{"id":1699,"date":"2021-06-18T10:15:37","date_gmt":"2021-06-18T17:15:37","guid":{"rendered":"http:\/\/mydiabeticsoul.com\/?p=1699"},"modified":"2021-09-06T17:42:17","modified_gmt":"2021-09-07T00:42:17","slug":"1699","status":"publish","type":"post","link":"http:\/\/mydiabeticsoul.com\/?p=1699","title":{"rendered":"“World Sickle Cell Day”"},"content":{"rendered":"

An Open Letter to CIRM for World Sickle Cell Day<\/a><\/p>\n\n\n\n
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“Dear CIRM,<\/p>\n

“World Sickle Cell Day <\/a>is this Saturday June 19th<\/sup>. The goal of this day is to increase knowledge of the disease and understanding of the challenges faced.<\/p>\n

“It is a day that I greet with very mixed feelings.\u00a0 I\u2019m of course extremely grateful to CIRM for the time and money spent looking for a cure.\u00a0 The work of doctors, of researchers, the courage of families in the sickle cell community who are taking part in studies, and of course those of you who worked so hard for the original funding for CIRM, I applaud all of you, yet it\u2019s hard to wait for a cure.<\/p>\n

“While I wait I worry. I worry about my friends who are not getting good care.\u00a0 They are the ones who can\u2019t find a doctor to treat them, not able to take advantage of the medications that are already approved.\u00a0 They are the ones who walk into the Emergency Room hoping for knowledgeable treatment while understanding that they may be accused of being a drug seeker,\u00a0 turned away in excruciating pain. They are the ones who succumb after years of poor care.<\/p>\n

“With sickle cell disease there is the same level of understanding about medical malpractice that we had of police brutality before George Floyd. We hardly remember Rodney King or Eric Garner. As a country we were aware that something was wrong but we tended to retreat in denial after each terrible headline.<\/p>\n

“That\u2019s where we are with sickle cell disease.\u00a0 We may see a heart-wrenching story and watch televised reports with interest, but after all, it\u2019s easier to live in disbelief, to think that medical care is not that bad, rather than understand that people are being dismissed and denied treatment. We call it structural racism without understanding what that term really means.<\/p>\n

“While I wait I must acknowledge that change is coming.\u00a0 We have a Sickle Cell Data Collection<\/a> Project<\/a> in California that helps us track healthcare for sickle cell disease. This is data that we can use to point to structural weakness and address health disparities.\u00a0 NASEM, <\/a>the National Academies of Science Engineering and Medicine, has published a huge report with significant suggestions for improving sickle cell care. Many scientists, researchers and advocates took part in this landmark study, detailing what has gone wrong in health care and how to improve the work. And of course we have CIRM. I am very thankful for the leadership and pioneering work of doctors Donald Kohn<\/a>, Matthew Porteus<\/a> and Joseph Rosenthal<\/a> who are using their knowledge and experience in this fight.<\/p>\n

“When we have successful research on stem cell transplants for sickle cell disease, many of us with sickle cell family members will want to relax, but we can\u2019t forget those who may not be able to get a curative transplant. I hope Dr Niihara at Emmaus<\/a>, and Dr. Love of Global Blood Therapeutics<\/a> will continue their important work finding effective treatments. We must continue this fight on all fronts.<\/p>\n

“World Sickle Cell Day will come again next year.\u00a0 Let\u2019s see what it brings.<\/p>\n

“A sickle cell grandmother, “Nancy M. Ren\u00e9.”<\/p>\n<\/div>\n

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Kevin McCormack<\/a><\/strong> | June 18, 2021 at 8:28 am | Tags: Don Kohn<\/a>, dr. Niihara<\/a>, Dr. Ted Love<\/a>, Emmaus<\/a>, Engineering and Medicine<\/a>, Global Blood Therapeutics<\/a>, Joseph Rosenthal<\/a>, Juneteenth<\/a>, Mark Walters<\/a>, Matt Porteus<\/a>, Nancy Rene<\/a>, NASEM<\/a>, National Academies of Science<\/a>, Sickle Cell Data Collection Project<\/a>, Sickle cell disease<\/a>, World Sickle Cell Day<\/a> | Categories: Blood stem cells<\/a>, California Institute for Regenerative Medicine<\/a>, CIRM funded research<\/a>, City of Hope<\/a>, Clinical Advisory Panel (CAP)<\/a>, Clinical Trials<\/a>, Food and Drug Administration<\/a>, Gene editing<\/a>, Patient Advocacy<\/a>, Sickle cell disease<\/a>, Stanford University<\/a>, Stem cell champion<\/a>, Stem cell research<\/a>, UC Los Angeles<\/a> | URL: https:\/\/wp.me\/p4BBpx-4UO<\/a><\/div>\n\n\n\n
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An Open Letter to CIRM for World Sickle Cell Day “Dear CIRM, “World Sickle Cell Day is this Saturday June 19th. The goal of this day is to increase knowledge of the disease and understanding of the challenges faced. “It is … Continue reading →<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":["post-1699","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"_links":{"self":[{"href":"http:\/\/mydiabeticsoul.com\/index.php?rest_route=\/wp\/v2\/posts\/1699","targetHints":{"allow":["GET"]}}],"collection":[{"href":"http:\/\/mydiabeticsoul.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"http:\/\/mydiabeticsoul.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"http:\/\/mydiabeticsoul.com\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"http:\/\/mydiabeticsoul.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=1699"}],"version-history":[{"count":3,"href":"http:\/\/mydiabeticsoul.com\/index.php?rest_route=\/wp\/v2\/posts\/1699\/revisions"}],"predecessor-version":[{"id":1701,"href":"http:\/\/mydiabeticsoul.com\/index.php?rest_route=\/wp\/v2\/posts\/1699\/revisions\/1701"}],"wp:attachment":[{"href":"http:\/\/mydiabeticsoul.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=1699"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/mydiabeticsoul.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=1699"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/mydiabeticsoul.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=1699"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}