Notes from Joe
- Remembering Patricia Dominic
It is with a heavy heart that I share that Patricia Dominic passed away on November 21, 2022. Trish leaves a legacy of innovation, compassion, and success that dramatically improved the lives of the bleeding disorder community around the world. Under her leadership, HoG was an innovative organization that was highly effective at fund raising, leading to significant support of numerous organizations and distribution of factor replacement therapy around the world through the World Hemophilia Foundation. Not content with simply enjoying the success she created at Hemophilia of Georgia (HoG), she was visionary and was one of the founders of the Hemophilia Alliance, the Hemophilia Alliance Group Purchasing Organization, and the American Thrombosis and Hemostasis Network (ATHN) and she funded the creation of The Alliance Pharmacy. The bleeding disorders community will continue to benefit from the many programs and organizations she helped to create. Thank you, Trish! You will be missed by so many. See here and here to learn more about Trish’s accomplishments.
- Improving Care and Improving Resources
by Joe Pugliese, President and CEO
Ironically, I had written the article below prior to learning about Trish. She was a fierce believer in supporting the gold standard of care and supporting this network, and I was honored to be able to work with her for so many years.
It is very rewarding to hear the patient community respond positively to the efforts of the Alliance and its members. I think the merits of the national network of HTCs are obvious. As just one example, today we have a plethora of treatment options, with many more coming. These advancements are only possible because of the organized nature of our care, which was formed at the insistence of the patient community.
As documented many times, the HTC network has raised the quality of life for the bleeding disorders community on a continuous basis. Continuous improvement leads to continuously higher expectations, which themselves lead to all of us always looking for ways to bring more improvements to the community. As a few examples, I have recently heard about a variety of ways to improve care, including stand-alone clinics for women with bleeding disorders and mental health services with staffing at local chapters.
But we also have to recognize that improvements to care – or frankly, even maintaining the standard of care we have today – will be a challenge unless we can increase resources available to centers. All this when the new therapies on the horizon may put even more downward pressure on the funding stream available to support current services. I would suggest the best way to preserve the gains we have enjoyed and the progress that is still to come, is to focus on supporting our current network. This is our commitment at the Alliance to all of our members and the patients we serve. I encourage any of you with ideas about how to improve care and improve resources for centers to reach out to me. Remember: we work for you!
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 two vacancies on the board of directors, with the term beginning January 2023. For consideration by the nominating committee, applicants are to submit a letter of interest and resume or CV to email@example.com by Sunday, November 27, 2022. 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.
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.
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.
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 firstname.lastname@example.org.
- HTC Wall of Walkers 2022 Update
by Karen Bowe-Hause, Director Community Relations
With the goal of encouraging HTC participation in the NHF Unite Walk program, the Hemophilia Alliance is once again supporting the program with the HTC Wall of Walkers campaign. As a reminder, as a member HTC of the Hemophilia Alliance, all HTC teams that raise $1,000+ for their local Walk program will be recognized by NHF & the Hemophilia Alliance as being a part of our Wall of Walkers. These teams will receive the following:
- Recognition during the Unite Rally Chapter and Community virtual training
- Recognition from the Hemophilia Alliance in newsletter publications and webinars
- Unite Walk Chapters have been broken up into five respective market groups. The top HTC fundraising team in each group will receive a $1000 scholarship to support a staff person attending the NHF Bleeding Disorders Conference to be held in Washington, DC August 17-19, 2023.
So far this year:
- 41 HTC teams are participating (2021 had 28 teams)
- The HTCs have raised $38,000 (2021 $27,000)
- HTCs have recruited >300 walkers (2021 211)
- There is still 1 more walk to go this 2022 Walk season!!
The Hemophilia Alliance wishes to thank all of the HTCs for their participation and support of NHF and the local Chapters through the 2022 Unite Walk Program. The winners of the travel scholarships will be announced at the Unite Rally Awards Ceremony the beginning of December.
