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
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Cake\Http\Runner::__invoke() - CORE/src/Http/Runner.php, line 65
Cake\Http\Runner::run() - CORE/src/Http/Runner.php, line 51
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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
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Cake\Http\ActionDispatcher::_invoke() - CORE/src/Http/ActionDispatcher.php, line 120
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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
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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
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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
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        LATEST NEWS UPDATES | ‘Policy on rare diseases will make treatment affordable, inclusive’ -Cinthya Anand    </title>
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-The Hindu

Patients face discrimination because public health systems and schools are not equipped to deal with the problem

Bengaluru: &ldquo;The cost of my daughter's treatment is around Rs. 1 crore per annum. If it were not for the aid of a..."/>
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-The Hindu

Patients face discrimination because public health systems and schools are not equipped to deal with the problem

Bengaluru: &ldquo;The cost of my daughter's treatment is around Rs. 1 crore per annum. If it were not for the aid of a..." />
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                            <div align="justify">-The Hindu<br /><br /><em>Patients face discrimination because public health systems and schools are not equipped to deal with the problem<br /><br />Bengaluru:</em> &ldquo;The cost of my daughter's treatment is around Rs. 1 crore per annum. If it were not for the aid of a United States-based foundation, I would not be able to help her,&rdquo; said Prasanna B. Shirol, founder-director, Organisation for Rare Diseases India. His teenage daughter suffers from Pompe Disease, a rare genetic disease that causes muscle weakness and affects mobility as well as breathing.<br /><br />At least 7 crore Indians are believed to be suffering from one of the more than 7,000 rare diseases. In Karnataka, experts say that the number is as high as 40 lakh, with many unaware of the condition or unable to receive the correct treatment due to exorbitant drug costs and lack of support.<br /><br />&ldquo;There are medicines for a small percentage of these diseases, but they are often not available in India,&rdquo; said Mr. Shirol.<br /><br />During the presentation of the 2016-17 State Budget on March 18, the chief minister announced that the diagnosis and treatment of rare diseases identified under the National Health Mission would be proposed under schemes of the Health and Family Welfare Department.<br /><br />To address this neglected area of health care, the Karnataka government is planning to frame a policy based on recommendations submitted by the Vision Group for Biotechnology, comprising industry heads and academic leaders. The recommendations include screening newborns for early intervention and specialist clinics to acquire knowledge through research and interaction with patients.<br /><br />&ldquo;These children are also a part of society and deserve the same amount of dignity as anyone else,&rdquo; said Srinivas Bitla, whose 14-year-old son Nihal suffers from Progeria, a disease that causes premature ageing. This is the disease depicted in the Hindi film Paa .<br /><br />Patients suffering from rare diseases face discrimination at many levels because public health systems and educational institutions are not equipped to deal with their problem.<br /><br />&ldquo;Schools are reluctant to admit children with rare diseases,&rdquo; said Dr. Namitha Kumar, Centre for Health Ecologies and Technology. She was instrumental in preparing the draft framework that was submitted to the National Health Mission by the Vision Group for Biotechnology.<br /><br />&ldquo;Often, all that a school needs to do is observe the child's condition and inform the parents if the student becomes sick, but many are unwilling to do this,&rdquo; said Dr. Kumar, who lives with haemophilia, a genetic disorder that impairs the body&rsquo;s ability to control blood clotting, which is necessary to stop bleeding.<br /><br />Many schools are wary of admitting children with rare diseases citing lack of trained staff. There is hope that an inclusive rare disease policy, if implemented, will remedy this and more.<br /><br /><strong>Recommendations in draft framework<br /></strong><br />* Newborn screening | Early intervention<br /><br />* Testing people at increased risk of genetic disease<br /><br />* Treatment and care<br /><br />* Easily accessible and effective care pathways, including primary care, regional centres., specialist clinical centres<br /><br />* Inter and intra-disciplinary coordinated care for optimal utilisation of resources<br /><br />* Telemedicine as an option<br /><br />* Specialist clinical centres to acquire knowledge through research, interaction with patients</div>                                                           
