January 2020 Newsletter

In this Issue…

Notes from Joe
· 2020 Outlook
· Marketing and Operating Strategic Plan Goals for 2020
· 2020 Payer Team Goals
· 2020 Advocacy and Policy Goals

Payer Update
· A Thank You to the Hemophilia Alliance

Notes from the Community
· Hemophilia Alliance Foundations Funds Health and Fitness Videos
· Final Reminder: Deadline to Apply for the Hemophilia Alliance Foundation’s 2020 Grant is Approaching

Alliance Update
· Notes about Upcoming Alliance Meetings
· Reminder: 2020 340B Program HRSA Grantee Recertification Period Begins in January
· 2020 Meeting Schedule

Team Alliance Contact Information

Notes from Joe

2020 Outlook
By Joe Pugliese

The board and staff of the Hemophilia Alliance met last week to review 2019 performance and set objectives for 2020 and beyond. Last month we reviewed 2019 accomplishments, so I want to focus now on our goals for this year. You will see other articles later in the Newsletter with goals for various aspects of the Alliance’s work but I am happy to share goals for our group purchasing component.

Our goal in 2020 is the same as our goal since our inception. We want to continually bring incremental value to our membership and be a good partner to the manufacturers who support us. Never has this been more challenging. The dramatic changes that have and will take place in our community create excitement and fear about the future. It is easy for anyone to think about how to improve my position in the short term and worry about later when it comes. Our focus has always been on making sure all members get the full benefit of our efforts.

We also want to add a minimum of 3 new members in 2020, which means that we would then have 93% of all the HTCs in the country who dispense replacement therapies as participating members. There is nothing preventing nonparticipating members from joining, all you need is to be a federally qualified hemophilia treatment center listed on the Office of Pharmacy Affairs website with an HM designation.

My personal feeling is we need to focus on building our core business and look to expand our footprint into the broader bleeding, clotting and blood disorders. The board has tasked us with evaluating what is possible and what is in the best interest of the patients. You will be hearing more about this effort throughout the year and we invite your input into where, and how to proceed.

If we were in it for the money, we would have run the Alliance very differently from the beginning. Everything we do at the Alliance, The Alliance Pharmacy and Hemophilia Alliance Foundation is focused on supporting the HTCs and the patient community they serve. This of course requires that our manufacturing partners and our members recognize and support the inherent value of the GPO concept. This support has enabled the success we have enjoyed to date.

2020 holds great promise, as has been recently announced both national patient organizations have named new President and CEOs. The choices reflect the unique characteristics of the two organizations, yet both made groundbreaking choices in their own way. Sharon Meyers has been at Hemophilia Federation of America (HFA) for the last four years, but comes from outside the bleeding disorders community, a first for HFA. Sharon has an excellent background and is obviously very familiar with the organization she is now leading.

The National Hemophilia Foundation announced that Len Valentino MD, will be their new President and CEO. He is a first for NHF. I first met Len about 35 years ago when he founded the HTC at Rush Presbyterian in Chicago and he brings a unique skill set that I think reflects the dramatic changes the community is facing. Policy makers, insurance companies, fellow clinicians and the patient community will recognize the passion and knowledge Len brings to the position. His letter to the community may be found here.

We wish both great success in their new roles. We look forward to building on the strong relationships with both organizations we have enjoyed over the past ten years.

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Marketing and Operating Strategic Plan Goals for 2020
By Sean Singh

At the planning session, the Board of Directors reviewed the 2019 goals and assessed the progress made. Based on the assessment the Board has outlined the 2020 Goals for the Marketing and Operations team to meet our membership needs. Here are the goals we will be focusing on for this year:

In addition to the webinars presented by our manufacturing partners, we will conduct webinars with CEUs for clinical staff. We encourage you to let us know if there are specific topics you would like covered.

HTC Pharmacy Operations Software Assessment:
We plan to survey our members to see what members need regarding a software system that can manage inventory, pharmacy and medical benefits billing. The system could also assist in meeting the URAC accreditation needs as more HTCs get accredited.

Bleed Logs:
Survey our members to see what the need is for a consistent way for patients to report bleeds, infusions and general interaction with the HTC. There continue to be discussions about who should own the data and where it should be stored.

