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This document will be updated as more information becomes available.
May 27, 2020 – COVID-19, the coronavirus disease of 2019 – also known as Coronavirus-2 (also called SARS-CoV-2) – and the illness it causes is on everybody’s mind. If you or your family member has sickle cell disease (SCD), you may be worried about what this new disease may mean to you.
The more you learn about COVID-19, the better you can understand what to look for, how to protect yourself or your loved one, and what to do IF you feel sick.
SCDAA and its Medical and Research Advisory Committee want to help you understand COVID-19, how it may affect a person with SCD, and what you can do to help.
The potential health risk posed by COVID-19 for people with SCD is a real concern. The knowledge we have about how COVID-19 will affect those living with SCD is evolving constantly. In light of this, the risks to our community may change in the coming days, weeks and months. It is critical that you stay regularly informed.
Members of MARAC have been speaking daily with other experts around the world to get new information that may be useful to you.
What You Need to Know About the Coronavirus (COVID-19)
The coronavirus pandemic is real; it is not just a scare tactic, and it is not fake news. People who have SCD may have a more difficult time IF they get COVID-19; it is better to protect yourself from getting the infection.
Frequently Asked Questions
What can I do to make sure that I do not get COVID-19?
Stay home as much as possible.
• Do not leave home unless absolutely necessary.
• If you MUST go out, remember to do these when you get to where you are going and as soon as you return home:
o Wash your hands with soap and water for 20 seconds (that is, don’t stop until you finish singing the “Alphabet song” once or “Happy Birthday” twice) after you touch anyone or anything outside, as soon as you can; or,
o Use hand sanitizer with at least 60% alcohol to rub your hands.
What to do if you feel sick:
• CALL your doctor, nurse, healthcare team, or hospital immediately.
• Do not just rush to the hospital. CALL first, if possible.
• Tell them how you feel.
• Remember to tell them you have SCD.
• Please consider going to the hospital if you continue to feel sick and are unable to reach anyone for advice.
• Be careful when you meet other people. Try to protect yourself and them, as well.
o Do not get too close to anyone, especially a person who is coughing, or sneezing.
o Stay farther than you can touch each other by stretching out your arm.
o Greet one another by waving from a distance (no hugs or handshakes).
Reduce the spread of germs in your house or place of work:
• Use disinfectants: Use a disinfectant to clean surfaces (like counter tops, tables, and arms of chairs) or things that were touched by others because a strong disinfectant can kill the virus; and,
• Keep surfaces clean: Clean surfaces frequently with a disinfectant if you or other people use or touch the same surfaces or things often. The virus can live on surfaces for many days. Surfaces include phones, remote controls, counters, tabletops, doorknobs, bathroom fixtures, toilets, keyboards, tablets, and bedside tables.
• Do not share items, if possible:
o Avoid sharing personal household items such as dishes, drinking glasses, cups, eating utensils, towels, or bedding with other people in your home.
• Cover your mouth and nose: Remember to cover your mouth and nose with a tissue when you cough or sneeze, then throw away tissue in trash, and immediately wash your hands.
o If you do not have tissue, cough or sneeze into your clothes. Do not cough or sneeze into your bare hands or skin.
• Protect parts of your face: Do not touch your eyes, nose, mouth, or face; the virus can get into your body through those body parts.
• Stay away from anyone in your home that is sick: Those positive for COVID-19 or think they may have it should follow the advice at the CDC website (https://www.cdc.gov/coronavirus/2019-ncov/if-you-are-sick/index.html)
• Masks: They are not enough to protect you completely from the COVID-19 infection:
o The CDC recommends you wear a mask when out to protect others and yourself.
o Remember, wearing a mask does not protect you enough and you should continue to do all the other things to prevent the spread of germs.
o When you are using a mask please follow these guidelines:
They can be reused but should be replaced when visibly soiled or damaged.
Cloth masks should be washed and dried regularly.
They should be stored in a clean paper bag between uses.
When storing, fold the mask so that the inner surface is held against itself to reduce contact with the outer surface.
How can I get myself and my family prepared?
Use this checklist if it helps you to prepare.
____ Refills: Please check to see if you have refilled all your medications so that you do not run out.
____ Extra medications: Contact your doctor, nurse or hospital to ask about getting extra medications to have on hand in case there is an outbreak of COVID-19 in your community and you need to stay home for a long time. Try and get a 90-day supply. Some pharmacies are offering home delivery.
____ Over the counter medicines and supplies: Be sure you have over-the-counter medicines and medical supplies (e.g. tissues).
____ Thermometer: Make sure you have a thermometer to take your temperature and clean it after each use.
____ Take your prescribed medications for SCD: hydroxyurea, glutamine, penicillin, folic acid, Voxelotor, Crizanlizumab, Deferasirox, and any others. These medications will help keep your body in the best possible condition to fight off infection.
