This content has been prepared in consultation with AAMDSIF Medical Advisory Board Chair Mikkael Sekeres MD, MS of Cleveland Clinic and Co-Chair Olatoyosi Odenike MD of the University of Chicago. (Updated June 22, 2020)
While some states have relaxed policies on business openings and social distancing guidelines, COVID-19 infection rates and hospitalizations are rising in many states. 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:
- 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.
- Clean frequently touched objects and surfaces with household cleaning spray or antibacterial wipes (for example: tables, doorknobs, light switches, handles, toilets, faucets, laptops, keyboards and cell phones).
- Avoid travel as much as possible.
- Avoid crowds and large gatherings, especially in poorly ventilated spaces.
- To the extent possible, avoid contact with high-touch surfaces in public places, such as elevator buttons, door handles, handrails, touchscreens, etc. Flat surfaces, in particular, are more likely to have viruses or bacteria.
- 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.
- 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:
NEW 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
- NEW June 24, 2020 Focus on COVID-19: Impact on Clinical Trials
AAMDSIF PNH Patient Emergency Financial Assistance Fund
Up to $350 in financial assistance for diagnosed PNH patients who are U.S. citizens.
PAN Foundation: COVID-19 Treatment and Prevention Fund
$300 in financial assistance for Medicare patients who have been diagnosed with COVID-19 and/or directed to self-quarantine by a health care provider or governmental entity.
Healthwell Foundation: COVID-19 Ancillary Costs Fund
$250 in co-pay assistance for eligible patients for treatment related to COVID-19.
Leukemia and Lymphoma Society: COVID-19 Patient Financial Aid Program
$250 for eligible patients for non-medical expenses including transportation, housing and groceries.
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.
Team Rubicon Disaster Response: Emergency Food Assistance
Financial assistance for groceries, grocery delivery and medically-required meals. Applications are accepted online.
(Due to the overwhelming response of emergency food pickup and delivery requests, the EFA program is not accepting new applicatiosn at this time, however they are fulfilling already submitted and approved requests.)
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.
Webinar summaries and other relevant documents.