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I know many of you are overwhelmed with often-conflicting information on coronavirus and COVID-19. As a doctor and researcher, the health of the bleeding disorder community is my highest priority. Every Friday, I will be sending you vetted, trusted information about the pandemic and information you can use to keep you and your family safe. This information will also be posted on the NHF website at www.hemophilia.org .
 
If you have specific questions about COVID-19, please send them to NHF and I will do my best to address them in the next issue.
What People With Bleeding Disorders
Should Know
Join us for a webinar on Friday, April 3rd at 6:00pm ET for NHF's townhall: Financial Assistance: Coping During COVID-19. This week’s townhall will feature Dr. Leonard Valentino from the National Hemophilia Foundation, Allison Harrison from Hemophilia Federation of America, Ayesha Azam of the Pan Foundation, and Gerald Lauria from The Assistance Fund. The panelists will be discussing some of the resources which are available to the bleeding disorders community during the COVID-19 pandemic and how to access them. We'll also have time to answer your questions.
New MASAC Supplemental Statement on Home Supply and Refill
NHF’s Medical and Scientific Advisory Council (MASAC) has issued a supplemental recommendation on recommended at-home supply of bleeding disorders medication during times of declared states of emergency. MASAC recommends that during a period in which a national emergency has been declared under the National Emergencies Act, or at such other times (e.g., declaration of a natural disaster) that it may reasonably be anticipated that there could be an interruption in supply, distribution, transportation or home delivery of clotting factor concentrates or non-factor replacement therapy (e.g., Emicizumab-kxwh) patients with bleeding disorder treated on regular prophylaxis should be able to obtain a prescription refill for their prophylaxis regimen when their home quantity reaches at a minimum an estimated two week’s supply.

HTCs and COVID-19
If you are concerned about your upcoming clinic visit in light of the coronavirus outbreak, NHF has been in contact with members of the hemophilia treatment center network for advice on how to you can access the HTC during this time. First, always call ahead before showing up in clinic or the emergency room. Someone in your HTC will advise you on how to proceed if a visit to the HTC is necessary. As an alternative, many HTCs and healthcare facilities are conducting remote, telehealth visits using your phone, iPad or computer. Check with your HTC to see if this is an option for you. For more information on this topic, please check out the link below and plan to attend next week’s townhall when telemedicine is our featured topic.

CARES Act Adds Telehealth to FSA
The Coronavirus Aid, Relief and Economic Security (CARES) Act, which was signed into law on March 27 th contains a provision to allow payments from flexible spending accounts (FSA) to be used for telehealth services, including mental health services.

American Society of Hematology (ASH) COVID-19 Resource
ASH has created a resource of information for healthcare providers about COVID-19. While there is no specific information related to bleeding disorders, the resource “will be updated frequently and new features added as needed.”

International Society on Thrombosis and Haemostasis Provider Resource Page
ISTH is providing open access to its  COVID-19 resource page for Providers. Included on this page are numerous research publications as well as links to timely topics of interest to those caring for COVID-19 hematology patients. One article from the British Journal of Haematology summarizes the care of hematology patients in a COVID-19 epidemic.

COVID-19 CDC Resource for Providers
The Centers for Disease Control and Prevention has an extensive resource for healthcare providers on the COVID-19 outbreak. Remember: The best way to prevent illness is to avoid being exposed to this virus.

  • The virus is thought to spread mainly from person-to-person. Between people who are in close contact with one another (within about 6 feet). Through respiratory droplets produced when an infected person coughs or sneezes. These droplets can land in the mouths or noses of people who are nearby or possibly be inhaled into the lungs.


  • Clean your hands often.

  • Avoid close contact
Health & Exercise
Mental Health
As we continue to practice social distancing and keeping ourselves and our loved ones safe, our mental health is just as important. Here are some resources and articles that may help you:



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