January 2021 Newsletter

In this Issue…

Notes from Joe
· Keep Going

Legal and Washington Update
· Washington Bureau Goals

Payer Update
· Payer Team Goals

Alliance Update
· Operations Team Goals
· 2021 Meeting Schedule

Notes from the Community
· Celebrating 30 Years Young! The Coalition for Hemophilia B Reaches a Milestone

Team Alliance Contact Information

Notes from Joe

Keep Going
by Joe Pugliese

There is an old saying, when going through hell, keep going. The optimist would say that is because hell is finite. The last 10 months have tested this nation and the world like it has not been tested since World War II. It would be the rare person who is not concerned about where we are today. While we are a young nation, we have demonstrated a resilience in the face of adversity.

I have worked hard at staying focused on those things I can control, perhaps influence would be a better word. Towards that end we are working like it is business as usual in an unusual world. Last week your Alliance Board, employees, and consultants, who work for you, held their annual strategic planning session. We spent a short period of time reviewing our successes and our shortfalls for 2020. Especially in times like these I think celebrating the things that went well is critical. Recognizing areas for improvement is consistent with the Plan Do Study Act Model.

Our success to date has been driven in large part by the tireless efforts and contributions of our board members. We have been blessed an amazingly talented and diverse board since I got here in 2006. Many of the early board members were the same people and centers that created the Alliance, ATHN, THSNA and HTRS. Today like then we have a geographically and functionally diverse board that regularly turns over by design. Two long-time board members recently rotated off after several years of excellent service – Helen McIntyre MBA FACHE, VP Operations at Fairview University and Mike Tarantino, MD, CEO and CMO of the Bleeding and Clotting Disorders Institute (BCDI). Jennifer Borrillo has stepped down from being Board Chair after a two-year term that saw the Alliance greatly expand our scope of services and our investment back into the community. Jennifer will remain on the board through 2021. Our deepest thanks to all three of them for giving us the benefit of their time and expertise.

We are equally grateful for our two new board members: Kimo C. Stine, MD, Professor of Pediatrics and Medical Director of Arkansas Center for Bleeding Disorders, and Becky Burns, Chief Operating Officer and Chief Financial Officer at BDCI.

You will be hearing about the outcomes of our strategic planning session over the coming months. Two items I wanted to highlight today include:

  • Our efforts around gene therapy, which will finally be a reality in the next 12-24 months (fingers crossed). The Alliance has participated in a gene therapy working group, which includes leading clinicians, NHF staff and Regional Core center representatives. The group is restarting their efforts from mid-2020 as 2021 gets underway.
  • Another cross-functional effort which has been underway since the middle of 2020 is a manuscript about HTCs being the gold standard of bleeding disorders care. You will be hearing more about both of these efforts as the year progresses. The manuscript is very thorough and aims to again address the discussion about the value of the federally-supported HTC network.
  • You will be hearing more about the initiatives coming out of our strategic planning session below and at our monthly webinars and member meeting. Here is hoping 2021 continuously improves as we head through the year.

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Legal and Washington Update

Washington Bureau Goals
by Elizabeth (Issie) Karan 

Prior and during the 2021 strategic planning session, the Hemophilia Alliance advocacy and legal team (Mike Glomb, Johanna Gray, Issie Karan and Ellen Riker) joined with Board members to assess progress on advocacy and legal goals during 2020 and to set priorities for 2021.

