By Sean Marshall
Big news out of India this week from the Nagpur state government. It was reported in The Times of India that “this weekend, state government officials and experts attended a meeting in which some landmark decisions for the welfare of patients of sickle cell disease (SCD) were made.” It was also stated the decisions at the meeting included “ making provision for conducting free antenatal diagnosis tests with the help of Mumbai-based National Institute of Immunohaematology, proposal to set up a fund for patients needing hip joint replacement as they are not included in Rajiv Gandhi Jeevandayi Arogya Yojana.” The meeting also dealt with “testing of all kids in ashramshalas in state by Pune-based Tribal Research Institute.” It was said that many supporters both in the government as well as N.G.O.'s and even the public felt this meeting was overdue. One important aspect was a quote from the head of pediatric department of Indira Gandhi Government Medical College. Dipty Jain was quoted to have said “the most important thing being with government officials but doctors, researchers and activists all attending it, all aspects and problems were taken into consideration before making the decisions." There were other decisions being made that involved running sickle cell day cares establishing centers in areas that are underdeveloped and spreading sickle cell awareness. But what really does stand out is that almost everyone from many different walks of life were there to make this decision together. This is not only a big move on India's part but it also sets a precedent for the rest of the world. The original article can be found here: http://timesofindia.indiatimes.com/city/nagpur/States-slew-of-sops-for-sickle-cell-patients/articleshow/48659916.cms If there are any comments questions or concerns email us at [email protected]
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By Sean Marshall
Next month is Sickle cell awareness month and the writer at ACJ.com aren’t wasting any time in reminding people what is happening during the month of September. It was reported that the Sickle Cell Foundation of Georgia is hosting a “Sickle Cell Candlelight Vigil at 3p.m. on September 2 at the Georgia State Capital. 206 Washington St.” The vigil is a planned event that is intended to bring public attention to sickle cell disease and remind the community that it still is a deadly disease. According to The Sickle Cell Foundation of Georgia there are still “affects about 100,000 people in the United States.” Lastly the foundation wanted the public to know that it is also planning to host “another event, Walk-A-Mile for Sickle Cell, beginning at 9 a.m. Sept. 19 at its office, 2391 Benjamin E. Mays Dr .” The original article can be found below: http://www.ajc.com/news/lifestyles/health/sickle-cell-month-launches-series-of-events/nnNfD/ Other news this week included a research report that Mast Therapeutics Inc is expected to “announce phase 3 data in Sickle Cell Crisis for its lead drug 188.” It was explained that the drug 188 could “benefit numerous pathologies in SCD, especially vaso-occlusive crises (VOC).” There were some down sides it was mentioned despite strong clinical benefits the data misses statistical significance. This was blamed on “the difficulty of enrolling SCD crises trials.” The article did go over the stock ratings over the company for those who were interested in investing capital. Original article can be found here: http://www.smarteranalyst.com/2015/08/17/cowen-maintains-outperform-on-mast-therapeutics-inc-ahead-of-sickle-cell-crisis-epic-data-in-1q16/ If there are any comments questions or concerns email us at the [email protected] By Sean Marshall
An article surfaced on Seeking Alpha's website outlining that a genetic blood therapy company called Global Blood is preparing for an IPO, this could mean big things for the sickle cell world. In the business world an IPO is an initial public offering. A type of way for a major company to allow the public to buy and sell their stocks. This is often done to raise capital quickly on order to invest it further in something private investors would consider risky. There are of course set backs and weaknesses to IPO one of the largest that scars most companies away is the requirement to disclose certain information that could prove helpful to competitors However seeing as that Global Blood is one of the few firms specializing in blood disease therapies as well as its “lead candidate is focused on treating patients with sickle cell disease.” One of the companies more interesting promises was about one of there new leads. “This lead candidate is a one-of-a-kind therapy that is aimed at reducing and treating red blood cell sickling rather than the symptoms.” It was further quoted that “this treatment could potentially be revolutionary to the sickle cell disease market. The biotech is eyeing a $480 million market valuation, in order to raise proceeds to support clinical trials. Biotech investors may be particularly excited about this one because of the market potential, but there is considerable risk.” The real big news to take from this is that if the public does react positively it shows that there is major interest in a cure for sickle cell disease. Or at the very least there is interest in making a profit of a cure for sickle ell disease. Either way progress will hopefully be made. The original article can be found here: http://seekingalpha.com/article/3424666-global-blood-therapeutics-unique-sickle-cell-therapy-could-have-big-payoff If there are any comments questions or concerns email us at [email protected] By Sean Marshall
Good news out of New York. An article featured in The Vancouver Sun and the with help from the Associated Press explained that the Irish drug making company Shire is offering to buy Baxalta, another drug company, in an attempt to strengthen its own potion in rare disease treatments. This way just sound like another merger but both companies pessimally Baxalta have gone on record as supporters of a cure to sickle cell anemia. It was explained that “earlier this year, Shire said it would pay $5.2 billion to acquire NPS Pharmaceuticals Inc., which specializes in drugs for rare conditions.” Also for those who want more information on Baxalta, it is a Deerfield, Illinois company that spun off by Baxter International Inc. In the article it was pointed out that “in July of this year to put special attention on bleeding disorders.” However it has been reported that “drug makers expect the medicines to be lucrative for them. For those recently approved, they've been asking sky-high prices: $100,000 up to nearly a half-million dollars for a year or a course of treatment.” This means that if the company does in fact cure sickle cell anemia it will be very difficult for many people to obtain it. In a ray of hope however insurance companies can have some success getting discounts. At least in theory. The original article can be found here: http://www.vancouversun.com/business/Shire+offers+Baxter+drug+spinoff+move+boost+rare+disease/11264372/story.html If there are any comments questions or concerns email us at [email protected] By Sean Marshall
Unfortunately there was o new news for sickle cell developments this week. This however does not mean that there was no news coverage of sickle cell anemia this week but nothing that has not been covered in a previous week. There are still many news organizations covering issue important to the sickle cell community but to summarize and explain an issue already covered in a previous week seems repetitive. Next week We'll get back to work but for now there are no new updates in the medical sickle cell community. Thank you for the patients and support, he news will most likely pick up soon. If you have any comments questions or concerns (especially this week) send it to [email protected] |
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March 2016
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