October 2019 Newsletter

In this Issue…

Notes from Joe
· The Times They Are a-changin . . .

Alliance Update
· Our Library Has a Little of Everything
· Alliance Seeking Board Nomination

Payer Update
· Know Your Patients and Their Insurance

Notes from the Community
· NHF’s Bleeding Disorders Conference Brings the Community Together
· HTRS Announces Second Research Colloquium
· Update from the Hemophilia Alliance Foundation

Team Alliance Contact Information

Notes from Joe

The Times They Are a-changin . . .
By Joe Pugliese

We recently reprinted the bleeding disorders product catalog which has been distributed widely to treatment centers and chapters across the country. We have gotten some nice compliments on how the catalog is laid out and received some excellent feedback on how to improve it by being more consistent in referencing different products. I bring this up because we have additional copies of the catalog which we would like to get rid of before it becomes obsolete – please contact me if you would like more.

The product catalog will be obsolete soon enough because If I’m counting correctly, there are approximately 27 new products in the pipeline, including: 6 hemophilia A gene therapy products, 7 hemophilia B gene therapy products, 3 tissue factor pathway inhibitor (TFPI) products, 1 RNA interference product, 3 protein C or S inhibitor product, 2 subcutaneous, 2 additional EHL RFVIII, 1 implantable matrix, 1 EHL RFVIII which will start shipping in early 2020 and potentially a FVIIa which maybe here next year as well. There may be even more that I’m missing.

It is hard to really appreciate how remarkable the breadth, depth and speed of these developments are coming to our little community. The changes are transformative and of course, these improvements are as welcome as they are overwhelming. The decision tree for how to decide the most appropriate therapy for each patient is and will becoming even more daunting. The ATHN DATA Summit featured 15 posters all focused on assuring and/or documenting that the best outcomes for patients are found at federally-supported comprehensive hemophilia treatment centers, sometimes known as bleeding and thrombosis centers. There are also presently 10 active research studies being conducted by the HTC network to determine how to further improve outcomes for patients.

Ironically all of these advancements could seriously undermine the comprehensive care model that has made them possible. The comprehensive care model aggregated patients for clinical trials and focused the unique clinical talents of dedicated healthcare professionals. These new therapies will require the ongoing clinical care team that have made all of this possible, while changing the economics of how centers are able to fund this clinical care.

The Alliance is hard at work to understand the impact of these new treatments on HTCs and is working to develop reimbursement models that will support and strengthen the HTC network. As you know, 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 mission – and yours – remains the same even with these advancements.

Alliance Update

Our Library Has a Little of Everything

Have you visited the members section of the Alliance website recently? The meeting materials from the Fall members meeting in Portland, Oregon are now posted as part of a large library of presentations and resources. This is a great place for you to find information on audit and compliance, general 340B information, contract pharmacy, program income and more. In addition, we have recorded webinars that can be viewed on demand on your computer, tablet or phone. Finding documents or resources is very easy, once you login to the website, go to the members section and you will land on your dashboard page. From here you can navigate to all of the information provided to our members only.

The document portal is a vault with all of the presentations and webinars and you can search this area by type of document, author/speaker, date and more. The document portal is a great resource for new HTC team members who need information on the business side of the HTC and the 340B program. Please remember to have new employees apply for a username and password to the website so that they can access these documents and find out more about our upcoming events. Applying for a login is very simple and can be done form our home page (see below)

– –

Alliance Seeking Board Nominations
By Heidi Lane, PT, DPT, PCS, 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 January 2020. The interested applicant must support the Hemophilia Alliance mission, vision and programs, be willing to share their knowledge and expertise with the Hemophilia Alliance and be able to participate in bi-monthly board meetings. 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.

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.

Applicants or suggested nominees must be employed by a Hemophilia Treatment Center in good standing with the Hemophilia Alliance. Terms are for a two-year period not to exceed 3 consecutive terms. We seek to broadly represent our membership and are encouraging applicants from all regions and disciplines to apply.

Applicants should submit a letter of interest and resume or CV to Heidi Lane at Heidi.Lane@imail.org by October 30, 2019 for consideration by the nominating committee.

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

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?

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 heidi.lane@imail.org.

Payer Update

Know Your Patients and Their Insurance

Health Insurance Open Enrollment season has begun. Now is a great time to begin preparing and contacting your patients about their 2020 health insurance to determine if there will be changes that may impact the clinical and pharmacy services you provide.

November 1st kicks off the open enrollment period for the ACA marketplace plans, which goes until December 15th. Given all the uncertainty in the health insurance market, some plans’ premiums are increasing. Despite that, people may be able to enroll in more generous or less expensive coverage than last year depending on their state and individual financial situation. It will pay to shop around. Given the time frame to enroll and the premium changes, we encourage you to contact your patients enrolled on ACA plans to be sure that they reenroll in coverage before December 15.

Some additional items to consider about the ACA for your patients:

  1. Even though the ACA Open Enrollment Period is over for 2019, your patient can still enroll in or change a Health Insurance Marketplace plan if they have a life event that qualifies them for a Special Enrollment Period. Please see Healthcare.gov for complete details.
  2. If your patient qualifies for Medicaid or the Children’s Health Insurance Program (CHIP), they can apply anytime.
  3. Depending on their state, the ACA Marketplace may show both “regular” ACA-compliant plans along with short-term, limited duration plans that do not have to follow the ACA rules (i.e., short-term plans don’t have to cover prescription drugs and most have low lifetime and annual caps). Please remind your patients that they need to look closely at the coverage rules for any plan they are considering.