As we look to 2021, the advocacy and legal team plans to continue to our advocacy work in all of these areas, including:

  • Closely monitoring high priority areas for HTCs, including related to 340B policies related to discriminatory pricing and compliance; access to care including with respect to the Affordable Care Act, Medicaid, and Medicare; and coverage, reimbursement, and drug pricing proposals;
  • Proactively reaching out to influence the implementation of the Hemophilia SNF Access Act and educating the HTC and patient communities, as well as the broader skilled nursing facility community as the law is implemented this fall;
  • Working with patient groups and coalitions on policies related to accumulator adjusters and to ensure that patient protections in private insurance remain intact;
  • Collaborating with the Alliance payer team to monitor and assess 340B discriminatory pricing issues and Medicaid policies which limit treatment options for patients; and
  • Holding another successful virtual Hemophilia Alliance Hill Day in May 2021! We hope that you will consider joining us – there are many new faces in Congress that we need to educate about our community and what policies are important to us.
  • We anticipate many new policies in all of these areas due to the change from the Trump to the Biden Administration and start of the new 117th Congress. We will continue our work to educate Alliance members as new policies are rolled out and encourage you to contact any of us with any questions or as new issues arise at your center.

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Payer Update

Payer Team Goals for 2021
by Jeff Blake

Earlier this month the Hemophilia Alliance Team and our Board of Directors met to discuss and develop our 2021 strategic goals. Based on the discussion, the Board and the Alliance Team finalized five (5) Payer Team strategic goals for 2021. Below is a summary of the goals:

The first is to grow Hemophilia Alliance Network Services (HANS) presence with our member HTCs and Payers, PBMs, Employers, Insurance Brokers and continue to seek regional and national payer agreements between HANS and Payers. We currently have 36 HANS PPO Agreements with member HTCs, and we want to increase this to more than 50 member HTCs.

Our second goal is the continued development of a Disease Management Program (DMP) with the goal of impacting at least one Medicaid program during 2021. We will be conducting an HTC pharmacy cost to dispense survey and cost to provide the HTC comprehensive care story. This will provide us with the critical data and information to rollout a Disease Management Program with payers.

Our third goal is to expand our billing and revenue cycle management services that we started providing during 2020. We will continue to assist member HTCs with individual reimbursement issues with payers and our plan is to begin offering billing, prior authorization, and revenue cycle management services to our members.

Our fourth goal is to identify, develop and enhance key collaborations with organizations impacting the hemophilia community and use our collective voice to impact payer relations and policy at the local, regional, and national levels. We will continue our collaborative efforts with NHF and HFA and work on opportunities to expand our collaborations.

Our final goal is to create relevant policy/position statements and provide education to member HTCs on important issues and trends impacting payment or financial stability of HTCs. Some topics will include:

  • Gene Therapy
  • Hemlibra impact – lower reimbursement and margins
  • Acquisition models – improving HTC performance through the GPO and contract pharmacies
  • PBM regulation at the state level
  • As you can imagine, there are many activities and tactics the team will be working on to accomplish each of these goals and we will provide updates on our progress throughout the year. We 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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Alliance Update

Operations Team Goals
by Sean Singh

Webinars: We plan to continue our webinar series throughout the year and offer even more updates to Alliance members. We also plan to work with our manufacturing partners to offer CE credits for some webinars later in the year. We have been told that we should focus on Nursing, Pharmacy and Physical Therapy. If there are more areas you would like us to consider, please let us know.

Website: We plan to streamline the website to make it easier to access the information you need on the website. For example, our members section of the website has a tremendous amount of information that goes back several years, much of which is still relevant but infrequently accessed. We will archive dated meeting presentations based on the frequency of visits to the files. We also plan to update the home page with information on webinars and meetings on a more frequent basis. Several members are having trouble receiving our email campaigns on meetings because of firewalls. With the change to the website, you will be able to access this information directly on the website.

Newsletter: We are going to reformat our newsletter for a fresh new look that will be more mobile device friendly. As more and more people utilize mobile devices to read our newsletter, we hope this will make it easier for you to get this information.

Harmony in Hemophilia: As we look to foster better relationships and more collaboration between Chapters and our members we will continue to move ahead with this program and offer our support as requested. We will continue our quarterly webinar highlighting collaboration efforts and addressing specific needs of community. We also plan to identify ways to communicate the great things happening in our community and will be looking for stories we can share through our newsletter. We also seek to enhance our relationship with NHF and HFA chapter leadership teams to ensure our efforts are aligned. Finally, we hope to relaunch Harmony in Hemophilia at in-person Chapter events Q3-Q4, 2021 if we are able to meet in person.

Data Reporting: We will continue to enhance our data reporting capabilities to build on the updates we made in 2020. Our goal is for more members to report data monthly. We are always looking for feedback where we can incorporate your ideas to make things more streamlined.

Kiet HuynhNew Team member: Finally, I am pleased to introduce our newest team member! Kiet Huynh (hwin) has just joined us as our Manager of IT Solutions. He is excited to continue his career in the non-profit arena. He will be responsible for the daily IT operations and support, interactions with HA team members, member centers and external partners. Prior to joining The Alliance, Kiet was the IT Manager at the Rockefeller Philanthropy Advisors, IT Manager for Historic Hudson Valley and spent seven years at the National Hemophilia Foundation as their IT Manager. Kiet graduated from Baruch College in NY in 1996 in Computer Information Systems. In his spare time, he likes to take photos, travel, and plays table-tennis competitively. We cannot wait to get a company game going when we can get together in person.

Operations Team:
Sean Singh – Senior Vice President
Theresa Parker – Administrator
Karen Bowe – Director of Community Relations
Kiet Huynh – Manager of IT Solutions


Meeting Schedule for 2021

Winter/Spring Webinar Series
January – 21st
February – 18th
April – 22nd
May – 20th

Spring Members Meeting
March – 18th & 19th (Virtual)

Hill Day
May – 5th (Virtual)

Summer Webinar Series
June – 17th
July – 29th
August – 26th

Fall Members Meeting
September – 12th to 14th (In-person tentative)

New HTC Staff Meeting
October – 10th to 12th (In-person tentative)

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Notes from the Community

Celebrating 30 Years Young! The Coalition for Hemophilia B Reaches a Milestone

Three decades ago, a small but dedicated group of families and individuals understood that people affected by Hemophilia B had unique needs. A generation later, we remain driven by the wants, hopes, and dreams of the families we serve in everything we do. Our mission, “to make quality of life the focal point of treatment for people with Hemophilia B and their families through education, empowerment, advocacy, and outreach,” has driven every aspect of our vision and programs.

The Beginning
John and Joyce Taylor founded the Coalition when their son John was diagnosed with severe Hemophilia B. Joyce’s father, a pharmacist, never knew he had mild Hemophilia until he passed away after being given aspirin at a hospital in the 1960s. Finding only limited resources on Hemophilia B, they recognized the need for an organization to serve this community. John flew all over the world and met with the top Hematologists and scientists in the field to learn all he could about Hemophilia B and to create a better life for patients.

Our Team
Today, the Coalition for Hemophilia B, a national non-profit, is headed by our Chair, Dr. David Clark. Dave, who has been writing much of the technical content in our quarterly Hemophilia B Newsletter (Factor Nine News) since the beginning, is known for his wonderful ability to make complex scientific concepts easy for patients to understand. Dave was a researcher involved with factor IX since 1992 when he joined American Red Cross Plasma Derivatives. He loves helping the Hemophilia community and is very involved in all aspects of the Coalition’s work. He has spoken at many national conferences including those held by HFA and NHF, and he has served on various committees with ATHN and other organizations.

Wayne Cook has severe Hemophilia B. He was one of the first to volunteer at the Coalition and has served as its President for the past 17 years. Wayne is an avid advocate for the community and a wonderful role model and mentor to many. He loves to help his blood brothers and sisters.

