Notes from Joe
Hang in There
by Joe Pugliese, President and CEO
“We are delighted to announce that the Alliance Board voted to fund the WFH International Hemophilia Training Centre (IHTC) Fellowship Program for up to $100,000. IHTC is the driving force for establishing comprehensive, multidisciplinary care for bleeding disorders in countries with inadequate access. We have seen its impact over a number of years – an impact that is transformational for the fellows and for their communities, as well as for the staff of the centers that provide the training. Healthcare providers like Dr. Tessa Nwagha from Nigeria, who you met during the recent webinar, leave the program inspired and motivated to not only take better care of their patients, but to advocate for greater government investment in hemophilia care. She says what she learned and experienced at Chapel Hill is what motivated her to serve as Medical Advisor to the Hemophilia Foundation of Nigeria and to support their efforts to secure a government commitment to fund prophylaxis in children under the age of five. “ Jennifer Laliberté, WFH
The board voted to fund this important program on May 26th, which was the same day Dolores Singh, passed away. We felt it was appropriate to make the donation in her memory, since her son, Sean, has been a driving force for helping the Alliance achieve its mission to support members in delivering care to the bleeding disorder community here in the United States and to assist in training health care providers around the world.
We have every other week team calls with all Alliance employees and consultants. During the last call, Ellen Riker suggested that boring would be nice, a sentiment I am sure that is widely shared. I am equally sure we can forget about boring anytime soon. The war in Ukraine continues – with many policymakers here and abroad pleased with the pleased with the progression of the Ukraine war. If this is success, I hate to see what a failure looks like. We unfortunately do not have to go elsewhere to see senseless violence, whether it is in Uvalde, Buffalo, Waukesha, or the subways in New York. Our prayers go out to the victims, families, and all of us as we try to cope with a seemingly unprecedented avalanche of news that goes from bad to worse.
I draw strength from two things. One, our parents and grandparents lived through two world wars, at least one pandemic and the great depression. (For the youngsters in the audience great grandparents) They lived through all of that and built a thriving nation that has made the whole world safer, healthier, and wealthier than it would be without them. Two, I look to my family, friends, and colleagues. Karen and I have been together for 48 years. Our children and grandchildren help keep us centered. The line between my friends and my colleagues is often blurred, which is one of the benefits of being in this space for a long time. I recently read a book Mountains beyond Mountains, about Paul Farmer, MD. I think I can safely say he was a remarkable individual. Chris Roberson from IHTC sent me a copy of the book. It has been out for a couple of decades, not sure how I missed it. If you have not already read it, I strongly recommend you do.
I recently attended the HFA, WFH and the Alliance growth initiative meetings. They all remind me of all the everyday heroes and good people that I have had the pleasure of working with for the last forty plus years. The national and international news is bleak, but at the personal level I see many dedicated people from all parts of the community in the US and around the world uniquely focused on making the world a better place. There has never been a better time to focus on the positive: in our community, the treatments have never been better and the desire to improve outcomes for everyone in the bleeding disorders community has never been stronger or more effective.
Focusing on the good things that are happening everyday might qualify as boring but boring can be very good.
Alliance Board Update
New Board Members
by Eric Gray, Vice Chair
The mission of the Hemophilia Alliance is to work “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”. Per the Hemophilia Alliance by-laws, “The Board of Directors should, to the extent feasible, include members representative of the eight (8) regional networks of hemophilia treatment centers, types of programs, expertise, and experience.”
We want to sincerely thank all applicants for their interest in serving on the board. We thoughtfully reviewed and considered all applicants in the context of the Mission and by-laws, seeking to most broadly represent our membership as well as diversify our expertise and insight to most strategically address challenges to further our mission.
We are pleased to announce Dean Hindenlang and Leigh Carpenter have been elected to serve on the Board, with their terms beginning June 2022. Dean is the Director of Public Policy, Advocacy and Community Impact with Cascade Hemophilia Consortium in Ann Arbor, Michigan. Prior to becoming employed, Dean was the President of the Board of Directors. He has a Ph.D. in Public Policy and Administration and has held multiple roles in non-profit, University and government organizations. Leigh is the Vice President of Pharmacy Operations for Hemophilia of Georgia in Sandy Springs, Georgia. Leigh has been with HoG for over 20 years and assisted in the growth of their 340B program, expansion of contract pharmacy relationships and obtaining dual specialty pharmacy accreditation status. They are both excited to advocate for patients both on a local and national level, support member HTC’s and serve on the Board.
Again, we can’t thank enough the individuals who applied to serve on the board. We may be reaching out to you to assist in serving the Alliance in other ways.
