Topic 1 : Inaccessibility and cost cripple efforts to treat sickle cell disease
Introduction
People from marginalised tribal communities, face a battle even to access basic healthcare and diagnostics. Treatments like CRISP cost $2-3 million and bone marrow donors are difficult to find.
Sickle cell disease
- SCD is an inherited haemoglobin disorder in which red blood cells (RBCs) become crescent or sickle-shaped due to a genetic mutation.
- These RBCs are rigid and impair circulation, often leading to anaemia, organ damage, severe and episodic pain, and premature death.
- India has the third highest number of SCD births, after Nigeria and the Democratic Republic of the Congo.
- It is also one of the 21 “specified” disabilities listed in the Schedule of the Rights of Persons with Disabilities Act 2016.
Access to treatment a major issue
- In 2023, the Government of India launched the National Sickle Cell Anaemia Elimination Mission, to eliminate SCD by 2047.
- At present, however, treatment and care for SCD remains grossly inadequate and inaccessible.
- An apposite example is the (un)availability of the drug hydroxyurea.
- It lessens the severity of pain, reduces hospitalisations, and improves survival rates by increasing the size and flexibility of RBCs and lowering their likelihood of becoming sickle-shaped.
- Even though the National Health Mission’s Essential Medicines List requires the drug to be availed at the primary healthcare level, hydroxyurea is currently only available in certain tertiary-level facilities, such as medical colleges.
- Blood transfusion is another important therapy for SCD, but its availability is limited to district-level facilities.
- Pain medications, from painkillers to non-steroidal anti-inflammatories and opioids, are also scarce.
- Bone marrow transplantation (BMT), until recently the other cure for SCD, is out of reach for most SCD patients due to the difficulty in finding matched donors, the high cost of the treatment at private facilities, and long waiting times in public hospitals.
Access to and equity of CRISPR
- In light of this, the application of the gene-editing technology called CRISPR (short for ‘Clustered Regularly Interspaced Short Palindromic Repeats’) to treat SCD is important — for its novelty and promise but also for the health disparities it makes apparent.
- The U.S. Food and Drug Administration recently approved two gene therapies, Casgevy and Lyfgenia, to treat SCD in people ages 12 and older.
- CRISPR’s inventors have won a Nobel Prize and it is celebrated as a revolutionary innovation, but its treatment cost of $2–3 million keeps it out of reach of most of those affected in countries where SCD is endemic.
- While researchers and policymakers are considering potential alternatives to improve access in low- and middle-income countries, such high-tech therapies require advanced care in well-resourced hospitals, too, bringing with it challenges of availability, affordability, and quality — which disproportionately affect the poor and marginalised.
CRISPR in India
- In India, CRISPR’s possible medical applications also pose ethical and legal quandaries.
- The National Guidelines for Stem Cell Research 2017 prohibit the commercialisation of stem cell therapies and allow the use of stem cells only for clinical trials, except for BMT for SCD.
- Gene-editing stem cells is allowed only for in-vitro studies.
- The Guidelines also encourage (but don’t mandate) the sharing of financial benefits resulting from the commercialisation of stem cell products with the donor or community.
- India has approved a five-year project to develop CRISPR for sickle cell anaemia. Under its Sickle Cell Anaemia Mission, the Council of Scientific and Industrial Research is developing gene-editing therapies for SCD.
Way forward
The need of the hour is an approach that focuses on integrating these multiple issues of access to diagnostics, drugs, health information and community support.
Topic 2 : The need to curb black carbon emissions
Introduction
At the COP26 climate talks in Glasgow in November 2021, India pledged to achieve net-zero emissions by 2070, positioning itself as a frontrunner in the race to carbon neutrality. According to the Ministry of New and Renewable Energy, India had installed a renewable energy capacity of over 180 GW by 2023 and is expected to meet its target of 500 GW by 2030. While carbon dioxide mitigation strategies will yield benefits in the long term, they need to go hand-in-hand with efforts that provide short-term relief.
Black carbon
- Black carbon is the dark, sooty material emitted alongside other pollutants when biomass and fossil fuels are not fully combusted.
- It contributes to global warming and poses severe risks.
- Studies have found a direct link between exposure to black carbon and a higher risk of heart disease, birth complications, and premature death.
- According to a 2016 study, the residential sector contributes 47% of India’s total black carbon emissions.
- Industries contribute a further 22%, diesel vehicles 17%, open burning 12%, and other sources 2%.
PMUY
- In May 2016, the Government of India said the Pradhan Mantri Ujjwala Yojana (PMUY) would provide free liquefied petroleum gas (LPG) connections to households below the poverty line.
- The primary objective was to make clean cooking fuel available to rural and poor households and reduce their dependence on traditional cooking fuels.
- The PMUY has established infrastructure to go with LPG connections, including free gas stoves, deposits for LPG cylinders, and a distribution network.
- The programme has thus, been able to play a vital role in reducing black carbon emissions, as it offers a cleaner alternative to traditional fuel consumption.
- A study finds out that up to half of all the energy needs of a PMUY beneficiary household are still met by traditional fuels, which have high black carbon emissions.
- A shortage of LPG and higher usage of traditional fuels also affect women and children disproportionately.
Government’s role
- While the future holds the promise of meeting energy needs in rural areas through renewable sources, the immediate benefits for rural communities are poised to come from using LPG.
- In October 2023, the government increased the LPG subsidy to ₹300 from ₹200. But with rapid increase in LPG prices over the last five years, the cost of a 14.2-kg LPG cylinder, even with an additional subsidy, is still about ₹600 per cylinder.
- Most PMUY beneficiaries find the price too high, more so since cow dung, firewood, etc. are ‘free’ alternatives.
- While it is the rightful duty of the government to make clean fuel affordable through subsidies, the problem of low refill rates will persist if availability issues are not addressed.
- Another big hurdle to the PMUY’s success is the lack of last-mile connectivity in the LPG distribution network, resulting in remote rural areas depending mostly on biomass.
- One potential solution to this issue is the local production of coal-bed methane (CBM) gas by composting biomass.
- CBM is a much cleaner fuel with lower black-carbon emissions and investment.
- Panchayats can take the initiative to produce CBM gas locally at the village level, ensuring every rural household can access clean cooking fuel.
Conclusion
Prioritising black carbon reduction through initiatives such as the PMUY scheme can help India become a global leader in addressing regional health concerns and help meet its Sustainability Development Goal of providing affordable clean energy to everyone and contributing to global climate mitigation.