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    <br><a href="http://www.thehindu.com/news/cities/bangalore/policy-on-rare-diseases-will-make-treatment-affordable-inclusive/article8400772.ece?w=city" class="re" target="_blank">The Hindu, 27 March, 2016, http://www.thehindu.com/news/cities/bangalore/policy-on-rare-diseases-will-make-treatment-affordable-inclusive/article8400772.ece?w=city</a><div class="clear"></div>
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    <h1 class="cat-box-title">‘Policy on rare diseases will make treatment affordable, inclusive’ -Cinthya Anand</h1>
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                            <div align="justify">-The Hindu<br /><br /><em>Patients face discrimination because public health systems and schools are not equipped to deal with the problem<br /><br />Bengaluru:</em> &ldquo;The cost of my daughter's treatment is around Rs. 1 crore per annum. If it were not for the aid of a United States-based foundation, I would not be able to help her,&rdquo; said Prasanna B. Shirol, founder-director, Organisation for Rare Diseases India. His teenage daughter suffers from Pompe Disease, a rare genetic disease that causes muscle weakness and affects mobility as well as breathing.<br /><br />At least 7 crore Indians are believed to be suffering from one of the more than 7,000 rare diseases. In Karnataka, experts say that the number is as high as 40 lakh, with many unaware of the condition or unable to receive the correct treatment due to exorbitant drug costs and lack of support.<br /><br />&ldquo;There are medicines for a small percentage of these diseases, but they are often not available in India,&rdquo; said Mr. Shirol.<br /><br />During the presentation of the 2016-17 State Budget on March 18, the chief minister announced that the diagnosis and treatment of rare diseases identified under the National Health Mission would be proposed under schemes of the Health and Family Welfare Department.<br /><br />To address this neglected area of health care, the Karnataka government is planning to frame a policy based on recommendations submitted by the Vision Group for Biotechnology, comprising industry heads and academic leaders. The recommendations include screening newborns for early intervention and specialist clinics to acquire knowledge through research and interaction with patients.<br /><br />&ldquo;These children are also a part of society and deserve the same amount of dignity as anyone else,&rdquo; said Srinivas Bitla, whose 14-year-old son Nihal suffers from Progeria, a disease that causes premature ageing. This is the disease depicted in the Hindi film Paa .<br /><br />Patients suffering from rare diseases face discrimination at many levels because public health systems and educational institutions are not equipped to deal with their problem.<br /><br />&ldquo;Schools are reluctant to admit children with rare diseases,&rdquo; said Dr. Namitha Kumar, Centre for Health Ecologies and Technology. She was instrumental in preparing the draft framework that was submitted to the National Health Mission by the Vision Group for Biotechnology.<br /><br />&ldquo;Often, all that a school needs to do is observe the child's condition and inform the parents if the student becomes sick, but many are unwilling to do this,&rdquo; said Dr. Kumar, who lives with haemophilia, a genetic disorder that impairs the body&rsquo;s ability to control blood clotting, which is necessary to stop bleeding.<br /><br />Many schools are wary of admitting children with rare diseases citing lack of trained staff. There is hope that an inclusive rare disease policy, if implemented, will remedy this and more.<br /><br /><strong>Recommendations in draft framework<br /></strong><br />* Newborn screening | Early intervention<br /><br />* Testing people at increased risk of genetic disease<br /><br />* Treatment and care<br /><br />* Easily accessible and effective care pathways, including primary care, regional centres., specialist clinical centres<br /><br />* Inter and intra-disciplinary coordinated care for optimal utilisation of resources<br /><br />* Telemedicine as an option<br /><br />* Specialist clinical centres to acquire knowledge through research, interaction with patients</div>                                                           
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    <br><a href="http://www.thehindu.com/news/cities/bangalore/policy-on-rare-diseases-will-make-treatment-affordable-inclusive/article8400772.ece?w=city" class="re" target="_blank">The Hindu, 27 March, 2016, http://www.thehindu.com/news/cities/bangalore/policy-on-rare-diseases-will-make-treatment-affordable-inclusive/article8400772.ece?w=city</a><div class="clear"></div>
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        LATEST NEWS UPDATES | ‘Policy on rare diseases will make treatment affordable, inclusive’ -Cinthya Anand    </title>
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-The Hindu

