Govt publishes policy for treatment of rare diseases
Relevance: Mains: G.S paper II: Health
Why in news?
- The Union Ministry of Health and Family Welfare published a national policy for treatment of rare diseases, listing 450 diseases as rare but not providing a detailed roadmap on treatment.
News summary
- In India, Haemophilia, Thalassemia, Sickle cell anaemia and Primary Immuno Deficiency in children, auto-immune diseases, Lysosomal storage disorders such as Pompe disease and Gaucher’s disease are in the rare diseases list.
- The latest policy creates three categories of rare diseases — diseases requiring one-time curative treatment, diseases which need long-term treatment but the cost is low, and diseases that require life-long treatment and the cost is high.
- The policy states that the Centre will provide assistance of Rs 15 lakh to patients suffering from rare diseases that require one-time curative treatment under the Rashtriya Arogya Nidhi scheme. The treatment is limited to beneficiaries of Pradhan Mantri Jan Arogya Yojana.
- It also recommends crowd funding as a source to fund treatment of rare diseases.
- The policy also intends to kick-start a registry of rare diseases that Indian Council of Medical Research will maintain.
Maternity scheme beneficiaries
Relevance: Mains: G.S paper II: Polity: Government policies and interventions for development in various Sectors and issues arising out of their design and implementation incl. Housing
Context
- A vital programme to support lactating mothers and pregnant women by compensating them for loss of wages during their pregnancy has been able to reach less than a third of the eligible beneficiaries.
• The researchers who extrapolated from data obtained under the Right to Information (RTI) Act said.
Pradhan Mantri Matru Vandana Yojana
- Almost 61% of beneficiaries registered under the Pradhan Mantri Matru Vandana Yojana (PMMVY) between April 2018 and July 2019 (38.3 lakh out of the total 62.8 lakh enrolled) received the full amount of ₹6,000 promised under the scheme, according to an RTI reply.
• However, the researchers, who are development economists, assert that since the scheme failed to reach at least 49% of all mothers who would have delivered their first child (an estimated total of 123 lakh for 2017 according to the researchers), the scheme was able to benefit only 31% of its intended beneficiaries.
• The PMMVY is targeted only at women delivering their first child.
• A cash amount of ₹6,000 is transferred to the bank account of the beneficiary in three instalments upon meeting certain conditions including early registration of pregnancy, having at least one ante-natal check-up and registration of child birth.
The stipulated conditions
- The scheme brings under its ambit 23% of all births and pays full benefits to a mere 14% of all births, which was at 270.5 lakh for 2017.
• The meagre reach calculated is also an overestimate, asserts Ritika Khera, Assistant Professor, IIM Ahmedabad.
• The actual number of beneficiaries would have been higher for 2018-2019, she contends, as the figure increases from one year to the next.
• The data extrapolated from the RTI reply is also consistent with a survey coordinated by three development economists Jean Dreze, Anmol Somanchi and Ms. Khera.
• The survey was conducted to assess the implementation of the scheme.
• The survey team covered a district each in six States — Chhattisgarh, Himachal Pradesh, Jharkhand, Madhya Pradesh, Uttar Pradesh and Odisha — in 2019 to interview women and inspect anganwadis.
• A total of 706 women were interviewed, including 342 pregnant and 364 lactating women.
Inadequate awareness
- The study found that only 50% of pregnant women and 57% of nursing women surveyed were eligible for the scheme.
• It also throws light on the need for higher awareness among the pool of beneficiaries — only 66% of pregnant women and 69% of nursing women knew about the scheme. Only 8% of pregnant women and 23% of nursing mothers received some benefits.
Shortcomings
- Several factors impeded proper implementation of the programme that aims to fight malnutrition among children.
• These include an application form of about 23 pages, a slew of documents such as mother-child protection card, Aadhaar card, husband’s Aadhaar card and bank passbook aside from linking their bank accounts with Aadhaar.
• The requirement to produce the husband’s Aadhaar card results in excluding women who may be living with men they are not married to, single mothers and those who may be staying at their natal home.
• Women must also have the address of their marital home on their Aadhaar card, which often results in newly weds being either left out or forced to go from door-to-door when pregnant and needing rest and care.
• Odisha, which decided to not implement PMMVY because it has its own State-sponsored scheme called ‘Mamata’ that includes two births, has a few lessons to offer through its near universal coverage.
Way ahead
- According to the survey, 95% of pregnant women and 89% of nursing mothers had been enrolled, the level of awareness was more than 90% among the two categories of women.
• However, there were long delays in transferring the cash amount to the beneficiaries resulting in only 35% of all women who were pregnant and 67% of all nursing women receiving some benefits.
• The survey findings also highlight the need to pay greater attention to the special needs of pregnancy good food, extra rest and health care.
• Only 22% of the nursing women surveyed reported that they had been eating more than usual during their pregnancy and the average weight gain was barely 7kg when it should be at least 13-18kg.
• Almost all the respondents had done household work regularly during their last pregnancy.
• 21% of nursing women said that they had no one to help them with domestic chores and 63% said that they had been working right until the day of delivery.