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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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This AI Tool Can Predict Mortality Of Heart Failure Patients

Researchers develop a tool that can predict mortality of heart failure patients

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This artificial intelligence (AI) tool can predict life expectancy in heart failure patients. Pixabay

Researchers have developed an artificial intelligence (AI) tool to predict life expectancy in heart failure patients.

The machine learning algorithm based on de-identified electronic health, records data of 5,822 hospitalised or ambulatory patients with heart failure at UC San Diego Health in the US.

“We wanted to develop a tool that predicted life expectancy in heart failure patients, there are apps where algorithms are finding out all kinds of things, like products you want to purchase,” said Avi Yagil, Professor at University of California.

“We needed a similar tool to make medical decisions. Predicting mortality is important in patients with heart failure. Current strategies for predicting risk, however, are only modestly successful and can be subjective,” Yagil added.

From this model, a risk score was derived that determined low and high risk of death by identifying eight readily available variables collected for the majority of patients with heart failure:Diastolic blood pressure, Creatinine, Blood urea nitrogen, White blood cell count, Platelets, Albumin and Red blood cell distribution.

Yagil said the newly developed model was able to accurately predict life expectancy 88 per cent of the time and performed substantially better than other popular published models.

“This tool gives us insight, for example, on the probability that a given patient will die from heart failure in the next three months or a year,” said researcher Eric Adler.

Heart failure patients
The mortality of a heart failure patient can be predicted. Pixabay

“This is incredibly valuable. It allows us to make informed decisions based on a proven methodology and not have to look into a crystal ball,” he added.

The tool was additionally tested using de-identified patient data from the University of California San Francisco and a data base derived from 11 European medical centers.

“It was successful in those cohorts as well,” said Yagil.

“Being able to repurpose our findings in independent populations is of utmost importance, thus validating our methodology and its results,” Yagil added.

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Researchers said the partnership between physicists and cardiologists was critical to developing a reliable tool and extensive knowledge and experiences from both sides proved synergetic.

The study was published in the European Journal of Heart Failure. (IANS)