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Patients suffering from rare Genetic Diseases hold Silent Protest March against Costly Treatments

An awareness programme held after the walk witnessed a discussion on the ways and means of funding the treatment of rare genetic disorders

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Medicines (representational image). Pixabay

New Delhi, Sep 30, 2016: Patients suffering from Lysosomal Storage Disorders, or rare genetic diseases, organised a silent protest march to seek that the government frame a policy on the issue and allocate funds for their costly treatment, a release said.

Holding placards and banners to highlight their plight, over two dozen patients, and their caregivers participated in the march from Jantar Mantar to Connaught Place, organised by the Lysosomal Storage Disorders Support Society (LSDS).

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“Two committees have been formed this year to address the concerns of patients with rare diseases including LSDs but nothing concrete has emerged in terms of providing free treatment, the primary demand of patients and families,” said the release.

It said while the Delhi government formed a committee under the chairmanship of Dr. D K Tempe, Dean of Maulana Azad Medical College in February 2016 to develop a policy and funding for rare genetic diseases, another committee was constituted by the Union Health Ministry this year for developing a policy on providing medicines for treatment of rare diseases.

Maulana Azad Medical College. Source: mamc.ac.in
Maulana Azad Medical College. Source: mamc.ac.in

An awareness programme held after the walk witnessed a discussion on the ways and means of funding the treatment of rare genetic disorders.

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“Treatment for LSDs is beyond the reach of patients. Government support in terms of funding is imperative to help them lead a normal life. We urge the government to expedite the process of forming a policy and funding system for the treatment of LSDs without further delay so that patients get timely treatment,” said LSDS President Manjit Singh.

In Delhi, there are 14 known patients suffering from Gaucher disease, the most common form of LSD, said the release. The disease is an inherited genetic condition that causes fatty deposits to build up in organs and bones, as its sufferers do not have enough of an important enzyme (glucocerebrosidase) required to break down a certain type of fat molecule (glucocerebroside).

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Enzyme Replacement Therapy (ERT), the most effective treatment for LSDs, is available in India but most patients are deprived of receiving it due to the high cost. These treatments are not supported by government or insurance companies unlike in developed countries, the release said. (IANS)

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New Sleeping Pill Can Help Patients Wake up in Response to Threat

However, more studies on humans are needed to confirm DORA safety and efficacy, they noted

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Pills (representational Image), Pixabay

Japanese scientists have shown that a new class of sleeping pill that preserves the ability to wake in response to a threat, unlike the commonly prescribed drugs that muffles a sleeping brain’s “intruder alert”.

Even during sleep the brain continuously processes sensory information, waking us if it detects a threat. But the most widely prescribed class of sleeping pills, known as benzodiazepines, makes us less likely to rouse in response to sensory input.

The findings showed that millions prescribed on these sleeping pills would sleep through a fire alarm as someone vacuuming next to their bed.

 However, the new class of drugs called dual orexin receptor antagonists (DORAs) more selectively targeted the brain’s sleep or wake pathways, which gives them safety advantages over benzodiazepines, said researchers from the Kagoshima University.

These include a reduced “hangover effect”, with DORAs less likely to affect driving ability the day after use.

“Benzodiazepines stimulate the widespread brain receptor GABA-A, which makes us sleepy but also suppresses off-target brain areas – including the ‘gatekeeper’ that decides which sensory inputs to process,” explained author Tomoyuki Kuwaki, Professor at the varsity.

Contraception, Men
New sleeping pill can help patients wake up in response to threat.

In the study, published in Frontiers in Behavioral Neuroscience journal, mice that were given the new experimental hypnotic drug DORA-22 wake as quickly when threatened as drug-free sleepers — and then fall back asleep as quickly as ones given standard sleeping pills, once the threat is gone.

While DORA-22 allows mice to wake to a threat, it still helps them sleep.

Thus, the selectivity of DORAs could make them a safer alternative during sleep as well — by allowing the brain’s sensory gatekeeper to stay vigilant to threats, the researchers said.

Also Read- Here’s What Causes Cancer in Children

However, more studies on humans are needed to confirm DORA safety and efficacy, they noted.

“Although it remains to be seen whether DORAs have the same properties when used in humans, our study provides important and promising insight into the safety of these hypnotics,” Kuwaki said. (IANS)