____ Pain medications: Make sure you have enough of your pain medications and use them when you have regular sickle cell pain.
In addition, plan for any of the following that apply:
____ Household items and groceries: Have enough household items and groceries on hand so that you will be prepared to stay at home for a period of time that could be many weeks.
____ Ways to stay in touch: Stay in touch with others by phone, text or email.
You may need to ask for help from friends, family, neighbors, etc. if you become ill.
____ Ways to keep children occupied: Keep children occupied with home school activities, arts and crafts.
____ Caretakers for loved ones and pets: Think ahead about who will watch your children, other loved ones, or pets if you become too sick.
____ Working from home: Find out if working from home is an option. You may need to ask your physician for a letter for your employer to support this option. Discuss with your doctor ways to stay safe at your workplace if you are unable to work from home.
How do I know if I have COVID-19?
The only way to know for sure that you have coronavirus is to get tested. However, it is not easy to get tested yet as many places have limited access to testing kits. We hope that this will change soon. In low resource countries, there are even fewer places to be tested. Your sample may need to be sent to a lab far from where you are. Your health care team will arrange for your test to be done.
Most people who have COVID-19 have the following symptoms:
• Fever
• Cough
• Shortness of breath
NOTE: These together can be a sign of Acute Chest Syndrome of SCD, as well as
the serious pneumonia seen in COVID-19. This would be the major concern of COVID-19 in a person with SCD.
**Some people who have COVID-19 have diarrhea and/or a change or loss of smell or taste.
If you have any of the above symptoms:
Call your doctor, nurse or hospital right away to discuss what you should do next.
In addition, you or someone should call for emergency help, (911 in the US), if you have:
• Difficulty breathing
• Pain or pressure in the chest different from your usual sickle cell pain
• New confusion or inability to wake up easily
• Darker lips or face than usual
What should I do if I have a fever?
• Call your sickle cell doctor, primary care physician, nurse, or hospital to report your illness and arrange to be checked.
• Do NOT immediately rush to the emergency department.
• It is not a good idea to stay at home to “wait and see” and just take medications to force down your high body temperature.
• Be aware that lots of different things can cause fever, such as infections and sickle cell tissue damage. Fever does not mean you have coronavirus!
• If you need to go out or to the emergency room or clinic, make sure to wear a mask so you do not infect others or catch an infection.
How do I get or make a mask?
• There are many ways to make a mask at home and this may be your best option since there are shortages of masks in most communities.
• The CDC has guides on ways to make masks here: https://www.cdc.gov/coronavirus/2019-ncov/prevent-getting-sick/diy-cloth-face-coverings.html
• The CDC wants you to make sure of the following when using a mask:
o Mask should:
Fit snugly but comfortably against the side of the face.
Be secured with ties or ear loops.
Include multiple layers of fabric.
Allow for breathing without restriction.
Be able to be laundered and machine dried without damage or change to shape.
What are some good ways to stay as healthy as possible?
• Take your medications as prescribed.
• Drink plenty of fluids, as usual.
• Try to rest and not do too much physical activity.
Should I continue getting my chronic transfusions?
• Regular transfusions are given often to prevent serious complications like stroke.
• Continue your regular transfusions unless your healthcare team tells you to stop.
• Blood supply may be short so your doctor may need to change the transfusion plan.
• Blood transfusion is still safe; COVID-19 has not been passed through transfusion.
• Talk to your healthcare team if you have concerns about blood and COVID-19.
What if I don’t have a doctor?
• Many hospitals are setting up ways for patients to have a visit with a healthcare provider over the telephone. These are called “e-visits” or “telemedicine”.
• Many communities have hotlines available for people to call for help and advice.
• If you are unsure, you can always call your local SCDAA chapter for advice on resources in your community.
Should I go to the emergency department if I am ill?
• If you have a doctor, nurse, or health care team, it is recommended that you call for advice, if you can, before going to the emergency department.
• Emergency departments are very full of sick people right now and it is likely that there will be long waits.
• Also, it is very likely that people with COVID-19 infection will be there.
• If you have no other option, then going to the emergency department may be the only option.
• Try and call ahead to see if they have recommendations beforehand.
I think I am having sickle cell pain. What should I do?
• If your pain feels different or is not responding to your usual home treatment, or you also have fever, cough or trouble breathing, call your healthcare team for advice and arrange to be checked.
• Otherwise, try to manage your sickle cell pain at home in order to avoid a busy emergency department or medical center that may have people with COVID-19 seeking care.
Is it safe to travel?
• It is best to avoid all travel at this time unless there is some emergency.
• If you must travel, talk to your healthcare team or visit the website of the Centers for Disease Control and Prevention (CDC) for travel guidance (www.cdc.gov/covid19) to stay up to date.