Member Meetings:
We will be adding a third member meeting held May 6th to 8th, 2020 in Minneapolis. This meeting will be geared to new HTC Staff members and staff/team members who have not attended an Alliance meeting. This meeting will be supported by a limited number of our manufacturing partners, and manufacturers will have an opportunity to present to the audience as part of their support. This financial support will allow the Alliance to pay for our members to attend the conference; the Alliance will cover attendees’ travel costs (airfare and transportation), accommodations and meals. There will be a limit of two attendees per center. More information will be sent via email to members.

Community Support:
Working with member HTC to advocate about the services and support the centers provide to the community through attendance at Chapter meetings and events. Grown the number of meetings the Alliance will attend in conjunction with the HTC member.

General Support:
Continue to support members in training new HTC staff members. In addition, support the centers in their plan for long-term sustainability. Utilize Alliance team members as needed by the centers to meet 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.”

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Payer Team Goals for 2020
By Jeff Blake

Last week the Hemophilia Alliance Team and our Board of Directors met to discuss and develop our 2020 strategic goals. Based on the discussion, the Board and the Alliance Team finalized four (4) Payer Team strategic goals for 2020. Below is a summary of the goals.

The first is to maintain and expand our working relationships with payers – insurance companies, Medicaid Agencies, Medicaid Managed Care Organizations, Third Party Claims Administrators (TPAs), Brokers/Consultants, Self-Funded Employers, Pharmacy Benefit Managers (PBMs) and Reinsurance Carriers/Stop-Loss Vendors. This goal includes our ongoing efforts to implement our National Hemophilia Alliance Network Services (HANS) HTC PPO Network.

Our second goal is to continue to provide education and payer updates through member meetings, webinars, on-site visits, newsletters and e-blasts. Some of the topics will include:

  1. HANS PPO Network
  2. Payer activities and results
  3. The Alliance Pharmacy (TAP) as a potential contract pharmacy for HTCs and as a backstop for the HANS PPO Network
  4. Bleeding disorders product pricing and reimbursement
  5. Disease management program
  6. Insurance policy updates
  7. Insurance marketplace

Our third goal is to implement the Disease Management Program (DMP) model with at least one payer, Medicaid or insurance company. The DMP would provide reimbursement for clinical and pharmacy management in some form of a capitated rate, potentially a per member per month fee. This would help reduce an HTC’s dependency on pharmacy program revenue.

Our final goal is to develop and implement reimbursement and billing services to support HANS payer agreements and to offer reimbursement and billing services to member HTCs. We are actively recruiting for a reimbursement manager to support this effort.

As you can imagine, there are many activities and tactics the team will be working on to accomplish each of these goals. We will be providing updates throughout the year and look forward to working with you to accomplish the goals.

If you have any questions, please contact one of the Hemophilia Alliance team members.

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2020 Advocacy and Policy Goals
By Johanna Gray and Ellen Riker

We are also very pleased to share 2020 goals for our advocacy efforts in Washington and beyond. They include:

General 340B issues: We will continue advocacy to ensure the sustainability of the federal program and HTCs ability to participate and use program income to strengthen comprehensive care for patients. We will also continue to work with our legal colleagues and community stakeholders to assist HTCs in maintaining compliance with 340B program rules. Finally, we will advocate to oppose discriminatory pricing policies implemented by public or private payers that negatively affect HTCs.

Hill Day: We will plan another successful Hill Day for Alliance members, their patients, and our bleeding disorders colleagues. Since we anticipate the introduction of legislation related to the SNF issue, we plan to structure the Hill Day slightly differently this year. This will allow people who are able to lobby (to ask for Congress to support a policy) to do so, while maintaining the educational focus of meetings for those who cannot (those folks will talk about HTCs and the importance of the 340B program more generally, as they have done in past years). We will soon be sending out additional info about the Hill Day and plan to hold a webinar to answer all of your questions. Stay tuned, but we hope to see you all in Washington in March!

Access to Care: We will continue advocacy to ensure that all bleeding disorders patients have access to the treatments and providers they need, regardless of type of insurance. This includes:

  • Supporting Medicare policies that allow for the unique needs of people with hemophilia and other bleeding disorders, recognizing that Medicare policies are often the model used by private insurers;
  • Advocating for Medicaid policies that allow bleeding disorders patients to access treatments and enable HTCs to provide medical and pharmacy services to Medicaid enrollees; and
  • Promoting private insurance policies related to the Affordable Care Act so that patient protections are maintained and accumulator adjustors don’t impede access to care.

Novel therapies: We will evaluate and potentially create reimbursement models for gene and novel therapies to ensure that patients have access to these treatments and that interested HTCs can participate in the distribution and dispensing of the products. We will work with other stakeholders in the bleeding disorders community working on this issue.

