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  • Treatments | -scdaami-

    sickle cell treatments While there is no universal cure for sickle cell disease (yet), there are several therapeutic approaches to relieve symptoms, reduce complications, and extend life. Early treatment (by eight weeks) by a hematologist is critical for newborns. Beginning a course of prophylactic penicillin at age two months was a historic intervention in changing the course of childhood sickle cell survival. View our Feb. 29th Treatment Workshop where we discussed all the current treatments available to cure sickle cell. CLICK TO PLAY ON FACEBOOK Part 1 with Dr. Wanda Whitten-Shurney (44 mins) CLICK TO PLAY ON FACEBOOK Part 2 with Dr. Ahmar Zaidi (58 mins) The only cure for sickle cell disease is a bone marrow or stem cell transplant. Most sickle cell disease transplants are currently performed in children who have had complications such as strokes, acute chest crises, and recurring pain crises. These transplants usually use a matched donor. Blood and bone marrow transplants are riskier in adults. Read more ​ Medicines can reduce or alleviate symptoms and complications and prolong life. Penicillin In children who have sickle cell disease, taking penicillin two times a day has been shown to reduce the chance of having a severe infection caused by the pneumococcus bacteria. Newborns need to take liquid penicillin. Older children can take tablets. ​ Many doctors will stop prescribing penicillin after a child has reached the age of 5. Some prefer to continue this antibiotic throughout life, particularly if a person has hemoglobin SS or hemoglobin Sβ0 thalassemia, since people who have sickle cell disease are still at risk. All people who have had surgical removal of the spleen, called a splenectomy, or a past infection with pneumococcus should keep taking penicillin throughout life. Hydroxyurea Hydroxyurea is an oral medicine that has been shown to reduce or prevent several sickle cell disease complications. This medicine was studied in patients who have sickle cell disease, because it was known to increase the amount of fetal hemoglobin (hemoglobin F) in the blood. Increased hemoglobin F provides some protection against the effects of hemoglobin S. ​ Watch Dr. Shurney’s animated video about Hydroxyurea and how it works Endari Approved by the FDA for sickle cell use in 2017, Endari is an oral L-glutamine therapy for sickle cell disease and sickle cell thalassemia that reduces the acute complications of sickle cell disease in adults and children 5 years and older. It works by increasing the amount of glutamine in the blood. The added glutamine is taken up by the defective sickle cells, and when metabolized (broken down) results in the release of antioxidants.Common side effects include constipation, nausea, headache, abdominal pain, cough, pain in the extremities, back pain and chest pain. Patient web site Endari co-pay assistance Adakveo In 2019, the FDA also approved a new medicine to reduce the number of pain crises experienced by adults and children 16 years and older who have sickle cell disease. The medicine, which is given through an IV in the vein, helps prevent blood cells from sticking to blood vessel walls and causing blood flow blockage, inflammation, and pain crises. Possible side effects include nausea, joint pain, back pain, and fever. Patient resources web site Downloadable patient brochure ​ Oxbryta The U.S. Food and Drug Administration (FDA) approved a new medicine in 2019 to treat sickle cell disease in adults and children 12 years and older. The oral medicine prevents red blood cells from forming the sickle shape and binding together. This may decrease the destruction of some red blood cells, which in turn lowers the risk for anemia and improves blood flow to your organs. Possible side effects include headache, diarrhea, abdominal pain, nausea, fatigue, and fever. Rarely, allergic reactions may occur, causing rashes, hives, or mild shortness of breath. Talk to your doctor about other medicines you take. Patient web site Caregiver tips Downloadable patient information leaflet Transfusions are often used in acute or preventive situations. Transfusions are administered to treat and prevent certain sickle cell disease complications. These transfusions may include: Acute transfusion to treat complications that cause severe anemia. Doctors may also use transfusions when a patient has an acute stroke, in many cases of acute chest crises, and in multi-organ failure. A patient who has sickle cell disease usually receives blood transfusions before surgery, to prevent complications. Red blood cell transfusions to increase the number of red blood cells and provide normal red blood cells that are more flexible than red blood cells with sickle hemoglobin. Regular or ongoing blood transfusions for people who have had an acute stroke, to reduce the chances of having another stroke. Doctors also recommend blood transfusions for children who have abnormal transcranial Doppler (TCD) ultrasound results, because transfusions can reduce the chance of having a first stroke. ​ There are other treatments for specific complications. Be mindful that not all treatments work for everyone. Some people find success with alternative treatments as well, including medical marijuana (be knowledgeable about legalities that may impact school, work and overall health). To stay as healthy as possible, patients should be sure to get regular medical care that includes a pediatrician (for children) or primary care physician (for adults) and a hematologist and work with them to create the best individual care plan. Patients should also live a healthy lifestyle and avoid triggers that may cause a pain crisis. ​ ​ Page sources: NIH: National Heart, Lung, and Blood Institute, FDA.gov, Endari, Adakveo, Oxbryta ​

  • Coronavirus | -scdaami-

    Information for our sickle cell community during the COVID-19 pandemic Information surrounding COVID-19 changes rapidly. We'll continue providing updates here. HEALTH ALERT: What our Sickle Cell Community Needs to Know About the Coronavirus (COVID-19) from SCDAA PATIENTS RETURN TO WORK LETTER PROVIDERS SCD COVID-19 REGISTRY Be prepared, not scared! We encourage sickle cell patients to follow the guidance provided in the national Sickle Cell Disease Association of America's Health Alert and for everyone to practice sanitation and cleaning practices advised by the CDC, including avoiding crowds and gatherings (events, parties, church, etc.). Be aware that the virus can live on some surfaces for 2-3 days, and on clothing for unknown periods of time . Contact your doctor if you experience symptoms or have been in contact with COVID-19. ​ Do you need medical insurance? Or a primary care physician (PCP)? Are you feeling underprepared or overwhelmed? SCDAA-MI staff is still working to meet your needs - just remotely. Please contact us with questions or for assistance at (313) 864-4406 or (800) 842-0973 or info@scdaami.org . Information about COVID-19 Michigan COVID-19 News and Information COVID-19 guidance for sickle cell from the Centers for Disease Control (CDC) COVID-19 Info from Michigan Health Departments SCDAA-MI worksite protocols If you've been exposed to COVID-19 Resources for daily life during the pandemic Click here for a (PDF ) of the guide. La guía está disponible en español . Links to food, education, mental health resources and more. Job help : Unemployment information, guidelines for returning to work, and physician letters EMERGENCY PODCAST ON SICKLE CELL AND COVID-19 ​ If you need assistance navigating any of the services or resources listed above, please contact us: Detroit/SE Mich: (313) 864-4406 or (800)-842-0973 Children's Hospital SC Clinic: (313) 745-5613 Sickle Cell Trait Counseling: (313) 451-0014 School/Job Assistance: (734) 494-2119 ​ Email: info@scdaami.org Contact our nearest satellite office: Adult Clinic Caseworker at DMC : (313) 864-4406 Benton Harbor/Kalamazoo Area: (313) 505-4081 Grand Rapids/Muskegon Area: (616) 426-9259 Jackson/Lansing Area: (800) 842-0973 Saginaw/Flint Area: (989) 372-0256

  • SCM Walk Engagement | -scdaami-

    Ways to participate in our virtual walk Donate/Join/Fundraise Since the Walk is now virtual, registration is optional. You can turn your registration fee into a donation, join/create a team or become a fundraiser. Team Set Up Once you create a team, you'll get an email for page set up. We also have step-by-step instructions here to personalize your page. Sponsor Info Your company sponsorship heightens the visibility of your commitment to social responsibility. The return on investment benefits us all. Vendor/Exhibitor This year we're offering two vendor experiences: Both provide virtual promotion, one also offers limited sponsor benefits. Legacy Warriors Are you a sickle cell warrior who's 40 or older? We invite you to join our Legacy Salute! Sign up here by 9/5 to be included. The COVID-19 pandemic will keep us from walking together, but the reasons we walk are still present every day in every individual living with sickle cell. We still need your help to meet the needs of our community. How Our Virtual Walk Works “Join where you are and move how you choose” is the theme of this year’s Sickle Cell Matters Virtual Walk. This means you can participate from anywhere – home, a favorite landmark, nearby park, or your local drop-off election ballot box . (Hint!) Everyone who registers, donates, or starts a team will receive a pedometer, but you’re not limited to walking. Change it up! Transfer the 30-40 minutes you would have used to walk with our group to a session of Zumba, yoga, golf, dancing or yes, walking. ​​ We encourage you to start on Sept. 14 to help us promote the event. Post photos or videos of your activity to your social media accounts using #SickleCellMattersWalkMI #SickleCellLivesMatter #SickleCellMichigan. Have fun with it – show off your steps, shout out your team, team members, and the warrior you’re participating for. Then on Saturday, Sept. 19, join us on Facebook @sicklecellmichigan for the online celebration beginning at 10 a.m. Right click to download, save and share this graphic! Contests & Prizes Right click to download, save and share this graphic! ​Everyone who supports our 2020 Sickle Cell Matters Virtual Walk by registering, donating, fundraising, or starting a team by 9/5 will receive a pedometer as a thank you and reminder that fitness – movement – is important for all of us every day. Everyone who signs up as a fundraiser or creates a team by 9/5 will also be entered into a giveaway for a $100 gift card. We’ll recognize the two teams that raise the most money by Sept. 12. Team captain of the top team receives a $100 gift card. The second place team captain will receive a $50 gift card. The team captain with the most walkers as of Sept. 12 will receive a $100 gift card. We’re expanding our annual T-Shirt Contest to include posters this year. Create a design supporting #SickleCellLivesMatter. Show your poster or wear your T-Shirt in your virtual walk photos and videos. Enter your T-Shirt and poster designs in the contest by Sept. 5 for a chance to win a $100 gift card. Winners will be announced on Sept. 19. (You must be registered for the walk, donate, or be signed up as a fundraiser or team captain to be eligible for entry.) Tribute to Fallen Warriors We offer our heartfelt condolences to all the friends, families and loved ones of individuals with sickle cell who’ve passed away over the years. This year, again, we’ll pay tribute to the lives of those we've lost here in Michigan. To include your loved one in our tribute, please send the following to info@scdaami.org no later than Sept. 5: Name of the individual who passed away, dates of birth and death, and a photo. Right click to download, save and share this graphic! Salute to Legacy Warriors Right click to download, save and share this graphic! We’re inviting all individuals with sickle cell aged 40 and older to join our 2020 salute. Consider this an extra birthday celebration! The honors are open to all warriors, no matter where you live. Sign up here and send a photo of yourself to info@scdaami.org with the subject line “Legacy Warrior.” Be sure to include your name in the email. #WarriorsWipeItDownChallenge We’re inviting all sickle cell warriors to join in a special #WipeItDown challenge for our virtual walk. Post to your social media using any of the day’s hashtags: #SickleCellMattersWalkMI #SickleCellLivesMatter #WarriorsWipeItDown Right click to download, save and share this graphic! #SickleSlide ​​ ​​Calling the hustle crowd! Take on the Sickle Slide to raise consciousness around sickle cell in a fun and active way. Post your video and tag us @sicklecellmichigan. Be sure to post a fact or two about your life with sickle cell and use #SickleSlide and #SickleCellMattersWalkMI. You could be featured in our Walk day celebration! Check our leaderboard frequently to see how your campaign is doing and what the competition is up to. For additional information, please contact the following SCDAA-MI staff for specific assistance or call (313) 864-4406: Registration, team setup or technical issues - email Kristal Johnson Sponsorships - email Stefanie Worth Vendor Information - email Tracie Conic

  • Our Impact | -scdaami-

    our impact Download a PDF of our 2018-19 Community Impact Report.

  • 2021 Gallery | -scdaami-

    2019 Photo Gallery 2018 Photo Gallery 2021 photo galleries Awareness Campaign Launch This year for World Sickle Cell Day the Sickle Strong Adult Support Group hosted a lantern release to where we all could shine a light for individual living with sickle cell and to honor the memory of the beautiful ones we loss. Please enjoy these highlights! ​ Thank You! ​ (Is your photo/video missing from this collection? If so, email it to us.) ​ ​ ​

  • Press Releases | -scdaami-

    News media releases and alerts from SCDAA-MI press releases 2019-20 Press Releases ​ September 17, 2020: MEDIA ALERT: SCDAA-MI marks Sickle Cell Awareness Month with walk, ER call-to-action June 12, 2020: SCDAA-MI “Shines the Light” for World Sickle Cell Day, June 19 February 26, 2020: SCDAA-MI Announces SAFE(R) Initiative to Improve Emergency Sickle Cell Care November 20, 2019: Dr. Wanda Shurney Responds to FDA's Approval of Adakveo FOR IMMEDIATE RELEASE September 17, 2020 ***MEDIA ALERT*** SCDAA-MI marks Sickle Cell Awareness Month with walk, ER call-to-action Virtual walk participants encouraged to “move how you choose” on Sept. 19 Physician, hospital partners urged to take a stand for SAFER sickle cell care WHAT: The annual Sickle Cell Matters Walk raises consciousness around the most common genetic disorder in the U.S., but this year it happens from wherever participants are. More than just an awareness event, SCDAA-MI’s walk raises funds, promotes the need for additional sickle cell research, and combats medical inequities often faced by sickle cell patients. #SickleCellMatters #SickleCellMattersWalkMI #SickleCellLivesMatter WHO: SCDAA-MI CEO & Medical Director, Wanda Whitten-Shurney, M.D.; Honorary Chair Deborah Smith-Pollard, co-host of “Sunday Morning Inspiration” on MIX 92.3 FM and Professor of English Literature at the University of Michigan-Dearborn; Honorary Co-Chair, Ahmar Zaidi, M.D., a Pediatric Oncologist/Hematologist, in the Comprehensive Sickle Cell Clinic at Children’s Hospital of Michigan, and nationally known SCD advocate known to most as “Dr. Z.” Event sponsors: (Diamond Presenting) Global Blood Therapeutics and Emmaus Life Sciences; (Silver) Novartis, Medunik USA, and Wayne County Community College District; (Copper) Pfizer and Functional Fluidics. WHY: Though medically recognized more than 100 years ago, it was only the introduction of prophylactic penicillin in the 70s and subsequent comprehensive pediatric efforts that now allow most individuals with sickle cell to live far beyond childhood and well into adulthood. However, there are just four disease-modifying treatments available to sickle cell patients, with two of those achieving FDA approval less than a year ago. Most patients, then, resort to emergency department care for sickle cell’s unpredictable, indescribable pain crises. Once there, only about one in four patients receives the standard of care described in current guidelines and many studies have shown that patients do not receive treatment for their pain as soon as, or in appropriate doses as, other patients, according to the U.S. Health and Human Services Office of Minority Health. WHEN: Saturday, Sept. 19 WHERE: The virtual Sickle Cell Matters online program premiers at 10 a.m. EST on SCDAA-MI’s YouTube channel (https://www.youtube.com/channel/UChFCW2PqipdZiRKcb16Z5Gw ) and Facebook Live @SickleCellMichigan. Interested hospital and physician partners can learn more and partner with SAFER at www.scdaami.org/sicklecell911. MEDIA CONTACT: Stefanie Worth | email: worths@scdaami.org ABOUT SCDAA-MI: Our Mission: To maximize the quality of life of individuals living with sickle cell disease. To enable individuals with sickle cell trait to make informed decisions with respect to family planning. To provide education and testing for the general public. Founded in 1971 by Charles F. Whitten, M.D., the Sickle Cell Disease Association of America – Michigan Chapter, provides education, assistance, and advocacy for individuals living with and families affected by sickle cell disease. Other services include counseling, support groups, referrals for financial assistance and medical care. SCDAA-MI connects students and job seekers with school, college and employment assistance; sends children to summer camp each year, and works to raise public awareness. The agency also serves as the coordinating center for the newborn sickle cell screening program for the Michigan Department of Health and Human Services. SCDAA-MI’s services are available throughout Michigan and span lifetime needs. For more information, visit www.scdaami.org or call 313-864-4406. ### BACK TO THE TOP SCDAA-MI “Shines the Light” for World Sickle Cell Day, June 19 Supporters are asked to #MaskUp4SickleCell, celebrate community grads, and recognize #SickleSabbath JUNE 12, 2020 PRESS RELEASE PDF ​ CONTACT : Stefanie Worth Sickle Cell Disease is the most prevalent inheritable blood disorder in the country, affecting 70,000 – 100,000 individuals, most of whom are African American. “It’s a blood disease, not a black disease,” says Dr. Wanda Whitten-Shurney, citing one of the takeaways her agency and other community-based sickle cell organizations want people to learn through this year’s World Sickle Cell Day events. Sickle cell is genetic – not contagious – and most common among people of African descent and those of Latin American and Middle Eastern heritage, but can affect anyone of any race. ​ “We have an entire weekend of activities that include generating awareness, honoring our graduates, and learning during worship,” says Shurney, CEO and Medical Director of the Sickle Cell Disease Association of America – Michigan Chapter Inc. “We’re sending our message out into the world to create change on behalf of a group of individuals who were born with a disease that is almost always automatically discriminated against.” Efforts for World Sickle Cell Day, Friday, June 19, aim to enlighten the community-at-large. A social media blitz featuring the hashtags #MaskUpForSickleCell and #BehindTheMask will feature photos of patients, caregivers and allies in red masks telling their stories and sharing key messages: Sickle cell disease affects individuals of all races. It’s a BLOOD disease, not a Black disease. It is in your genes. It is NOT contagious. Individuals with sickle cell disease are not drug addicts, they need pain relief. If both parents have sickle cell trait they can have a child with sickle cell disease. GET TESTED to know for sure. ​ Though medically recognized more than 100 years ago, it was only the introduction of prophylactic penicillin in the 70s and subsequent comprehensive pediatric efforts that now allow most individuals with sickle cell to live far beyond childhood and well into adulthood. To help celebrate their milestones, World Sickle Cell Day continues on Saturday, June 20 with a Virtual Graduation Open House for students finishing high school, trade school or college. On Sunday, June 21, World Sickle Cell Day attention turns to houses of worship varying in size, denomination and membership composition for Sickle Sabbath. This outreach effort focuses on educating people about sickle cell trait, which is carried by approximately 1 in 12 African Americans. SCT is also found among people with ancestry from sub-Saharan Africa; the Western Hemisphere (South America, the Caribbean, and Central America); Saudi Arabia; India; and Mediterranean countries such as Turkey, Greece, and Italy according to the Centers for Disease Control. “Sickle cell disease starts with sickle cell trait” is the message churches are asked to carry to their congregations along with information about chances of inheritance and challenges of the disease. ​ “This is an impactful time in America and we hope that World Sickle Cell Day can build on the Black Lives Matter movement to create real change in medical settings for people with sickle cell. I’m calling on my colleagues who knelt in solidarity with White Coats For Black Lives to create a movement that makes the emergency rooms and hospitals safe spaces for sickle cell patients,” says Shurney. ​ “The hallmark of sickle cell is excruciating, unpredictable pain that often drives patients to seek care in emergency departments,” Shurney continues. “These are individuals who’ve often lived with pain since childhood and – being good patients – know their bodies and what they need to control their pain, which is typically opioids. Yet they arrive at hospitals seeking relief and are often accused of being there just to get drugs. You would think they’d be treated like a Type 1 diabetic who shows up needing care and knows their proper insulin dosage, but they’re not.” ​ In February, SCDAA-MI launched its SAFE(R) initiative to help counter this reality. SAFE(R) provides medical professionals with quick access to an online portal at SCDAAMI.org/SickleCell911 that provides clinical practice guidelines for sickle cell established by the National Institutes of Health, sickle cell-specific opioid guidance from the CDC, and emergency room triage guidelines from the Agency for Healthcare Research and Quality, as well as best practices and recommendations from the American Society for Hematology and other leading experts in sickle cell treatment. ​ Only about one in four patients with sickle cell disease receives the standard of care described in current guidelines, and many studies have shown that patients do not receive treatment for their pain as soon as, or in appropriate doses as, other patients, according to the U.S. Health and Human Services Office of Minority Health. ​ “The world is at a crossroads and so is sickle cell disease. Two new medications were approved by the FDA for treatment at the end of 2019. Yet, patients still face barriers accessing these meds and receiving competent, compassionate medical care,” says Shurney. “Too many providers still don’t know how to properly treat sickle cell patients. Stereotypical biases prevent many individuals from receiving care according to nationally established guidelines – or any care at all. ​ “We have a long way to go to reach health equity where sickle cell is concerned. Now is a great time to start.” BACK TO THE TOP SCDAA-MI ANNOUNCES SAFE(R) INITIATIVE TO IMPROVE EMERGENCY SICKLE CELL CARE Effort aims to assist medical community in proper treatment of long-misunderstood disease ​ ​ February 26, 2020 PRESS RELEASE PDF ​ CONTACT : Stefanie Worth ​ Today, the Sickle Cell Disease Association of America - Michigan Chapter launched a new initiative designed to help advance the care and well-being of individuals living with sickle cell disease. The initiative, known as SAFE(R) , provides medical professionals with quick access to an online portal at SCDAAMI.org/SickleCell911 that provides clinical practice guidelines for sickle cell established by the National Institutes of Health, sickle cell-specific opioid guidance from the Centers for Disease Control, as well as best practices and recommendations from the American Society of Hematology and other leading experts in sickle cell treatment. Though medically recognized more than 100 years ago, it was only the introduction of prophylactic penicillin in the 80s and subsequent comprehensive pediatric efforts that now allow most individuals with sickle cell to live far beyond childhood, although their lifespan still falls short of the national average by about 30 years. Yet, while research and treatments for the disease are now gaining more attention, individual’s lives are at stake daily due to a lack of adult medical providers trained in sickle cell’s complexities. In fact, there is a peak in mortality at the time of transition from pediatric to adult care. “For more than 30 years, I’ve had the privilege of serving as pediatrician to Michigan children with sickle cell disease – caring for them and their families, and advocating for their needs. Along with my colleagues across the country, we’ve achieved levels of success in their healthcare that my father only dreamed of when he started SCDAA-MI 49 years ago,” says Dr. Wanda Whitten-Shurney, CEO and Medical Director. “Now we’ve reached this pivotal point in sickle cell history where research and treatment possibilities are at an all-time high, yet, we are losing far too many patients we’ve brought all this way for the past four decades to a medical system unprepared to receive them.” The emergency room – a frequent stop for our patients – is an extremely perilous place for adults. Individuals out-of-state have often reached out to their former pediatricians at the Children’s Hospital of Michigan Sickle Cell Clinic asking them to coach a doctor in charge of their care unfamiliar with the disease. The situation has produced a skepticism among patients that they’ll be adequately cared for, sometimes causing them to take their chances and not go to the ED at all. Central, then, to the SAFE(R) Initiative is the wallet-sized Sickle Cell 911 (SCD911) card, which directs providers to the SAFE(R) site at SCDAAMI.org/SickleCell911 . In addition to guidelines, recommendations and best practices, the medical professional-focused pages also provide educational resources about the disease and its potential complications. Sickle cell patients are advised to carry the SCD911 card with them and present it when they need emergency care – whether at home or away. Patients and caregivers have shared stories about ED providers resorting to the internet or medical journals to find information about treating the disease. The SAFE(R) initiative puts that information at providers’ fingertips in an easily accessible and usable format, hopefully saving crucial acute care time that in turn leads to saving lives. “I’m appealing – no, challenging – my counterparts in adult primary, specialty, and emergency medicine to partner with us in changing this narrative by committing to SAFE(R) treatment. It’s time for a plot twist, so to speak, and we invite you to help re-write the future chapters of the sickle cell story. Patients throughout Michigan are looking for SAFE(R) spaces for care every day. Let us know we can confidently refer them to you and your health systems for this compassionate, equitable, and guideline-based treatment. History will thank you and so will we.” ​ ​ BACK TO THE TOP Dr. Wanda Shurney Responds to FDA's Approval of Adakveo First targeted treatment sparks excitement and hope among doctors and those living with the debilitating condition ​ ​ November 20, 2019 PRESS RELEASE PDF ​ CONTACT : Stefanie Worth Friday, the FDA gave its approval for Adakveo (crizanlizumab-tmca) , the first targeted therapy to treat pain in patients with sickle cell disease (SCD). “This medication is a potential game changer in the quest for better treatment for patients with sickle cell disease (SCD),” said Wanda Whitten-Shurney, M.D., CEO and Medical Director of the Sickle Cell Disease Association of America - Michigan Chapter (SCDAAMI). “We are excited that after 109 years, individuals with SCD can finally say there is a medication developed specifically for them. For 20 years our patients had only one disease modifying medication, hydroxyurea. ​ “Unfortunately, because it is a drug used to treat cancer, many physicians are hesitant to prescribe it and many patients are afraid to take it – leaving supportive care such as blood transfusions, antibiotics for infections, and potent narcotics for essential pain relief as their only options,” said Dr. Shurney. First recognized by the medical community in the United States in 1910, SCD is a genetic condition inherited from two parents who carry the gene for sickle cell trait. The hallmark of the disease is episodes of unpredictable and often excruciating pain due to crescent- (sickle) shaped red blood cells that block the flow of blood, and therefore the delivery of oxygen, to vital organs. These red blood cells are also fragile and break down early causing anemia and fatigue. The newly-approved Adakveo targets the episodes of pain frequently referred to as a pain crisis. ​ “We hear story after story from patients in genuine need of significant pain treatment being denied the compassionate and competent care they desperately need and deserve because many in the medical community are unsure, uncomfortable, or unaware of how to best treat sickle cell patients,” said Dr. Shurney. “Patients in crisis are often questioned about the validity of their symptoms and assumed to be ‘drug seeking’.” This problem is exacerbated by the current opioid crisis. ​ In addition to her role at the SCDAAMI – fondly known as the Sickle Cell Center throughout the community – Dr. Shurney has been a familiar face to many families whose children have been patients at the Comprehensive Sickle Cell Clinic at Children’s Hospital of Michigan during her 30-year career providing out-patient care with an emphasis on education and coping strategies. She has worked relentlessly to help kids and their families manage the chronic ailment while enjoying healthier, more active lives. Many of her patients are now adults – something unheard of 30 or 40 years ago. ​ “Thanks to advances like the administration of penicillin to give children with SCD a fighting chance against infection, we’re now seeing many patients living a closer to normal lifespan, but they are still faced with significant challenges,” said Dr. Shurney. “This illness can disrupt every aspect of the family’s life. Children miss school, parents and adults miss work which can result in termination of employment and the resultant financial strain on the family. Frequent trips to the doctor and repeated hospitalization are an additional burden. Many individuals have some level of pain every single day. After 109 years, it is past time to improve life and offer hope to this patient population.” ​ Though numbers are thought to be higher, an estimated 100,000 individuals in the U.S. currently live with some form of the debilitating and life-threatening disease. Comparatively, there are about 30,000 people with cystic fibrosis and 20,000 people (predominantly men) with hemophilia.1 Yet, despite three to five times as many people living with SCD, the disease remains widely unknown, misunderstood, and poorly resourced. ​ “This in the face of the fact that SCD primarily affects people of color - mostly African Americans and Latinos, but also East Indians, Greeks, Italians, individuals from the Middle East, and other people from malaria-afflicted parts of the world,” said Dr. Shurney. The disease is an evolutionary response to malaria: Those with sickle cell trait are less likely to get malaria. But nature’s protective mechanism brought about its own unbearable consequences. ​ “Thanks to the Orphan Drug Act, there are numerous promising clinical trials underway. We are also encouraged by the National Institutes of Health’s Cure Sickle Cell Initiative striving for a genetic cure in the next five to 10 years,” said Dr. Shurney. “The FDA’s approval of Adakveo is a big step in the right direction. Our next challenge is to make sure the medication is accessible to the patients who so desperately need it. Individuals with sickle cell disease are living longer, but we are also focused on improving their quality of life.” 1 Cystic fibrosis and hemophilia statistics courtesy of the Centers for Disease Control at www.cdc.gov ​ ​ BACK TO THE TOP

  • SAFERProvider | -scdaami-

    SICKLE CELL 911: FAST ACCESS TO GUIDELINES & BETTER CARE Empowering medical professionals to implement evidence-based sickle cell action. Amplifying the patient's voice in care. OPIOIDS & SCD NIH GUIDELINES COMPLICATIONS ASH POCKET GUIDES ABOUT SAFE(R) SICKLE CELL 911 Resources for Provider Education Access/download a compilation of the NIH guides specific to SAFE(R). PARTNER WITH SAFER Improving Emergency Department-Based Care of Sickle Cell Pain "Presented in this article are 4 tenets of implementing guideline-adherent emergency sickle cell care gleaned from the available literature and continuous quality improvement efforts at our institution." . . ."Application of the principles discussed within can improve patient and provider satisfaction, quality, and safety." (From the American Society of Hematology) PDF Online American College of Emergency Physicians ACEP's Emergency Department Sickle Cell Care Coalition offers a substantial list of training and informational resources for medical professionals providing treatment in emergency and acute care settings here . Acute and Emergency Department Assessment and Treatment Sickle Cell Disease Care in the Emergency Department: Improvement Initiatives and Ongoing Research (1 hour) - a webinar from NIH, OMH and ACEP. SCD Core Concepts for the Physician and Nurse - Sickle Cell Pain (PowerPoint): A presentation from Duke University and The Johns Hopkins School of Medicine Emergency care for sickle cell – Podcast (1 hour): A focus on assessment and treatment. NOTE: The interviewer uses the term "sickler" throughout the podcast. This term in NOT well-received by sickle cell patients here. Sickle Cell is More Than Pain: Managing Complications Major Complications of Sickle Cell Disease and Nursing Implications - PDF download Sickle Cell Disease: When to Transfuse Learn about indications for blood transfusion in patients with sickle cell disease, the complications associated with these transfusions, and how you can help reduce the risk for these complications in your patients. Sickle Cell Disease TeleECHO Clinic - Didactic Video Series Project ECHO (Extension for Community Healthcare Outcomes) is an internationally recognized telementoring innovation that build clinician knowledge in diagnosing and treating complex disorders. Project ECHO connects local clinicians with experts from sickle cell centers to learn skills necessary to deliver high quality sickle cell disease care using this proven telementoring model. Via Washington University School of Medicine in St. Louis. Helpful Contextual Videos About Sickle Cell Disease Dr. Ahmar Zaidi at TEDxDetroit (10 min): Dr. Ahmar Zaidi, pediatric hematologist/oncologist at the Comprehensive Sickle Cell Clinic at Children's Hospital of Michigan discusses the systemic disparities that further threaten the well-being of people who live with sickle cell's life-threatening impact. Experts address the prevalence and overall burden of sickle cell disease across the globe and the role of community physicians in managing the disease via HCP Live Peer Exchange (5 min) Dr Ahmar Zaidi on Efforts Needed to Address Complications of Sickle Cell Disease (1 min): Ahmar Zaidi, MD, pediatric hematologist-oncologist, Comprehensive Sickle Cell Center, Children's Hospital of Michigan, discusses the need for more efforts from both the medical community and regulators to address the psychosocial complications of sickle cell disease. Ongoing Educational Opportunities "This practical toolkit provides clinicians with materials and resources to engage with patients and educate them about sickle cell disease. Use the toolkit with patients individually or in group education settings to help build a strong foundation for shared decision-making regarding treatment goals and preferences, transitions of care, and individualized treatment plans." Learn more . The U. S. Department of Health and Human Services Office of Minority Health offers the Sickle Cell Disease Training And Mentoring Program (STAMP) a free sickle cell disease telehealth series for primary care providers. Learn more . SOURCES: Medscape https://www.medscape.com/viewarticle/891436?src=par_cdc_stm_mscpedt&faf=1; Ward, R, Helman, A, Foote, J. Emergency Management of Sickle Cell Disease. Emergency Medicine Cases. August, 2015. https://emergencymedicinecases.com/emergency-management-of-sickle-cell-disease/. Accessed 02-18-2020; American College of Emergency Physicians, https://www.acep.org/by-medical-focus/hematology/sickle-cell/resources/. Accessed 04-28-2020. Prime Education LLC, https://primeinc.org/cme/monograph/3412/Transforming_Clinical_Outcomes_for_Patients_with_Sickle_Cell_Disease:_The_Power_of_Collaborative_Patient-Provider_Partnerships?utm_source=scdaa&utm_medium=email1&utm_campaign=83pr201. Accessed 09-11-2020.

  • Advocacy and Legislation | -scdaami-

    Your voice matters in the election process. The representatives we choose make decisions that affect access to healthcare, regional transportation, insurance laws, disability protections, prescription pricing and more. Join us as we speak out on behalf of individuals living with sickle cell and the legislation that affects them. ADVOCACY TRAINING Would you like to be able to join us on an advocacy meeting to speak with a legislator? Below, you can watch a training webinar presented to our sickle cell advocates by the Every Life Foundation for Rare Diseases. (90 minutes, mp4 webinar) OUR ADVOCACY PARTNERS Sickle Cell Disease Association of America Rare Disease Legislative Advocates Every Day Life Foundation Health Can’t Wait Coalition American Society of Hematology ARE YOU READY TO VOTE? November Presidential Election - Tuesday, Nov. 3 The deadline to register to vote in this year’s November presidential election is Oct. 23 for any form but in-person. Last day for in-person registration is election day, Nov. 3. ​ To be eligible to vote in Michigan, you must be: A Michigan resident (at the time you register) and a resident of your city or township for at least 30 days (when you vote) A United States citizen At least 18 years of age (when you vote) Not currently serving a sentence in jail or prison Learn more about voting in Michigan here . ​ Check your voter registration status here . ​ Register online here . Absentee voting “Due to the constitutional amendment passed by voters in 2018, all eligible and registered voters in Michigan may request an absent voter ballot without providing a reason. They can visit their local clerk’s office for an absent voter ballot application or download one at Michigan.gov/Vote ” ​ Michigan ballot drop locations You can take your absentee ballot to the drop box in your jurisdiction and track your ballot through the election process. advocacy & legislation Current issues we’re working on include: The American Society of Hematology wants to ensure the needs of individuals living with sickle cell are addressed through Medicaid in COVID-19 stimulus legislation. Learn more . SB612 (Michigan) - A bill to change legislation around insurance preauthorization and step requirements. Learn more and take action . (Complete the action form to create a pre-written email that will be sent directly to your senator.) New Medicaid work requirements Securing coverage for new sickle cell treatments (We'll keep you posted!) Other recent issues “The Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2018” (federal) – Passed in December 2018 Michigan's medical marijuana law - View a summary of the bill , what conditions are covered by the bill, and its restrictions Have you completed your 2020 Census?​ Data gathered from the 2020 Census will help inform funding decisions for school lunches, infrastructure, first responders and more. Your answers are confidential and there are no citizenship questions. Take 10 minutes to answer the census today DO YOU KNOW WHO REPRESENTS YOU? You can click here and enter your address to find your local, state and federal elected officials along with their names and contact information. Use the map to see Michigan's legislative districts . World Sickle Cell Disease Awareness Day in Michigan - June 19, 2020 2020 World Sickle Cell Day received legislative support this year as Rep. Ronnie Peterson introduced House Resolution #280 declaring June 19, 2020 as World Sickle Cell Awareness Day in Michigan. Rep. Peterson also introduced a bill to create a sickle cell license plate for Michigan. The bill received outstanding bi-partisan support. ​ We are deeply grateful for these actions from our elected officials and the members of the Michigan Legislative Black Caucus who were able to join us at the capital. #BlackPatientLivesMatter