Guidance for Bone Marrow Failure Patients to Protect Against Coronavirus (COVID-19) [PROTOTYPE] | Aplastic Anemia & MDS International Foundation Return to top.

Guidance for Bone Marrow Failure Patients to Protect Against Coronavirus (COVID-19)

Introductory image: Graphic - COVID-19 Guidance for Patients

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 with additional review by Amy DeZern, MD, Johns Hopkins and Carlos De Castro, MD, Duke. (July 2021)

COVID-19 Concerns for Bone Marrow Failure Patients
Many U.S. states and other countries have relaxed or eliminated restrictions for business occupancy, social distancing guidelines and mask wearing.  Patients living with bone marrow failure diseases and their families and caregivers should continue to practice social distancing, frequently wash and sanitize hands,  wear masks around others, and encourage others to wear masks around you.

As a person with a bone marrow failure condition, such as myelodysplastic syndromes (MDS), aplastic anemia, paroxysmal nocturnal hemoglobinuria (PNH), etc., you are already taking precautions to protect your compromised immune system.  Patients with these diseases have been disproportionately affected by the COVID-19 pandemic with concerning mortality rates for patients who contract the virus and concerns about the efficacy of the available vaccines for bone marrow failure patients. 

Recommended Precautions
These recommendations are for all patients but you should consult with your treating hematologist/oncologist for guidance specific to your health conditions:

  • Continue to wear a mask that covers your mouth and nose when outside your home. This includes going to work, shopping and going to medical appointments.  While N-95 masks are best, surgical masks are a good second choice, followed by cloth masks. Masks with vents or “gaiters” are not recommended.
  • Avoid close contact with people who are sick, do not attend large gatherings (even outdoors) with unmasked and/or unvaccinated people, and avoid shaking hands or embracing others who are not vaccinated. 
  • Well-spaced, outdoor activities are safest and most can be enjoyed without a mask provided that your companions are vaccinated and/or from your immediate household.
  • Limit travel and travel companions and be sure to discuss best practices with your treating hematologist/oncologist before making plans. Your risk level may be higher or lower, depending on your specific situation.

International Travel Precautions
The CDC does not recommend that anyone travel until you are fully vaccinated, however we recognize that international travel poses additional risks due to the rapid spread of COVID-19 variants and the limited availability of vaccines in many countries.  If you must travel internationally, please follow all safety precautions and consult with  your treating hematologist/oncologist prior to scheduling  your travel.  Please be aware that you may be required to provide proof of vaccination and/or a negative COVID-19 test.

Returning to School/Work
Many people have worked or attended school remotely during the pandemic and are preparing to return to classrooms and workplaces.  While each patient will have different factors to consider, generally:

  • In remission + fully vaccinated:  Can return to school/work with normal precautions
  • In remission + not yet vaccinated:  Can return to school/work with mask + social distance. We recommend remote work/learning until vaccination.
  • Undergoing treatment + fully vaccinated:  Can return to school/work with mask + social distance.  We recommend remote work/learning until remission is achieved or a doctor-approved status.
  • Undergoing treatment + not yet vaccinated:  Remote work/learning only.

Please consult your treating hematologist/oncologist for advice regarding your specific health condition and life circumstances. 

Patients with a bone marrow failure condition who have not yet been vaccinated, are encouraged to discuss getting a vaccination as soon as possible with their treating hematologist/oncologist. Two of the approved vaccinations available in the United States and much of the rest of the world are mRNA vaccines which do not contain live virus and should be safe for most patients with a bone marrow failure condition.  While the efficacy of the vaccine may be lower in people with bone marrow failure conditions, side effects from receiving a vaccine are so low that most doctors recommend that you receive the vaccine.  Remember, some efficacy is always better than no efficacy, particularly as more contagious and possibly harmful COVID-19 variants are spreading. Please discuss this important topic with your treating hematologist/oncologist.

Some hematologists/oncologists have reported that a small number of PNH patients are experiencing an increase in hemolysis after vaccination, something that patients should discuss with their healthcare team and carefully weigh the benefits of vaccination against this risk. PNH patients should be carefully monitored after vaccination by their treating hematologist/oncologist.

Should 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. 

  • · Most healthcare facilities have resumed in-person medical appointments and/or have telehealth options available.  You may be required to wear a mask, and to follow extra precautions during your visit including a limit on the number of people who can attend appointments with you.  Please consult with your healthcare facility about these requirements.
  • · While there are not blood shortages at the time of this publication, the blood supply can vary by country, region and state. If you require regular transfusions, it is important to communicate regularly with your healthcare provider(s) and you may need to go a bit longer between transfusions.
  • · Some bone marrow failure patients are reported as having an incomplete or lower response to the available vaccines which makes them more susceptible to contracting COVID-19 and may necessitate a booster vaccine in the future.  Please consult with your treating hematologist/oncologist and follow their guidance to protect yourself from the COVID-19 virus.
  • Patients who take immunosuppressive medications may be more susceptible to infections including COVID-19.  Your treating hematologist/oncologist will provide you with guidance as to how to protect yourself, however we recommend wearing a mask correctly, social distancing and other precautions.

These FAQs from the American Society of Hematology are geared toward healthcare providers but patients may find them useful:

Other Trusted Resources

HealthWell Foundation:  COVID-19 Frontline Health Care Workers Behavioral Health:  
https://www.healthwellfoundation.org/fund/covid-19-front-line-healthcare-worker-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
https://www.healthwellfoundation.org/fund/covid-19-insurance-premium-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
https://www.bms.com/about-us/responsibility/coronavirus-updates.html#pspq

Telephone:  800.727.8909
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
https://rarediseases.org/for-patients-and-families/help-access-medications/patient-assistance-programs-2/#toggle-panel-14
Telephone:  203.242.0497
Email:  COVID19assistance@rarediseases.org
Financial assistance of up to $1,000 for eligible patients. Please call or email for more information. 

Be The Match Patient Assistance Grant Program
https://network.bethematchclinical.org/transplant-centers/access-to-transplant/patient-services-and-grants/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)
https://www.lls.org/support/financial-support/urgent-need-program

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.
https://www.211.org/services/covid19

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
https://www.irs.gov/coronavirus/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
https://thedav.wufoo.com/forms/q1078og50y99123/

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. 

 

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