By Sean Marshall
Great news for those in the Boston area. It was reported by Eurek Alert, a science news website, that Boston University Medical Center has reduced its wait times specifically targeting sickle cell sufferers. It was stated that the time that those who come to the Boston University medical center specifically suffering from sickle cell disease have to wait has dropped “more than 50 percent, from an average of 56 minutes to 23 minutes, from triage to administration of the first dose of pain medication.” This was done due to an emergency department changes made from September 2010 to April 2014 by the pediatric emergency department. This was accomplished by focusing on four areas of improvement. These four areas were “the development of a standardized time-specific protocol that guided care when the patient is in the emergency department; using intranasal fentanyl - a pain medication taken through the nose - as a first-line pain medication since placing intravenous lines (IVs) using an online "calculator" to quickly determine appropriate pain medication doses in line with what is used nationally for children in the emergency department; and providing education to both emergency providers and families on this work.” When they put all of these practices to the test data reveled that discharged patients increased from “ 32 to 48 percent.” There was no increase in patient return. They have also been praised by the medical community and are now being used as an example across the united states on how to lower the risks of death in sickle cell sufferers. The original article can be found here: http://www.eurekalert.org/pub_releases/2015-09/bumc-bre091715.php If there are any comments questions or concerns feel free to email us at thesickleinme@gmail.com
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By Sean Marshall
The medical diagnosis and research company Triangle Park has received a $222,950 grant from the National Institute of Health to “boost its development of a diagnostic test to aid in treating people with sickle cell disease.” As far back as 2006 the North Carolina company explained that if they were to acquire a loan of 19,000 from small business investors in order to peruse funding research into alternative testing for hospitals attempting to diagnose sickle cell anemia. However the current funding is going towards a BioMedomics' quantitative point-of-care system. The system will test specifically for hemoglobin S and hemoglobin F. The reason behind this is that in the two different types of hemoglobin dictate the severity and often times the survivability of a person with sickle cell disease. It was explained that “half of the SCD population undergoes frequent blood transfusions aimed at lowering HbS, and about one-third of these patients receive chronic Hydroxyurea therapy with the goal of raising their HbF levels.” The article further explained itself by going on to say “it’s difficult to track and balance the appropriate levels of HbS and HbF, especially because current test procedures take several days to a week for clinicians to get these critical results from remote testing labs.” The machine should be available to the public but will have a heavy cost for those without insurance. A link to the original article can be found here: http://wraltechwire.com/rtp-based-biomedomics-nabs-222k-nih-grant/14903029/ If there are any comments questions or concerns email us at thesickleinme@gmail.com By Sean Marshall
A new machine should help those with sickle cell sufferers in the North Atlantic. There is even better news if you're near Bermuda. The Bermuda Hospitals Board announced that they have “has unveiled a new machine to vastly improve its service for sickle-cell patients.” The machine titled The Spectra Optia therapeutic apheresis machine is designed to extract and filter blood. In a more in depth description the machine when operating at maximum capacity should “act as a sort of cell exchange, it can extract red blood cells, white blood cells, platelets or plasma and simultaneously replace the removed components with the required product when necessary.” This means the machine should do away with constant blood transfusions many who suffer from sickle cell have to go through sometime on a daily basis. There would only be a smaller amount of transfusions from the Spectra Optia instead. Often allowing a patient to go eight weeks without a visit to the hospital. The machine also “drastically reduces the amount of time a patient has to undergo transfusion. The original article with extra information can be found at the link below: http://www.royalgazette.com/article/20150909/NEWS/150909721 Good news for those who have sickle cell in Oklahoma Sam and Pat Burns are expanding sickle cell anemia treatment centers. It was explaining that the state of Oklahoma actually “does not have a 24-hour comprehensive acute-care sickle cell anemia center for adults.” So The Burns has stepped in with comprehensive plans on expanding and creating many sickle cell centers in Oklahoma for the treatment of sickle cell. There will be more details in the future when work has began. The brief article can be found here, however you must make an account to access further information. http://www.tulsaworld.com/homepagelatest/sam-and-pat-burns-expanding-sickle-cell-anemia-centers-in/article_cb15823a-7445-5fe1-9220-dd642b7b6698.html If there are any comments questions or concerns email us at thesickleinme@gmail.com By Sean Marshall
It was reported by Trade Arabia this week that a July to Augest study has shown that last month was the deadliest month for Bahrains sickle cell population in the last three years. It was explained that “in total, nine sickle cell sufferers succumbed to complications related to the disease throughout July and August, according to figures provided by the Bahrain Sickle Cell Anemia Patient Care Society.” However with further examination it is reveled that seven of those deaths happened in August. It was also mentioned that the initial study was first reported by the Gulf Daily News The article can be found here: http://www.tradearabia.com/news/HEAL_289280.html Other news this week featured Bakerfiled's Hina Patel Foundation for Sickle Cell Disease seventh annual fun run in an attempt to raise funds for sickle cell research. The run is planned on the 12th of September at Barkerfield's Riverwalk Park. It was stated that registration is at 6:30 Am and the cost is a flat 25 American dollars The organization is doing this not only to raise funds for researching but continue to raise awareness of sickle cell disease. It was commented by Sanjay Petal that “There are 250 million people in the world that carry the sickle cell gene,” there was also mention of how “it’s a disease scientists are working around the clock to treat. “and that “there are multiple studies going out across the world to find a genetic or gene therapy to cure it,” If you are in the area or would just like to donate any time effort or even money all helpful information can be found at Hinapatelfoundation.org. Thee original article can be found here: http://www.bakersfield.com/news/2015/09/03/first-look-hina-patel-foundation-runs-to-support-sickle-cell-research.html If there are any comments questions or concerns contact us at thesickelinme@gmail.com 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 thesickelinme@gmail.com 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 sicklecellinme@gmail.com 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 thesickleinme@gmail.com 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 thesickleinme@gmail.com 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 thesickleinme@gmail.com 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 If there are any comments questions or concerns email us at thesickleinme@gmail.com |
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March 2016
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