In this Issue…

· Welcome 2024

Advocacy Update
· Hemophilia Alliance 2024 Hill Day – The United Voices of Our Community

Washington Update
· Proposed Rule on Affordable Care Act Provisions Published
· Congress Puts Off Funding Bills Until March
· CMS Publishes Prior Authorization Final Rule

Legal Update
· Legal Team Update: Beware! Scammers Steal Funds from Department of Health and Human Services (HHS) Grant Recipients

Member and Community Relations Update
· “The January Blues”

Alliance Update
· Viva Engage! Hemophilia Alliance Virtual Networking Platform
· 2024 Meeting Schedules

Notes from the Community
· WFH 2024 World Congress taking place this April

Team Alliance Contact Information

Welcome 2024
by Jeff Blake, President and CEO

Happy New Year Everyone!! I hope you had an enjoyable holiday season and you were able to take some time off from work to recharge your battery. The first month of 2024 has been busy for the Hemophilia Alliance Team. We’ve had our Annual 2024 Strategic Planning Session and Board Meeting. I’m excited about the opportunities to continue our efforts focusing on our Mission and strengthening the Hemophilia Alliance.

The pressing issue now is what to name my monthly Newsletter article. Current suggestions include “Jeff’s Jottings”, “Blake’s Take” and from a very sarcastic person, “Not Notes from Joe.” I would like to receive your input on a name for my monthly article. Please submit your ideas for an article name to me at jeff@hemoalliance.org. In addition, there will be a financial incentive for this challenge. The Hemophilia Alliance will make a $1,000 campership donation to the camp of your choice for the winning name. Naming suggestions must be received by February 7th. I look forward to receiving your suggestions and working with our Newsletter Committee to select the winning name.

As mentioned above, we used our Strategic Planning Session to determine our goals and objectives for 2024. The meeting included our Board and the Hemophilia Alliance Team. The day and a half meeting included discussions about the current market conditions and challenges we are encountering that impact HTC sustainability and patient access to care. The session focused on:

• Group Purchasing – enhancing our relationships with our manufacturing partners,
• Member & Community Relations – strengthening our state-based advocacy efforts,
• Marketing & Operations – improving our member services and member engagement,
• Federal Policy and Regulatory – enhancing our efforts to support our member HTCs and the bleeding disorders community.

It was fantastic to have our Board and Hemophilia Alliance Team together, and we were able to take updated pictures. Throughout 2024, I’ll provide highlights and updates on the progress of our 2024 strategic initiatives.

The many challenges and opportunities 2024 will bring us will strengthen the Hemophilia Alliance. We look forward to working with and supporting our member HTCs, and the bleeding disorders community, to make this year a huge success.

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Hemophilia Alliance 2024 Hill Day – The United Voices of Our Community
by Dean M. Hindenlang, Ph.D.
Chair, Advocacy Committee and Secretary, Board of Directors

Each year, scores of people arrive on Capitol Hill to meet with members of Congress, to help bring awareness to any number of social, economic, environmental, or health-related causes and concerns. Each person, and each group, seeks to inform, enlighten, and inspire a new point of view within their elected officials.

Similarly, the bleeding disorders community makes their annual pilgrimage, in kind, working to ensure that patients, Hemophilia Treatment Centers, clinicians, insurance and medication costs, changes to current laws or policies, and medication-based access issues are advocated for with decision makers on Capitol Hill. It is essential to the bleeding disorders community that we bring awareness to issues that may otherwise be overlooked or decided without our collective voices weighing in.

This year, the Hemophilia Alliance will be making our annual visit to Capitol Hill on Thursday, April 18, 2024. However, unlike many other groups, we are unique in our approach, and in our collective, unified voice from which we speak.

Patients, family members, advocates, nurses, pharmacists, hematologists, and social workers, join us in our meetings. This singular act, this collective voice, our holistic approach, helps to ensure that we can provide unparalleled education, a new perspective, and indisputable expertise — as members of our comprehensive care team are in the room when we meet with our Congressional representatives!

Make certain that your HTC and patients served by your HTC join the Alliance on Capitol Hill on April 18! Our united voice, our collective, comprehensive approach, is unparalleled and unstoppable in what we can accomplish together!

