October 2021 Newsletter


In this Issue…

Notes from Joe
· You Never Know!

Alliance Update
· 2022 Spring Meeting Schedule
· New Member Maps

Legal Update
· Rebates Under the Uniform Grants Guidance: No Such Thing as a Free Lunch

Alliance Board Update
· Alliance Seeking Board Nominations

Notes from the Community

Team Alliance Contact Information

Notes from Joe

You Never Know!
by Joe Pugliese

Way back in 2009, we were trying to get a national payer to contract with all Alliance members (a grand total of about 35 members back then). We were also told by this payer that it was too much trouble to contract with multiple entities. They suggested we go get a national pharmacy to be a point of contracting. I am reasonably certain they did not think we would actually get one.

The Alliance Pharmacy (TAP) was created in 2010, it was and is a 503c organization, licensed in all 50 states as a pharmacy. The Board of Directors of TAP is made up of healthcare professionals from member HTCs and staff from the Alliance. They oversee all aspects of the organization. You will be hearing more about TAP in the coming months. I am convinced that, among other things, we need to lower administrative costs and TAP is part of achieving that goal. I thought today it would be great to share a very recent story about TAPs operational excellence and commitment to patient care. The note below is written by Angela Kellum, PharmD Pharmacy Manager, Tulane University Health Sciences Pharmacy, Louisiana Center for Bleeding and Clotting Disorders.

“Hurricane Ida hit the New Orleans and surrounding area on August 29, 2021. The effects were devastating. Much of the bayou country and the Louisiana coast was flooded. Wind and tree damage was extensive. Some of our staff and many of our patients lost their homes, their cars, and most or all of their belongings. The entire New Orleans area was out of power and many without internet, cable, or cell service for weeks. This included downtown New Orleans where our in-house 340B pharmacy is located and Tulane University was closed for 3 weeks. Although our building was closed, our pharmacy was still open.

The Tulane University Health Sciences Pharmacy, the in-house 340B pharmacy for the Louisiana Center for Bleeding & Clotting Disorders has 2 contract pharmacies in place for emergency dispensations: The Alliance Pharmacy (TAP) and Gulf States Pharmacy (GSP). We were extremely busy that first week after the storm sending to our contract pharmacies both prescriptions and large lists of replacement infusion supplies. We had patients who did not evacuate with any medications or supplies, or they did not take enough. Some patients returned home and had lost their medications due to either flooding or the lack of electricity needed to maintain proper storage. We had patients who needed extra doses of clotting factor as they were busy cleaning tree limbs and debris from their yards and repairing their damaged homes. Other patients needed their usual refills.

After orders left the contract pharmacies, there were extended shipping delays and challenges, especially delivering to those patients in storm devastated areas. TAP and GSP spent a great deal of time arranging alternate delivery locations to patients, tracking packages and resolving shipping issues. TAP used an add-on FedEx service called “Priority Alert” for at risk shipments during this time. Having this service allowed for TAP to more easily track and manage their shipments and likely avoided extended delivery delays and losses. For example, by TAP’s use of this service they were able to easily re-route a delayed shipment back to their pharmacy for proper storage over a weekend. Our pharmacy is now on a wait list to have this service added to our account.

Hurricane Ida was not the first time we had used TAP as a contract pharmacy. As they are licensed in all 50 states, they took over the dispensation for a patient of ours who moved to Alabama, a state where our pharmacy is not licensed. I appreciate how they communicate with us throughout the dispensing process and send all the needed paperwork for our records to be audit ready.

The pharmacists and technicians at TAP and GSP were absolutely amazing—from the first day after the storm hit, until our pharmacy could reliably provide medications to our patients ourselves. They were not only professional, but also patient, kind, and accommodating to our HTC staff and to our patients, down to every last detail. A heartfelt thank you to them for helping us care for our patients!”

We did not know in 2009 that TAP would grow into such a valuable resource for the bleeding disorders community. You will be hearing more about TAP in the coming months. The next thing you will likely hear is they will be running the much-needed DDAVP NS challenge program in 2022 as a service to the community.

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Alliance Update
  • 2022 Spring Meeting Schedule
    by Sean Singh

    Board Retreat (Board Members and HA Staff Only) January 9th to 11th
    Pharmacists CE Conference January 26th to 28th
    New HTC Staff Meeting February 6th to 8th
    Linda Gammage Social Worker Conference February 23rd to 25th
    Spring members Meeting April 3rd to 5th
    Hill Day TBD
    Up and Coming (small) HTC May 15th to 17th

  • NEW!!! Member Maps
    by Kiet Huynh

    We have recently updated our Member Maps. The map on the public side of our website includes changes that allow you to navigate the map easier. One new feature is a pop up window when hovering over a blood drop. This pop up indicates a HTC. A second feature is a list of HTCs by state on the lower part of the page. We have also made it easier to print the center’s information or to get directions to the center.

    The map located in the members section, which is only accessible by logging in with a username and password, includes more details about the center including contact information for an individual at the center. It functions the same way as the public map with the pop ups and the HTCs by state. In addition, we have included the contact information for your Hemophilia Alliance liaison.
    New Member Map Preview

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Legal Update

Rebates Under the Uniform Grants Guidance: No Such Thing as a Free Lunch
by Elizabeth “Issie” Karan & Michael B. Glomb

Hemophilia Treatment Centers (HTCs) have asked whether rebates are considered “program income” under the Uniform Grants Guidance (UGG). Although rebates are excluded from the definition of program income, rebates constitute “applicable credits” under the UGG. Meaning, HTCs must utilize rebates to offset expenses accrued because of grant activities and appropriately account for their use. Given the confusion, the Hemophilia Alliance provides relevant legal citations below.

The UGG defines “Program Income” as:

“Gross income earned by the non-Federal entity that is directly generated by a supported activity or earned as a result of the Federal award during the period of performance except as provided in § 75.307(f). (See Period of performance.) Program income includes but is not limited to income from fees for services performed, the use or rental or real or personal property acquired under Federal awards, the sale of commodities or items fabricated under a Federal award, license fees and royalties on patents and copyrights, and principal and interest on loans made with Federal award funds. Interest earned on advances of Federal funds is not program income. Except as otherwise provided in Federal statutes, regulations, or the terms and conditions of the Federal award, program income does not include rebates, credits, discounts, and interest earned on any of them.” 45 C.F.R. §75.2

The text emphasized above may mislead HTCs into thinking that rebates can be treated as unrestricted funds. However, the UGG has more to say about reductions in costs under federal grant awards.

First, the UGG describes the costs that can be charged to a federal award as follows:

“Total cost. The total cost of a Federal award is the sum of the allowable direct and allocable indirect costs less any applicable credits.” (emphasis added) 42 C.F.R. §75.402

The UGG further states: “Applicable credits refer to those receipts or reduction-of-expenditure-type transactions that offset or reduce expense items allocable to the Federal award as direct or indirect (F&A) costs. Examples of such transactions are: Purchase discounts, rebates or allowances, recoveries or indemnities on losses, insurance refunds or rebates, and adjustments of overpayments or erroneous charges. To the extent that such credits accruing to or received by the non-Federal entity relate to allowable costs, they must be credited to the Federal award either as a cost reduction or cash refund, as appropriate.” (emphasis added) 42 C.F.R. §75.406(a)

These principles apply to both the expenditure of grant funds and to the expenditure of program income because program income must be used for the purposes and under the same conditions of the federal award. See 42 C.F.R § 307(e)(2).

We advise HTCs to seek advice from legal, accounting, and compliance experts about rebate funds. However, the Hemophilia Alliance team is also available to answer questions.

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Alliance Board Update

Alliance Seeking Board Nominations
by Eric Gray, CPA, Vice Chair, Hemophilia Alliance Board

The Hemophilia Alliance Board Nominating Committee is seeking applicants or suggested nominations to fill one vacancy on the board of directors, with the term beginning December 2021. For consideration by the nominating committee, applicants are to submit a letter of interest and resume or CV to egray@ihtc.org by end of day Friday, November 5, 2021. We seek to broadly represent our membership and are encouraging applicants from all regions and disciplines to apply.

Applicants or suggested nominees must be employed by a Hemophilia Treatment Center in good standing with the Hemophilia Alliance, support the Hemophilia Alliance mission, vision and programs, and be willing to share their knowledge and expertise with the Hemophilia Alliance, participating in bi-monthly board meetings.

