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patient support SAFER Initiative NIH Guidelines & Opioids Patient Rights Tools and Tips Hematologist Search More Online Resources We want to make it simpler to find credible, useful information that helps make it a little easier to live with sickle cell. Be sure to scroll all the way to the bottom of the page. There's a lot of great info here, including the CDC's guidance on opioids for sickle cell, your rights as a patient, guidelines to help your doctors with your care, and more. HEALTH ALERT FROM THE SICKLE CELL DISEASE ASSOCIATION OF AMERICA PATIENT INFO RETURNING TO WORK PROVIDER INFO Have you tested positive for COVID-19? Or do you have a cough with a fever? You can call Dr. Z (Dr. Ahmar Zaidi) at 248-797-9936 or Dr. Mike (Dr. Mike Callahan) at 248-953-5250. Please respect the docs' time and dedication and only reach out to them if you’re diagnosed with Coronavirus or have a cough + fever. MICHIGAN WARRIORS ONLY PLEASE: ​ We appreciate them being available to the community this way! We're working to keep you SAFE(R)! Headed to the emergency room/department (ED)? Take this! Be sure to keep our SAFE(R) card on hand. It directs physicians/medical personnel to a sickle cell acute care site made just for them - putting all the current clinical practice guidelines at their fingertips in one place. No need to search the internet: PDF documents and source links are all included. So before you go, click the image to access a printable version. No time to print? Pull up the page on your phone (www.scdaami.org/patient-support) and take a screen shot. When you arrive, present it at the registration desk and note the time. Present another copy at triage. Again note the time. If you're too sick, remember that to take someone with you to act as your advocate. Let the hospital staff know that's what they're there for. you have the right ​ We realize not everyone is familiar with the proper treatment for sickle cell. This can help you receive SAFE(R) care. Be sure to take the after each ER visit to let us know about your treatment and care. SAFER ER survey uestions or feedback. Contact us with q A tip from Twitter: Be sure to document your ED provider's name and course of treatment for future reference. Do the same if you're admitted. When someone takes good care of you, shout out a thank you on IG, Twitter or Facebook and tag #scdaami #sicklecell and the hospital. Let's be heard! BACK TO THE TOP NIH - HEALTH MAINTENANCE FOR SCD Click the image for a PDF of the NIH guidelines and recommendations for the health maintenance of people with sickle cell. (Approx. 40 pages) Read and provide a copy to your primary care physician. Click the yellow button to go directly to the full NIH document. Source: National Institutes of Health NHLBI CDC OPIOID CLARIFICATION FOR SCD The CDC clarified its opioid guideline in a letter to ASH stating it was not intended to manage SCD. The CDC refers providers to NIH NHLBI guidelines for care. Click the image for that letter or the yellow button for CDC statement on guideline misapplication. Source: American Society of Hematology NIH - TREATMENT GUIDES FOR SCD Click the image for a PDF of the full NIH clinical practice guidelines for the management of sickle cell disease (161 pages). Click the yellow button for a PDF of the NIH's (National Institutes of Health) 48-page quick guide to those practice guidelines. Source: National Institutes of Health NHLBI BACK TO THE TOP Know Your Rights - The Joint Commission As a patient, you do have rights and a role regarding your treatment and care. This brochure has questions and answers to help you learn about your rights and role as a patient. Knowing your rights and role can help you make better decisions about your care. (Image links to brochure) Source: The Joint Commission Speak Up For Your Rights - The Joint Commission As a patient, you have the right to be informed about and make decisions regarding your care. You also have the right to care that is free from discrimination, as well as the right to have a patient advocate. Learn about the different rights you have as a patient. (Image links to short video) Source: The Joint Commission Ask Your Advocate to Speak Up - The Joint Commission As a patient, you have a right to have a patient advocate - a friend, family member, or whoever you designate. Your advocate can be a partner in your care, helping you through every step of your treatment. Watch this video and ask your advocate to Speak Up™! (Image links to short video) Source: The Joint Commission BACK TO THE TOP PASSPORT TO HEALTH TOOLKIT Dr. Wanda Whitten-Shurney's Passport to Health Toolkit is a great source of information for maintaining your health. (Join us for an educational program to receive the backpack that goes with it. *While supplies last!) Source: Dr. Wanda Shurney