- Operations Update
The Job Board on our website is up and running. We have several positions posted on the board and continue to add new positions. For questions about posting to the board, please review our recent newsletter article here.
If you are short of pharmacist CE credits for 2022 and you did not attend the 1st Annual Hemophilia Alliance Pharmacist CE convention in-person or virtually in January 2022, the programs and credits will continue to be available as a home-study option. They can be accessed through the Hemophilia Alliance Website Document Portal under the CE Credits link and will be active through 2025. If you don’t have a sign-on, contact Theresa@hemoalliance.org.
Update on the 2022 Midterm Elections
by Johanna Gray, Ellen Riker and Issie Karan, Advocacy Consultants and Legal Counsel
Historically, midterm elections have proved difficult for the political party in power. Coming into the 2022 elections, Democrats occupied the White House, narrowly controlled the House of Representatives, and effectively controlled the evenly-split Senate via tie-breaking votes by Vice President Harris. Given the challenging economy and fallout from COVID-19 pandemic measures, many pundits predicted Republicans would gain significant seats in Congress.
The 117th Congress: Current Congressional Make-up
Current Outlook for the 118th Congress
However, the 2022 election results were much more mixed. Democrats retained control of the Senate, winning 50 seats in the chamber so far. Senate races in Alaska and Georgia both will proceed to runoff elections. In Alaska, the two candidates in the ranked-choice runoff with the most votes are both Republicans, giving the party 49 seats. In Georgia, the runoff election between Democratic Senator Raphael Warnock and Republican challenger Hershel Walker is scheduled for December 6, 2022. In the House, there are 3 races still uncalled but Republicans will have the majority, with at least 218 seats and as high as 221 to a Democratic minority of 212-215 votes.
2022 Ballot Initiatives on Health Care
In some states, health care was on the ballot. Most notably, South Dakota passed a state ballot initiative amending the state constitution to expand Medicaid eligibility. Oregon amended its Constitution to add that the state “ensure that every resident of Oregon has access to cost-effective, clinically appropriate and affordable health care as a fundamental right.” And Arizona passed a proposition that reduces maximum interest rates on medical debt from 10 percent to no more than 3 percent annually and increases the amount of assets exempt from debt collection.
Impact of Election on Remainder of the Year
At the federal level, Congress now enters a packed lame-duck session. Before December 16, 2022, Congress must act on government funding for all federal programs for Fiscal Year 2023, as well as annual defense authorization and a number of other “must-pass” priorities that matter to outgoing Members of Congress. Starting work on this package has been delayed until it was clear which party would control the chambers next year, so there are few details that have been released so far. We are closely monitoring this work and will both advocate around any relevant issues for HTCs and bleeding disorders patients and will update members as things wrap up for the 117th Congress.
The other thing happening now is Congress getting organized for the new Congress that will begin in January. Even separate from the shift from Democratic to Republican control of the House, there will be a number of new Committee chairs and ranking members throughout the House and the Senate, each of whom will come with their own priorities for their work. We will update members as all of this gets firmed up and as we refine our advocacy strategies for next year.
Alternative Funding – an increasing concern
by Jeff Blake, Senior Vice President Payer Relations
We have heard from several member Hemophilia Treatment Centers (HTCs) about a concerning trend with self-insured employer sponsored health plans. This trend named Alternative Funding Model, excludes high-cost drugs specialty drugs from health insurance coverage and redirects access for these drugs to Manufacturer Patient Assistance Programs (PAPs). Historically, PAPs have been used to support patients with short-term gaps in health insurance and are not set up as long-term solutions for patient access to medication.
A recent national survey shows that up to 40% of self-insured employer sponsored health plans have either implemented or are considering implementing Alternative Funding. During this open enrollment season, we have heard from several HTCs that Alternative Funding is impacting more patients.
We have an Alternative Funding Working Group that includes NHF and HFA. Our working group has developed potential legislative and non-legislative strategies to combat this Alternative Funding trend.
