Notes from Joe, July 2019

Notes from Joe

A Penny For Your Thoughts
By Joe Pugliese

Last month, I did a quick review of our performance year to date versus our strategic goals. At the same time we sent out two new survey requests and we know you feel surveyed to death. As a reminder, we provide a substantial grant to ATHN every year to fund data managers to assist HTCs across the country in collecting data. The Hemophilia Alliance has a firm policy of not participating in blinded market research. We adopted this policy years ago because of concerns about who would get the information and how it would be used. We continue to recommend to our members to decline to participate for the same reason, in addition to the time involved. The two surveys we sent out were generated through a combined effort of the Hemophilia Alliance and the National Hemophilia Foundation and we feel strongly that they will provide important information to support HTCs operational and clinical services.

The first was a survey trying to quantify the negative impact of the lack of reimbursement for clotting factor for patients needing skilled nursing facility (SNF) services. We are delighted that we received 44 responses. We’re currently working to analyze the data, which we will use in our legislative advocacy to address this problem in Washington. If you haven’t completed the survey and want to share your center’s experience with SNF services, please contact Johanna Gray. While a relatively small percentage of the bleeding disorders population is covered by Medicare, it is a big problem for those impacted. This issue will grow as the hemophilia population continues to grow older thanks to the current and evolving clinical care model and the current and pending new therapies.

The second survey came out of the work being done by the Comprehensive Care Sustainability Collaborative (CCSC). The CCSC, as the name states, is a program started by NHF to help sustain the comprehensive care model and enhance relationships with payers. It brings together treatment center staff, NHF staff and payers to create opportunities for HTCs to stay or get into network. We have received 46 responses to date. If you have not responded yet you can access the survey here. The collaboration with NHF through CCSC and the continued joint efforts of our payer team and the Advocacy team at NHF has resulted in very tangible benefits for members across the country. We have captured a significant number of clotting factor units for HTC member pharmacies across the country and have in excess of 50 current opportunities to double that number in the near term. I think we are going to build on that success.

The two surveys mentioned above and the HTC Insurance Questionnaire/Payer Survey we have been using for the last 2 years seek to support and advance the cause of HTCs that provide optimal care to patients with bleeding disorders.

As you have heard from us consistently over time our goal is to find ways to collaborate with all stakeholders in the community. As a community we do not lack for opinions on the best way forward. I stated last month we always encourage feedback which helps us move forward. We are most likely to succeed in our vision if we constantly look for ways to work together.

Also in this Issue…

Alliance Update
· Meet our New Board Members: Laurie Reger and Chris Guelcher

Legal Update
· Recordkeeping and Retention: If You Can’t Prove It; It Didn’t Happen

Payer Update
· TAP, TAP, TAP: How Healthy is your Contract Pharmacy Portfolio?

Notes from the Community
· VWD Connect Foundation Annual Conference Recap


Team Alliance Contact Information

We work for you! Please don’t hesitate to contact any of us with any questions or concerns:

Name Email Phone
Joe Pugliese joe@hemoalliance.org 215-439-7173
Sean Singh sean@hemoalliance.org 727-388-7326
Jeff Blake jeff@hemoalliance.org 317-657-5913
Jeff Amond amond@hemoalliance.org 608-206-3132
Johanna Gray, MPA jgray@dc-crd.com 202-484-1100
Elizabeth Karan ekaran@feldsmantucker.com 202-466-8960
Roland P. Lamy, Jr. roland@hemoalliance.org 603-491-0853
Dr. George L. Oestrich, Pharm.D., MPA george@gloetal.com 573-230-7075
Ellen Riker eriker@dc-crd.com 202-484-1100
Mark Plencner mark@hemoalliance.org 701-318-2910
Michael B. Glomb MGlomb@ftlf.com 202-466-8960
Theresa Parker theresa@hemoalliance.org
Karen Bowe
Joel Bellucci webmaster@hemoalliance.org 727-504-0491