MPN PATIENTS AND COVID-19

MPNRF | April 6, 2020

We at MPNRF have been fielding many questions from the patient community about the Covid-19, or Coronavirus, situation. While information is still coming in and what we all know continues to emerge, we have provided a variety of credible resources from trusted sources below. The MPN research foundation will continue to monitor and keep you updated as best we can should anything change. To receive our updates, register for our monthly email and newsletter by clicking here.

FAQS WITH DR. SCHERBER

Am I most susceptible to coronavirus because I have an MPN?
We don’t know yet, so it is best to show appropriate caution and follow guidelines from the CDC and WHO about hygiene and avoiding large gatherings. The data to help answer the questions as to whether coronavirus is going to be a huge problem or more of a nuisance for most patients with MPN is just not there. Although most folks that have severe COVID19 virus injections have serious underlying comorbid health issues—even to us physicians they really haven’t been told the details what most of those are. Most cases that I have heard of suggest that underlying lung or heart disease seems to be the most problematic. It is true that we know that some viral infections can be more frequent and/or more severe in those with MPN– more in MF, somewhat more in PV, and less in ET. However, if we take the flu (which is also a viral infection) as an example, I have only known a few MF patients ever have
the flu severe enough to be hospitalized and only one that I can think of that has passed from it. I have known no ET or PV patients who have ever needed to be hospitalized from the flu. Thus, it stands to reason that most patients will be okay.

I have a job that I work with a lot of people, such as working at a school. Should I not go to work?
It makes sense to be reasonably cautious when possible. I would take every allowable precaution that your workplace (with the help of your physician) will allow you. For those with jobs that may put them directly in touch with large groups of people such as those who work as a teacher, in healthcare, education, etc. , I have in the past offered to help them and their employer to find a reasonable accommodation for the job, just as phoning in for meetings or events, moving their workspace to more secluded spot, and allowing work from home at times. Hand hygiene, “social distancing,” and staying away from those that have symptoms is the best idea regardless of your infection risk. I also urge you to talk with your physician. If you and your doctor agree that you are at higher risk, they are able to help you with the paperwork needed to file such as (Family & Medical Leave Act) FLMA or state unemployment benefits.

Should I still go to my doctor’s visit? Aren’t hospitals the worst place to be?
I would recommend calling your doctor’s office first. The policy about who is to come in may have changed in light of Covid and/or they may have some questions to ask you to help keep you and the other patients safe. At our center – University of Texas San Antonio Medical Center-, we are implementing protocols to screen people when they check-in for their visit for possible coronavirus symptoms and see them in specific rooms or locations in order to keep other individuals safe.

Availability of medicines that people with MPN use
MPNRF has checked with several suppliers of medicines used by people living with an MPN and none have reported to us that they would be impacted by the disruption that has been caused by Covid-19. We will continue to alert the community should this change.

DR. RUBEN MESA OFFERS GUIDANCE

Dr. Ruben Mesa, Director, Mays Cancer Center, UT Health San Antonio, MD Anderson, offers guidance for patients with myeloproliferative neoplasms (MPNs) in dealing with the Coronavirus (Covid-19).

MANAGING ANXIETY AND SELF CARE

It’s natural to feel stress and anxiety during times of uncertainty. As the Coronavirus situation evolves, it’s important to remember to take care of your mental health as well as your physical health. Please keep in touch with your hematologist, follow guidance from trusted sources such as CDC, and do all you can to maintain a positive outlook.

Here are a few resources that could help you ease your anxiety and reduce your negative thoughts during this unpredictable time.

MPN Quality of Life Study Group (MPN Yoga Study )

How to Separate Coronavirus Fact from Fiction from Patient Empowerment Network

COVID-19 Lockdown Guide: Managing Anxiety and Isolation During Quarantine from the Anxiety and Depression Association of America

Journal article touting the benefits of an online yoga program for MPN patients

CDC guide on managing anxiety & stress re: COVID-19 and their guide on managing emotional health during disasters/traumas

10 Ways to Ease Your Coronavirus Anxiety article from the New York Times

WEBINARS

Patient Power – What Are the COVID-19 Risks for MPN Patients?
Experts Dr. Ruben Mesa and Dr. Robyn Scherber, both from the UT Health San Antonio MD Anderson Cancer Center, answer the MPN community’s pressing COVID-19 questions, and offer both words of caution and hope to patients and care partners. Watch to hear their perspectives on the impact of the coronavirus outbreak on MPN care and recommended protective measures.

Patient Power – MPNs and Coronavirus: Expert Advice for PatientsPatient Power founder Andrew Schorr is joined by renowned myeloproliferative neoplasm specialist Dr. Naveen Pemmaraju, from The University of Texas MD Anderson Cancer Center, to discuss the recommended precautions for MPN patients during the coronavirus outbreak.

The Leukemia and Lymphoma Society – Your Questions Answered about Coronavirus (COVID-19)Two hematologist/oncologists on the LLS leadership team, and experts in the field of blood cancer, answer questions and concerns about coronavirus (COVID-19).

STUDIES AND SURVEYS

The Mayo Clinic and Myeloproliferative Neoplasm Quality of Life Study Group are conducting an international research survey to investigate the experiences of MPN patients during the COVID-19 pandemic. The survey asks about how the COVID-19 outbreak has impacted your MPN care, both in bad and good ways, as well as your everyday life. The team hopes to use data from the survey to improve the care of MPN patients during and after the COVID-19 pandemic. Your participation in this research survey is highly valuable to the MPN community.”Experts Dr. Ruben Mesa and Dr. Robyn Scherber, both from the UT Health San Antonio MD Anderson Cancer Center, answer the MPN community’s pressing COVID-19 questions, and offer both words of caution and hope to patients and care partners. Watch to hear their perspectives on the impact of the coronavirus outbreak on MPN care and recommended protective measures.

CLICK HERE TO PARTICIPATE

FINANCIAL RESOURCES

Team Rubicon and the Patient Advocate Foundation Emergency Food Assistance Program – Aims to provide much-needed help to immunocompromised patients with cancer, multiple sclerosis and rheumatoid arthritis whose ability to access or pay for food is at greater risk due to COVID-19.CLICK HERE

NORD’s Financial Assistance Program – The National Organization for Rare Disorders (NORD^®) launched a COVID-19 Critical Relief Program to provide much-needed assistance to members of the rare community affected by the COVID-19 pandemic. Click the link below to learn more and to apply.

CLICK HERE

LLS COVID-19 Patient Financial Aid Program – Thanks to the generosity of LLS partners, eligible blood cancer patients will receive an individual one-time $250 stipend per patient to help with non-medical expenses, such as food, housing, utilities, transportation, and other needs. Patients do not need to have a COVID-19 diagnosis and there are no income criteria to qualify.

CLICK HERE TO LEARN MORE

While the Foundation does not have a program to assist with expenses, in addition to the LLS COVID-19 Patient Financial Aid Program, we have a financial assistance page located on our website to assist MPN patients to find the resources they need.

FINANCIAL ASSISTANCE