Notes from Joe, March 2019

Notes from Joe

HTCs and Chapters: Natural Partners
By Joe Pugliese

We are in the middle of the spring meeting schedule, which features a plethora of meetings: Regional meetings, HFA annual meeting, NHF Hill Day, the Alliance Hill Day and many more. I want to focus on two in this article. The first was the NHF leadership meeting held in Denver Colorado in mid-February and the second is the Hemophilia Alliance Foundation, which met in Atlanta a few weeks ago.

The 52 NHF Chapters around the country offer numerous opportunities to enhance your patients’ care, and we encourage you to partner with your local chapter. While attending the NHF Chapter Leadership Seminar, I had the pleasure of hearing from chapters and community members from all over the country. The theme for the meeting was Sharing Your Story. As I listened to the inspiring stories from community members, it was clear that the support they’ve received from the chapters has been life-changing.

While each chapter may offer different programs and services to the community, they are united in their dedication to supporting the bleeding disorders community. Programs and services may include educational events and retreats, opportunities for in-person and online support meetings, financial assistance, educational scholarships, travel assistance for community members to attend national meetings, advocacy, promotion of research, resource centers, and more.

While having breakfast with some executive directors to hear more about what they do, they expressed interest in collaborating more with their HTCs. It seems it is a natural partnership. Federally-supported HTCs and local, state and national patient organizations are aligned in supporting the needs of people with bleeding disorders and their families. Obviously many of you have seen the benefit of collaborating in a variety of ways.

As I mentioned earlier, the Hemophilia Alliance Foundation Board met recently in Atlanta for the happy job of giving out grants to the bleeding disorders community. It was a record setting year for the number of grants funded, total dollars funded, and most exciting to me, the total number of dollars granted to collaborative efforts between HTCs and chapters. These grants and other financial support for the bleeding disorders community is only available because of the 103 participating members of the Hemophilia Alliance, The Alliance Pharmacy and our contract partners.

I urge HTCs to reach out to your local chapter(s) to see how you can learn more about what they do, share about what your HTC is doing, and discuss opportunities to partner. Chapter leaders, I encourage you to look for ways to support your local HTC. It is no secret that these are challenging times to be a health care provider. Together we can make sure the bleeding disorders community has access to the clinical care they need in a quickly changing health care environment.

Hemophilia Alliance Foundation Update
By Susan Karp, Incoming Chair


The Hemophilia Alliance Foundation board recently met in Atlanta to review and approve a record number of applications and give out a record number of grants. We celebrated the departure of two of the founding board members at our meeting. Joyce Strazzabosco, who had served as the Chair of the Foundation since its inception, and Chad Stevens, also an original board member, are both stepping down but not before creating a solid organization focused on serving the unmet needs of the bleeding disorders community. Joyce will remain with the Foundation in a consulting role for the balance of 2019. Chad will continue to be involved in many aspects of the hemophilia community through his work and many friendships across the country.

I am left with some big shoes to fill but am excited by the opportunity and want to introduce the current board to the community: Brenda Riske, Vice Chair; Crystal Sallans, Treasurer; Michael Craciunoiu, Secretary; Anjali Sharathkumar, Stephanie Raymond, and our two newest members, Maria Manahan and Amy Marquez.

As mentioned in Notes from Joe, we set records across three key indicators in the 2019 grant cycle. Our collaborative grants set a record, with $181,000 being given to collaborative submissions between HTCs and Chapters. The total grant funding increased 25%. This reflects the commitment of the Hemophilia Alliance members to giving back to the community. The goal of these grants since the beginning has to been to improve the operational capacity of the organizations who receive them. We have added elements over time, particularly in the area of patient assistance, but our guiding principle has been to help recipients help themselves.

We have settled on a set time line for grant submission, grant deadline and a timeline for sending the grants out. The grant application for 2020 will be posted on the Foundation website on 12/1/2019 and has to be returned no later than midnight EST on 1/31/2020. There is no requirement to wait till the very last second and submissions in December, 2019, are actually encouraged. The board will review the grant requests between 1/31/2020 and mid-March, 2020, and awards will be mailed out soon after.

Also in this Issue…

Washington Update
· HTCs Are Not Subject to Hospitals’ GPO Exclusion: Apexus FAQ 2653
· Alliance Submits Response to Senate HELP Committee Request for Policy Ideas

Payer Update
· The Covered Outpatient Drug Rule (CODR)…Two Years Later

Alliance Update
· Reminder: Please Register for the Spring Meeting!

Notes from the Community
· Promoting XXcellence in Women’s Health: Optimal Management of Women and Girls with Bleeding Disorders and Blood Disorders


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@artemispolicygroup.com 703-304-8111
Elizabeth Karan ekaran@feldsmantucker.com 612-202-3240
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@artemispolicygroup.com 202-257-6670
Mark Plencner mark@hemoalliance.org 701-318-2910
Michael B. Glomb MGlomb@ftlf.com 202-466-8960
Theresa Parker theresa@hemoalliance.org 727-688-2568
Karen Bowe karen@hemoalliance.org 717-571-0266
Joel Bellucci webmaster@hemoalliance.org 727-504-0491