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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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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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Patients who Survive Ebola often Continue to Face Numerous Health Problems: Study

They have to face numerous health problems

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Laboratory technician Mohamed SK Sesay, who survived Ebola but saw many of his colleagues die and now has joint and muscle pains and loss of sight, holds the child of one of his work colleagues who died of the disease, in Kenema, Sierra Leone
Laboratory technician Mohamed SK Sesay, who survived Ebola but saw many of his colleagues die and now has joint and muscle pains and loss of sight, holds the child of one of his work colleagues who died of the disease, in Kenema, Sierra Leone. VOA
  • Approximately 11,000 people died in the Ebola outbreak that hit West Africa from 2014 to 2016
  • Many battled vision problems and headaches that lasted for months
  • They show some quite distinct scarring patterns

Sierra Leone, West Africa, August 25, 2017: Patients who survive infection with the Ebola virus often continue to face numerous health problems. New research finds 80 percent of Ebola survivors suffer disabilities one year after being discharged from the hospital.

Approximately 11,000 people died in the Ebola outbreak that hit West Africa from 2014 to 2016; tens of thousands more who were infected survived.

Of those survivors, many battled vision problems and headaches that lasted for months.

Researchers at the University of Liverpool, the UK and the Liverpool School of Tropical Medicine, UK are studying what’s called post-Ebola syndrome. One of the senior authors of the study, Dr. Janet Scott, says researchers are unsure why survivors experience such disabilities.

“I’m not sure we’ve quite gotten to the bottom of it yet,” Scott said. “The idea that you go through something as horrific as Ebola and just walk away from that unscathed was always a bit of a vain hope. So, it could be the inflammatory response. It could be damage to the muscles, and it could be the persistence of the virus in some cases. It could be all of those things.”

Scott says problems found in Ebola survivors’ eyes may provide clues to what is happening elsewhere in the body.

“They show some quite distinct scarring patterns,” she said. “There’s definitely scar tissue there. We can see it in the eyes. We can’t see it in the rest of the body, but I’m sure it’s in the rest of the body because the patients are coming in with this huge range of problems.”

The disabilities were reported in past cases of  Ebola outbreak, as well. However, because past outbreaks were smaller and there were few survivors, researchers were not able to do major, long-term studies on the after effects.

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This time, said Scott, “There are 5,000 survivors or thereabouts in Sierra Leone, and more in Guinea and Liberia. So, it’s an opportunity from a research point of view to find out the full spectrum of sequelae … the things that happen after an acute illness.”

Military Hospital 34 in Freetown, Sierra Leone, also took part in the study, helping to recruit 27 Ebola survivors and 54 close contacts who were not infected. About 80 percent of survivors reported disabilities compared to 11 percent of close contacts.

“The problems we’re seeing in Ebola survivors, this is not due just to the tough life in Sierra Leone. This is more than likely down to their experience in Ebola,” Scott said.

The research was led by Dr. Soushieta Jagadesh, who said: “a year following acute disease, survivors of West Africa Ebola Virus Disease continue to have a higher chance of disability in mobility, cognition, and vision.”

“Issues such as anxiety and depression persist in survivors and must not be neglected,” she added.

Scott hopes the findings can be used to provide better care in the event of another Ebola outbreak, no matter where it is. In the West Africa outbreak, the first goal was to contain the epidemic, followed by reducing the death rate.

“If I was treating an Ebola patient again, it has to be more than just surviving,” Scott said. “You have to try to make people survive well. Surviving with half your body paralyzed or with your vision impaired and being unable to care for your family or earn a living isn’t really enough. So, what I would like to do is to focus on that aspect to make people survive better and survive well.” (VOA)