Notes from Joe
By Joe Pugliese
In a typical year, we would just be finishing up with a busy Spring meeting season and everyone would be hoping that the coming summer would slow things down a bit. Now, I am not sure when we will find a new typical. While virtual meetings are an excellent stop gap measure, it will be difficult to replace the personal, face-to-face contact with our friends in the bleeding disorders community.
If you or a loved one has not been directly affected by COVID-19 and you’re lucky to work from home, it sometimes seems like a problem on the other side of the world. However, if you or a family member has been diagnosed or if you have lost a loved one, it is too real. It is also very real for the millions of people who suddenly, unexpectedly find themselves out of work. If you are an essential provider, like healthcare workers, grocery and drug store employees, delivery drivers, and don’t forget the trash guys, you just put your head down and keep going. We are all depending on you to do your job. We cannot thank all of you enough.
Bleeding disorders healthcare providers have adapted to the current reality and have found many ways to support their patients and their families. The manufacturers of these critical life-saving products have kept the supply channels adequately stocked and the distribution network has delivered not just these treatments, but nearly every item you can think of with a minimum of disruption and confusion.
Alliance activities, including our well-attended weekly webinar series, have focused on AC/DC (After COVID-19 and During COVID-19):
- In the AC category, on a recent webinar, Michael Tarantino did a wonderful update on expanding his clinical practice into treating ITP. Meanwhile, the Alliance payer team has identified a way forward for all members with the Preferred Provider Organization that is working to assure that centers remain in network and able to fund the comprehensive care that the bleeding disorders community needs. Additionally, the regions have sent out a survey to all HTCs to gain a better understanding of their capabilities and interest in gene therapy, with the goal of assisting all centers in being prepared for this exciting new treatment. I encourage you to complete the survey at your earliest convenience.
- In the DC category, the Hemophilia Alliance Foundation and the HFA Helping Hands program have made excellent use of the funding from the Alliance, providing support for patient assistance programs at 42 chapters across the country and grants for 146 families, respectively. The funding is only possible because of the member organizations of the Hemophilia Alliance. We have also been providing regular updates (including in articles below) regarding COVID-19 related policy changes that can help your center respond to the epidemic and continue to provide excellent care.
It seems certain that during COVID-19 will be with us longer than we had hoped, but there will be an after COVID19. We will continue to push ahead with initiatives designed to ensure the long-term financial security of the HTC network. In the meantime, please stay well and please let me know if there is anything else the Alliance can do to support you.