What if I cannot work from home?
• If you are unable to work from home, ask your employer to implement the CDC recommendations:
o social distancing (keeping everyone at least 6 feet apart);
o all employees wearing some type of mask or face covering; and,
o increased access to hand washing/hand sanitizer.
• Help your employer understand that it will benefit the company if everyone stays safe.
• Provide your employer or human resources department a copy of this advisory if you think it may help.
• Give your doctor a printed copy of a sample letter for your employer. It can be found on the SCDAA website here: www.sicklecelldisease.org/template-letters-for-caregivers-2
What do I do if I am on a research study?
• It is important that you get in touch with your research team right away to check if there are any changes. And, thank you for being on a clinical trial.
I feel fine so far. Is there anything I can do to help others?
• If you know others living with SCD, contact them by phone, text or social media. Make sure they are doing “ok” and see if they need help or reassurance. It is a stressful time for a lot of us. If you know people who are willing to donate blood, encourage them.
Will there be a shortage of blood soon?
• This is very possible, but you can help! If there are people in your family or community that are willing to donate blood, please encourage them to call the local blood bank right away. During times like these, there can be a lot of blood shortages and we know that many people with SCD (as well as other conditions) need blood. See if you can get some people to donate. People with sickle cell trait are still able to donate so please encourage them to do so.
How do I stay informed?
(1) Go to www.OneSCDVoice.com, SCDAA’s online information superhighway where we will post updates regularly that are specific to SCD. It is free to join.
(2) Go to the website of your local SCDAA organization. You can find the one closest to you at www.sicklecelldisease.org. There may be some useful information that applies directly to your community.
(3) Go to the CDC’s website (www.cdc.gov/covid19) for regular updates on the COVID-19. Information is updated routinely and will keep you abreast of the latest guidelines and recommendations. There is information on how you can start to prepare in your homes and community.
(4) Download template letters for caregivers. www.sicklecelldisease.org/templateletters- for-caregivers-2
For More Information, contact info@sicklecelldisease.org
SCDAA Medical and Research Advisory Committee Members
Miguel R Abboud, MD
Professor of Pediatrics and Pediatric Hematology-Oncology
Chairman
Department of Pediatrics and Adolescent Medicine
American University of Beirut, Lebanon
Biree Andemariam, MD
Chair, Medical and Research Advisory Committee, Sickle Cell Disease Association of America
Chief Medical Officer, Sickle Cell Disease Association of America
Director, New England Sickle Cell Institute
Associate Professor of Medicine
University of Connecticut Health
Farmington, CT 06030
Shawn Bediako, PhD
Associate Professor
Department of Psychology
University of Maryland Baltimore County
Baltimore, Maryland
Andrew Campbell, MD
Center for Cancer and Blood Disorders
Children’s National Health System
Associate Professor of Pediatrics
George Washington University School of Medicine and Health Sciences
Washington, DC
Raffaella Colombatti, MD, PhD
Physician Azienda Ospedaliera-Università di Padova
Department of Womens’ and Child Health
Clinic of Pediatric Hematology Oncology
Via Giustiniani 3
35129 Padova Italy
Lori Crosby, PsyD
Co-Director, Innovations in Community Research, Division of Behavioral Medicine & Clinical Psychology
Co-Director, CCTST, Community Engagement Core
Psychologist, Research, Behavioral Medicine & Clinical Psychologist
Cincinnati Children’s
Professor, UC Department of Pediatrics
Cincinnati, OH
Deepika Darbari, MD
Center for Cancer and Blood Disorders
Children’s National Health System
Associate Professor of Pediatrics
George Washington University School of Medicine and Health Sciences
Washington, DC
Payal Desai, MD
Associate Professor
Director of Sickle Cell Research
The Ohio State University
James Care at Ohio State East Hospital
181 Taylor Avenue, Columbus, Ohio 43203
James Eckman, MD
Professor Emeritus, Hematology & Medical Oncology
Emory University School of Medicine
Department of Hematology and Medical Oncology
49 Jesse Hill Jr. Drive SE
Atlanta, GA 30303
Mark Gladwin, MD
Professor and Chair
Department of Medicine
Founder, Pittsburgh Heart, Lung, and Blood Vascular Medicine Institute