Kim Phelan, the Chief Operating Officer, is one of those rare individuals whose compassion is matched only by her passion. Kim previously worked in banking. “It’s really an odd story,” she said. “I received a call from a headhunter asking me to interview with John Taylor’s new startup company. I left a big bank to work in a small office with the feel of an old-style detective agency with just 3 people,” Kim said. The start-up became quite successful. Shortly after the Coalition was formed and we sent out the first Newsletter and started exhibiting. Kim recalls “the first time we exhibited, a mother came up to me and said “where have you been? All five of my boys died.” Kim just cried so hard. It was a very difficult time, but she fell in love with the people, quit the banking world, and joined the Hemophilia B community. It was where she was meant to be-there is no doubt.

Our Programs
The Coalition for Hemophilia B has grown substantially over the years, with a more members and programs than ever before. Our annual Symposium, which gets bigger every year, has been successful in both educating our community and bringing families together from all over the nation. It’s a very empowering event that creates strong, life-long bonds. Every year, we host two Hemophilia B Men’s Retreats, two Hemophilia B Women’s Retreats and over 12 Meetings on the Road throughout the United States. We also host a Teen/Mentor, Leadership &Advocacy program in partnership with experiential learning company Gutmonkey. In 2019, we held our first “The Beats” music program. We believe in the positive benefits of strong social networks. When people have regular contact with other families in similar situations, their healthcare outcomes are improved. Research also indicates that 30-60% of patients with Hemophilia experience depression, and music is one of the activities that helps counteract this effect and has proven to be especially therapeutic.

All of our programs offer scholarships. Other areas of support include our BCares Patient Assistance Program and The William N. Drohan Scholarship for people with Hemophilia B and their siblings. Our Let’s Play Nine golf fundraiser provides tweens and teens with equipment and golf lessons in their home states. The BVoice, our advocacy program, works to empower patients as we engage with other hemophilia organizations as well as other healthcare advocacy groups including APLUS, NORD, EveryLifeFoundation, Families USA, and many others. In 2021, we will focus on establishing health equity for underserved populations within our community.

The Needs We Serve
During the early part of the COVID-19 pandemic, we conducted over 30 patient and caregiver focus groups and spent over 100 hours with patients and their families on Zoom. The data we gathered from these efforts, combined with what we learned from our patient survey, are the driving forces behind the changes we are making. This year we are rolling out several new programs and services to strengthen every area of education and information. These include new newsletter features highlighting advocacy, women bleeders, mental health, and emerging therapies. There will be other new programs offered as well to address many needs. We continually challenge ourselves to grow, change, and meet the needs of the community.

Where We’re Going
Times are changing in the world of Hemophilia and we want to ensure that our members are educated and informed. This is going to be an amazing journey, and we are excited to be a part of it. The Coalition brings together some of the most dedicated professionals in the Hemophilia community for our members, and one of our goals this year is to strengthen our relationships with the Hemophilia Treatment Centers (HTCs) nationwide. We have wonderful relationships with many but think we can do better. Now that our team has grown, we will be able to focus on expanding these connections. There are so many dedicated and passionate individuals working at HTCs and we want to know them better. As we work together, we would also love to have them as speakers at our programs and events.

The Coalition for Hemophilia B is very proud of what we have accomplished over the years. Many of our achievements only occurred through cooperative efforts with valued partners like the Hemophilia Alliance and many others. We look forward to strengthening our relationships as we continue to serve our community. For more information, please visit our website www.hemob.org or email contact@hemob.org

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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
Jennifer Anders jennifer@hemoalliance.org 954-218-8509
Michael B. Glomb MGlomb@ftlf.com 202-466-8960
Johanna Gray, MPA jgray@artemispolicygroup.com 703-304-8111
Karen Bowe-Hause karen@hemoalliance.org 717-571-0266
Kiet Huynh kiet@hemoalliance.org 917-362-1382
Elizabeth Karan elizabeth@karanlegalgroup.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
Theresa Parker theresa@hemoalliance.org 727-688-2568
Mark Plencner mark@hemoalliance.org 701-318-2910
Ellen Riker eriker@artemispolicygroup.com 202-257-6670

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