Patients face discrimination because public health systems and schools are not equipped to deal with the problem

Bengaluru: &ldquo;The cost of my daughter's treatment is around Rs. 1 crore per annum. If it were not for the aid of a..."/>
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-The Hindu

Patients face discrimination because public health systems and schools are not equipped to deal with the problem

Bengaluru: &ldquo;The cost of my daughter's treatment is around Rs. 1 crore per annum. If it were not for the aid of a..." />
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    <h1 class="cat-box-title">‘Policy on rare diseases will make treatment affordable, inclusive’ -Cinthya Anand</h1>
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                            <div align="justify">-The Hindu<br /><br /><em>Patients face discrimination because public health systems and schools are not equipped to deal with the problem<br /><br />Bengaluru:</em> &ldquo;The cost of my daughter's treatment is around Rs. 1 crore per annum. If it were not for the aid of a United States-based foundation, I would not be able to help her,&rdquo; said Prasanna B. Shirol, founder-director, Organisation for Rare Diseases India. His teenage daughter suffers from Pompe Disease, a rare genetic disease that causes muscle weakness and affects mobility as well as breathing.<br /><br />At least 7 crore Indians are believed to be suffering from one of the more than 7,000 rare diseases. In Karnataka, experts say that the number is as high as 40 lakh, with many unaware of the condition or unable to receive the correct treatment due to exorbitant drug costs and lack of support.<br /><br />&ldquo;There are medicines for a small percentage of these diseases, but they are often not available in India,&rdquo; said Mr. Shirol.<br /><br />During the presentation of the 2016-17 State Budget on March 18, the chief minister announced that the diagnosis and treatment of rare diseases identified under the National Health Mission would be proposed under schemes of the Health and Family Welfare Department.<br /><br />To address this neglected area of health care, the Karnataka government is planning to frame a policy based on recommendations submitted by the Vision Group for Biotechnology, comprising industry heads and academic leaders. The recommendations include screening newborns for early intervention and specialist clinics to acquire knowledge through research and interaction with patients.<br /><br />&ldquo;These children are also a part of society and deserve the same amount of dignity as anyone else,&rdquo; said Srinivas Bitla, whose 14-year-old son Nihal suffers from Progeria, a disease that causes premature ageing. This is the disease depicted in the Hindi film Paa .<br /><br />Patients suffering from rare diseases face discrimination at many levels because public health systems and educational institutions are not equipped to deal with their problem.<br /><br />&ldquo;Schools are reluctant to admit children with rare diseases,&rdquo; said Dr. Namitha Kumar, Centre for Health Ecologies and Technology. She was instrumental in preparing the draft framework that was submitted to the National Health Mission by the Vision Group for Biotechnology.<br /><br />&ldquo;Often, all that a school needs to do is observe the child's condition and inform the parents if the student becomes sick, but many are unwilling to do this,&rdquo; said Dr. Kumar, who lives with haemophilia, a genetic disorder that impairs the body&rsquo;s ability to control blood clotting, which is necessary to stop bleeding.<br /><br />Many schools are wary of admitting children with rare diseases citing lack of trained staff. There is hope that an inclusive rare disease policy, if implemented, will remedy this and more.<br /><br /><strong>Recommendations in draft framework<br /></strong><br />* Newborn screening | Early intervention<br /><br />* Testing people at increased risk of genetic disease<br /><br />* Treatment and care<br /><br />* Easily accessible and effective care pathways, including primary care, regional centres., specialist clinical centres<br /><br />* Inter and intra-disciplinary coordinated care for optimal utilisation of resources<br /><br />* Telemedicine as an option<br /><br />* Specialist clinical centres to acquire knowledge through research, interaction with patients</div>                                                           
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    <br><a href="http://www.thehindu.com/news/cities/bangalore/policy-on-rare-diseases-will-make-treatment-affordable-inclusive/article8400772.ece?w=city" class="re" target="_blank">The Hindu, 27 March, 2016, http://www.thehindu.com/news/cities/bangalore/policy-on-rare-diseases-will-make-treatment-affordable-inclusive/article8400772.ece?w=city</a><div class="clear"></div>
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Home हिन्दी

