be disbursed to the concerned Centre of Excellence (CoE). As chronic rare diseases usually require lifelong management and therapy, this amount is woefully inadequate. As a result the CoEs are wary of initiating treatment they might have to suspend. The confusion shows in the fund utilisation too, the authors argue. For instance, more than ₹47 crore of the ₹71 crore financial assistance allocated to the 11 CoEs for the current year remains unused. A portal with over 1,400 registered patients has collected less than ₹3 lakh in three years. Can crowdfunding ever be a sustainable national option, they ask.
If you are interested in a primer on rare diseases, do read this story too: Despite decades of advocacy, and government backing, care for rare diseases is not optimal. What has happened in the field of rare diseases in the country has happened in the last couple of years, after nearly two decades of battle by patient support groups and organisations of rare diseases, and it is quite disheartening that that too is inadequate.
Meanwhile, Siddharth Kumar Singh reports that Niloufer Hospital in Hyderabad launched a newborn screening programme to detect rare genetic conditions. Since every step in the right direction is a step that must be taken, leaving it here.
Nearly one decade ago, to the month, the World Health Organization (WHO) certified India as polio-free on March 27, 2014. The last case of wild poliovirus in India was reported in Howrah, West Bengal on January 13, 2011. And yet, the State has continued to pay attention to polio immunisation for children under 5, still probably the largest public health intervention strategy executed on a single day as the Pulse Polio Immunisation Day. On this day, the vast public health machinery of the government stretches out to find, track and vaccinate children under five years with the Oral Polio vaccine. It is heartening to see it implemented with as much intensity as during the days when India battled with poliomyelitis, to banish it from its shores. Here’s a compilation of what different southern States did, as a record of continuing efforts to keep polio at bay:
The pulse polio drive began in Mysuru on March 3, 2024 as part of the national pulse polio programme. | Photo Credit: M.A. Sriram
2.08 lakh children to be administered with polio vaccine in Vishakapatnam.
Nellore Sravani reports that arrangements are in place for a State-wide pulse polio immunisation drive commencing on March 3 in Andhra Pradesh.
Over 97% coverage in pulse polio drive in GVMC limits.
Siddharth Kumar Singh reports: Telangana hits 92.52% Pulse Polio Vaccination coverage on inaugural day.
Pulse polio to cover 2.31 lakh children below five years in Mysuru district.
Pulse polio drive: District administration hopes to achieve 100% target in Mysuru.
Pulse polio campaign in Shivamogga records 97.79% coverage on March 3.
Pulse polio immunisation campaign in T.N. on March 3.
Pulse polio camps held in Tamil Nadu’s southern districts; railway stations, bus stands covered by Health dept. staff.
98% of children in need of oral polio immunisation covered in Tamil Nadu.
In a follow-up to its earlier judgement, the Supreme Court issued a contempt notice to Patanjali, its MD Balkrishna. Krishnadas Rajagopal reports that the Supreme Court on Tuesday issued a contempt notice against Patanjali Ayurved and its Managing Director Acharya Balkrishna for publishing advertisements of products in violation of the Drugs and Magic Remedies (Objectionable Advertisements) Act, 1954 and its Rules, despite an undertaking it had given to the court in November.
The company had, on November 21, 2023, assured the Court that it would refrain from advertising or branding its products as “permanent relief” for diseases like obesity, blood pressure, asthma, etc, in violation of the 1954 Act. The judge asked the Centre, represented by Additional Solicitor General K.M. Nataraj, whether it had taken any action on the issue of Patanjali advertisements violating the law. “The entire country has been taken for a ride. And you shut your eyes? What did you do for two years? The Act itself said that it (misleading advertisements) was prohibited. You should have taken urgent action… This is an unfortunate situation,” Justice Amanullah told the government law officer.
The judgement and action as a follow-up to the case is likely to be an index case in India. Publicising magical cures and fantastic remedies is prohibited by law, but this law is followed more in violation. While Patanjali is among the major advertisers, sometimes taking up pages in newspapers, and airtime on channels, there are multiple small-time operators, even quacks who do the same, via pamphlets and smaller advertisements. The action taken on Patanjali if strong, can serve as a deterrent, and prevent several gullible systems from launching their faith in medicines that have not been scientifically proven to do what they are supposed to do.
For more information on the issue that we have been reporting on frequently, read Saumya Kalia’s explainer: Supreme Court’s ban on Patanjali ads.
Moving over to mental health, yet another area of sustained interest for health reporters of The Hindu. Sometimes, out-of-the-box solutions are the only ones that might bring a change in the status quo. Why should it be any different for mental health? Serena Josephine M. is a fly on the wall here as experts discuss the possibility of employing an ASHA-like cadre for community mental healthcare. In a conversation held recently, Vikram Patel, Paul Farmer Professor and Chair, Department of Global Health and Social Medicine, Harvard Medical School and R. Thara, vice chairperson, Schizophrenia Research Foundation (SCARF), explored the possibility of having a cadre similar to ASHAs to take community mental healthcare forward. Dr. Patel observed: “The (Indian) government is among the first governments in the world to embrace the community health worker movement, and on a massive scale. It is an environment ready for a change. We could say that maternal, newborn and child health (MNCH) issues, which dominated the ASHA movement, are no longer major concerns. Let’s say Tamil Nadu does not need ASHAs for maternal and child health, Kerala does not need it, and Karnataka probably does not either. So, could the south of India see the repurposing of the ASHA into a community health worker who is paid, not incentivised….Could these States pioneer this kind of support such that every person who is discharged from a psychiatric facility - whether in the public or private sector - based on where they live, is allocated a local community health worker to support them?”
