Notes from Joe
by Joe Pugliese
There are only a couple of good things we can say about the last 12 months, probably the most important is we hopefully have the worst days behind us. We are still averaging 1,500 deaths from COVID-19 per day, but the number is trending down and you can sense everyone breathing a collective sigh of relief. The way so many essential workers responded so heroically in the face of such a terrifyingly, uncertain danger is inspiring. The reason we all feel like the worst is behind us is of course the vaccines that came to market through the imagination, focus, expertise and investment of some of the most imaginative people in the world. The old science said you could not get a vaccine to market in less than two years. There are four different types of COVID vaccines world-wide.
Tragically, as things get back to normal, there has also been a heartbreaking return to mass shootings across the country. As we imagine our lives post-COVID, I know we are imagining a time when the lives of many are not shattered by the senseless violence of the very few. The shootings in Atlanta and Boulder grab the headlines and we mourn the victims. Let us not forget the victims and their families across the country who live with a steady stream of violence on a daily basis. A special thank you to police officer Eric Talley, who ran towards the gunfire in Boulder. Officer Talley was the father of seven and died trying to protect others. I know I like to imagine I would do the same and pray I have no opportunity to find out.
All of this requires us to reimagine how we get things done. Besides wanting things to improve, everyone is also hoping that things slow down so we can catch our breath, but I’m afraid that’s unlikely. This is equally true in our little world. It is hard to pick an exact spot where the community reimagined itself. If you read Carol Kasper’s commemorative article about Judith Graham Poole, you will realize the community has been reimagining itself since at least 1948 when the National Hemophilia Foundation was formed. I think everyone would agree that the pace of change has simply accelerated.
Several members of the Alliance have recently taken obvious and dramatic steps to reinvent themselves:
- The bleeding disorders community in Alaska found themselves without a treatment center and with the assistance of the chapter, local pharmacies, the region and the Alliance, created the Alaska Bleeding Disorders Clinic. I am thrilled to report they are doing great as is the patient community.
- Rebecca Kruse-Jarres, MD, The Director of the Washington Center for Bleeding Disorders (WACBD) shared: “The Washington Center for Bleeding Disorders (WACBD) separated from Bloodworks Northwest on 11/28/20 to become an independent nonprofit organization. Being part of a blood bank was valuable for the care for hemophilia for many years. At a time where we are fortunate to have ever improving treatments for hemophilia, we need to adapt to associated changes while also expanding focus to new areas of need. An independent organization will facilitate this by permitting more flexibility and direct accountability. Ultimately this will benefit who matters most, our patients whose care has been entrusted to us.”
- Most recently the Bronson Hemophilia Treatment opened their doors after relocating from the West Michigan Cancer center.
These are not the first centers, nor will they be the last to reinvent themselves by physically, mentally and spiritually moving away to better serve their patients. All of you have imagined and implemented changes over the last year. Now is not the time to stop; if anything we have to run faster. It sounds exhausting, but it helps if you think of it as fun.
The Alliance is busy trying to keep up with innovators like these three sites. Since 1999, we have evolved from trade organization to GPO and have added advocacy, operations, legal, payer relations, and billing and reimbursement services. Not to mention providing pharmacy and distribution through The Alliance Pharmacy and facilitating direct giving back to the community via the Hemophilia Alliance Foundation. We will soon have a solution for the DDAVP intranasal shortage, and it will be because of all the things we have put in place over the last 20 years. We realize there is much more to do.
Getting Out Your Message without Getting in Hot Water: HTC Marketing and the Grant Rules
by Elizabeth (Issie) Karan
Hemophilia Treatment Centers (HTCs) reach out to the Hemophilia Alliance with questions regarding marketing their programs. Often these questions result from tension between programmatic requirements for HTCS and the federal grant rules. However, the grant rules include important exceptions useful to alleviating these concerns.
