Hemophilia Alliance Foundation Provides COVID-19 Relief for Patient Assistance
By Grant Hiura

Some good news in this most difficult time! On March 31st, with the generous support of the Hemophilia Alliance, the Hemophilia Alliance Foundation announced the COVID-19 Relief for Patient Assistance Grant. In just the first week of accepting applications, we have already provided $123,000 to 25 local organizations to help support their patient assistance programs. If you have not yet applied, we encourage you to read the grant guidance and submit an online application here.

We are working to process your applications as quickly and efficiently as possible, and we wanted to address some common questions that have arisen so far:

• We are currently prioritizing applications from NHF chapters and/or HFA member organizations that demonstrate a critical financial need. We may be able to expand these criteria based on community response and available funds
   
• HTCs are not eligible to apply in this current process but are strongly encouraged to work with their local chapters/member organizations to identify areas of greatest need (please see below)
   
• National organizations are not currently being considered at this time

How HTCs can help:

We realize that as the virus spreads, there is an exponential increase in need for financial assistance among families. Frequently, HTC social workers are the ones working directly with patients and their families to address their issues, many of which are financial. We are therefore asking for your help to identify these patients/families and to work closely with your local NHF chapters or associations and HFA member organizations to provide these families with the assistance they so greatly need. Examples include:

• Living expenses
• Food assistance
• Transportation
• Child or eldercare
• Healthcare expenses

If you have any other questions, please reach out to Grant Hiura at grant.hiura@hemophiliaalliancefoundation.org. Thank you and stay safe!

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Update from Hemophilia Federation of America on its Helping Hands Program

The COVID-19 Relief program page is now live. As of 4/10/20, HFA has approved 18 applications for COVID-19 Relief totaling $12,270 in assistance, which includes 17 applications for housing and 1 for utilities. The page includes a description of program eligibility and application process and a link to our new COVID-19 referral form. We have been working hard to set up the infrastructure for this new program to make it easy to track and report on applications. The Helping Hands staff will train 5-7 of our colleagues to be temporary relief program coordinators to help call applicants and complete applications, as we expect an influx of referrals once the new portal is publicized.

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ASH ISTH NHF WFH Guidelines on the Diagnosis and Management of von Willebrand Disease Open for Comment

The ASH ISTH NHF WFH Guidelines on the Diagnosis and Management for von Willebrand Disease are now open for comment. Materials are available at https://tinyurl.com/uf8htqy. The deadline to comment is April 30, 2020.

The goal of this joint effort is to create and maintain state-of-the-art guidelines to improve diagnosis and management of VWD, and improving care and health outcomes important to patients and their caregivers. The sponsors seek people with von Willebrand disease and their family members, caregivers, and healthcare providers to participate in this important endeavor.

This comment period is open to all members of the public. Feedback received will be provided to the guideline panels for review. Comments will also be considered during organizational approval of the guidelines, peer review of the guidelines for journal publication, implementation and dissemination efforts following publication, and future revision efforts.

These Guidelines on the Diagnosis and Management of von Willebrand Disease were developed through a collaboration between the American Society of Hematology (ASH), the International Society on Thrombosis and Haemostasis (ISTH), the World Federation of Hemophilia (WFH), and the National Hemophilia Foundation (NHF). These guidelines followed a systematic process, led by the University of Kansas Medical Center, intended to meet recommendations of the Institute of Medicine (now the National Academy of Medicine). Recommendations were formed by guideline panels that include experts in VWD from multiple disciplines, methodologists, and patient representatives.

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Coronavirus (COVID-19) and Hemophilia Summer Camp Considerations
By Tracey Gaslin PhD, CPNP, FNP-BC, CRNI, RN-BC, Hemophilia Nurse Practitioner, Executive Director, Association of Camp Nursing

For many of us, summer camp is one of the highlights of our year. We recruit campers from our treatment centers (HTCs), organize activities, train staff, develop protocols, and plan for one of the most enlightening experiences for children living with bleeding disorders. This year, our challenge is we have been thrown a Coronavirus curveball. As I write this, COVID-19 is still a moving target. Most of us are tracking the changes daily with the hope of seeing the numbers of affected individuals start to fall very soon. The intent of this article is to provide guidance as you plan for summer in the face of this current pandemic.

At the present time, many camps have not made a decision about cancelling camp for the summer– especially if camp does not start until June or July. Therefore, we continue to plan and consider updates to procedures and practices for the health and safety of campers and staff. One of the first and most helpful actions is preparatory work. A proactive approach to camp can potentially alleviate many issues during the experience.

We encourage you to start communicating with families about the COVID-19 virus. Remind families how the condition is spread (primarily through droplet transmission) and the three most common symptoms (fever, cough, shortness of breath). Most individuals will be aware of this information; however your sharing helps families understand the camp’s level of understanding related to the condition. Families are putting their child in your hands and want to know that you have a good working knowledge about support and care. Consider the following updates or additions for camp operations:

1. Encourage families to start educating the child at home before arriving at camp. There is a document titled “A Healthy Camp Starts at Home” and it is available and free. You can retrieve the document from campnurse.org. This document outlines items for families to discuss: handwashing, coughing in sleeve, adequate rest, hydration, physical distancing, and many other helpful items. This document is an easy way to start the educational process now. Load this document to your website or send out to potential families as they are inquiring about camp.
    
2. Consider Health Screening practices: Health screening is an effort to encourage everyone to arrive to camp in a healthy state. If your camp currently does health screening, consider adding questions regarding fever, cough, shortness of breath, and recent travel. If your camp does not conduct health screening, now is the time to start. We encourage everyone to check a temperature on folks when they arrive (campers and staff). If you could benefit from viewing an example of a health screening form, you may find one at campnurse.org.
    
3. Communicable Disease Plan: If your camp has a communicable disease plan (CDP), consider revisiting that plan and making sure the procedural steps are still up to date and appropriate. If you do not have a CDP, now is a great time to create one. A CDP organizes important steps for prevention of illness, intervention in the event there is an outbreak at camp, and recovery once an event has resolved. Consider using “Communicable Disease Practice Guidelines”. This tool is free (campnurse.org) and can guide you through the steps to create a CDP.
    
4. Consider what products you will use for cleaning. Coronavirus is easily killed and most household cleaners will work.
    
   1. Center for Disease Control Cleaning Products (CDC): https://www.cdc.gov/coronavirus/2019-ncov/community/home/cleaning-disinfection.html?mod=article_inline
       
   2. Environmental Protection Agency (EPA):
      https://www.epa.gov/sites/production/files/2020-03/documents/sars-cov-2-list_03-03-2020.pdf

Coronavirus, like many other viruses, is going to be around. We need to learn how to manage with good prevention practices and access to resources in time of need. Individuals most likely reading this are well-versed in hemophilia care. However, there is much to consider when operating a summer camp to keep individuals healthy. Consider visiting the American Camp Association (acacamps.org) and the Association of Camp Nursing (campnurse.org) as these organizations set the standards for health, wellness, and camp operations. They are eager to help and provide a wealth of information for your benefit. Engage in proactive efforts for camp and start taking those steps now. There is much to consider as we factor in considerations for COVID-19 as we strive for safe and healthy bleeding disorder camps across the country.