This content has been prepared in consultation with AAMDSIF Medical Advisory Board Chair Mikkael Sekeres MD, MS of Sylvester Comprehensive Cancer Center, University of Miami and Co-Chair Olatoyosi Odenike MD of the University of Chicago. (January 2021)
While some regions have relaxed policies on business openings and social distancing guidelines, COVID-19 infection rates and hospitalizations are still a concern. Patients with bone marrow failure conditions are still at high risk of serious consequences if infected with COVID-19. We urge you to continue to practice social distancing, frequent hand washing and sanitizing, wearing masks around others, and encouraging others to wear masks around you.
As a person with a bone marrow failure condition, such as myelodysplastic syndromes, aplastic anemia, PNH, etc., you are already taking precautions to protect your compromised immune system. With the emergence of COVID-19, you and your caregivers should be especially vigilant to continue this preventive behavior:
- Always wear a mask that covers your mouth and nose when leaving the house. If you must go inside buildings other than your home, N-95 masks (or their equivalents) are the safest for you and others, followed by surgical masks, then cloth masks. Masks with vents and “gaiters” are not recommended.
- Refrain from touching your eyes, nose, or mouth with unwashed hands.
- Wash your hands often for at least 20 seconds with soap and water or using a hand sanitizer that contains at least 60% alcohol.
- Cover your mouth and nose with a tissue when coughing or sneezing. Discard the tissue and clean your hands. If a tissue is not available, cough or sneeze into your elbow.
- Avoid shaking hands with others.
- Avoid close contact with people who are sick, and discourage people from visiting your home if they have any symptoms of illness.
- Avoid travel as much as possible.
- Avoid crowds and large gatherings, especially in poorly ventilated spaces.
- Contact your physician with any questions or concerns specific to your condition.
- Know where to go for COVID-19 testing, as some local clinics may not have the resources or facility to do the COVID-19 testing or even see you.
- If you have a fever, acetaminophen is preferred over ibuprofen for reducing a fever.
Patients with a bone marrow failure condition are encouraged to discuss getting vaccinated against the coronavirus as soon as practical. There are a number of vaccines approved for use and more will be available in the coming months. Two of the available vaccines are mRNA vaccines which do not contain live virus and should be safe for most patients with a bone marrow failure condition. Please discuss this important topic with your treating hematologist/oncologist.
As other vaccines become available, it is not recommended to get vaccinated with a live virus as this could cause problems for patients. Please consult your treating hematologist/oncologist about vaccinations and if you are pre or post transplant, it is critically important to discuss this with your transplant team and to strictly adhere to their schedule for vaccinations.
Note: FDA guidance affirms that people who receive the COVID-19 vaccine or any product under emergency use (EUA) are not considered by the FDA to have received an investigational product and should not be excluded from clinical trials for that reason. Source: https://www.fda.gov/media/136238/download
UPDATE: June 15, 2021
A recent letter to the editor in the journal Blood by researchers from Johns Hopkins University and the University of Michigan Medical School states that patients with paroxysmal nocturnal hemoglobinuria (PNH) who receive vaccination for COVID-19 may be at risk of severe hemolysis. The researchers note that an increase in complement associated with the immune response to COVID-19 may be involved in organ damage and microthrombosis and that the presence of the SARS-CoV-2 spike protein may increase complement production. The mRNA vaccine enables a brief period of spike protein production. While reactions are typically mild, researchers theorize that PNH patients may have more serious consequences. We strongly advise PNH patients to consult their treating hematologist/oncologist to discuss getting the vaccine and if already vaccinated, to ensure regular monitoring for adverse side effects of the vaccine.
- Check with your doctor about keeping your regularly scheduled medical appointments – in general, do not skip your scheduled treatments. Medical centers are taking extra precautions to prevent the transmission of coronavirus. Many healthcare facilities are limiting visitors, so if a caregiver or family member is not allowed to accompany a patient to an appointment, they could listen in by phone to maintain communication with the provider.
- Since there may be blood shortages in some locations, it may be necessary to increase the time between transfusions if it can be tolerated.
- Wear a mask when leaving home - make sure it covers your nose and mouth completely.
- Continue to adhere to your neutropenic diet, if you follow one.
- Take steps to ensure you have a 3-month supply of your medication and possibly arrange mail order delivery of your meds.
- Be prepared to self-quarantine yourself for up to 14 days where necessary and consult your physician regarding ongoing blood transfusions and treatment.