See you on The Hill,

Dean

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by Ellen Riker & Johanna Gray, Artemis Policy Group, Hemophilia Alliance Advocacy Consultants

• Proposed Rule on Affordable Care Act Provisions Published

Positive developments in lawsuit about copay accumulator adjustors – There have been two positive developments in the lawsuit challenging the HHS rule that allows copay accumulator adjustors. First, the judge in the case ruled against the HHS assertion that they would not have to enforce the 2020 NBPP (that only allows copay accumulator adjustors to be imposed when it is a brand name drug with a generic alternative) as they were planning rulemaking on the issue. The judge said no – that the 2020 NBPP policy was in force. The second update is that the federal government withdrew its appeal of the decision.

These two developments combined are very promising and suggest that today, copay accumulator adjustor programs are NOT allowed for any hemophilia or other bleeding disorders treatments. We are working on toolkits for both patients and providers to help them push back on any payers or PBMs implementing accumulator adjustor programs with more power due to the lawsuit.

We are continuing to ask HHS to release guidance to clarify how it will enforce this policy. We are also still pushing for the HELP Copays Act to be enacted by Congress to make clear in the law that both copay accumulators and maximizers aren’t allowed.

Please stay tuned for more information about how HTCs can best advocate for their patients in light of these developments.

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• Congress Puts Off Funding Bills Until March

Late last year, Congress extended the continuing resolution funding federal departments and agencies into January 2024. Still unable to find consensus on spending levels, a further extension of current funding levels until early March was passed and signed by President Biden. While March 8 is the expiration of the continuing resolution, April 30 is a more important deadline for Congress to resolve their differences and pass a 2024 appropriations bill, if not across-the-board cuts would be triggered as mandated under last year’s debt ceiling compromise.

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• CMS Publishes Prior Authorization Final Rule

On January 17, 2024, the Centers for Medicare and Medicaid Services (CMS) released a final rule aimed at improving the electronic exchange of health information and prior authorization (PA) processes for medical items and services. The original proposed rule was released on December 6, 2022. Most of the provisions of the rule become effective January 1, 2027.

The prior authorization provisions of the rule apply to the following payers:

• Medicare Advantage (MA) organizations
• Medicaid and the Children’s Health Insurance Program (CHIP) fee-for-service (FFS) programs
• Medicaid and CHIP managed care plans
• Issuers of Qualified Health Plans (QHPs) offered on the Federally Facilitated Exchanges (FFEs)

With this rule CMS is addressing both technological and operational requirements related to its prior authorization process. The rule requires impacted payers to support an electronic PA process that is embedded within physicians’ electronic health records (EHR)—bringing much-needed automation and efficiency to the current time-consuming, manual workflow. In addition, CMS is shortening PA processing timeframes and significantly enhancing transparency around PA, including requirements for specific denial reasons and public reporting of program metrics. CMS is also requiring that payers provide physicians and patients more PA-related information.

The provisions in this final rule do not include standards or policies for any drugs, including covered outpatient drugs under Medicaid, and Medicare Part B or Part D drugs. The rule does apply to medical items and services, including supplies, including those dispensed at a pharmacy and DME, that are considered medical benefits and are not prescription drugs.

A more detailed summary of the rule can be found here.

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Legal Team Update: Beware! Scammers Steal Funds from Department of Health and Human Services (HHS) Grant Recipients
by Elizabeth “Issie” Karan, Karan Legal Group, Hemophilia Alliance Legal Counsel

Last week, news outlets reported that hackers gained access to the Payment Management Services (PMS) system utilized by HHS to process civilian grant payments and, from late March to mid-November, these hackers withdrew about $7.5 million intended to be awarded to five accounts. According to anonymous sources, the hackers have not been identified by federal authorities and the intended grantees still have not received their awards.

We regularly hear from IT experts, including those on the Alliance team like Kiet, that cybersecurity must be a priority for organizations. Yet, the risks still feel abstract and difficult to quantify. The latest attack on the government brings the chickens home to roost for Hemophilia Treatment Centers Regional grantees who utilize PMS to draw down grant funds.

The HHS’s Office of Information Security and the Health Sector Cybersecurity Coordination Center (HC3) reports that ransomware and data breaches were the most common cyberattacks in health care and often begin with a successful phishing attempt. Additionally, artificial intelligence has made these phishing attempts more effective.