TIPS FOR TRIPS TO ER Emergency room visits are a frequent course of action for people with sickle cell. The CDC provides this handout with suggestions for talking with physicians and navigating the experience. Source: Centers for Disease Control CLINICAL TRIALS Research into sickle cell treatments is at an all-time high. New possibilities move through a series of studies and approvals that include clinical trials. Interested in participating? Here's a list of current NIH-funded trials. Source: National Institutes of Health BACK TO THE TOP SICKLE CELL FACTS & FIGURES The American Society of Hematology (ASH) provides this clear and thorough handout with facts and figures to help educate yourself and others about the biology and impact of sickle cell disease. Source: American Society of Hematology SICKLE CELL GLOSSARY A diagnosis of sickle cell comes with its own language. If you're newly-diagnosed, the words can be overwhelming. This glossary will serve as both an introduction and a refresher for those who need it. Source: Missouri Dept. of Health & Senior Services UNDERSTANDING MEDICAL SPEAK Have you encountered unfamiliar terms used in your medical care? If so, you're not alone. Here you'l find definitions in every day language to help you better understand your condition. Source: Medical Library Association BACK TO THE TOP Looking for a hematologist? Try this . (We do not endorse the physicians listed. Use proper care in researching their expertise.) You can also contact our office for suggestions provided by existing patients/clients. zip code-based search Other informational resources

SCDAA-MI SICKLE CELL DISEASE ASSOCIATION OF AMERICA - MICHIGAN CHAPTER 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. Sickle cell is a complex biopsychosocial condition affecting every blood vessel, organ, and system in the body. While its severity impacts each individual uniquely, sickle cell’s most common visible presentation is excruciating, unpredictable pain. However, the condition’s less visible complications of continual hemolytic anemia and vascular and organ damage are silent, but life-shortening, ramifications suffered by every individual with sickle cell. Watch the Virtual Walk program 2020 was our best fundraising walk ever! Thanks for your support! Need Help Call or email us if you need help. SCD COVID-19 health advisories from SCDAA's MARAC Virtual Fall Camp Apply to North Star Reach's virtual fall camp SAFER Sickle Cell 911 We're keeping patients SAFE(R) by working with physicians to implement guideline-based care. Feb 29th Treatment Workshop Dr. Shurney and Dr. Z provided a day of great info at our Treatment Workshop! Ask Your Advocate to Speak Up! Learn more about your rights as a patient with these useful resources from The Joint Commission. CDC SCD Opioid Clarification Graphic In Feb. 2019, the CDC issued a clarification of its opioid guidelines as related to sickle cell. Those guidelines were not intended for the management of SCD and medical professionals should refer to NIH NHLBI guidelines for proper administration of narcotics. Watch the Virtual Walk program 2020 was our best fundraising walk ever! Thanks for your support! Need Help Call or email us if you need help. SCD COVID-19 health advisories from SCDAA's MARAC Virtual Fall Camp Apply to North Star Reach's virtual fall camp SAFER Sickle Cell 911 We're keeping patients SAFE(R) by working with physicians to implement guideline-based care. Feb 29th Treatment Workshop Dr. Shurney and Dr. Z provided a day of great info at our Treatment Workshop! Ask Your Advocate to Speak Up! Learn more about your rights as a patient with these useful resources from The Joint Commission. CDC SCD Opioid Clarification Graphic In Feb. 2019, the CDC issued a clarification of its opioid guidelines as related to sickle cell. Those guidelines were not intended for the management of SCD and medical professionals should refer to NIH NHLBI guidelines for proper administration of narcotics. SCDAA-MI provides education, assistance, and advocacy for individuals living with and families affected by sickle cell disease. Our services are available throughout Michigan and span lifetime needs. OPPORTUNITIES TO LEARN - SHARE - DISCOVER SICKLE SABBATH ANY SUNDAY STATE OF SICKLE CELL DISEASE EXPLORE TREATMENTS WAYS TO ENGAGE WITH SCDAA-MI NEWS & MEDIA SPONSORS & ALLIANCES ADVOCACY & LEGISLATION WE'RE NOW WORKING REMOTELY TO HELP PROTECT OUR COMMUNITY. PLEASE CALL FOR ASSISTANCE. THANK YOU! DETROIT OFFICE 18516 James Couzens Fwy Detroit, MI 48235 Mon - Fri: 9 a.m. - 5 p.m. ​​Special Event Hours as Posted 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) 595-0280 School/Job Assistance: (313) 595-0541 Email: info@scdaami.org SATELLITE OFFICES Adult Clinic Caseworker at DMC: (313) 864-4406 Benton Harbor/Kalamazoo Area: (313) 505-4081 Grand Rapids/Muskegon Area: Jackson/Lansing Area: (800) 842-0973 (616) 788-9816 Saginaw/Flint Area: (989) 372-0256 THANK YOU TO OUR FUNDERS & SPONSORS Mostrar Mais