HTCs are required to conduct outreach and education to people with bleeding and clotting disorders with a particular emphasis on connecting with underserved populations. At the same time, the grant rules contain restrictions on using federal funds for marketing. Specifically, 45 CFR §75.467, states that “costs of selling and marketing any products or services of the non-Federal entity (unless allowed under §75.421) are unallowable, except as direct costs, with prior approval by the HHS awarding agency when necessary for the performance of the Federal award.” However, the same provision goes on to indicate that program outreach and other specific purposes necessary to meet the requirements of the Federal award are allowable. (45 CFR §75.421(b)(4)) Additionally, marketing costs associated with recruitment of personnel required to perform the work of the federal grant are allowed. (45 CFR §75.421(b)(1))
These rules make clear that any activity required by the federal grant program is allowable. So, HTCs can rest assured that outreach and education to the bleeding and clotting disorder community, especially efforts focusing on underserved people, comply with the grant rules. These activities may include presenting on the importance of the annual comprehensive care visit at events targeting the bleeding and clotting disorder community or producing and disseminating materials on the services available at the HTC or even translating those same materials into other languages. Finally, HTCs may use program income to market open positions necessary to running the HTC which may be especially necessary when desiring staff with knowledge of bleeding disorders.
If you are unsure whether an activity complies with the grant rules, we are here to help. We also encourage HTCs to talk with their peers and regional coordinator about these issues and to get creative ideas on how to expand your HTC’s reach.
Please Register for the Alliance Virtual Hill Day!
by Johanna Gray
We are excited to be planning the 2021 virtual Alliance Hill Day! Alliance members and their patients are invited to join us to advocate for the bleeding disorders community from home. Here’s what you need to know:
What: We will schedule phone/video calls on your behalf with Congressional offices. The benefit is that it will be easy for everyone to participate from home or work, without having to come to DC!
When: May 5, 2021. We will notify you as meetings are confirmed but ask that you do your best to block the whole day from 9-5 eastern (though don’t worry West Coasters, we’ll make sure that no meetings start that early!). We will notify you when your meetings are confirmed so you can free up any other times besides your scheduled calls.
Why: Since there are so many new Members of Congress and staffers, we will be educating Senators and Representatives and their staff members about bleeding disorders, HTCs, and the importance of the 340B Program to our community. We will NOT be lobbying this year, but rather educating policymakers about our issues in anticipation of potential legislation relating to 340B this Congress.
Note: Since we are educating and not lobbying, that means that HTC staff members can do these meetings on regular work time. You aren’t required to take vacation or charge the time to a different cost center. Again, your time spent on calls with offices will be only a few hours that day.
Who: We hope that many Alliance members will participate. We encourage you to also recruit a patient from your center to join you.
Next Steps: Please click here to register to participate. The deadline for registration is April 8, 2021. The Alliance will start scheduling meetings on your behalf. We will be holding a training webinar for all participants a few weeks before the event to share logistical and substantive details that you will need to know to make your meetings successful.
Schedule issues? If you can’t participate in meetings on May 5th and are willing to send emails to your Congressional offices, please register via that option on the form. We can provide you with contact info and a sample email to use.
Any questions? Please contact Johanna Gray at firstname.lastname@example.org or 202-800-7071 with any questions.
by Jeff Blake
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 – 2/28/2021
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 ways to better manage and contain the cost of bleeding disorders care. As you know, we tell payers the best solution is to have an integrated model of care provided by our member HTCs 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 2 ½ years we have been able to redirect over 36,000,000 units to HTC pharmacy programs and we currently have payer opportunities of almost 70,000,000. If we were able to transition these units to HTC pharmacy programs at a $0.25/unit margin, new pharmacy revenue would be $17,500,000.
So, what do we need to do to bring more business to HTC pharmacy programs? Several things come to mind.
1. 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.
2. Stay focused and organized. Gather insurance and prescription data on your patients that do not use your pharmacy program. Our HTC Patient Insurance and Clotting Factor Utilization tool is a tool you can use to remain organized.
3. 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.