An interesting enough idea that the State would do well to consider.
Preeti Zachariah examines the contours of the mental health landscape of Bengaluru anchored from a discussion on how NIMHANS has remained at the centre of mental health care, and embraced by the community too.
We saw, earlier, about the significance of campaigning during an election season for the health rights of citizens. In an extension, this week, there is the story by Bindu Shajan Perappadan on IMA’s charter of demands ahead of the 2024 election, which calls integrative medicine a threat. The charter of 10 demands includes seeking that the government do away with any integration of various systems of medicines, bring in strong laws to prevent violence against doctors, rationalise Goods and Service Tax (GST) on various medical equipment, and withdraw the proposed National Exit Test for Indian MBBS graduates. Notably, the IMA had also distributed its ‘health manifesto’ to over 50 lawmakers across all national parties.
This charter lays emphasis on the ills of integrating systems of medicine, very strongly: “The IMA has maintained that integrative medicine is a threat to patient care and safety. It is a health catastrophe in waiting. A cafeteria approach with the patients having the right to choose is the only acceptable solution. The IMA demands that the attempts to integrate various systems of medicine be stopped forthwith in the best interests of our people and the systems of medicine,’’ IMA national president R.V. Asokan said.
With the Central Government itself being the most prominent advocate of integrating the practice of allopathy with various systems of Indian medicine, it remains to be seen what will come of this demand. Meanwhile, the demand to scientifically validate these alternative systems of medicine has also gained ground.
It was truly joyous to see the Supreme Court prioritise people’s right to health over commerce. The apex court, this week dismissed Vedanta’s plea to reopen the Thoothukudi copper plant. The apex court noted that though the Thoothukudi plant was contributing to production and employment, the Madras High Court was right in upholding essential principles of sustainable development, polluter pays principle, and public health doctrine. The health issue of the local populace was of ultimate concern, and the State was obliged to protect them. It is always a heady feeling when one of the pillars of democracy strikes a strident note for health rights in the country.
In our tailpiece segment for the week, let’s talk about cannabis. Or let’s read Dr. Alok Kulkarni’s talk about the rocky vista of medicinal cannabis research that is bringing into view. “C. sativa is also the most widely used illicit drug worldwide. The frequency and potency of cannabis use have also exploded in the last two decades, prompting broader debates about the decriminalisation of cannabis. This is partly because of the resurgence of interest in cannabis as medicine. Jurisdictions around the world are legalising medical use of cannabis; some have also legalised recreational use. Many of them are in the West but other countries are taking note as well.If India were to ever decriminalise cannabis, policymakers should ensure it isn’t commercialised and that there are protections against use by children, adolescents, and those with established mental illnesses – the populace most vulnerable to the detrimental effects of cannabis.
From the Health page
If you have a few extra moments, then do consider spending them on the following stories:
Zubeda Hamid on what drives the illegal organ trade in India? | In Focus podcast
I write on the Lancet study: Obesity rates going up across the world.
S. Vjijay Kumar reports: Organ failure has become a health crisis, says Union Health Minister in letter to CMs.
Jaydeep Tank on the power of choice: a case for life-saving modern contraception.
Comic books to aid in nutritional awareness in India.
Japan records lowest births in 2023; government says declining birth rate at ‘critical state’;
We realise that you might want to read a bit more about the immediate health news in your region, so here’s a list of regional content that appeared all week:
Delhi
Delhi HC dismisses plea challenging mandatory registration of doctors with DMC.
Karnataka
Study on cardiometabolic health status of CSIR-CFTRI employees undertaken.
Vacant posts in Health Department to be filled in phases: Dinesh Gundu Rao.
Mental health should be viewed as a component of overall well-being, says mental health professional.
Organ donations rising in Karnataka, but not enough to keep pace with demand.
Doctor and two hospital employees were suspended after deaths at Tumakuru maternity hospital.
‘Women should prioritise health despite work pressure’
Kerala
With an eye on health, Malappuram restaurants to serve food with less sugar, salt, oil.
Wales to welcome up to 250 nurses, doctors, and their families from Kerala.
C. Maya writes: Hepatitis A outbreaks bring back focus on vaccination in Kerala.
G. Krishnakumar writes on the many hurdles of foreign medical graduates in India.
Kerala Health department issues guidelines for immunisation.
Odisha
Odisha hikes monthly remuneration of Anganwadi workers to ₹10,000.
Puducherry
IGMCRI steps up newborn care with human milk bank set up on the premises.
Rajasthan
Rajasthan Government to upgrade mini-Anganwadis to full-fledged centres.
Tamil Nadu
Chief Minister opens GKNMH Medical Research Institute and Outpatient Centre in Coimbatore.
RGGGH pilots token system for outpatients.
AIIMS delay in Madurai owing to Centre’s failure to press Japan agency for funds, says Health Minister.
Special ward for high-risk mothers set up at UPHC in Thanjavur.
Robotic surgery method used to remove renal tumour in 71-year-old patient.
Physiotherapists protest against designation of ‘technicians’.
Over 4,800 persons with suspected symptoms of diabetes and hypertension identified during screening.
Telangana
Make healthtech accessible to rural people, poor, says Telangana Governor.
As always, do put us on your radar, as we bring more health content your way. Get more of The Hindu’s health coverage here.
Published - March 05, 2024 02:53 pm IST
