Fighting Back
By Joe Pugliese

The many of us who are sheltering in place send out a HUGE thank you to the many who are out there everyday, taking care of the sick, protecting the elderly, making sure there is food to eat and the lights go on, the mail goes through and the trash is picked up. I guess I am doing my part by not getting sick and causing more work and more strain on those who are trying to take care of all the others who are not so lucky. Sitting at home being safe is very practical but not very satisfying. As was discussed on the webinar last week, there is a current shortage of whole blood and there is a potential shortage of plasma down the road. If you or someone you know wants donate, here are links to finding commercial plasma collection centers and blood donation sites. You can also simply ask Siri or Alexa for blood donation sites near me.

We set up a weekly members webinar every Thursday at 1pm eastern time. We just completed our third webinar and had 186 people register to attend. The Alliance team has done a wonderful job of organizing and presenting during these webinars. Additionally, we have been blessed to have members from HTCs across the country join us to add a boots on the ground perspective. Many thanks to Dr. Roshni Kulkarni, Robert Barto, Cara Hannemann, Amy Schewald, and Elizabeth Bogeman, for their excellent contributions in the last few weeks. All of the webinars have been recorded and are available on the members section of the website. We hope that you will join us this week: our “guest” speaker will be Steve Pipe, MD, University of Michigan Medical Center and the Chair of MASAC. He will be discussing how to prepare to be a gene therapy site. Please be prepared with questions you may have on what to do to prepare your site.

We remain in close touch with our manufacturing partners, all of whom have been very responsive to our requests for timely information regarding availability of product. We are happy to report that supplies remain uniformly very good to adequate. They have also taken the lead on managing inventory to assure that the product is where the need is. We encourage everyone to follow MASAC Recommendation 242 and the supplemental guideline as well.

Two weeks ago, the Alliance Board approved $500,000 in funding for patient assistance. We have already given out $173,000 in financial aid to the Hemophilia Federation of America’s Helping Hands program and 25 Chapters across the country. These grants are only made possible by your support of the Hemophilia Alliance. More details on the grant process is in this newsletter.

We will get through this mess and we all want to be ready when we do. Hope you had a Happy Easter weekend there is no doubt it was the most unusual in our lifetime. Be safe, be well.