Some additional items to consider for your HTC include:

  1. Do you have a solid process in place to track your patients’ insurance?
  2. Do you know if their insurance is a fully insured or self-insured plan?
  3. Do you know if your Pharmacy Program can dispense clotting factor?
  4. Do you need the support and assistance from the Hemophilia Alliance to enhance your Pharmacy Program and insurance contracting efforts?

The Alliance Team is here to help. We have developed a Patient Insurance Tracking Spreadsheet and Insurance Questionnaire to assist in your efforts. Please contact one of the Alliance Team Members to discuss how we can assist you in your Payer Relations and Insurance Contracting efforts and always remember We Work for You!

Notes from the Community

NHF's Bleeding Disorders Conference Brings the Community Together

At the Opening Session of the National Hemophilia Foundation’s (NHF) Bleeding Disorders Conference, October 3-5 in Anaheim, CA, outgoing CEO Val D. Bias spoke of the importance of speaking up in advance of the changes in treatment paradigms and access to care. Making your voice heard, said Bias, “keeps our community together.”

After a short video tribute that highlighted Bias's lifetime of service to the bleeding disorders community, Bias thanked the attendees for trusting in his vision and leadership during his eleven years of leading NHF, and for stories they shared with him, which, he said, "gave us the information we needed to plan for the future."

Understanding the experiences of living with a bleeding disorder is central to a new NHF program that Bias introduced at the conference, MyBDC. MyBDC is a community-powered registry that aims to capture the experiences of people living with a bleeding disorder and their family members and caregivers over a long period of time. The information will allow researchers to gain a better understanding of how a bleeding disorder affects individuals and families – directly from the people themselves. “The story of the bleeding disorders community needs to be written by us, not for us,” Bias told attendees.

NHF's Bleeding Disorders Conference is NHF's signature event, and brings all members of the bleeding disorders community together. Affected individuals and their family members, NHF chapter leaders and staff, physicians and researchers, nurses, social workers, and physical therapists all gather to gain valuable education, network, and receive support.

The conference is divided into twelve tracks, including the tracks for medical professionals. Affected family members can find sessions tailored specifically to them, including von Willebrand disease; sessions for adult men, teens, women with bleeding disorders, spouses and partners, parents and caregivers, and rare bleeding disorders.

The conference concluded with NHF’s Award Ceremony, which paid homage to the medical professionals, chapter leaders, and volunteers who do exceptional work to benefit the community. And at NHF Final Night Event, attendees gathered to eat, dance, and celebrate together.

NHF is grateful to Platinum Sponsors Bayer HealthCare, CSL Behring, Genentech, Novo Nordisk, Pfizer Hemophilia, Sanofi Genzyme, and Takeda; and Bronze Sponsors BioMarin, Hemabiologics, and Octopharma for their invaluable support.

HTRS Announces Second Research Colloquium

The Hemostasis and Thrombosis Research Society (HTRS) will hold its second biennial HTRS Research Colloquium (www.2020rc.org) from April 21-22, 2020 at the Hyatt Regency Chicago, just prior to the THSNA 2020 Summit. The Colloquium, titled “Developing a Sustainable Career in Hemostasis and Thrombosis,” is a 1.5-day education and career development event for a combined audience of basic scientists/translational researchers and clinicians/physician-scientists interested in non-malignant hematology.

The Colloquium targets early-stage investigators (MDs, DOs, MD/PhDs, and PhDs) who have completed fellowship and/or postdoctoral training and are working to build sustainable academic research careers in hemostasis and thrombosis. Third- or fourth-year medical fellows and/or postdocs may apply to attend if they can demonstrate an established commitment to building a research career in hemostasis or thrombosis upon completion of training. Early-stage investigators are encouraged to apply for Travel Awards by January 24, 2020. Travel Award recipients who wish to stay on in Chicago after the Colloquium to attend the THSNA 2020 Summit can also apply to have their extended lodging fees reimbursed by HTRS.

HTRS (www.htrs.org) is the leading North American professional society dedicated to research, mentoring, workforce development, and continuing medical education for physicians, investigators, and all health care professionals interested in advancing care for people with hemophilia and other hemostatic and thrombotic disorders. With the generous support of organizations like The Hemophilia Alliance, a Gold Level Supporter of the 2020 Colloquium, HTRS can offer events like this that bridge the traditional divide from “bench to bedside” and inspire innovative, collaborative research in our field. Connecting early-stage investigators directly to a North American network of experienced mentors, peers, and other essential collaborators supports the growth of a healthy workforce for U.S. hemophilia and thrombosis treatment centers now and in the future.

For more information about the Colloquium or to register or apply for a Travel Award, please visit the 2020 HTRS Research Colloquium website (www.2020rc.org) or contact HTRS (htrs@versiti.org).

Update from the Hemophilia Alliance Foundation

The Hemophilia Alliance Foundation will be posting its 2020 Grant Guidance on its website on December 1, 2019. Since 2009 the Alliance Foundation has been making a positive difference in the community, helping chapters, centers, and national community organizations build capacity and support and expand their missions. Organizations interested in submitting applications should review the Grant Guidance thoroughly before finalizing their applications as there are several changes to this year’s application. The guidance for 2020 may be found at the Foundation’s website on December 1. Applications 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.

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