In this Issue…

Notes from Joe
· Going, Going …… Not so fast

Notes from the Community
· UC San Diego HTC Sponsors Course on Musculoskeletal Ultrasound
· Reminder: The 4th Annual Innovation Grant

Alliance Update
· New Product Guide Available
· New HTC Staff Meeting in NYC

Payer Update
· State Medicaid Redetermination in Process NOW
· Linda Gammage Social Worker Planning Committee Member Needed

Team Alliance Contact Information

Going, Going …… Not so fast
by Joe Pugliese, President and CEO

I have been working with the Executive Committee of the Hemophilia Alliance Board for the last several months, planning for my retirement at the end of the year. (Letter from Board Chair) It is an odd feeling working on replacing yourself. We all like to think of ourselves as indispensable at some basic level and of course we are wrong. The Alliance has posted this advertisement (CEO Job Posting) it is on our jobs board on the Alliance website. We are using a third party to assist in the search.

The current team at the Alliance has 311 years of combined experience in the bleeding disorders community. The Alliance has worked hard at growing its bench and maximizing the team’s effectiveness by working collaboratively across all of our key functions. I am confident that we will make this transition not just seamlessly but will accelerate the success the Alliance has enjoyed to date. Meanwhile, I will continue to lead the organization with my usual laid-back approach.

The Alliance just completed another very successful Hill Day. The takeaway we got from a number of offices was that there would be no action taken on 340B this year. While this is comforting, there is no reason to be complacent. We will remain vigilant in safeguarding our members standing in the 340B program. I also want to thank our manufacturers for their long-time support. This year we were delighted to have Mary-Lacey Reuther Head/North America Policy, Advocacy & Government Affairs (PAGA) for CSL Behring join us on the Hill.

Recently, I was forwarded an article, which included a letter from two Republican leaders in the House and Senate posing the question, does 340B pricing cause drug shortages. (Click here for article) Since the establishment of the 340B program in 1992, the discount rates have been fixed at 13% for generic drugs, 17.1% for pediatric drugs and clotting factor, and 23.1% for other brand name drugs. Any discount greater than the statutory discounts listed above is directly related to the drug manufacturer’s discipline around pricing their products. If prices are relentlessly raised above the consumer price index (CPI), the discount increases. Drug manufacturers set prices fully aware of the existence of the 340B discounts. It is hard to understand how 340B would cause a drug shortage.

There are many reasons why drugs go on backorder causing shortages, among them are shortages of raw materials, winner take all bidding through GPO contracts, and after the fact rebates paid to PBMs and health plans that do not allow for investment in maintaining current Good Manufacturing Practices (cGMP). , mismanagement such as misallocation of capital spending heavily on promotion and starving your manufacturing infrastructure. Doing away with 340B might provide a brief respite from the underlying issues outlined above but certainly would not cause drugs to go on backorder.

Please take note of the great overview of the Musculoskeletal Ultrasound (MSKUS) program led by Annette VonDrylaski MD, the Medical Director at University California San Diego HTC. You will learn how you can be trained on using this innovated noninvasive treatment to detect bleeds and assess joint. Just another example of how the USHTCN pools resources to and know to improve patient outcomes. They of course are able to do this because of their access to the 340B program.

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• UC San Diego HTC Sponsors Course on Musculoskeletal Ultrasound

by Marlene Zepeda, UC San Diego

The UC San Diego Hemophilia and Thrombosis Treatment Center is offering a three-day course on musculoskeletal ultrasound (MSKUS) and joint injection. The course is free to providers connected with HTCs and CME credits will be earned by participants. For more information on the course and to register for the course check out this link.

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• Reminder: The 4th Annual Innovation Grant
  


The Hemophilia Alliance Foundation is excited to offer its 4th annual funding opportunity for the Innovation Grant. 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 is a one-year grant with projects to be completed within the grant year which runs between September 1, 2023 and August 31st, 2024.

The goal of the Innovation Grant is to encourage larger scale, unique, and innovative projects that will serve the community with resources that will improve the lives of patients with inherited bleeding and thrombotic disorders.

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. Eligible organizations would include:

• Local applicants such as chapters, member organizations, and HTCs
• National organizations
• The eight HHS-designated federally-funded regional core coordinating centers.

The maximum amount per grant request is $50,000. Projects should demonstrate clear and measurable outcomes.

Priority for funding will be given to new projects aimed at expansion of capacity, collaboration (between two or more organizations), and innovation.

Organizations interested in submitting applications should review the 2023 Grant Guidance thoroughly before finalizing their applications. To see our Grant Guidance and to apply online, visit our website at: https://hemophiliaalliancefoundation.org/grant-information

The deadline for application submission is July 18th, 2023. Applications must be submitted directly on the Hemophilia Alliance Foundation website.

For questions about the Innovation Grant process, please contact the Hemophilia Alliance Foundation Grant Committee Chairman, Ralph Gruppo, MD – ralph.gruppo@fuse.net

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• New Product Guide Available

by Theresa Parker, Administrator

The Hemophilia Alliance team recently worked with Dr. Stacy Croteau to update our product guide for the Bleeding Disorders community. This year, we are excited to be offering not only printed product guides, but our very own Kiet Huynh has built an online version that can be accessed via our website.

