Deprecated (16384): The ArrayAccess methods will be removed in 4.0.0.Use getParam(), getData() and getQuery() instead. - /home/brlfuser/public_html/src/Controller/ArtileDetailController.php, line: 150
 You can disable deprecation warnings by setting `Error.errorLevel` to `E_ALL & ~E_USER_DEPRECATED` in your config/app.php. [CORE/src/Core/functions.php, line 311]
Code Context


        trigger_error($message, E_USER_DEPRECATED);

    }
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 You can disable deprecation warnings by setting `Error.errorLevel` to `E_ALL & ~E_USER_DEPRECATED` in your config/app.php.'
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deprecationWarning - CORE/src/Core/functions.php, line 311
Cake\Http\ServerRequest::offsetGet() - CORE/src/Http/ServerRequest.php, line 2421
App\Controller\ArtileDetailController::index() - APP/Controller/ArtileDetailController.php, line 150
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Cake\Http\ActionDispatcher::_invoke() - CORE/src/Http/ActionDispatcher.php, line 120
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Cake\Http\Runner::__invoke() - CORE/src/Http/Runner.php, line 65
Cake\Error\Middleware\ErrorHandlerMiddleware::__invoke() - CORE/src/Error/Middleware/ErrorHandlerMiddleware.php, line 96
Cake\Http\Runner::__invoke() - CORE/src/Http/Runner.php, line 65
Cake\Http\Runner::run() - CORE/src/Http/Runner.php, line 51
Cake\Http\Server::run() - CORE/src/Http/Server.php, line 98

Deprecated (16384): The ArrayAccess methods will be removed in 4.0.0.Use getParam(), getData() and getQuery() instead. - /home/brlfuser/public_html/src/Controller/ArtileDetailController.php, line: 151
 You can disable deprecation warnings by setting `Error.errorLevel` to `E_ALL & ~E_USER_DEPRECATED` in your config/app.php. [CORE/src/Core/functions.php, line 311]
Code Context


        trigger_error($message, E_USER_DEPRECATED);

    }
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 You can disable deprecation warnings by setting `Error.errorLevel` to `E_ALL & ~E_USER_DEPRECATED` in your config/app.php.'
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deprecationWarning - CORE/src/Core/functions.php, line 311
Cake\Http\ServerRequest::offsetGet() - CORE/src/Http/ServerRequest.php, line 2421
App\Controller\ArtileDetailController::index() - APP/Controller/ArtileDetailController.php, line 151
Cake\Controller\Controller::invokeAction() - CORE/src/Controller/Controller.php, line 610
Cake\Http\ActionDispatcher::_invoke() - CORE/src/Http/ActionDispatcher.php, line 120
Cake\Http\ActionDispatcher::dispatch() - CORE/src/Http/ActionDispatcher.php, line 94
Cake\Http\BaseApplication::__invoke() - CORE/src/Http/BaseApplication.php, line 235
Cake\Http\Runner::__invoke() - CORE/src/Http/Runner.php, line 65
Cake\Routing\Middleware\RoutingMiddleware::__invoke() - CORE/src/Routing/Middleware/RoutingMiddleware.php, line 162
Cake\Http\Runner::__invoke() - CORE/src/Http/Runner.php, line 65
Cake\Routing\Middleware\AssetMiddleware::__invoke() - CORE/src/Routing/Middleware/AssetMiddleware.php, line 97
Cake\Http\Runner::__invoke() - CORE/src/Http/Runner.php, line 65
Cake\Error\Middleware\ErrorHandlerMiddleware::__invoke() - CORE/src/Error/Middleware/ErrorHandlerMiddleware.php, line 96
Cake\Http\Runner::__invoke() - CORE/src/Http/Runner.php, line 65
Cake\Http\Runner::run() - CORE/src/Http/Runner.php, line 51
Cake\Http\Server::run() - CORE/src/Http/Server.php, line 98

Warning (512): Unable to emit headers. Headers sent in file=/home/brlfuser/public_html/vendor/cakephp/cakephp/src/Error/Debugger.php line=853 [CORE/src/Http/ResponseEmitter.php, line 48]
Code Context
            if (Configure::read('debug')) {

                trigger_error($message, E_USER_WARNING);

            } else {
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        LATEST NEWS UPDATES |  Disquiet over govt.’s new policy for rare diseases -Bindu Shajan Perappadan and Jacob Koshy    </title>
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The policy has absolutely no consideration for Group 3 patients who require lifelong treatment support, say organisations

Caregivers to patients with &lsquo;rare diseases&rsquo; and affiliated organisations are dissatisfied with the National Policy for Rare Diseases, 2021 announced on Wednesday. Though..."/>
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The policy has absolutely no consideration for Group 3 patients who require lifelong treatment support, say organisations

