In this Issue…

Jeff Weighs In

Marketing and Operations Team Update
· Spring Is In The Air
· Upcoming Webinar and Meeting Schedules

Advocacy and Legal Update
· Hill Day Alumni’s Comic Book, “What is Factor 8?”, Featured on the News

Member and Community Relations Update
· HANS Agreement with Emerging Therapy Solutions (ETS) for Gene Therapy Products

Washington Update
· HHS Final Rules Strengthen Protections for People with Bleeding and Clotting Disorders
· Biden Administration Releases Final Rule to Crackdown on Harmful “Junk Insurance” Products

Notes from the Community
· Hemophilia Alliance Foundation Announces Innovation Grants
· Mental Health Art Contest for Adolescents for Adolescents with Heavy Menstrual Bleeding – A Quality Improvement Initiative
· 4th Annual HTC Unite for Bleeding Disorders National Walk Challenge Update

Team Alliance Contact Information

by Jeff Blake, President and CEO

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• Spring Is In The Air

by Marketing & Operations Team

Last month, our annual Spring Members Meeting and Hill Day in Washington D.C. brought together members from across the nation for a series of productive discussions, informative presentations, and successful advocacy efforts. The event was marked by beautiful weather, engaging speakers, and memorable moments, culminating in a heartfelt retirement celebration for Joe Pugliese.





According to our post-event survey, 95% of attendees found the speakers to be highly informative and engaging, while 92% felt that the topics covered were relevant and valuable to their work. The networking opportunities were also highly rated, with 88% of respondents stating that they made meaningful connections during the event. One of our more important questions on the survey was “Do you prefer to have a member meeting combined with Hill Day or separate?” 66% of you chose to keep the two together.

Hill Day was a standout success. Our members took to Capitol Hill to meet with lawmakers and advocate for the bleeding disorders community. The preparation and dedication of our members and staff paid off, as they effectively communicated our positions and built valuable relationships with key decision-makers.

The event concluded on a celebratory note with a retirement celebration honoring Joe Pugliese. Joe’s contributions to our organization over the years have been immense, and the celebration was a fitting tribute to his dedication and hard work.





As we reflect on the success of this year’s Spring Members Meeting and Hill Day, we are inspired by the energy and commitment of our members and the Hemophilia Alliance Team. The informative sessions, and productive Hill Day meetings have left us motivated and well-prepared for the challenges and opportunities ahead. We work for you!

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• Upcoming Webinar & Meetings

MEETING	DATE
Bayer Webinar [REGISTER NOW]	June 5, 2024 @ 1:00pm EST
Nurses CE Conference [ONLY VIRTUAL OPTION IS AVAILABLE]	June 10 – 12, 2024
Fall Members Meeting [REGISTER NOW]	October 9 – 11, 2024
Physicians and Business Administrators Meeting [REGISTER NOW]	November 14 – 17, 2024

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Hill Day Alumni’s Comic Book, “What is Factor 8?”, Featured on the News
by Elizabeth ‘Issie’ Karan, Legal Counsel

Earlier this year, the Cordes Family participated in the Hemophilia Alliance’s Hill Day with their Hemophilia Treatment Center, Center for Bleeding and Clotting Disorders at Children’s Minnesota, in Minneapolis and now have achieved a bit more fame while continuing to educate others about bleeding and clotting disorders.

One day after school, Emmett Cordes created a comic book explaining how his condition and treatments work. With some help from his parents, Melissa and Caleb, the Cordes Family realized that the comic book could help other people – both kids like Emmett and Members of Congress – understand bleeding and clotting disorder better. With some help from the team at the Center for Bleeding and Clotting Disorders at Children’s Minnesota, the local CBS news affiliate filmed a segment with the entire Cordes Family to help get their message to the public.

I had the pleasure of joining the MN/IN team for the Hemophilia Alliance Hill Day. In addition to the Cordes Family, Justin Nelson-Deering, Director of Ambulatory Services at Children’s Minnesota, Amy Marquez, Operations Director at the Center for Bleeding and Clotting Disorders / MN Health Fairview, Dr. Kyle Davis, MD, Pediatric Hematologist-Oncologist with the Indiana Hemophilia & Thrombosis Center were part of our team. Below, you can see these dedicated advocates delighting Senators Amy Klobuchar and Tina Smith, and staff with Representative Angie Craig. The Hemophilia Alliance team thanks this team and everyone who took time to participate in Hill Day 2024!