In the most recent attack, HHS determined the hackers got into the grantees’ domain email accounts and used spearphishing emails to target specific individuals or organizations. The attacks worked and hackers were able to trick US payment staff into providing access to the grantees’ PMS accounts. Posing as actual users, the government sent the hackers the money believing they were the legitimate grant recipients.

HC3 provides recommendations for health care organizations to protect against cyberattacks.

• First, security begins with ensuring that your mail server is configured to filter unwanted e-mails. These will not prevent all phishing e-mails, but they should reduce some unwanted traffic.
• Second, end users should be periodically trained on themes emerging in phishing e-mails, such as references to an invoice (and related attachment), requests for personal information, offers of coupons and discounts or even government refunds.
• Third, HC3 highly recommends multi-factor authentication.
• Finally, security software should be employed where possible.

If your HTC is concerned about its cyber security, please reach out to the Alliance team for assistance.

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“The January Blues”
by the Member and Community Relations Team

As you painfully know, every January payers shift the landscape and HTCs experience many obstacles to their pharmacy program. Benefits, formularies, prior authorizations, and prior authorization processes change. HTCs may lose patients to commercial specialty pharmacies and the narrowing of networks. We know that Alternative Funding Programs are on the rise and many patients have had a Copay-Accumulator or Copay Maximizer Program added to their benefits. The point being, January can give every HTC “the Blues” if they don’t have a plan in place to address these potential changes affecting their patients. We know every HTC has experienced this at some point. If you’re running into any of these issues, please reach out to your primary contact within the Member and Community Relations Team.

Here are examples of some information we may need:

• Copy of insurance card
Identifies who the insurance company is and if it is a fully funded or self-funded plan.
• Have you received an official denial?
If so, what is the reason for the denial? Include a copy of the letter if available.
• Diagnosis and severity?
• What is the product and dosage?

If an issue is affecting your HTC, it may be affecting others. By sharing your experience, we can help each other.

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• Viva Engage! Hemophilia Alliance Virtual Networking Platform

by Marketing & Operations Team

This year Team Alliance will be rolling out Viva Engage, our new virtual networking platform. The hope is to provide a tool that empowers our members to network before, during, and after our meetings. We want this tool to promote open knowledge sharing and solution finding amongst HTCs and our team of experts.

As you all register for our Spring Members’ Meeting & Hill Day (April 15 – 18) be on the look out for invites to join the meeting community in Viva Engage. The platform is easily accessible as an app in Microsoft Teams on your desktop and mobile device.

Within the meeting community, you can see other registrants, easily access agendas and other meeting documents, as well as post questions/issues that you hope to be discussed during the meeting. Don’t worry, along with your invite we will provide helpful materials on getting started and all the exciting way to Viva Engage!

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• Upcoming Meetings

MEETING	DATE
Linda Gammage Social Worker CE Conference	February 28 – March 1, 2024
New HTC Staff Orientation	March 25 – 27, 2024
Spring Members Meeting and Hill Day [REGISTER NOW]	April 15 – 18, 2024
Physical Therapists CE Conference [REGISTER NOW]	May 15 – 17, 2024
Nurses CE Conference	June 10 – 12, 2024 (tentative)
Fall Members Meeting	October 9 – 11, 2024
Physicians and Business Administrators Meeting	November 13 – 17, 2024

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WFH 2024 World Congress taking place this April

Do you want to learn about the very latest developments in our field? The WFH 2024 World Congress—taking place in Madrid, Spain, from April 21 to 24—is an unparalleled opportunity for participants to connect, learn, and collaborate in one of Europe’s most dynamic and well-connected cities. The event will bring all stakeholders from the international bleeding disorders community together in one place. That includes patients, family members, healthcare professionals, researchers, policy makers, advocates, and industry members.

The WFH 2024 World Congress will include over 90 hours of continuing educational sessions across Medical and People with Bleeding Disorders (PWBD) tracks, and six professional development tracks: Nurses, Dental, Laboratory Sciences, Psychosocial, Musculoskeletal (MSK) and Women and Girls with Bleeding Disorders (WGBD). The World Congress will feature world-class plenary and session speakers, interactive sessions, workshops, panel discussions and innovative industry symposia.

To learn more about the WFH 2024 World Congress and to register visit: www.wfh.org/congress.

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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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