Dr. Harsh Vardhan, Union Health & Family Welfare Minister approved the “National Policy for Rare Diseases 2021” on 30th March 2021. The policy document has been uploaded on the website of Ministry of Health & Family Welfare. For quite some time different stake holders have been demanding for a comprehensive policy for prevention and management of rare diseases.
The field of rare diseases is very complex and heterogeneous and prevention, treatment and management of rare diseases has multiple challenges. Early diagnosis of rare diseases is a major challenge owing to a variety of factors that include lack of awareness among primary care physicians, lack of adequate screening and diagnostic facilities etc.
There are also fundamental challenges in the research and development for the majority of rare diseases as relatively little is known about the pathophysiology or the natural history of these diseases particularly in the Indian context. Rare diseases are also difficult to research upon as the patients pool is very small and it often results in inadequate clinical experience. Availability and accessibility to medicines are also important to reduce morbidity and mortality associated with rare disease. Despite progress in recent years, there is a need to augment effective and safe treatment for rare diseases. The cost of treatment of rare diseases is prohibitively expensive. Various High Courts and the Supreme Court have also expressed concern about lack of a national policy for rare diseases.
To address all these challenges, a very comprehensive National Policy for Rare Diseases 2021 has been finalized by the Ministry of H&FW after multiple consultations with different stakeholders and experts in the area. Draft Policy for Rare Diseases was put in public domain on 13th January 2020 on which comments/views were invited from all stakeholders, general public, organization and States and Union Territories. All the comments received were examined in depth by an Expert Committee constituted by the Ministry.
The Rare Diseases Policy aims to lower the high cost of treatment for rare diseases with increased focus on indigenous research with the help of a National Consortium to be set up with Department of Health Research, Ministry of Health & Family Welfare as convenor. Increased focus of research and development and local production of medicines will lower the cost of treatment for rare diseases. The policy also envisage creation of a national hospital based registry of rare diseases so that adequate data is available for definition of rare diseases and for research and development related to rare diseases within the country.
All public transport suspended, new directives issued for lockdown
The government of Bangladesh announced that all public transport services including roads, waterways, railways and domestic flight will remain suspended during the week-long lock-down.
In a new circular the government has directed that freight and emergency services will not come under the purview of the lockdown. All the government and private offices will provide their own transport for the employees to operate on a limited scale. The earlier circular had already limited the number of employees attending office to fifty percent of the capacity. Industries and factories will operate in shifts with due health safety measures for their workers.
People will not be allowed to move out between 6 in the evening to 6 in the morning, except for emergency situations. Shops, malls and restaurants will be closed but they can continue operating online. Household items can be bought and sold only in open spaces. Banks will issue directives to continue their work on a limited scale. Armed forces will take measures to establish a field hospital in Dhaka.
Prime Minister Sheikh Hasina has directed the authorities to ensure the observance of directives properly. She said that the government is keen to keep the economic activities running but saving the lives of people is the first priority.
AstraZeneca Covid-19 vaccine 76% effective in updated US trial results
AstraZeneca said its Covid-19 vaccine was 76% effective at preventing symptomatic illness, citing a new analysis of up-to-date results for its major US trial.
US health officials earlier in the week publicly rebuked the drugmaker for using "outdated information" when calculating that the vaccine was 79% effective.
That marked a new setback for the vaccine that was once hailed as a milestone in the fight against the Covid-19 pandemic, but has been dogged by questions over its effectiveness and possible side-effects.
AstraZeneca reiterated on Thursday that the shot, developed with Oxford University, was 100% effective against severe or critical forms of the disease.
It also said the vaccine showed 85% efficacy in adults 65 years and older.
The latest trial data, which has yet to be reviewed by independent researchers or regulators, was based on 190 infections and 32,449 participants in the United States, Chile and Peru. The earlier interim data was based on 141 infections through Feb. 17.
Dortmund's Moukoko ruled out for rest of the season due to injury
Borussia Dortmund's teenage striker YoussoufaMoukoko has been ruled out for the rest of the season after suffering a ligament injury.
Moukoko is the youngest player to score in the Bundesliga after netting in December against Union Berlin at the age of 16.
He injured his leg in the last training session with Germany's Under-21 squad last month ahead of the Under-21 European Championship and was initially expected to recover in a few days.
Moukoko's absence is a blow for Dortmund, who are at risk of missing out on Champions League football next season following Saturday's 2-1 loss to Eintracht Frankfurt that left them fifth in the Bundesliga, seven points off fourth place with seven games left.