You can choose to view the products by manufacturer or by product type. Our hope is that these materials will help educate staff and patients on the variety of treatment options available. The online version will also be regularly updated as new products arrive on the market so we can keep the community informed with the most up-to-date information.

Please take the time to check out the product guide from our website https://hemoalliance.org. Coming soon, we be offering a printed version. Please take a minute and fill out this request form to help us determine how many we need to print and share with your center or chapter office.




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• New HTC Staff Meeting in NYC

by Jennifer Anders, Manager of Data & Analytics

Last month we had the pleasure of hosting the 2023 New HTC Staff Meeting in NYC and welcomed 67 new faces from our member HTCs. The New HTC Staff meeting is our opportunity to get hands-on with new employees and provide an overview of how the Hemophilia Alliance works with our members. We couldn’t have asked for better weather, greater company, and we hope everyone was able to take in some amazing sights in the Big Apple!

Even more so than at our regular member meetings, we see a wide variety of HTC staff at this meeting. Over the years these roles are becoming more diverse. We saw over 20 different roles/job tiles attending this meeting including, physicians, nurses and nurse practitioner, pharmacists and pharmacy techs, administrators, and financial advisors. These meetings provide education and training on 340B and provide key networking opportunities to learn more about the benefits of the Hemophilia Alliance and what it offers its member HTCs. This year was no exception and Team Alliance couldn’t stop buzzing about how engaged and interactive this new group was!




Based on positive feedback, we want to give some major kudos to our wonderful presenters. Some of the highlighted presentations included Advocacy Updates, Building Bridges within our Community, 340B Basic Training, and all about Program Income. To quote one of our attendees, “As a new HTC employee, it was good hearing all the information about the alliance in person. Before, I had no idea what the Alliance did. It left me wanting to network more and be more involved in the community. I look forward to no longer deleting your emails”; this is exactly how we want everyone attending our meetings to feel!

The post-meeting surveys are extremely valuable to the Alliance. We love hearing all feedback, good and maybe not so good. The Alliance Team members threw a lot at the new HTC staff and based on some feedback, such as “more breaks” and “would have preferred Breakout Sessions”; we HEAR YOU! In the future we will allow additional time for people to let all the new information sink in, and incorporate breakout sessions that are relevant to specific job titles.

The Alliance plans to hold the New HTC Staff Meeting annually, so as your HTC acquires new staff look out for the 2024 meeting schedule, and don’t forget to register for the Fall Member Meeting in October!

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• State Medicaid Redetermination in Process NOW

by Angela Blue, Director Member & Community Relations

Many HTC patients may be at risk of losing coverage, or having their Medicaid coverage mistakenly terminated, even if they have been covered by Medicaid for many years. The end of the COVID-19 Public Health Emergency (PHE) ushered in the end of continuous enrollment in Medicaid and allowed states to re-start their Medicaid renewal application process. This is referred to as the Medicaid Unwinding or Redetermination period.

During the PHE, State Medicaid agencies were NOT conducting regular reviews of their members. Anyone who was covered by Medicaid in March 2020 and/or went onto a Medicaid plan from March 2020 through March 2023 stayed on Medicaid without the typical annual review process to determine if they still qualified.

Beginning in February 2023 states could start reviewing their Medicaid patients to determine if they still qualify. Early estimates predict that 15 million patients will lose their coverage over the next year, and up to 6.8 million of those members are still eligible but missed some part of the re-application process.

We recommend that HTCs keep a list of their Medicaid patients as this process unfolds and contact them about the re-application process. If a patient’s contact info (address, phone, etc) has changed since they last applied for Medicaid, they may not receive the renewal information and their coverage could be terminated because of no response. It is important that patients update their contact information with the Medicaid agency.

Some patients may no longer qualify for Medicaid because they aged out or had a change in income or household situation. These patients may need help finding a new plan through the State exchange or other means. Many Bleeding Disorders Chapters across the country are holding webinars and providing info to patients. We suggest reaching out to your local chapter to coordinate and collaborate in your efforts.

Most states are processing the renewals throughout the next year, redetermining eligibility in the month that the member originally started Medicaid. The Georgetown Center for Children and Families has a great state tracking document that they are continually updating here. Please see the Alliance January Newsletter article for more details and resources.

If you have questions or want more information, please contact your Alliance Member and Community Relations contact.

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• Linda Gammage Social Worker Planning Committee Member Needed

by Jeff Amond, Director Member & Community Relations

The Hemophilia Alliance seeks to fill one vacancy on the Planning Committee for the Linda Gammage Social Worker Conference. Candidates are required to be currently employed at a federally supported HTC that is a member of the Hemophilia Alliance. This volunteer opportunity involves working collaboratively with other committee members to identify appropriate topics, recruit speakers and plan/evaluate programs. Committee members participate in conference calls and one in-person planning meeting per year (if needed). Committee members also have the added perk of getting a guaranteed spot at the conference. The role generally requires a commitment of about two hours per month. The term is three years. Interested individuals should submit their CV and a Letter of Interest to Jeff Amond at amond@hemoalliance.org by Friday July 12, 2023.

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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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