Caregivers to patients with &lsquo;rare diseases&rsquo; and affiliated organisations are dissatisfied with the National Policy for Rare Diseases, 2021 announced on Wednesday. Though..." />
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    <h1 class="cat-box-title"> Disquiet over govt.’s new policy for rare diseases -Bindu Shajan Perappadan and Jacob Koshy</h1>
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                            <p style="text-align:justify">-The Hindu</p><p style="text-align:justify"><em>The policy has absolutely no consideration for Group 3 patients who require lifelong treatment support, say organisations</em></p><p style="text-align:justify">Caregivers to patients with &lsquo;rare diseases&rsquo; and affiliated organisations are dissatisfied with the National Policy for Rare Diseases, 2021 announced on Wednesday. Though the document specifies increasing the government support for treating patients with a &lsquo;rare disease&rsquo;&mdash; from 15 lakh to 20 lakh &mdash; caregivers say this doesn&rsquo;t reflect actual costs of treatment.</p><p style="text-align:justify">There are 7,000-8,000 classified rare diseases, but less than 5% have therapies available to treat them. About 95% rare diseases have no approved treatment and less than 1 in 10 patients receive disease-specific treatment. These diseases have differing definitions in various countries and range from those that are prevalent in 1 in 10,000 of the population to 6 per 10,000. India has said it lacks epidemiological data on the prevalence here and hence has only classified certain diseases as &lsquo;rare.&rsquo;</p><p style="text-align:justify">Where drugs are available, they are prohibitively expensive, placing immense strain on resources.</p><p style="text-align:justify">Currently few pharmaceutical companies are manufacturing drugs for rare diseases globally and there are no domestic manufacturers in India except for those who make medical-grade food for those with metabolic disorders. Due to the high cost of most therapies, the government has not been able to provide these for free. It is estimated that for a child weighing 10 kg, the annual cost of treatment for some rare diseases, may vary from 10 lakh to more than 1 crore per year with treatment being lifelong and drug dose and cost increasing with age and weight.</p><p style="text-align:justify">Please <a href="https://www.thehindu.com/news/national/disquiet-over-govts-new-policy-for-rare-diseases/article34225606.ece" title="https://www.thehindu.com/news/national/disquiet-over-govts-new-policy-for-rare-diseases/article34225606.ece">click here</a> to read more.</p>                                                           
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    <br><a href="https://www.thehindu.com/news/national/disquiet-over-govts-new-policy-for-rare-diseases/article34225606.ece" class="re" target="_blank">The Hindu, 2 April, 2021, https://www.thehindu.com/news/national/disquiet-over-govts-new-policy-for-rare-diseases/article34225606.ece</a><div class="clear"></div>
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Caregivers to patients with &lsquo;rare diseases&rsquo; and affiliated organisations are dissatisfied with the National Policy for Rare Diseases, 2021 announced on Wednesday. Though..."/>
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    <h1 class="cat-box-title"> Disquiet over govt.’s new policy for rare diseases -Bindu Shajan Perappadan and Jacob Koshy</h1>
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                            <p style="text-align:justify">-The Hindu</p><p style="text-align:justify"><em>The policy has absolutely no consideration for Group 3 patients who require lifelong treatment support, say organisations</em></p><p style="text-align:justify">Caregivers to patients with &lsquo;rare diseases&rsquo; and affiliated organisations are dissatisfied with the National Policy for Rare Diseases, 2021 announced on Wednesday. Though the document specifies increasing the government support for treating patients with a &lsquo;rare disease&rsquo;&mdash; from 15 lakh to 20 lakh &mdash; caregivers say this doesn&rsquo;t reflect actual costs of treatment.</p><p style="text-align:justify">There are 7,000-8,000 classified rare diseases, but less than 5% have therapies available to treat them. About 95% rare diseases have no approved treatment and less than 1 in 10 patients receive disease-specific treatment. These diseases have differing definitions in various countries and range from those that are prevalent in 1 in 10,000 of the population to 6 per 10,000. India has said it lacks epidemiological data on the prevalence here and hence has only classified certain diseases as &lsquo;rare.&rsquo;</p><p style="text-align:justify">Where drugs are available, they are prohibitively expensive, placing immense strain on resources.</p><p style="text-align:justify">Currently few pharmaceutical companies are manufacturing drugs for rare diseases globally and there are no domestic manufacturers in India except for those who make medical-grade food for those with metabolic disorders. Due to the high cost of most therapies, the government has not been able to provide these for free. It is estimated that for a child weighing 10 kg, the annual cost of treatment for some rare diseases, may vary from 10 lakh to more than 1 crore per year with treatment being lifelong and drug dose and cost increasing with age and weight.</p><p style="text-align:justify">Please <a href="https://www.thehindu.com/news/national/disquiet-over-govts-new-policy-for-rare-diseases/article34225606.ece" title="https://www.thehindu.com/news/national/disquiet-over-govts-new-policy-for-rare-diseases/article34225606.ece">click here</a> to read more.</p>                                                           
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    <br><a href="https://www.thehindu.com/news/national/disquiet-over-govts-new-policy-for-rare-diseases/article34225606.ece" class="re" target="_blank">The Hindu, 2 April, 2021, https://www.thehindu.com/news/national/disquiet-over-govts-new-policy-for-rare-diseases/article34225606.ece</a><div class="clear"></div>
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        LATEST NEWS UPDATES |  Disquiet over govt.’s new policy for rare diseases -Bindu Shajan Perappadan and Jacob Koshy    </title>
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The policy has absolutely no consideration for Group 3 patients who require lifelong treatment support, say organisations