our services Top of Page Newborn Screening Testing & Genetic Counseling Case Management Career Development Community Education Newborn Screening As of July 1987, every baby born in the state of Michigan is tested for sickle cell conditions by the Michigan Department of Community Health. This identification allows infants to receive lifesaving penicillin prophylaxis before the disease might be diagnosed from the occurrence of sickle cell disease symptoms. Newborn screening also enables families to receive early disease education and be aware of critical signs and symptoms that may require medical/lifesaving intervention. ​ When an infant is diagnosed with sickle cell trait, the agency provides information to the family about the significance of the condition and free testing for other family members if desired. Return to top of page SCDAA-MI also helps with: Obtaining the required confirmatory test Education and genetic counseling Penicillin management Access to appropriate medical care Testing & Genetic Counseling The function of the testing program is to determine whether a person is at risk for having a child with sickle cell disease. The non-directive counseling program provides detailed and accurate information about sickle cell trait and sickle cell disease for those identified as carriers. This will enable individuals and couples to make informed decisions that they believe are in their best interest regarding family planning. Return to top of page Walk-ins welcome M-F 9 a.m. - 5 p.m. We are open until 7 p.m. on Thursday evenings for appointments. Case Management Services One of the major functions of the social work program is to assure that clients have access to adequate medical care. Our focus is to provide comprehensive client centered services which lead to empowerment and self-sufficiency. Community Health Workers/Patient Advocates provide public education, social work services and care coordination services to children and adults with sickle cell disease throughout Michigan at Children’s Hospital of Michigan and other local health institutions covering Lansing, Pontiac, Jackson, Ann Arbor, Flint, Saginaw, Kalamazoo, Benton Harbor, Grand Rapids and Muskegon. Services also include trait follow-up and conducting an annual psychosocial assessment for families with appropriate follow-up. The services provided include: ​ Client advocacy Individual and family counseling Disease education Medical referrals Trait follow up Annual psychosocial assessment and follow up Navigating insurance Assistance finding primary care and specialty physicians Assistance with basic needs Return to top of page For assistance with the above matters, please contact your nearest office below or email : info@scdaami.org Metro Detroit (313) 864-4406 Jackson/Lansing Area: (517) 394-7397 Saginaw/Flint Area: (989) 755-7752 Benton Harbor/ Kalamazoo Area: (269) 927-5629 Grand Rapids/ Muskegon Area: (616) 243-1868 Career Development The Career Development Program assists individuals with a sickle cell disease ages 14 and above to plan and achieve a career goal leading to satisfactory employment. We offer clients a six-stage career development course to aid in gainful and satisfactory employment. Other services provided include: Vocational Counseling and Testing Information about Financial Aid College Planning Resume Preparation and Interviewing Skills Assistance with Summer Employment for ages 14-21 Job Replacement and Retention Assistance Summer Reading Enrichment Program for grades K-12 Referral Services Alternative work programs Disability and accommodations assistance for school (including college) and work Resources currently utilized are Michigan Department of Labor and Economic Growth Michigan Rehabilitation Service (MRS) and the Social Security Administration’s Work Incentive program. Return to top of page For career assistance, contact Jerica McBride at 313-864-4406, ext. 109, or email her at mcbridej@scdaami.org. Community Education Our free experience provides a unique opportunity for our children to gain self-confidence and independence. It also helps parents overcome issues of over protectiveness which may occur when raising a child with a chronic illness. Children ages 8-17 are able to participate in activities including swimming, boating, horseback riding, crafts, archery and much more. summer camp ​ The Public Education Program is designed to increase awareness and educate the general public. Our goal is to provide meaningful and accurate information regarding all sickle cell conditions. The following services are available: Group Presentations Media Presentations Health Fair Displays Printed Material Workshops and training sessions ​ Return to top of page Keep up with our latest events . For additional information on services, email info@scdaami.org or call 313-864-4406 and walk-ins are welcome for blood tests to diagnose sickle cell trait and disease as well as genetic counseling. SCDAA-MI’s services are available throughout Michigan and span lifetime needs. Appointments are available ​ For more information: Call 313-864-4406 Email info@scdaami.org Contact our nearest satellite office: Jackson/Lansing Area: (517) 394-7397 Saginaw/Flint Area: (989) 755-7752 Benton Harbor/Kalamazoo Area: (269) 927-5629 Grand Rapids/Muskegon Area: (616) 243-1868 ​