Harmony in Hemophilia
by Karen Bowe, Director Community Relations
The Hemophilia Alliance is again collaborating with NHF in support of their 2022 Unite for Bleeding Disorders National Walk campaign and is launching the 2nd annual HTC Wall of Walkers. This initiative is meant to build upon the primary goal of Harmony in Hemophilia which is to enhance or build relationships between HTCs and Chapters. The objective of our support is to increase HTC participation in the NHF Walk program. To this end, please find the 2022 Walk schedule here for your convenience. NHF has again created Walk magnets that can be distributed to your patients during routine clinic visits to encourage support for your walk. If you would like to receive magnets, please send an email with your request to firstname.lastname@example.org and I will pass along your information to NHF.
All Alliance member HTC participating teams will be acknowledged on the HTC Wall of Walkers located on the Unite Day landing page on NHFs website. The HTC team name along with photos or a logo will be featured in a scrolling fashion and the site will be continuously updated throughout the walk season. In addition, a travel grant to the 2023 NHF Bleeding Disorders Conference will be awarded to 5 member HTCs raising the most funds for their local Chapters.
The Hemophilia Alliance thanks everyone for your participation and efforts to benefit your local Chapter.
HTC Growth Initiative
by Karen Bowe, Director Community Relations
The Hemophilia Alliance continues to explore ideas which ensure sustainability and growth of our HTC pharmacy programs. With the intent of identifying potential ways to overcome obstacles preventing member HTCs from growing their pharmacy programs to the next level, the Alliance launched the HTC Growth Initiative project in late 2021.
After 6 months of virtual meetings, the final HTC Growth Initiative meeting was held May 15-17 in Denver, CO. Fifteen attendees from eleven HTCs spent 2 days networking and listening to presentations designed to help overcome obstacles preventing growth within pharmacy programs. We had very interactive group breakout sessions in which we reviewed common themes from SWOT analysis data we’ve collected from the participants over the course of the project. In each group, we discussed these themes in depth and shared experiences and outcomes from a variety of different perspectives.
The Alliance team will now begin individual Center reviews on each SWOT analysis and, with the intent of increasing member engagement, will work with each member to identify critical actions the HTC needs to take to overcome obstacles identified in the analysis and create a strategic plan for growth. The Alliance has received very positive feedback from program attendees and plans are being considered to run a second session in the second half of 2022.
HTCs and Chapters: Partners in Education and Outreach
by Elizabeth “Issie” Karan, Legal Counsel
Hemophilia Treatment Centers (HTCs) ask the Hemophilia Alliance how they can support local chapters. As with all grants management questions, the way the support is structured matters. Below we review relevant guidance and provide suggestions for compliance.
Education and outreach are crucial components of the work of Regional Hemophilia Networks. The Notice of Funding Opportunity (NOFO) Announcements, which fund the Regional HTCs, includes language requiring HTCs to utilize program income to support education and outreach. Specifically, page 5 of the 2017 NOFO states, “reportable net program income is to be used for patient health, education, and supportive services necessary to provide comprehensive care to patients with hemophilia or related clotting and bleeding disorders served by the HTCs.” The NOFO released this year, at page 10, indicates that HTCs should have skill and knowledge used in the care of individuals with bleeding disorders, including “patient education and engagement in care.” The language from the NOFOs make clear that education is a required piece of the scope of the HTC grant.
Despite this, if an HTC wants to collaborate with any external organizations, the HTC must appropriately oversee these programs and activities in accordance with the grant rules. For example, Uniform Grants Guidance prohibits donations using federal funds or program income under 45 CFR § 75.434. This section states that, “Costs of contributions and donations, including cash, property, and services, from the non-Federal entity to other entities, are unallowable.” Additionally, 45 § 75.342, on monitoring and reporting program performance, provides that HTCs are responsible for oversight of the operations of award supported activities, and must cover each program, function or activity.
We recommend that HTCs structure support to Chapters in the form of a simple agreement which outlines the activities the Chapter will undertake using the financial support and provides information back to the HTC about how the funds were spent and what was accomplished. If you need examples of how these agreements can be structured or assistance, please contact the Alliance team.
Alliance Advocacy Update
by Johanna Gray, Advocacy Consultant
The Alliance advocates throughout the year on behalf of HTCs and their patients, and I’m pleased to share two recent comment letters that we have done as an example. Policymakers in Washington and in states across the country have been focused on pharmacy benefit managers (PBMs) and their practices that impede access to care and raise costs for individuals, employers, and payers. Of course, this is not a new story for us – for years, people with bleeding disorders have been forced to switch products due to narrow formularies and HTCs have been cut out of networks in favor of a specialty pharmacy owned by the PBM. As a result, the Alliance was glad to submit two recent letters on the topic:
- The first is a letter in response to a Federal Trade Commission request for information about PBMs. The FTC is gathering information on a variety of anti-competitive practices to inform their work and the Alliance submitted a detailed letter outlining all the ways that these practices harm our community.
- The second is a thank you letter to the Governor of Vermont, who recently signed into law a state bill to restrict PBM activities. He was encouraged to veto the legislation by some of our colleagues in the PBM world and we thought it was important to thank him for enacting the legislation and highlight HTCs serving patients in the state.
These are just two examples of Alliance activities on behalf of our members. We are also still working on implementation of the Hemophilia SNF Access Act, fighting copay accumulator adjustment programs, keeping an eye on all drug pricing and potential 340B reform actions, and developing a strategy to prohibit the new alternative funding mechanism, among other issues. Please contact me with any questions or if you have other ideas for how the Alliance can advocate to support your center.
Payer Team Update
The last few years has been very busy for the Payer Team. We have accomplished a lot, but there is so much more that we can do. Below is a summary of the results of bringing business back to HTC pharmacy programs since 2018.
|Total new units 1/1/2018 – 4/30/2022
|Current opportunities/potential new units
To continue our success and bring more business to HTC pharmacy programs will require teamwork. Payers are contacting us daily to discuss potential solutions to better manage and contain the cost of bleeding disorders care. As you may know, we tell payers the best solution is to have an integrated model of care that our member HTCs provide that includes medical and pharmacy services. Payers are listening to our message and bringing more potential opportunities to us. The chart above speaks for itself – in 4 ½ years we have been able to redirect over 40,000,000 units to HTC pharmacy programs and we currently have payer opportunities of almost 78,000,000. These are significant opportunities to grow your HTC pharmacy program business and enhance your revenue to support your HTC.
So, what do we need to do to bring more business to HTC pharmacy programs? Several things come to mind:
- The Hemophilia Alliance Team is here to help and assist you! Contact a member of the Hemophilia Alliance Team to discuss enhancing and growing your Pharmacy Program.
- Stay focused and organized. Gather insurance and prescription data on your patients that do not use your pharmacy program. Our HTC Patient Insurance and Bleeding Disorder Product Utilization Spreadsheet is a tool you can use to remain organized and focused on growing your pharmacy program.
- We must be responsive to payers to finalize potential opportunities. We typically have 7 – 10 business days to respond to payer opportunities. How can you help? When a member of the Hemophilia Alliance team contacts you about an opportunity to grow your pharmacy business, be responsive so we can respond in a timely manner to payers.
- Review and sign the Hemophilia Alliance Network Services (HANS) PPO Agreement. We will work with you and your contracting/legal teams to finalize this agreement. This agreement will provide you the opportunity to participate in payer contracts that we have negotiated. We currently have 40 members that have signed the HANS PPO Agreement. To have an effective national network of HTCs and their pharmacy programs we need at least 80 members to sign the HANS PPO Agreement.
If you have any questions, please contact a member of the Hemophilia Alliance Team.
Notes from the Community
Reminder: Announcing the Hemophilia Alliance Foundation 3rd Annual Innovation Grant
The Hemophilia Alliance Foundation (HAF) is excited to offer its 3rd-annual funding opportunity for the Innovation Grant, previously known as the “Large” Grant. This new name better reflects the intent of the grant and the opportunity it provides. This funding will allow an organization to fund a larger-scope project than what they are able to do with current HAF smaller grants. This will be a one-year grant with projects completed within the year.
The Grant Guidance and online application form are available here: https://hemophiliaalliancefoundation.org/grant-information
The goal of this grant is to encourage larger scale, unique, and innovative projects, as well as to serve the community with resources that will improve the lives of patients with inherited bleeding and thrombotic disorders. With this larger funding amount, the Innovation Grant aims to encourage projects that are larger in scope, innovative, and generate resources that can be shared with the whole community.
- A non-profit 501 (c) (3) organization
- An organization that has a history and documented track record of serving the inherited bleeding and thrombotic disorders communities
- Completion of the application with all required documents attached
- The grantee will be responsible for a conference call meeting with HAF board members during and/or after project completion to discuss the process (e.g., what worked, what could be improved)
- These funds may not be used in conjunction with grants from the Hemophilia Alliance.
Collaborative projects between more than one organization are encouraged and given higher priority.
Grant funds will NOT be awarded for the following costs:
- Administrative or overhead costs may not exceed 8% of budget
- Basic, laboratory research, or related equipment
- Underwriting or sponsorship of fundraising events
- Construction costs
- Recurring costs, such as:
- Office rent and utilities
- Monthly phone bills for the applicant organization
- Salaries of staff not related to the grant application
Applications are currently being accepted through June 30, 2022. The project period will begin on September 1, 2022 and conclude by August 30, 2023.
If you have any questions about the Innovation Grant process, please contact the Hemophilia Alliance Foundation Grant Committee Co-Chairs, Amy Marquez, at email@example.com, or Stephanie Raymond, at firstname.lastname@example.org.
Team Alliance Contact Information
We work for you! Please don’t hesitate to contact any of us with any questions or concerns: