By Sean Marshall
A few months ago in March the Nagpur government in India announced that all individuals with sickle cell anemia disease would be granted free travel. The idea behind this was that those who suffer from sickle cell disease could now travel from the remote corners of Napur in order to find the best medical help to treat their disease. Unfortunately it was announced by The Rimes India that the program is suffering and hasn't been able to fully start.

It was explained in an article published July 24th that “in May, the state transport authority asked the health department of the state government to deposit Rs 1 crore towards this end. This money has yet to reach the transport department.”

For those who are unaware a crore is is a unit in the Indian numbering system equal to ten million. So the health department was originally going to give 10 million dollars to the transportation department to allow the free transportation of sickle cell sufferers by bus.

It was also explained that the reason why this took so long to surface was because of the tireless work of Sampat Ramteke a president of an NGO sickle cell society of India. He was the person who pushed for the alleged bill to be passed and when no action was taken and he was the one who pushed for this information to be released when the transportation still wasn’t free.

It was stated that transportation department will take immediate action once the initial down payment is received.

The original article can be found at the link below: http://timesofindia.indiatimes.com/city/nagpur/Free-travel-for-sickle-cell-patients-hits-funds-hurdle/articleshow/48194698.cms
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By Sean Marshall
Slow news week but non the less there was still some interesting things going on. Like a study's finding on the population of India and who as sickle cell anemia diseases.
It was reported this week by The Times of Indian that 10% of tribal people are affected with sickle cell anemia. It was reported that Prime Minister Narendra Modi has “serious cause for concern with tribal-dominated Jharkhand( a state in eastern India carved out of the southern part of Bihar) last emerging as home to an alarmingly high number of people afflicted with sickle-cell anemia.”
This article had only surfaced this week because “according to a study conducted by the state health department,(of India)more than nine lakh tribals are suffering from the fatal disease.” With the total population of Inda to account for this equals according to the report “10% of the state's total tribal population as per the 2011 census.”
The article also outlined the findings of the survey, specifically comparing Jharkland to the rest of the world. “The findings, which were laid out at an internal department meeting early this week, puts Jharkhand right next to Chattisgarh as the worst-hit state, and ahead of Odisha. While Chattisgarh is home to 10 lakh sickle-cell anemic people, Odisha has six lakh affected people.”
For those who don't know a lakh is a unit in the Indian numbering system equal to one hundred thousand.
So the quote really reads Chattisgarh is home to 10000000 people sickle cell anemic people. This is why this study is important because it affects a lot more people then the average person would think These numbers are startling and this is why the prime minister is at least reading the latest report. Now the international world just has to be patient and hope progress is made soon.
http://timesofindia.indiatimes.com/city/ranchi/10-of-tribals-afflicted-with-sickle-cell-anaemia/articleshow/48037811.cms
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By Sean Marshall
News from Trade Arabia Business News Information outlined that sickle cell daycare facilities were opened in Bahrain. On the 5th of July the county's main hospitals opened up daycare units to treat children and adults with sickle cell disease. This was all done in an attempt to “reduce waiting lines at the accident and emergency department of Salmaniya Medical Complex and prevent patients from being admitted overnight,”
Originally the health unit was only to cater to men but the article did explain that in the evening of the 5th changes were made. “the Health Ministry said yesterday women and children will continue to receive treatment at the accident and emergency department until further notice.”
The article did mention that this whole idea was based off of the recommendations of a ream of US experts that have had similar success with the Johns Hopkins Hospital Sickle Cell Infusion Center for Adults.
For more information the original article can be found here: http://www.tradearabia.com/news/HEAL_285606.html

News from bizjournal.com has reported that a Fred Hutch researcher gets $12.9M for 'bubble boy,' sickle-cell anemia work. The researcher is one Dr. Rainer Storb. There goal is to create current gene therapies that affect non lethal non cancerous blood disease like sickle cell disease.
In a quote Storb further outlined an issue that their work to deal with. “Current approaches at cell and gene therapy for lethal noncancerous diseases of the blood and immune systems have inherent toxicities that may affect patients for the rest of their lives,” Storb further explained that “the targeted therapies proposed under this grant aim to eliminate these toxicities."
The research being done will also look at “at ways blood stem cells can be transplanted to treat immune deficiencies and noncancerous blood diseases, such as sickle-cell anemia and Severe Combined Immunodeficiency, also known as "bubble-boy" disease.”
This however is just the beginning nothing has been official as a cure. This isn't to say that this won't work out but as of right now we are looking at step one in a long process. But every step forward in fighting sickle cell diseases is a good one.
Link to the original for more information can be found here: http://www.bizjournals.com/seattle/blog/health-care-inc/2015/07/fred-hutch-researcher-gets-12-9m-for-bubble-boy.html
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By Sean Marshall
Good news for those with sickle cell in Jamaica. The good news is in reference to news reported by the Jamaican Observer. Specifically comments made by the Health Minister Dr. Fenton. He has found specifically “research done by the Sickle Cell Unit, showing a downward trend in mortality by 10 years of age in children diagnosed with sickle cell disease at the time of birth.”

It was with the High Performance Liquid Chromatographer or the HPLC for short. The device was purchased from Brazil in an attempt to strengthen the sickle cell program in Jamaica. The device is intended to “facilitates screening at birth, which allows for early detection of the sickle cell trait.” The reason this is implemented according to the article was to reduce the number of child and mother mortality rates. In an attempt to stop deaths due to complications or misdiagnosis of sickle cell.
Here is a link to the original article: http://www.jamaicaobserver.com/latestnews/Brighter-future-for-children-born-with-sickle-cell-disease---Ferguson

Other news this week featured genome editing the article was posted on genomweb.com. It mainly focused in CRISPR-Cas9 a genetic editing therapy. Although many articles tend to lean towards the miracles of genetic therapies there were some warnings that these processes 'wont be available for years, if at all.”

The whole idea behind gene therapies is to address the question “What if you could go right to the root cause of that disease and repair the broken gene?” This is what the article said is why the scientific community is so excited they are close to turning this what is into a reality. The article stressed something that we will soon be at the point but “There are, though, a few stumbling blocks.” The good news is that the university of California are already attempting to put the steps in order when gene therapies are perfected. It was explained that “the first treatments will likely involve taking a sample of a patient's blood, treating the blood cells, and returning them,”

Lastly it was mentioned that in a quote by Jacob Corn, managing director of the Innovative Genomics Initiative that “in 10, 15 years, our relationship with genetic disease will be very different from today." This was mainly to address the fact that this article may not be the most positive but it is looking to the future while dealing with the problems of the present.
The full original article can be found here: https://www.genomeweb.com/scan/crispr-excitement
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