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HANS Agreement with Emerging Therapy Solutions (ETS) for Gene Therapy Products
by Angela Blue, Director Member and Community Relations

The Hemophilia Alliance is excited to share details of the newest HANS opportunity available to our members for gene therapy products! The agreement is available through a new addendum to the Hemophilia Alliance Networks Services (HANS) agreement. We are asking all of our member HTCs to consider signing onto HANS to access this new agreement in order to be in-network to provide gene therapy infusions to your patients.

The Hemophilia Alliance presented a webinar on May 14th in collaboration with Emerging Therapy Solutions (ETS). The webinar provided information and answered questions about the new agreement. A recording of the webinar can be found here.

Emerging Therapy Solutions (ETS) is a national entity connected to the Synergie Medication Collective. ETS focuses on high-cost services, cell and gene therapy, transplants, and other complex healthcare cases. ETS has relationships with national payers and currently has over 2,000 plan/payer contracts. Their client base currently includes 27 of the 32 Blue Cross and Blue Shield Plans across the country and they are aspiring to expand their client base over the next several years. ETS helps Providers by providing a simplified contracting process, efficiency in claims processing, and promotion of provider programs, like HTCs, within their payer networks.

To review, the Hemophilia Alliance Network Services (HANS) is a legal entity established in 2017 to enable the Hemophilia Alliance to contract on behalf of participating members on a national level. Hemophilia Alliance member HTCs can participate at no cost and are able to opt-in or opt-out of specific contracts as they wish. To access the new addendum including specific details about pricing and reimbursement, an HTC must be signed on to the HANS agreement. If you would like details about participating in HANS or the new addendum, please contact the Member and Community relations team.
The goal of the new agreement that went into effect Jan. 1, 2024, is to provide our member HTCs assistance and greater assurance of payment for Gene Therapies beyond a prior authorization and even a single case agreement. The agreement between HANS and ETS currently covers Roctavian and Hemgenix, and we are working on expanding to add the newly approved Hemophilia B gene therapy, Beqvez.

The process for using the agreement is triggered when an HTC submits a Prior Authorization to a plan working with ETS, then the payer submits a patient referral to ETS, ETS notifies HANS, and HANS then notifies the HTC that the patient is covered by the ETS agreement. ETS does not take a cut of the reimbursement, their reimbursement comes directly from separate agreements they have with payers.

The process on the HTC side is relatively simple. First, the HTC needs to confirm that they received the referral notice and schedule of administration date. Second, the HTC needs to confirm that the therapy was administered as planned and submit the claim to ETS for re-pricing. ETS will then submit the claim to the payer for payment to the HTC. One of the benefits of signing the agreement is that ETS can help resolve any billing disputes with payers and the HTC will be paid within 30 days of submitting a clean claim.

If a HTC’s home institution already has a direct agreement with ETS, the rates in the HANS agreement supersede existing agreements. It’s important to note that agreements that overlap are a result of ETS having broad agreements with institutions before hemophilia gene therapy existed.

In addition to the link to the recording of the recent webinar, we also have more detailed information including notes from the detailed Q & A discussion we can provide to anyone who is interested if you have questions about the ETS agreement or HANS contact your primary Member and Community Relations contact. Please take the time to learn about this new opportunity through HANS and sign onto HANS to access these newly negotiated gene therapy contracts.

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by Artemis Policy Group

• HHS Final Rules Strengthen Protections for People with Bleeding and Clotting Disorders

Earlier this month, the Office for Civil Rights, within the Department of Health and Human Services (HHS), finalized a new rule which should improve access to behavioral health facilities for people with bleeding and clotting disorders.

The Discrimination on the Basis of Disability in Health and Human Service Programs or Activities Final Rule (Discrimination Final Rule) clarifies that the protections afforded to people with disabilities under Section 504 of the Rehabilitation Act (including people with bleeding disorders) apply across medical settings. Importantly for the bleeding disorders community, it clarifies that medical providers (including behavioral health facilities) must conduct an individualized inquiry when determining whether the facility can meet the person’s needs. Additionally, a facility cannot deny access based solely on the presence of a diagnosis, such as a bleeding disorder.

Leading bleeding disorders advocacy organizations, including Bleeding Disorders Substance Use and Mental Health Access Coalition (BD SUMHAC), National Bleeding Disorder Foundation (NBDF) and Hemophilia Federation of America (HFA), celebrated the Discrimination Final Rule. In their comments to the government, BD SUMAHAC, which includes HFA and NBDF as key coalition members, highlighted the experiences of people with bleeding disorders in being denied access to inpatient and residential mental health and substance use treatment because of their condition. The Hemophilia Alliance supports this important work to bolsters protections for people with bleeding and clotting disorders and advances equity.

For more information, please see the HHS Press Release, Factsheet, and Discrimination Final Rule text.