community resources Connect to services that can help meet your basic and emergency needs Out-state resources coming soon!​ for an additional list of COVID-19 specific resources. Click here Suicide Prevention Mental Health Clothing Internet & Device Access Housing/Shelter Food All Services ALL SERVICES Locate various community resources by zip code https://navigator.familydoctor.org/ ​ ​ United Way 2-1-1 United Way for Southeast Michigan's 2-1-1 service provides referrals to programs in Wayne, Oakland, Macomb, Washtenaw, Monroe and Lapeer counties, connecting users with more than 30,000 service providers throughout the state that can help with food, housing, utilities, medical bills, and more. You can get information online at , or by dialing 2-1-1 (or ). United Way 2-1-1 1-800-552-1183 ​ FOOD ​ Locate food banks by zip code https://www.feedingamerica.org/find-your-local-foodbank Detroit-area food banks and kitchens 2131 Beaufait St., Detroit, MI 48207, (866) 453-2637 Gleaners Food Bank of Southeastern Michigan - lways check location sites and bring a picture ID Forgotten Harvest - A Yad Ezra Lighthouse Food Pantry City of Detroit Food Pickup - Capuchin Soup Kitchen (313) 579-2700 Redford Interfaith Relief - ( 313) 387.9802 - CARES in Farmington Hills (248) 474-8231 (Call to make an appointment for the food pantry.) ​ HOUSING/SHELTER Wayne County (housing, food, basic necessities such as showers, laundry, etc) Covenant House (Housing, Food assistance) ​ Detroit Phoenix Center Wayne Metro Community Action Agency Detroit Housing Commission ​Detroit Housing (branches listed by zip code) Wayne County Department of Health and Human Services ​Wayne , ( United Community Housing Coalition 313) 963-3310 1726 Howard St., Detroit, MI 48216, Health Emergency Lifeline Program, (313) 832-3300 Oakland County , 1228 S. Washington, Royal Oak, MI 48067, ( The Sanctuary – Common Ground 248) 547-2260 ​ ​ INTERNET & DEVICE ACCESS FCC program for eligible households to provide low cost telephone and broadband internet service (Michigan is a participating state) Some internet providers are offering free services to low-income families and households with students. Free Comcast Xfinity internet: Comcast Xfinity is currently offering its Internet Essentials program free for two months to new customers. The internet provider is also automatically increasing speeds for all Internet Essentials customers. Comcast Xfinity Wi-Fi hotspots are also open and free to use by anyone. Free internet for students from Charter Spectrum: Households with students K–12 or university students can sign up for a new Charter Spectrum internet account to get the first two months of internet with speeds up to 100 Mbps for free. Installation fees will be waived for those who qualify for the offer. Call to enroll. Spectrum Wi-Fi hotspots are also currently open and free to use. 1-844-488-8395 : Free internet for students from Altice Altice internet providers Suddenlink and Optimum are offering 60 days of free internet service for households with K–12 or college students. Internet speeds are up to 30 Mbps if you do not already have access to a home internet plan. To sign up, call if you live in an area with Optimum internet service, or call if you live in an area with Suddenlink internet service. 1-866-200-9522 1-888-633-0030 : AT&T https://www.att.com/help/covid-19/ CLOTHING ​ ● , Detroit: ( Salvation Army 313) 897-2914 ● - ( ● - ( ● - ( ● - ( Detroit Rescue Mission Ministries 313) 366-3409 Christ Church of Redford 313) 534-3436 Redford Interfaith Relief 313) 387-9802 CARES in Farmington Hills 248) 882-7800 ​ ​ ​ MENTAL HEALTH ​ Michigan Mental Health Networker National Alliance on Mental Illness (NAMI) ​ ​ ​ SUICIDE PREVENTION - (English) National Suicide Prevention Lifeline 1 (800) SUICIDE (Spanish) 1 (877) SUICIDA ​ ​ Back to the top Back to the top Back to the top SCDAA-MI’s services are available throughout Michigan and span lifetime needs. ​ For more information: Call 313-864-4406 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) 372-025 ​