University of Pittsburgh
E1240 BST
200 Lothrop Street
Pittsburgh, PA 15261
Jo Howard, MB Bchir, MRCP, FRCPath
Head of Red Cell/Sickle Cell Service
Guy’s and St Thomas’
NHS Foundation Trust
Great Maze Pond
London, United Kingdom
Lewis Hsu, MD, PhD
Co-Chair, Medical and Research Advisory Committee, Sickle Cell Disease Association of America
Vice Chief Medical Officer, Sickle Cell Disease Association of America
Director of Pediatric Sickle Cell
Professor of Pediatric Hematology-Oncology
University of Illinois at Chicago
Chicago, Illinois
Dr Baba Inusa
Honorary Reader in Paediatric Haematology, King’s College London
Lead Consultant Sickle Cell and Thalassaemia Service
Evelina London Children’s Hospital
St Thomas’ Hospital
Westminster Bridge Road, London SE1 7EH
Elizabeth Klings, MD
Associate Professor of Medicine, Boston University School of Medicine
Program Director, Center of Excellence in Sickle Cell Disease
Director, Pulmonary Hypertension Inpatient and Education Program
Medical Director, Pulmonary Rehabilitation Program, Boston Medical Center
72 East Concord Street, R-304
Boston, MA 02118
Lakshmanan Krishnamurti, MD
Professor of Pediatrics, Director of BMT
Joseph Kuechenmeister Aflac Field Force Chair
Aflac Cancer and Blood Disorders Center
Children’s Healthcare of Atlanta/Emory University
Atlanta, GA
Sophie Lanzkron, MD, MHS
Director, Sickle Cell Center for Adults
The Johns Hopkins Hospital
1800 Orleans St
Baltimore, MD 21287
Caterina P. Minniti, MD
Director, Sickle Cell Center
Montefiore Health System
Professor of Medicine and Pediatrics
Albert Einstein College of Medicine
Bronx, NY
Genice T. Nelson, DNP, APRN, ANP-BC
Program Director
New England Sickle Cell Institute & Connecticut Bleeding Disorders Programs
UConn Health
Farmington, CT 06030
Board Member, Sickle Cell Disease Association of America
Isaac Odame, MB ChB, MRCP(UK), FRCPath, FRCPCH, FRCPC
Professor, Department of Paediatrics
University of Toronto
The Hospital for Sick Children
Division of Haematology/Oncology
555 University Avenue
Toronto, Ontario M5G 1X8
Gwendolyn Poles, D.O.
Honorary Medical Staff Member
Former Medical Director, Kline Health Center
Faculty, Internal Medicine Program
UPMC Pinnacle
Harrisburg, PA
Board Member, Sickle Cell Disease Association of America
John Roberts, MD
Yale Adult Sickle Cell Program
Smilow Cancer Hospital at Yale New Haven
35 Park Street, Ste 7th floor, Multispecialty
New Haven, CT 06511
Wally Smith, MD
Professor
Scientific Director, VCU Center on Health Disparities
Director, VCU Adult Sickle Cell Program
Department of Internal Medicine
Division of General Internal Medicine
West Hospital W10W-403
P.O. Box 980306
Richmond, VA 23298
Crawford J Strunk MD
Pediatric Hematology/Oncology
Pediatric Hematology/Oncology Program at Toledo Children’s Hospital
2142 N. Cove Blvd.
Toledo, Ohio 43606
Immacolata Tartaglione, MD PhD
Department of Woman, Child and General and Specialist Surgery
Università degli Studi della Campania “Luigi Vanvitelli”
Naples, Italy
Marsha Treadwell, PhD
Director, Northern California, Network of Care for Sickle Cell Disease
Co-Principal Investigator and Regional Director, Pacific Sickle Cell Regional Collaborative
Director, Hematology Behavioral Services
Comprehensive Center for Sickle Cell Disease
Main Hospital
747 52nd Street
Oakland, CA 94609
Winfred C. Wang, MD
Member, Department of Hematology
St. Jude Children’s Research Hospital
262 Danny Thomas Place, MS 800
Memphis, TN 38105
Russell E. Ware, MD, PhD
Director, Division of Hematology
Institute Co-Director, Cancer and Blood Diseases Institute
Director, Global Health Center
Marjory J. Johnson Chair of Hematology Translational Research
Cincinnati Children’s
Professor, UC Department of Pediatrics
Cincinnati, OH
Julie Kanter Washko, MD
Associate Professor
Division of Hematology Oncology
University of Alabama at Birmingham
1720 2nd Avenue South, NP 2540
Birmingham, AL 35294-3300
Kim Smith-Whitley, MD
Professor of Pediatrics
Director Comprehensive Sickle Cell Center
Division of Hematology
11th Floor Colket Building
The Children’s Hospital of Philadelphia
34th & Civic Center Blvd.
Philadelphia, PA 19104
Board Member, Sickle Cell Disease Association of America
Wanda Whitten-Shurney, MD
CEO & Medical Director
Sickle Cell Disease Association, Michigan Chapter Inc.
Board Member, Sickle Cell Disease Association of America
Detroit, MI
Ahmar U. Zaidi, MD
Assistant Professor of Pediatrics
Comprehensive Sickle Cell Center, Children’s Hospital of Michigan, Wayne State University/Central Michigan University School of Medicine
Detroit, MD