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• Biden Administration Releases Final Rule to Crackdown on Harmful “Junk Insurance” Products

On April 29, 2024, the Department of Labor (DOL) issued a final rule (DOL Final Rule) related to association health plans (AHPs) which should better protect patients from short-term, limited-duration health plans, a risky form of low-quality health coverage which fits into the larger category of ‘junk” insurance. Marketed as an alternative to traditional health insurance, short-term plans are exempt from many important consumer protections which many in the bleeding disorder community fought to put in place.

This DOL Final Rule rescinds a 2018 rule that expanded the availability of AHPs by making it easier for a group or association of employers to be treated as the “employer” when offering multiple-employer group health insurance. This effectively allowed more employers to offer health insurance coverage that evades ACA consumer protections – essentially being another type of junk plan.

In 2019, the U.S. District Court for the District of Columbia largely invalidated the rule, finding certain provisions to be an unreasonable interpretation of ERISA. The decision stopped the rule’s full implementation, but the DOL has rescinded the entire 2018 rule to clarify current law since it too believes that the 2018 AHP rule is not consistent with ERISA’s requirements.

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• Hemophilia Alliance Foundation Announces Innovation Grant Cycle




The Hemophilia Alliance Foundation (HAF) is excited to currently offer Innovation Grants with the purpose of providing our community with resources to improve the lives of patients with inherited bleeding and thrombotic disorders. These grants allow funding up to $50,000 per grant with priority being given to new projects aimed at expansion of capacity, collaboration (between two or more organizations), and innovation. Eligible organizations must operate under IRS tax exemption 501(c)(3) or other nonprofit status and would include local chapters, member organizations, HTCs, national organizations, and the eight HHS-designated regional core coordinating centers.

Applications must be submitted online between May 1 to July 19, 2024 at https://hemophiliaalliancefoundation.org/grant-information. The grant-funded year runs from September 1, 2024 to August 31, 2025. Please find more information in the announcement about the Innovation Grant. The Hemophilia Alliance Foundation encourages the Regional Core Coordinating Centers to consider submitting a grant application.

Please contact Ralph Gruppo, MD, Chairman, HAF Grants Committee at ralph.gruppo@fuse.net or (513) 582-4433 with any questions.

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• Mental Health Art Contest for Adolescents for Adolescents with Heavy Menstrual Bleeding – A Quality Improvement Initiative

by Ellen Riker, Artemis Policy Group

In 2023, the Hemophilia Alliance Foundation awarded a grant to the Gulf States Hemophilia and Thrombosis Center and University of Texas McGovern Medical School to explore the use of art therapy in treating heavy menstrual bleeding (HMB) patients seen in the Young Women with Bleeding Disorders (YWBD) clinic at the HTC. The goals of the project were to assess improvement in depressive symptoms and to raise awareness about the emotional/psychological benefits of art therapy.

The study was presented as a poster at the World Federation of Hemophilia, World Congress 2024, Madrid, Spain. For more information, contact Sabrina Farina, Sabrina.Farina@uth.tmc.edu or Marisela Trujillo, Marisela.Trujillo@uth.tmc.edu at Gulf States.

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• 4th Annual HTC Unite for Bleeding Disorders National Walk Challenge Update

by Karen Bowe-Hause, Director Member and Community Relations

As you know, Hemophilia Alliance is again collaborating with NBDF in support of their 2024 Unite for Bleeding Disorders National Walk campaign and has launched the 4th annual HTC Wall of Walkers Challenge. The objective of our collaboration is to increase HTC participation in the NBDF Walk program to provide support for local Chapters. HTCs currently registered for the 2024 Unite Walk are posted below. So far this year, we currently have 12 teams registered with a total of $8,200 raised. Here is the link to the website page that lists all of the walks: National Hemophilia Foundation – Upcoming Events (uniteforbleedingdisorders.org). To register your HTC, select the walk you’d like to register for and then you’ll be taken to the event page where you can register.

As a reminder, NBDF has created re-stickable vinyl decals (sample attached below) that can be distributed to your patients during routine clinic visits to encourage support of your walk. Please use this link – https://forms.hive.com/?formId=FCuvHs35FjaT5SDMP if you would like to request vinyl decals for your Center.

All Alliance member HTC participating teams will be acknowledged on the HTC Wall of Walkers located on the Unite Day landing page on NBDFs website as well as on the Alliance 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 $1500 travel grant will be awarded to 5 member HTCs raising the most funds for their local Chapters, to offset expenses to send a staff member to the 2025 NBDF Bleeding Disorders Conference, September 12 – 14 in Atlanta, GA.

The Hemophilia Alliance thanks everyone for your participation and efforts to benefit your local Chapter.

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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:

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