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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 Wearable Sensor Can Detect Critical Changes in Heart Failure Patients

Wearable sensor to predict worsening heart failure

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Wearable sensor heart
A new wearable sensor could help doctors remotely detect critical changes in heart failure patients days before a health crisis occurs. Pixabay

A new wearable sensor that works in conjunction with artificial intelligence (AI) technology could help doctors remotely detect critical changes in heart failure patients days before a health crisis occurs, says a study. This is the latest health news.

The researchers said the system could eventually help avert up to one in three heart failure readmissions in the weeks following initial discharge from the hospital and help patients sustain a better quality of life.

“This study shows that we can accurately predict the likelihood of hospitalisation for heart failure deterioration well before doctors and patients know that something is wrong,” says the study’s lead author Josef Stehlik from University of Utah in the US.

“Being able to readily detect changes in the heart sufficiently early will allow physicians to initiate prompt interventions that could prevent rehospitalisation and stave off worsening heart failure,” Stehlik added.

According to the researchers, even if patients survive, they have poor functional capacity, poor exercise tolerance and low quality of life after hospitalisations. “This patch, this new diagnostic tool, could potentially help us prevent hospitalizations and decline in patient status,” Stehlik said.

Wearable sensor heart
The sensor can help avert up to one in three heart failure readmissions in the weeks following initial discharge from the hospital and help patients sustain a better quality of life. Pixabay

For the findings, published in the journal Circulation: Heart Failure, the researchers followed 100 heart failure patients, average age 68, who were diagnosed and treated at four veterans administration (VA) hospitals in Utah, Texas, California, and Florida.

After discharge, participants wore an adhesive sensor patch on their chests 24 hours a day for up to three months. The sensor monitored continuous electrocardiogram (ECG) and motion of each subject.

This information was transmitted from the sensor via Bluetooth to a smartphone and then passed on to an analytics platform, developed by PhysIQ, on a secure server, which derived heart rate, heart rhythm, respiratory rate, walking, sleep, body posture and other normal activities.

Using artificial intelligence, the analytics established a normal baseline for each patient. When the data deviated from normal, the platform generated an indication that the patient’s heart failure was getting worse.

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Overall, the system accurately predicted the impending need for hospitalization more than 80 per cent of the time. On average, this prediction occurred 10.4 days before a readmission took place (median 6.5 days), the study said. (IANS)