Notes from Joe, March 2021

Notes from Joe

Imagine That
by Joe Pugliese

There are only a couple of good things we can say about the last 12 months, probably the most important is we hopefully have the worst days behind us. We are still averaging 1,500 deaths from COVID-19 per day, but the number is trending down and you can sense everyone breathing a collective sigh of relief. The way so many essential workers responded so heroically in the face of such a terrifyingly, uncertain danger is inspiring. The reason we all feel like the worst is behind us is of course the vaccines that came to market through the imagination, focus, expertise and investment of some of the most imaginative people in the world. The old science said you could not get a vaccine to market in less than two years. There are four different types of COVID vaccines world-wide.

Tragically, as things get back to normal, there has also been a heartbreaking return to mass shootings across the country. As we imagine our lives post-COVID, I know we are imagining a time when the lives of many are not shattered by the senseless violence of the very few. The shootings in Atlanta and Boulder grab the headlines and we mourn the victims. Let us not forget the victims and their families across the country who live with a steady stream of violence on a daily basis. A special thank you to police officer Eric Talley, who ran towards the gunfire in Boulder. Officer Talley was the father of seven and died trying to protect others. I know I like to imagine I would do the same and pray I have no opportunity to find out.

All of this requires us to reimagine how we get things done. Besides wanting things to improve, everyone is also hoping that things slow down so we can catch our breath, but I’m afraid that’s unlikely. This is equally true in our little world. It is hard to pick an exact spot where the community reimagined itself. If you read Carol Kasper’s commemorative article about Judith Graham Poole, you will realize the community has been reimagining itself since at least 1948 when the National Hemophilia Foundation was formed. I think everyone would agree that the pace of change has simply accelerated.

Several members of the Alliance have recently taken obvious and dramatic steps to reinvent themselves:

  • The bleeding disorders community in Alaska found themselves without a treatment center and with the assistance of the chapter, local pharmacies, the region and the Alliance, created the Alaska Bleeding Disorders Clinic. I am thrilled to report they are doing great as is the patient community.
  • Rebecca Kruse-Jarres, MD, The Director of the Washington Center for Bleeding Disorders (WACBD) shared: “The Washington Center for Bleeding Disorders (WACBD) separated from Bloodworks Northwest on 11/28/20 to become an independent nonprofit organization. Being part of a blood bank was valuable for the care for hemophilia for many years. At a time where we are fortunate to have ever improving treatments for hemophilia, we need to adapt to associated changes while also expanding focus to new areas of need. An independent organization will facilitate this by permitting more flexibility and direct accountability. Ultimately this will benefit who matters most, our patients whose care has been entrusted to us.”
  • Most recently the Bronson Hemophilia Treatment opened their doors after relocating from the West Michigan Cancer center.

These are not the first centers, nor will they be the last to reinvent themselves by physically, mentally and spiritually moving away to better serve their patients. All of you have imagined and implemented changes over the last year. Now is not the time to stop; if anything we have to run faster. It sounds exhausting, but it helps if you think of it as fun.

The Alliance is busy trying to keep up with innovators like these three sites. Since 1999, we have evolved from trade organization to GPO and have added advocacy, operations, legal, payer relations, and billing and reimbursement services. Not to mention providing pharmacy and distribution through The Alliance Pharmacy and facilitating direct giving back to the community via the Hemophilia Alliance Foundation. We will soon have a solution for the DDAVP intranasal shortage, and it will be because of all the things we have put in place over the last 20 years. We realize there is much more to do.

Also in this Issue…

Legal Update
· Getting Out Your Message without Getting in Hot Water: HTC Marketing and the Grant Rules

Washington Update
· Please Register for the Alliance Virtual Hill Day!

Payer Update

Alliance Update
· Marketing and Operations Update
· Meeting Schedule for 2021

Notes from the Community
· World Federation of Hemophilia: Global Reach. Local Impact.

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