4. Review and sign the Hemophilia Alliance Network Services (HANS) PPO Agreement. We will work with you and your contracting/legal teams to finalize the agreement, which provides you the opportunity to participate in payer contracts that we have negotiated. We currently have 35 members that have signed the HANS PPO Agreement. We need at least 60 members to have an effective national network of HTC pharmacy programs, and we need at least 80 to have a larger national presence.
If you have any questions, please contact a member of the Hemophilia Alliance Team.
Marketing and Operations Update
by Sean Singh
The spring members meeting was well attended and the interaction with our members was better than expected. In fact, we heard the same message over and over: “We can’t wait to meet in person!” Virtual meetings work but we all miss the networking and in-person interaction. We are looking forward to our next meeting and are evaluating the possibility of the fall meeting being in person. It will be some time before we make that decision but will let you know as soon as we do.
Meeting materials, including all presentations and recordings, are now available in the members section of the website. You can find them here. In addition to the members meeting we have a large library of recorded presentations and tools for you to use. If you do not have a username or password for our website, please go to our homepage then click “JOIN” in the upper right hand corner and complete the form.
We continue to enhance the data portal and will be rolling out some changes in the next few weeks. If you are not reporting your data to us on a monthly basis, we encourage you to start in April. Please contact Theresa Parker, our administrator at email@example.com. Theresa will walk you through the really easy and simple steps to enter your data. She has some videos available for those of you who need a refresher on how to enter your data.
In the coming months we will be sending out several surveys. One will be about your Information Technology needs. Please keep an eye out and if possible, contact me (firstname.lastname@example.org) and let us know the best person at your center to receive the survey.
Meeting Schedule for 2021
Winter/Spring Webinar Series
April – 22nd
May – 20th
May – 5th (Virtual)
Summer Webinar Series
June – 17th
July – 29th
August – 26th
Fall Members Meeting
September – 12th to 14th (In-person tentative)
New HTC Staff Meeting
October – 10th to 12th (In-person tentative)
Notes from the Community
World Federation of Hemophilia: Global Reach. Local Impact.
by Jennifer Laliberté – WFH USA National Director
Since 1963, we have worked to improve access to care for all people living with an inherited bleeding disorder, regardless of where they live. In collaboration with our national member organizations and healthcare providers in 147 countries, we support sustainable care by building capacity for diagnosis, treatment, and advocacy.
The WFH Guidelines for the Management of Hemophilia have been vital to achieving those objectives: cited over 1,000 times, the second edition remains our most widely accessed resource. The new edition published last August provides important updates and additions, including over 300 evidence-based recommendations to guide best practice. To further the promotion and implementation of these recommendations – and thanks to the support of the Hemophilia Alliance — we will also be releasing slides decks, narrated videos, and chapter snapshots to highlight key learnings. Keep on the lookout for these soon-to-be-released resources on the WFH website.
The World Bleeding Disorders Registry (WBDR) is another valuable tool to support clinical care and advocacy around the world. First launched in 2018, the registry now contains clinical data on over 7,400 people with hemophilia in 39 countries, and has provided communities in countries like Bangladesh and Kyrgyzstan with their first ever national registry. Upcoming plans include developing myWBDR, an app developed in collaboration with PROBE that will allow for easier collection of patient-reported outcomes.
2021 will see the launch of our ground-breaking Gene Therapy Registry (GTR). As we enter a new treatment era, this important initiative will help determine the long-term safety of gene therapies in people with hemophilia, with data collected either directly via the HTC or through linkages with existing national registries like ATHN. We look forward to sharing more information in the months ahead.
As members of our global community, you are an integral part of our vision of Treatment for All. We hope you will join us as we celebrate the strength and solidarity of our bleeding disorders family on World Hemophilia Day this April 17th. Encourage your community to join us on social media using the hashtags #WHD2021 and #WorldHemophiliaDay, or consider making a gift to support the WFH’s global mission at give.wfh.org/give-usa.
To learn more about our work and how you can get involved, contact us at email@example.com.
Team Alliance Contact Information
We work for you! Please don’t hesitate to contact any of us with any questions or concerns: