Notes from the Community, June 2019

Notes from the Community

Update from the Hemophilia Alliance Foundation
By Susan Karp, R.N.M.S., Chair

I recently retired after thirty-nine years as the Nurse Coordinator at the University of California, San Francisco, Hemophilia Treatment Center, a large HTC and tertiary care center caring for both children and adults. During my long tenure in the bleeding disorders community, I served in many roles including Chair of the NHF Nursing Committee, camp director and infirmary director at our local summer camp, membership on the local Ryan White HIV Planning Council, board member of our local NHF chapter, and membership on many other local and national committees. In these varied roles I saw the multiple needs of patients and their families, chapters, and treatment centers. I was delighted to be asked to join the Hemophilia Alliance Foundation Board in 2013. The community has many unmet needs and the financial assistance that the Foundation is able to provide is extremely important.

Joe Pugliese, CEO of the Hemophilia Alliance, had a vision to share the Alliance’s discretionary funds with organizations serving the bleeding disorders community. In 2009, a Hemophilia Alliance Grants Board was established and grants totaling $250,000 were awarded to national and regional organizations as well as local consumer organizations and hemophilia treatment centers. In 2013, the Hemophilia Alliance Foundation was incorporated as a nonprofit corporation.

The Foundation has a volunteer board of directors with eight members from diverse disciplines, geographic areas, and perspectives of the bleeding disorder community. Besides myself, they are: Brenda Riske, MS, MBA, MPA, Denver, CO; Crystal Sallans, LCSW, Houston, TX; Anjali Sharathkumar, MBBS, MD, MS, Iowa City, IA; Michael Craciunoiu, Vice President, Chapter Development, NHF; Stephanie Raymond, Executive Director, Cascade Hemophilia Consortium, Ann Arbor, MI; Amy Marquez, Pharmacy Supervisor, Fairview Pharmacy Services, Minneapolis, MN; and Maria Manahan, formerly Chief Executive Officer, Hemophilia of Georgia, Atlanta, GA. The Foundation also benefits from the donated services of the Alliance’s President, Joe Pugliese, and Vice-President, Sean Singh. Audra Ames and Joel Bellucci provide administrative support and web services, respectively. We are excited that Joyce Strazzabosco, retired Chair of the Foundation, is continuing on as a consultant in 2019.

We are looking for a couple of additional board members in 2019. If you are interested, please see the application available here, which has more details. The deadline is July 15th.

The Foundation receives its funds primarily from the Hemophilia Alliance as well as a generous contribution from The Alliance Pharmacy. In addition, some independent donors have expressed interest in contributing to the Foundation. One of our goals is to determine how to best fund raise in order to continue to provide awards to the needy organizations that apply with the hopes of increasing our grant award dollars in future years.

In 2019, the Foundation awarded grants to 80 organizations totaling $747,000. The organizations range from local chapters and treatment centers to regional and national organizations. These awards serve to strengthen chapters’ infrastructure, fund educational programs and patient and family retreats, allow consumers and providers to attend regional and national meetings, and provide funding to needy individuals and families in the bleeding disorder community through chapter Emergency Assistance Programs. The Foundation has also been able to provide emergency assistance funding to chapters where families have been impacted by natural disasters.

For 2019, chapters and treatment centers are eligible to apply for grants up to $8,000 while national organizations and the eight federally-designated regional hemophilia centers are eligible for grants up to $10,000. Joint projects between treatment centers or between chapters and treatment centers are encouraged, and funding may be awarded to each entity, i.e. a chapter and a treatment center doing a joint project may apply for $16,000. Chapters may apply for funding for projects or for patient assistance funds or a combination of both.

As with any young organization, the Foundation continues to learn and grow. We continue to revise and simplify the application process as well as provide assistance to applicants who request help with the process. We strive to make the process as simple as we can while assuring we receive the information necessary to meet our obligations as trustees and to assure fair and unbiased decisions. The Grant Guidance and application are posted on the Hemophilia Alliance Foundation website each December 1 and applications are due January 31. The award period is April 1 to March 31. People hearing about the Foundation for the first time are encouraged to go to our website and download the Grant Guidance. The Guidance contains information regarding the application process as well as contact information should the applicant have further questions.

I am excited to be Chair of the Foundation and I am so proud of all the work that we do. We are able to provide much needed support to multiple organizations and this support makes a difference in the lives of so many people – both the consumers and the providers serving the bleeding disorder community.

Reminder about the Upcoming 340B Conference

A friendly reminder that the 2019 340B Coalition Summer Conference in Washington is right around the corner. At the conference, you will get up to speed on the latest developments around 340B drug pricing transparency, HRSA 340B audits and other federal oversight activities, explore the latest trends in contract and specialty pharmacy, access the resources and advice you need to run your 340B programs effectively, and hear about some of your peers’ innovative approaches to patient care.

In addition, you will have the opportunity to discuss specific issues faced by hemophilia treatment centers in the hemophilia treatment center breakout session led by Hemophilia Alliance staff. There will also be a track dedicated to Policy and Compliance. The Alliance is also holding a networking dinner at the Stone’s Throw Restaurant in the Wardman Park Marriott at 6 pm on Monday, July 15th. Please RSVP to Joe (joe@hemoalliance.org) if you would like to attend.

Also in this Issue…

Notes from Joe
· Checking in, Halfway Through the Year

Legal Update
· To Contract, or Not to Contract – It Depends

Washington Update
· Update on Alliance Advocacy Activities

Payer Update

Team Alliance Contact Information


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