Terms are for a 3-year period, not to exceed 2 consecutive terms. In a typical non-pandemic year, the Board meets six times per year, three via conference call and three in-person. Two of the in-person meetings occur at the Hemophilia Alliance membership meetings and one board retreat takes place in January. Due to the Covid-19 pandemic, the Hemophilia Alliance Board and Leadership will continually assess the appropriate setting for all meetings. During 2021, one meeting was held in person and also provided a virtual attendance option.

Our Mission
The Hemophilia Alliance works to ensure member Hemophilia Treatment Centers have the expertise, resources and public support to sustain their integrated clinical and pharmacy services for individuals with bleeding and clotting disorders.

Our Vision
Through the work of the Hemophilia Alliance, the clinical and pharmacy programs of the Hemophilia Treatment Centers are integrated, stable and sustainable within a changing healthcare environment. They are trusted and respected as the preferred way to provide people with hemophilia and other bleeding disorders access to the full range of care they need.

For more information about the Hemophilia Alliance visit our website hemoalliance.org.

FAQs
What does it cost to be on the board?
There is no cost to be on the board.

When does the board meet?
Two in person meetings occur at the Hemophilia Alliance membership meetings, one board retreat takes place in January and three conference calls take place on the fourth Thursday of the month at 2pm EST.

What are the qualifications or degrees needed to be on the board?
You must be an employee of the HTC and in good standing with the Hemophilia Alliance. No other qualifications or degrees are needed.

Do I need to hold a particular role in the HTC?
No.

Does my program have to be a large program to be on the board?
Candidates from all types of centers from new startup centers to well established programs are encouraged to apply.

What are some of the things I should include in my letter of interest?
Your role with the factor distribution program.
Things that interest you in serving on the Hemophilia Alliance board and what you feel you will bring as a member of the board.
Include your experience with local, regional, national committees or boards related to hemophilia and related bleeding and clotting disorders.

If you have any additional questions please feel free to contact me at egray@ihtc.org.

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Notes from the Community

Hemophilia Alliance has joined the Blood Diseases and Disorders Education Program’s Blood Health Network. Our goal is to learn how the program and our new partner Network can best align with educational activities of others with mutual missions.

NHLBI Launches New Blood Diseases and Disorders Education Program
This national health education program aims to bring greater visibility to blood diseases, disorders, and blood safety. Learn more about this program and follow @BloodHealthEd on Twitter.
Link: https://www.nhlbi.nih.gov/education/blood

Join WFH
As HTC staff, you know firsthand what a difference access to proper care can make in the lives of people living with bleeding disorders. Yet the overwhelming majority of our global community go without basic access to diagnosis or treatment, resulting in premature disability and even death. This reality is all the more devastating because it is, as you well know, entirely preventable.

For nearly 60 years, the World Federation of Hemophilia has been working to equip and empower healthcare providers and patient advocates from our 147 national member organizations with the knowledge, tools and funding they need to:

  • identify and diagnose inherited bleeding disorders
  • provide adequate treatment and care
  • collect, interpret and disseminate data
  • advocate for safe and sustainable treatment and care

WFH membership is a way for you to support our mission to improve and sustain care – while enjoying some great benefits!

Individual members receive discounts on registration for the 2022 WFH World Congress in Montreal the first major hybrid event of the international bleeding disorders community, taking place from May 8 – 11, 2022, as well as a free online subscription to Haemophilia, the official journal of the WFH, EAHAD and HTRS.

Your center can also sign up for a group membership, which entitles up to 6 members to discounted registrations rates for the WFH World Congress.


“What I enjoy most about being a member of the WFH is access to networking with my peers around the world.”
– Christine Guelcher

Becoming a member sends a powerful signal that you believe that neither your gender, nor where you live, should impact your level of access to care. It’s also a great way to connect more deeply to the global bleeding disorders community.

Don’t miss this opportunity to join our growing family! Sign up for WFH membership today.

We look forward to welcoming you to the 2022 WFH World Congress in Montreal, and thank you for all you do to contribute to our vision of Treatment for All.

Sincerely,
Alain Baumann
CEO, World Federation of Hemophilia and WFH USA

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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
Karen Bowe karen@hemoalliance.org 717-571-0266
Johanna Gray, MPA jgray@artemispolicygroup.com 703-304-8111
Kiet Huynh kiet@hemoalliance.org 917-362-1382
Elizabeth Karan elizabeth@karanlegalgroup.com 612-202-3240
Kimberly W. Lackman kimberly@hemoalliance.org 813-400-6710
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

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