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 SCDAA-MI “Shines the Light” for World Sickle Cell Day, June 19 June 12, 2020: February 26, 2020: SCDAA-MI Announces SAFE(R) Initiative to Improve Emergency Sickle Cell Care Dr. Wanda Shurney Responds to FDA's Approval of Adakveo November 20, 2019: 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 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 WHAT: 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. WHO: 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. WHY: Saturday, Sept. 19 WHEN: The virtual Sickle Cell Matters online program premiers at 10 a.m. EST on SCDAA-MI’s YouTube channel ( ) and Facebook Live @SickleCellMichigan. Interested hospital and physician partners can learn more and partner with SAFER at WHERE: https://www.youtube.com/channel/UChFCW2PqipdZiRKcb16Z5Gw www.scdaami.org/sicklecell911. Stefanie Worth | email: MEDIA CONTACT: worths@scdaami.org ABOUT SCDAA-MI: 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 or call 313-864-4406. Our Mission: www.scdaami.org ### 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 “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. 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. ​ “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. T o 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. 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. 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 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 , provides medical professionals with quick access to an online portal at 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. SAFE(R) SCDAAMI.org/SickleCell911 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 . In addition to guidelines, recommendations and best practices, the medical professional-focused pages also provide educational resources about the disease and its potential complications. SCDAAMI.org/SickleCell911 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 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. the FDA gave its approval for Adakveo (crizanlizumab-tmca) ​ “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

Career Opportunities at SCDAA-MI The Sickle Cell Disease Association of America – Michigan Chapter (SCDAA-MI), offers education, assistance, and advocacy to individuals living with and families affected by sickle cell disease. SCDAAMI provides counseling, support groups, referrals for financial and medical help, and connects students and job seekers with school, college and employment assistance, in addition to raising public awareness and sending children to summer camp each year. The agency also coordinates newborn screening for babies born in Michigan and conducts on-site blood testing to diagnose sickle cell trait and disease. All SCDAA-MI employees play a vital role in achieving our mission to improve the quality of life for people with sickle cell. ​ Patient Advocate/Community Health Worker - Detroit Office - Deadline Wednesday, October 14, 2020 ​ The Sickle Cell Disease Association of America - Michigan Chapter is an Equal Opportunity Employer. jobs/ careers

contact us Volunteer Photo Release Client Feedback ​ WE'RE NOW WORKING REMOTELY TO HELP PROTECT OUR COMMUNITY. PLEASE CALL FOR ASSISTANCE. THANK YOU! If you need assistance, have questions, or would like to partner in SCDAA-MI's work,our staff will be happy to help. Appointments and walk-ins are welcome for sickle cell disease and trait testing. We also offer non-directed genetic counseling. Contact Us First Name Last Name Email Phone Type your message here... Thanks for reaching out! Submit Email: info@scdaami.org 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 ​ Our address: 18516 James Couzens Fwy Detroit, MI 48235 ​ ​ Hours of Operation: 9 a.m. - 5 p.m. Mondays - Wednesdays, and Fridays 9 a.m. - 7 p.m. Thursdays ​ You can also 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 Photo/Video Release The Sickle Cell Disease Association of America - Michigan Chapter, Inc. frequently takes photos and video at its events and activities and ask that participants sign a waiver allowing the use of their likeness in publications, our web site, social media sites, and other public forms. You will only need to complete this form once. If at any time you wish to revoke use of your likeness in the future, you must do so in writing. Children under 18 require consent from a parent or guardian. Please contact us with questions. Thank you! ​ Download release form . Please complete and return to here info@scdaami.org