‘Policy on rare diseases will make treatment affordable, inclusive’ -Cinthya Anand

Published on Mar 27, 2016   Modified on Mar 27, 2016

-The Hindu Patients face discrimination because public health systems and schools are not equipped to deal with the problem Bengaluru: “The cost of my daughter's treatment is around Rs. 1 crore per annum. If it were not for the aid of a United States-based foundation, I would not be able to help her,” said Prasanna B. Shirol, founder-director, Organisation for Rare Diseases India. His teenage daughter suffers from Pompe Disease, a rare genetic disease that causes muscle weakness and affects mobility as well as breathing. At least 7 crore Indians are believed to be suffering from one of the more than 7,000 rare diseases. In Karnataka, experts say that the number is as high as 40 lakh, with many unaware of the condition or unable to receive the correct treatment due to exorbitant drug costs and lack of support. “There are medicines for a small percentage of these diseases, but they are often not available in India,” said Mr. Shirol. During the presentation of the 2016-17 State Budget on March 18, the chief minister announced that the diagnosis and treatment of rare diseases identified under the National Health Mission would be proposed under schemes of the Health and Family Welfare Department. To address this neglected area of health care, the Karnataka government is planning to frame a policy based on recommendations submitted by the Vision Group for Biotechnology, comprising industry heads and academic leaders. The recommendations include screening newborns for early intervention and specialist clinics to acquire knowledge through research and interaction with patients. “These children are also a part of society and deserve the same amount of dignity as anyone else,” said Srinivas Bitla, whose 14-year-old son Nihal suffers from Progeria, a disease that causes premature ageing. This is the disease depicted in the Hindi film Paa . Patients suffering from rare diseases face discrimination at many levels because public health systems and educational institutions are not equipped to deal with their problem. “Schools are reluctant to admit children with rare diseases,” said Dr. Namitha Kumar, Centre for Health Ecologies and Technology. She was instrumental in preparing the draft framework that was submitted to the National Health Mission by the Vision Group for Biotechnology. “Often, all that a school needs to do is observe the child's condition and inform the parents if the student becomes sick, but many are unwilling to do this,” said Dr. Kumar, who lives with haemophilia, a genetic disorder that impairs the body’s ability to control blood clotting, which is necessary to stop bleeding. Many schools are wary of admitting children with rare diseases citing lack of trained staff. There is hope that an inclusive rare disease policy, if implemented, will remedy this and more. Recommendations in draft framework * Newborn screening | Early intervention * Testing people at increased risk of genetic disease * Treatment and care * Easily accessible and effective care pathways, including primary care, regional centres., specialist clinical centres * Inter and intra-disciplinary coordinated care for optimal utilisation of resources * Telemedicine as an option * Specialist clinical centres to acquire knowledge through research, interaction with patients

The Hindu, 27 March, 2016, http://www.thehindu.com/news/cities/bangalore/policy-on-rare-diseases-will-make-treatment-affordable-inclusive/article8400772.ece?w=city

Tagged with: National Health Mission Rare diseases Public Health

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