Dateline: Orlando, Florida
by Joe Pugliese, President and CEO

Over the last two months HTRS, Coalition for Hemophilia B and the Hemophilia Federation of America all had their annual meetings at the Renaissance Sea World in Orlando, FL. I made two out of three meetings since I was in DC for NHF’s Washington Days during HTRS. Everyone seems genuinely happy to see old friends and make new ones. Speaking of new friends, I want to welcome Dan Kelsey, the new President & CEO for the Hemophilia Federation of America. Dan is new to the bleeding disorders community, but I had the chance to have dinner with him last week. We look forward to working with Dan and his organization.

Leading up to the meeting we were contacted by a new group named FAIR, please see the community news section for more information about the goals and objectives of this organization. We met with the leader of the organization Ashley Gregory. She had outlined for me in an email the objectives of the organization. I encourage you to read through their outline. One of the early inquiries was about expanding the knowledge and access to MSKUS diagnostic tools. I immediately reached out to Annette Von Drygalski MD, Medical Director of the HTC at UCSD. As many of you know she has been running an outstanding program specifically to teach health care professionals how to make the best use of this diagnostic tool. The May newsletter will feature the work they have been doing in San Diego.

I wish Ashley and her colleagues well. I encouraged them to develop and submit a grant proposal for the upcoming Hemophilia Foundation Innovation grant cycle. I do have reservations about creating another organization in a time of decreasing funding. This is especially true when many of the already established organizations are working hard to address these very same issues. Of course, it is not up to me, but I ask people to be thoughtful about how we invest our resources. Ashley wants to ensure that all of this innovation is brought into daily use at HTCs across the country.

Two other things jumped out at me from the two patient organizations’ meetings. The first was the many healthcare professionals at the meetings who were featured speakers. This is a great change in programming. I have had many conversations with patients who are dissatisfied with their treatment. They do not feel like their concerns are heard. Like the group above, they express concern about access. I do not dismiss their concerns; I do, however, point to the willingness of the healthcare professionals to constantly strive to do better. I am never disappointed when I sit in on these sessions and listen to the incredible progress that this community has made in a remarkably short period of time.

A long-time sporting event at these meetings is watching the relentless marketing of patients by some specialty pharmacy representatives. I have received several hilarious post meeting summaries of some of the tactics employed to get patients onto their service. The patient organizations have over time created rules regarding the “do’s and don’ts” of promoting or selling to patients and their families. I can only assume the organizations created these guidelines because they saw a need to curb these behaviors. I had a post meeting discussion with a chapter leader, who acknowledged the problem. There is a reluctance to take any action to discipline people or companies who do not adhere to the rules. I was asked what I thought, which is: if you create these rules, then you should be prepared to enforce the rules. The “punishment” needs to be adequate to deter the behavior. If you aren’t prepared to enforce the rules for those who insist on breaking them, then you’re effectively punishing the people and companies who abide by them.