Keep Going
by Joe Pugliese

There is an old saying, when going through hell, keep going. The optimist would say that is because hell is finite. The last 10 months have tested this nation and the world like it has not been tested since World War II. It would be the rare person who is not concerned about where we are today. While we are a young nation, we have demonstrated a resilience in the face of adversity.

I have worked hard at staying focused on those things I can control, perhaps influence would be a better word. Towards that end we are working like it is business as usual in an unusual world. Last week your Alliance Board, employees, and consultants, who work for you, held their annual strategic planning session. We spent a short period of time reviewing our successes and our shortfalls for 2020. Especially in times like these I think celebrating the things that went well is critical. Recognizing areas for improvement is consistent with the Plan Do Study Act Model.

Our success to date has been driven in large part by the tireless efforts and contributions of our board members. We have been blessed an amazingly talented and diverse board since I got here in 2006. Many of the early board members were the same people and centers that created the Alliance, ATHN, THSNA and HTRS. Today like then we have a geographically and functionally diverse board that regularly turns over by design. Two long-time board members recently rotated off after several years of excellent service – Helen McIntyre MBA FACHE, VP Operations at Fairview University and Mike Tarantino, MD, CEO and CMO of the Bleeding and Clotting Disorders Institute (BCDI). Jennifer Borrillo has stepped down from being Board Chair after a two-year term that saw the Alliance greatly expand our scope of services and our investment back into the community. Jennifer will remain on the board through 2021. Our deepest thanks to all three of them for giving us the benefit of their time and expertise.

We are equally grateful for our two new board members: Kimo C. Stine, MD, Professor of Pediatrics and Medical Director of Arkansas Center for Bleeding Disorders, and Becky Burns, Chief Operating Officer and Chief Financial Officer at BDCI.

You will be hearing about the outcomes of our strategic planning session over the coming months. Two items I wanted to highlight today include:

• Our efforts around gene therapy, which will finally be a reality in the next 12-24 months (fingers crossed). The Alliance has participated in a gene therapy working group, which includes leading clinicians, NHF staff and Regional Core center representatives. The group is restarting their efforts from mid-2020 as 2021 gets underway.
• Another cross-functional effort which has been underway since the middle of 2020 is a manuscript about HTCs being the gold standard of bleeding disorders care. You will be hearing more about both of these efforts as the year progresses. The manuscript is very thorough and aims to again address the discussion about the value of the federally-supported HTC network.

You will be hearing more about the initiatives coming out of our strategic planning session below and at our monthly webinars and member meeting. Here is hoping 2021 continuously improves as we head through the year.