For more information especially for those at higher risk for complications, visit the Centers for Disease Control page for People Who Need Extra Precautions: https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/immunocompromised.html
Follow the latest updates from trusted sources:
These FAQs from the American Society of Hematology are geared toward healthcare providers but patients may find them useful:
- Poster from the American Society of Hematology 2020 annual meeting: COVID-19 in Patients with Hematological Malignancies: High False Negative Rate with High Mortality https://ash.confex.com/ash/2020/webprogram/Paper138611.html
ASH-ASTCT COVID-19 and Vaccines: Frequently Asked Questions: https://www.hematology.org/covid-19/ash-astct-covid-19-and-vaccines
COVID-19 and Vaccines: https://www.hematology.org/covid-19/ash-astct-covid-19-and-vaccines
COVID-19 and Resuming Clinical Visits: https://www.hematology.org/covid-19/covid-19-and-resuming-clinical-visits
COVID-19 and Myeloproliferative Neoplasms: https://www.hematology.org/covid-19/covid-19-and-myeloproliferative-neoplasms
- March 13, 2020 Guidance for Bone Marrow Failure Disease Patients to Protect Against Coronavirus (COVID-19) Webinar
- March 20, 2020 COVID-19 Update - Focus on Aplastic Anemia and PNH Webinar
- March 21, 2020 COVID-19 Update - Focus on Pediatric Bone Marrow Failure Patients
- March 26, 2020 COVID-19 Update - Focus on Bone Marrow Failure and Infectious Disease
- March 31, 2020 COVID-19 Update - Focus on High Risk MDS and Secondary AML
- March 31, 2020 COVID-19 Update - Focus on Pre/Post Transplant
- April 14, 2020 COVID-19 Update - Focus on Emotional Health and Wellness
- April 25, 2020 COVID-19 Update (as part of the AAMDSIF Spring Virtual Conference)
- April 28, 2020 COVID-19 Update - Focus on Low Risk MDS
- May 13, 2020 COVID-19 Update - Focus on MDS/MPNs Overlap
- May 22, 2020 Focus on COVID-19: What We've Learned for Patient Care
- June 24, 2020 Focus on COVID-19: Impact on Clinical Trials
- December 3, 2020: AAMDSIF Global Update on COVID-19
- NEW March 18, 2021: COVID-19 and Vaccinations Update
HealthWell Foundation: COVID-19 Frontline Health Care Workers Behavioral Health:
Provides co-pay assistance for frontline healthcare workers for behavioral health services including prescriptions, counseling services, psychotherapy and transportation up to $6,000 per applicant.
HealthWell Foundation: COVID-19 Insurance Assistance Program Payment Assistance
Providers premium assistance for COBRA payments related to COVID-19 layoffs/unemployment, employee portion of insurance premium related to COVID-19 furlough.
Bristol Myers Squibb Patient Support Program
BMS has expanded and extended their Patient Support Program to eligible unemployed patients in the United States, Puerto Rico and the US Virgin Islands who have lost health insurance due to the COVID-19 pandemic access to branded BMS medicines for free. Patients who are employed but cannot afford their prescribed BMS branded medications may be eligible for other BMS support programs available through the toll-free number or the website listed above.
National Organization for Rare Diseases (NORD) COVID-19 Critical Relief Program
Financial assistance of up to $1,000 for eligible patients. Please call or email for more information.
Be The Match Patient Assistance Grant Program
One time financial assistance for medical and non-medical expenses of $500. There is no income limit on the program. Online application required.
Leukemia & Lymphoma Society Urgent Need Program (Pediatric and Young Adult Fund)
While the LLS COVID-19 Financial Assistance program is exhausted, they do offer a program to assist pediatric and young adult patients (up to age 39) who are in acute financial need. You can apply online using the link above or by calling (877) 557-2672 between 8:30am and 5:00pm Eastern, Monday - Friday.
211: Get Connected. Get Help.
U.S. based residents can dial 211 and receive guided assistance through a number of COVID-19 related assistance programs including food, housing costs, or other essential services. You can find your local 211 using the link above or simply dial 211.
IRS Economic Impact Payments
While the deadline has passed for the Economic Impact Payments, you may still be eligible for a payment under certain circumstances. Please consult the IRS website or your tax preparer who can answer any questions you may have.
Disabled American Veterans COVID Unemployment Relief
The DAV provides a $250 grant to service-connected veterans that have lost employment as a direct result of the coronavirus including self-employed contractors and small business owners. The application is a simple online form.
Webinar summaries and other relevant documents.
Our colleagues at the Association of Medical Professionals with Hearing Loss have compiled a list of COVID-19 Resources that are available and accessible to persons who experience deafness or hearing loss.