We need your help to enhance our efforts to combat Alternative Funding. If you have patients that have encountered this issue or when you do encounter this issue, please contact a member of the Hemophilia Alliance Team with the following information:
- Bleeding disorder product prescribed
- Manufacturer Patient Assistance Program
- Company that contacted you to move your patient to the Manufacturer Patient Assistance Program
- A copy of the employer sponsored Health Plan Document, Summary Plan Description or Benefits Booklet
Please contact us with any questions or if you would like to discuss Alternative Funding in more detail.
Notes from the Community
- Hemophilia Alliance Foundation: Announcing Project and Patient Assistance Grants!
Starting December 1st applications will be available on-line for the Hemophilia Alliance Foundation 2023 Project and Patient Assistance Grants. Since 2009, the Alliance Foundation has awarded over $4 million in grants to help 140+ chapters, treatment centers, and national community organizations serving persons with heritable bleeding and thrombotic disorders. The cycle of funding currently available is for the following two types of grants:
- Project grants meant to enable eligible organizations to build on their capacity to achieve and expand their mission
- Patient assistance grants meant to render direct patient/family financial assistance through eligible organizations to alleviate financial hardship as a result of, or which impacts on, the management of a bleeding or thrombotic disorder.
To be eligible the applicant organization must serve persons with heritable bleeding and thrombotic disorders and operate under IRS tax exemption 501(c)(3) or 170(c)(1) or other nonprofit status. The deadline for application submission is January 31, 2023, and must be submitted directly on the Hemophilia Alliance Foundation website.
For 2023, the ceiling for grant applications is as follows:
- Local applicants (e.g., chapters/member organizations, HTCs): $8,000
- National organizations, and the eight HHS-designated federally-funded regional core coordinating centers: $10,000
Applications for project grants should demonstrate clear, measurable outcomes and a strong commitment to the heritable bleeding and thrombotic disorders community. The patient assistance grant application has been shortened this year, but requires submission of the organization’s patient assistance policy.
Organizations interested in submitting applications should review the 2023 Grant Guidance thoroughly before finalizing their applications. See our website at https://hemophiliaalliancefoundation.org/grant-information-main/project-patient-assistance-grant-information for more information and apply on-line today!
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 Brenda Riske, HAF Chair, at email@example.com! We can direct you to additional resources that will help you submit a strong application.
- United States Hemophilia Treatment Center Network Launches Website
by Christina Ashburner, USHTCN Administrator
The United States Hemophilia Treatment Center Network (USHTCN) is excited to announce the launch of the USHTCN Website, which is now live at www.ushtcnetwork.org.
As collaborative partners in the care and treatment of individuals with bleeding and clotting disorders, we invite you to view the website and share with others throughout the bleeding and clotting disorders community.
The mission of the USHTCN is to represent, support, and advance national initiatives with the federally-designated Hemophilia Treatment Centers (HTCs), the USHTCN Regions and related stakeholders to promote efforts to deliver integrated, comprehensive, multidisciplinary, optimal care to individuals and families affected by hemophilia and related bleeding and clotting disorders.
The USHTCN is led by a Network Council which is comprised of leadership from each Region. Regions are uniquely responsible for ensuring that HTCs fulfill federal grant requirements, promoting equitable access to care and surveillance, designating new HTCs, and ensuring the sustainability of HTCs.
The USHTCN works collaboratively with HTCs and external partners to harmonize policies and procedures, respond to urgent needs, promote HTC sustainability, and meet patient and family needs. The USHTCN represents all HTCs outside of specific requirements of federal grants and partner organizations, amplifying the voice of individual HTCs and creating an identifiable entity for stakeholders and others who want to seek HTC input, get HTC feedback or propose collaborative projects.
We welcome your feedback and look forward to our continued partnerships in the future. Should you have any questions, have content you would like to include on the website, or would like to discuss the USHTCN website further, please reach out to USHTCN Administrator Christina Ashburner 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: