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Sickle News

This Week in sickle cell news march 16th to the 22nd

4/4/2015

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 By Sean Marshall

In a historic turn of events this week the state government of India has finally cleared bill Rs15.11. It was reported by The Times of India that bill Rs15.11. Had come to pass. The bill will allow “sickle cell patients who can now travel free of cost along with one companion in state transport buses.” People with sickle cell disease will have to carry around id that confirms they do have sickle cell but this will be issued in the form of a certificate. It was explained that the certificate would most likely be issued “either from State Blood Transfusion Council or the civil surgeon along when they travel.” It’s also worth mentioning that it was outlined that “in the absence of a certificate, during urgency, the patients can use a sanctioned letter from a medical officer at the primary health centre and use it as a substitute.”

The whole reason the bill existed was because SCSI president Sampat Ramteke anted people to know how tough it is for “poor sickle cell patients who have to travel frequently for treatments. This initiative was taken to help them out specially.” The article also highlighted that the SCSI had been fighting over the past two years to make his happen.


The importance of this relatively small news article is that again this really shows that when a country priories the wellness of those suffering from sickle cell anything is possible. The Indian government feels sickle cell is a priority and they are doing something about it.


If you would like to see the original article it can be found here:

http://timesofindia.indiatimes.com/city/nagpur/State-clears-Rs15-11cr-for-sickle-cell-patients/articleshow/46602235.cms

Other news this week includes a new global initiative to address blood disorders. It was reported by Astro Awani, a news organization in Malaysia, that “Malaysia was the proud host to the recently concluded Human Genome Meeting (HGM) 2015, a ‘meeting of minds’ in the discourse of genomes where almost 400 delegates attended the event.”

For those who don’t know HGM defines itself as “an annual conference which took place since 1996,which has since morphed into a major dimension of scientific conference for discourses on human genetics and genomics, genomic medicine and genomic biology.”

The four-day HGM 2015, which began last Saturday on the 18th of March and finished on the 22nd was held at the KL Convention Centre (KLCC). Although only a press release has been issued one of the main talking points was sickle cell disease.

Many of their goals for 2015 and beyond were “build an evidence base for the better management of delivery of local treatment, care and eventually cure for these diseases by ensuring that there is sufficient local capacity to deliver services.” Other promises included human genome projects and a stronger focus on children with blood diseases.

For a full look at the press release go to the link below:

http://english.astroawani.com/lifestyle/new-global-initiative-launched-address-genetic-blood-disorders-55780

If there are any comments questions or concerns email us at thesickleinme@gmail.com

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