Check out the important ideas, phrases, quotes, or phenomena each day and brush up your data. Right here’s your data nugget for at this time.
Information Nugget: Uncommon ailments
Topic: Well being
(Relevance: Well being and authorities insurance policies relating to it kind an essential part of the UPSC syllabus. In 2020, UPSC requested questions on geriatric and maternal healthcare. Equally, in 2018, a query was requested on native community-level healthcare intervention to realize ‘Well being for all.’)
Why within the information?
On October 4, the Delhi Excessive Court docket directed that the Centre set up a Nationwide Fund for Uncommon Ailments and allocate Rs 974 crore for 2024-25 and 2025-26. This was to be accepted and transferred in 30 days. It additionally stated “therapy for all eligible… sufferers, as per an AIIMS report dated July 21, who’re earlier than the court docket in these batches of petitions shall start in 45 days as per the NRDC (Nationwide Uncommon Ailments Committee) suggestions.”
Key Takeaways:
1. The World Well being Organisation (WHO) has outlined uncommon ailments as a debilitating, lifelong situation that impacts 1 or fewer individuals in 1,000. Round 6% to eight% of the inhabitants is estimated to have a uncommon illness, that means 8.4 crore to 10 crore Indians live with these situations for which therapies both don’t exist or therapies are extraordinarily costly. Some widespread uncommon ailments are Haemophilia, Pompe illness, Thalassemia, Sickle-cell Anaemia, and Gaucher’s illness.
2. The Delhi Excessive Court docket stated that the Nationwide Uncommon Ailments Committee (NRDC), which was constituted on Might 15, 2023, shall proceed to perform for an additional interval of 5 years with the ICMR director basic as chairperson of the committee. The Court docket additionally directed the federal government to broaden the present variety of centres of excellence (COEs) “contemplating affected person density”. As of 2023, there have been 11 COEs throughout the nation.
3. At the moment, 63 uncommon ailments are included underneath the Nationwide Coverage for Uncommon Ailments, which was beneficial by the Central Technical Committee for Uncommon Ailments (CTCRD).
4. Therapies can be found for lower than 5% of uncommon ailments, resulting in lower than 1 in 10 sufferers receiving disease-specific care. Present therapies are sometimes very costly. Whereas the Centre supplies monetary help to varied CoEs for therapy, stakeholders have gone to court docket to spotlight challenges in accessing funds.
5. In India, uncommon ailments are categorised into three teams based mostly on the character and complexity of obtainable therapy choices.
→ Group 1 contains ailments that may be handled with a one-time healing process.
→ Group 2 ailments require long-term or lifelong therapy that are comparatively more cost effective and have proven documented advantages, however sufferers want common check-ups.
→ Group 3 ailments are these for which efficient therapies can be found, however they’re costly and should typically proceed lifelong. There are challenges in deciding on the precise beneficiaries for these therapies.
6. Many medicines and therapies for uncommon ailments are patented, which makes them very costly. The marketplace for these medicine is small and the event prices are excessive, so pharmaceutical firms typically don’t discover it worthwhile to supply them, pushing up costs. Due to this fact, these medicine are known as ‘orphan medicine’
| In Mohd Ahmed (Minor) v. Union of India (2014), the Delhi Excessive Court docket dominated that the “proper to well being” is an important part of the “proper to life” underneath Article 21 of the Indian Structure. |
BEYOND THE NUGGET: Present Funding Coverage for Uncommon Ailments in India
1. In 2021, the Nationwide Coverage for Uncommon Ailments (NPRD) was launched. Underneath this coverage, monetary help as much as Rs 50 lakh is offered to sufferers receiving therapy at an recognized CoE. The CoEs embody AIIMS in Delhi, PGIMER in Chandigarh, and the Institute of Postgraduate Medical Training and Analysis at Kolkata’s SSKM Hospital.
2. The Well being Ministry has opened a Digital Portal for Crowdfunding & Voluntary Donations with details about sufferers and their uncommon ailments, the estimated value of therapy, and financial institution particulars of the CoEs. Donors can select the CoE and affected person therapies they want to help. Every CoE additionally has its personal Uncommon Illness Fund, which is used with approval from its governing authority.
3. In August 2024, the federal government advised Parliament that monetary help of Rs 24 crore had been launched to CoEs for treating uncommon illness sufferers till August within the present monetary 12 months.
4. The import of uncommon illness medicines by sufferers doesn’t appeal to customs responsibility, however firms that carry these medicine to India nonetheless pay 11% customs responsibility and 12% GST.
5. On January 3, 2019, the Division of Prescription drugs underneath the Union Ministry of Chemical compounds and Fertilisers issued an order liberating orphan medicine from value controls. The Excessive Court docket expressed concern over this exemption, saying “the place can not proceed on this method”.
|
Uncommon Illness Day |
| Uncommon Illness Day is noticed yearly on the final day of February to boost consciousness amongst individuals and decision-makers about uncommon ailments and their affect on sufferers’ lives. |
(Supply: ‘Don’t cease or interrupt remedy’, Points within the therapy of ‘uncommon ailments, Delhi HC directs Centre)
In your queries and options write at khushboo.kumari@indianexpress.com
Subscribe to our UPSC e-newsletter. Keep up to date with the most recent UPSC articles by becoming a member of our Telegram channel – IndianExpress UPSC Hub, and comply with us on Instagram and X.