Caregivers to patients with &lsquo;rare diseases&rsquo; and affiliated organisations are dissatisfied with the National Policy for Rare Diseases, 2021 announced on Wednesday. Though..."/>
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The policy has absolutely no consideration for Group 3 patients who require lifelong treatment support, say organisations

Caregivers to patients with &lsquo;rare diseases&rsquo; and affiliated organisations are dissatisfied with the National Policy for Rare Diseases, 2021 announced on Wednesday. Though..." />
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    <h1 class="cat-box-title"> Disquiet over govt.’s new policy for rare diseases -Bindu Shajan Perappadan and Jacob Koshy</h1>
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                            <p style="text-align:justify">-The Hindu</p><p style="text-align:justify"><em>The policy has absolutely no consideration for Group 3 patients who require lifelong treatment support, say organisations</em></p><p style="text-align:justify">Caregivers to patients with &lsquo;rare diseases&rsquo; and affiliated organisations are dissatisfied with the National Policy for Rare Diseases, 2021 announced on Wednesday. Though the document specifies increasing the government support for treating patients with a &lsquo;rare disease&rsquo;&mdash; from 15 lakh to 20 lakh &mdash; caregivers say this doesn&rsquo;t reflect actual costs of treatment.</p><p style="text-align:justify">There are 7,000-8,000 classified rare diseases, but less than 5% have therapies available to treat them. About 95% rare diseases have no approved treatment and less than 1 in 10 patients receive disease-specific treatment. These diseases have differing definitions in various countries and range from those that are prevalent in 1 in 10,000 of the population to 6 per 10,000. India has said it lacks epidemiological data on the prevalence here and hence has only classified certain diseases as &lsquo;rare.&rsquo;</p><p style="text-align:justify">Where drugs are available, they are prohibitively expensive, placing immense strain on resources.</p><p style="text-align:justify">Currently few pharmaceutical companies are manufacturing drugs for rare diseases globally and there are no domestic manufacturers in India except for those who make medical-grade food for those with metabolic disorders. Due to the high cost of most therapies, the government has not been able to provide these for free. It is estimated that for a child weighing 10 kg, the annual cost of treatment for some rare diseases, may vary from 10 lakh to more than 1 crore per year with treatment being lifelong and drug dose and cost increasing with age and weight.</p><p style="text-align:justify">Please <a href="https://www.thehindu.com/news/national/disquiet-over-govts-new-policy-for-rare-diseases/article34225606.ece" title="https://www.thehindu.com/news/national/disquiet-over-govts-new-policy-for-rare-diseases/article34225606.ece">click here</a> to read more.</p>                                                           
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    <br><a href="https://www.thehindu.com/news/national/disquiet-over-govts-new-policy-for-rare-diseases/article34225606.ece" class="re" target="_blank">The Hindu, 2 April, 2021, https://www.thehindu.com/news/national/disquiet-over-govts-new-policy-for-rare-diseases/article34225606.ece</a><div class="clear"></div>
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Home हिन्दी

Disquiet over govt.’s new policy for rare diseases -Bindu Shajan Perappadan and Jacob Koshy

Published on Apr 2, 2021   Modified on Apr 3, 2021

-The Hindu The policy has absolutely no consideration for Group 3 patients who require lifelong treatment support, say organisations Caregivers to patients with ‘rare diseases’ and affiliated organisations are dissatisfied with the National Policy for Rare Diseases, 2021 announced on Wednesday. Though the document specifies increasing the government support for treating patients with a ‘rare disease’— from 15 lakh to 20 lakh — caregivers say this doesn’t reflect actual costs of treatment. There are 7,000-8,000 classified rare diseases, but less than 5% have therapies available to treat them. About 95% rare diseases have no approved treatment and less than 1 in 10 patients receive disease-specific treatment. These diseases have differing definitions in various countries and range from those that are prevalent in 1 in 10,000 of the population to 6 per 10,000. India has said it lacks epidemiological data on the prevalence here and hence has only classified certain diseases as ‘rare.’ Where drugs are available, they are prohibitively expensive, placing immense strain on resources. Currently few pharmaceutical companies are manufacturing drugs for rare diseases globally and there are no domestic manufacturers in India except for those who make medical-grade food for those with metabolic disorders. Due to the high cost of most therapies, the government has not been able to provide these for free. It is estimated that for a child weighing 10 kg, the annual cost of treatment for some rare diseases, may vary from 10 lakh to more than 1 crore per year with treatment being lifelong and drug dose and cost increasing with age and weight. Please click here to read more.

The Hindu, 2 April, 2021, https://www.thehindu.com/news/national/disquiet-over-govts-new-policy-for-rare-diseases/article34225606.ece

Tagged with: National Policy for Rare Diseases, 2021 Rare Diseases Pharmaceutical Companies

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