WAYS TO GIVE Donate online here Host a Facebook fundraiser: Birthdays, anniversaries, holidays, Mondays - any day is a good day to around our cause. rally your friends Facebook Amazon: By selecting the Sickle Cell Disease Association of America - Michigan Chapter as your charitable recipient, Amazon will donate .5% of every eligible purchase to SCDAA-MI. All you have to do is shop. Amazon handles the rest. Give while you shop, through Amazon Smile. Text to give: $5 will be added to your phone bill. (Message and data rates apply.) Text FIVE to 52000. Kroger: Enter SICKLE CELL DISEASE ASSOICATION OF AMERICA MI CHPT or 91452. Individual purchases will begin counting towards your organization within 7-10 days of registering the individual rewards cards on-line. Every time you shop for groceries and swipe your card, SCDAA-MI automatically starts earning a rebate. Kroger limits your quarterly household contribution to $300. Register your Kroger Rewards Card online at Kroger.com/communityrewards (Sorry, but that is how it's spelled on that site!) By check or money order, mail to: SCDAAMI, 18516 James Couzens Fwy, Detroit MI 48235 CORPORATE PARTNERSHIPS Donating to SCDAA-MI benefits the thousands of individuals who depend on our education, advocacy and awareness efforts. It also benefits your corporate responsibility goals. We’re currently recruiting sponsors at the Charles H. Wright Museum of African History from 9 a.m. - noon. for our on Sept. 19 2020 Sickle Cell Matters Virtual Walk ​ , Co-host of "Sunday Morning Inspiration" on MIX 92.3 FM and Professor of English Literature at the University of Michigan-Dearborn. Our Honorary Chair is Deborah Smith Pollard , Pediatric Oncologist/Hematologist, Comprehensive Sickle Cell Clinic at Children’s Hospital of Michigan, and known to many as "Dr. Z". Our Honorary Co-Chair for the event is Dr. Ahmar Zaidi Many of our 2020 Sickle Cell Matters Virtual Walk sponsorships provide year-round engagement opportunities for companies and employees. for more information. Click here ​ We're also looking for community partners to serve on our Sickle Cell Matters Walk Host Committee. for information. Click here ​ For more information, contact Stefanie Worth, Director of Operations & Outreach at 313-864.4406, ext. 111. ​ WHY DONATE? With nearly 3,000 people in Michigan living with sickle cell and approximately 1,600 of those people living in the metro Detroit area, individuals, their families, and the community at large. our programs and services impact Sickle cell affects three times as many people as cystic fibrosis in the U.S., yet receives approximately one-third the funding. Your support helps provide year-round education for physicians, patients and caregivers; appropriate medical care, trait testing campaigns, self-sustainability work, and more. Modern medicine has the capacity to help people with sickle cell thrive. Individuals living with the condition want improved quality of life and it’s our mission to make that happen. ways 2give QUICK ACCESS MENU DONATE FACEBOOK AMAZON KROGER SPONSORSHIPS QUESTIONS?

get involved Together our tenacity and commitment have greatly brightened the future for sickle cell: comprehensive pediatric care has become a medical standard throughout most of the U.S., allowing patients to pursue college educations, take on dream careers, marry and welcome extended families. At the same time, many challenges remain: awareness among the adult medical community lags behind pediatric expertise at the expense of patient health. Sickle cell still bears the weight of stigma attached to systemic discrimination. While research is on the uptick, treatments are limited. There is no universal cure. ​ Your support matters in our quest for consciousness, equity, and a cure. Please join us today. DONATE The Sickle Cell Disease Association of America - Michigan Chapter thrives on the support of dedicated patients/clients, staff, volunteers, , and community partners funders, sponsors, donors . We've remained committed to our mission of improving the lives of people living with sickle cell disease for 48 years. . Give today ADVOCATE This is an exciting time for the sickle cell community as new treatments have recently become available and interest in research to find a cure has spiked. Yet, insurance hindrances, misplaced opioid restrictions, and ongoing systemic discrimination continue to block access to proper care and threaten the lives of patients. Raise your voice for sickle cell. VOLUNTEER There are always volunteer opportunities at SCDAA-MI for assistance at our annual Sickle Cell Matters Walk, encouraging an increased social media presence, office help, committees, and more. ​ Complete our to let us know you're interested, and we'll contact you when opportunities arise. volunteer form

Your gift to the Sickle Cell Disease Association of America - Michigan Chapter helps ensure that counseling, educational, medical, and basic needs services are addressed for people with sickle cell. By supporting our work, you help improve lives. Thank you for your support! donation page Donate Now How much are you donating? $15 $25 $50 $75 $100 Other First Name Last Name I'd like this donation to remain anonymous Company Street Address City, STATE Zip Email Address Donating in honor of: DONATE Thank you for helping us improve the lives of people with sickle cell!