In our busy and challenging political time, we also know that we will respond to new issues that arise throughout the year. Please feel free to contact us with any questions or additional issues or concerns affecting your HTC or your patients.

Payer Update

A Thank You to the Hemophilia Alliance
By Helen McIntyre, MBA, FACHE, Vice President of Operations, University of Minnesota/Fairview Center for Bleeding and Clotting Disorders

Last November, Jeff Amond from the Hemophilia Alliance stepped in to help represent treatment centers that align with the local chapter in Minnesota (Hemophilia Foundation of Minnesota and Dakotas) at a first ever Manufacturer Symposium. Jeff was on hand and was able to explain to patients the importance of the HTC team in helping patients make an informed decision about their treatment therapy as well as providing top-notch care. He was also able to remind folks the importance of 340B. We received very positive feedback about how helpful and professional Jeff was.

This is just one example of many, illustrating the clear membership value with the Hemophilia Alliance. I so appreciate that the team is simply an e-mail or call away and that we can always count on them when challenging issues arise.

Notes from the Community

Hemophilia Alliance Foundations Funds Health and Fitness Videos
By Lisa Littner, MSW, LISW-S, CHES, Education Specialist, Cincinnati Children’s Hospital Medical Center

Cincinnati Children’s Hospital Medical Center (CCHMC) identified a need for patients with hemophilia and their families to have more knowledge on healthy nutrition and the importance of safe physical activities. As part of a capstone project in my Master’s in Public Health program, I designed three YouTube videos that focus on providing education on these topics. The video format as a health education intervention was chosen because it is appeals to different learning styles and offers the ability for patients and families to receive education remotely.

To develop the videos, I worked with a collaborative team including Molly Mays, hemophilia physical therapist; Dr. Cristina Tarango, hemophilia medical director; and the CCHMC videography team. CCHMC patients and families were featured in the videos, as well as the hemophilia physical therapist and a dietician. Each video has a different theme related to health and fitness for children with hemophilia and their families.

The videos can be accessed on YouTube by following the links below. The information in the videos is not specific to Cincinnati Children’s Hospital, so other hemophilia treatment centers should be able to use these videos with their patients. Many thanks to the Hemophilia Alliance Foundation for their support with this project.

Video Links:

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Final Reminder: Deadline to Apply for the Hemophilia Alliance Foundation’s 2020 Grant is Approaching

A final reminder that the deadline to apply for the Hemophilia Alliance Foundation’s 2020 Grant is fast approaching! All application materials must be submitted through our online application system at https://hemophiliaalliancefoundation.org/grant-information by Friday, January 31, 2020.

Due to the high volume of applications, please send any questions regarding the grant application or process (including any technical questions with our new online application system) to info@hemophiliaalliancefoundation.org by Tuesday, January 28th to ensure that you receive a response prior to the application deadline.

If your organization has a great idea for a program that positively impacts the bleeding disorders community, we strongly encourage you to apply for an HAF grant. For 2020, the ceiling for local applicants (i.e. consumer-led organizations and hemophilia treatment centers) is $8,000; the ceiling for national organizations and the eight HHS-designated federally funded regional core coordinating centers is $10,000. Successful applications for both projects and patient assistance programs should demonstrate clear, measurable outcomes and a strong commitment to the bleeding disorders community. Since 2009, the HAF has awarded over $4 million to help 140+ chapters, treatment centers, and national community organizations build capacity and support and expand their missions. Hear from one of our grant recipients below:

"Funds received via the Hemophilia Alliance Foundation Grant have helped support attendance at the annual meeting of the Mountain States Hemophilia Network (MSHN). Due in part to the grant funds received, the MSHN has continued to offer the opportunity for all team members at MSHN Hemophilia Treatment Centers to attend this collaborative educational meeting without limiting registration by center or discipline. As the MSHN region crosses a large geographic swath, travel costs can be considerable. We are thankful to the Hemophilia Alliance Foundation for their assistance with these travel costs through the Foundation grant."Susan Lattimore, Regional Coordinator, Mountain States Hemophilia Network, 2019

Organizations interested in submitting applications should review the 2020 Grant Guidance thoroughly before finalizing their applications, which must now be submitted electronically via a SUBMIT button at the bottom of the application. This new system will allow for applicants to immediately receive an automated acknowledgement of receipt of their application. Please note that applications submitted as an attachment to an email will not be considered.

If your organization—or an organization you know—is interested in applying but feels like it does not have the capacity or expertise to do so, please reach out to us at the address above! We can direct you to additional resources that will help you submit a strong application.

Alliance Update

Notes about Upcoming Alliance Meetings
By Sean Singh

1. Spring Member Meeting and Hill Day – March

We have a Draft Agenda for the Spring Members Meeting, which will be held in Washington DC on March 29th to 31st, 2020. The general meeting will begin on Sunday March 29th at 2 pm followed by a networking reception at 5:30 pm. Please register here and book your hotel stay. We will be working with centers to bring patients to participate in the Hill Day on Tuesday March 31st. We ask that you bring a patient that will be able to talk to members of Congress about your HTC 340B Pharmacy program and the benefits the community receives. The Hemophilia Alliance will pay for the patient’s costs to participate (airfare and ground transportation, one night’s accommodations and meals). Please register your patient here.

Should you have questions about the meeting agenda, space, accommodations or any other logistics please contact us anytime.

2. Join us for an Informative Meeting at HTRS/THSNA – April

The Hemophilia Alliance will be holding a Pre-Conference session at HTRS/THSNA on Wednesday April 22nd, 2020. Lunch will be served at the meeting which begins at 1 pm. The meeting will be led by Joseph Pugliese President and CEO of the Hemophilia Alliance. The topic of the session is “Sustainability of the HTC Pharmacy (340B) with Emerging Therapies.” This will be an interactive session where we discuss financial models for emerging therapies. The current and pending changes make maintaining your current business and expanding your footprint critical for sustaining the comprehensive care mode. The Hemophilia Alliance continues to work with Insurance Companies, Brokers and Consultants to keep HTCs in network and continue to give them access to provide pharmacy services in dispensing factor products to their patients. Please RSVP here. Please feel free to contact us at any time with questions about the program.

3. Fall Members Meeting – October

Please save the date for the Fall Members Meeting being held from Sunday October 4th to Tuesday October 6th. The general meeting will begin on Monday October 5th at 8 am and end at 4 pm on Tuesday October 6th. Hotel information and registration will be available soon.

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REMINDER: 2020 340B Program HRSA Grantee Recertification Period Begins in January

See below for a note from CDR Samuel N. Cardarella RN, BSN with details about the 2020 recertification process:

Dear 340B Stakeholders,

The 2020 340B Program HRSA Grantee Recertification period for Consolidated Health Centers, Federal Qualified Health Center Look-Alikes, Ryan White, Comprehensive Hemophilia Treatment Centers, Native Hawaiian, Black Lung Programs, Urban Indian, and Tribal Compact 638 will be January 27-February 24, 2020. There will be a recertification webinar held on January 22, 2020 from 1-2pm EST. A separate email will be sent out with all the information required to access the webinar.

Prior to being able to recertify, Authorizing Officials (AOs) and Primary Contacts (PCs) must set up a user account in the 340B Office of Pharmacy Affairs Information System (340B OPAIS). Failure to set up user accounts will result in not being able to view accounts or conduct recertification, thus removal from the 340B Program. AOs and PCs must create individual user accounts, they will not be able to share access. All active 340B ID’s associated with an AOs user account must be updated in order for recertification to be completed by the established deadline.

If any contact information has changed since last recertification or new ones need to be added, please send all information to Jvolpe@hrsa.gov prior to the start of recertification.

For assistance with the 340B OPAIS, I strongly encourage you and the covered entities to utilize the online help that is available for your convenience. HRSA also has information and tutorials available on our website at https://www.hrsa.gov/opa/340b-opais/index.html. For further assistance please contact the 340B call center operated by the 340B Prime Vendor Program at apexusanswers@340bpvp.com or 1-888-340-2787 (Monday – Friday, 9 a.m. – 6 p.m. EST).

CDR Samuel N. Cardarella RN, BSN
Program Management Officer
Operations Branch, Office of Pharmacy Affairs
Health Systems Bureau, Health Resources Services Administration
Office 301-945-0930
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2020 Meeting Schedule

  • Social Worker Conference: February 26th to 28th
  • Spring Members Meeting: March 29th and 30th in Washington, DC
  • Hill Day visits: March 31st in Washington, DC
  • HTRS/THSNA Preconference: April 22nd
  • Meeting for New HTC Members: May 6th to 8th in Minneapolis
  • Fall Members Meeting: October 4th to 6th

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 ekaran@feldsmantucker.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
Joel Bellucci webmaster@hemoalliance.org 727-504-0491