October Donor Digest 2022

October 2022

Donor Digest In this Issue:

Making All Copays Count: NHF Advocay Giving Shoesday is Back!

Stakeholder Spotlight: AscellaHealth NHF: New Chapter Stakeholder Spotlight: Sanofi Red Tie Soiree: Recap Marathon Update

Make All Copays Count—the latest updates from NHF Advocacy st

An update from NHF's Advocacy Team: Millions of patients who ​depend on financial assistance to afford their medications ​are now being told that the money must come out of their own pocket before they can get their medications.

Health plan policies called copay accumulator adjustments no longer count financial assistance toward the patient’s annual deductibles or their out-of-pocket maximum.

In addition, a loophole in the Affordable Care Act allows many employer-sponsored health plans to deem certain critical and life-saving prescription drugs as “non-essential,” which significantly increases out-of-pocket costs for patients.

Together, these practices disproportionately target the most financially vulnerable patients with serious chronic health conditions, creating an affordability crisis and essentially undermining pre-existing condition protections.

Thanks to donors like YOU, NHF can continue to provide information about the harmful effects of pricing schemes, known as “copay accumulators and maximizers,” on access to prescription drugs for people with chronic and serious health conditions.

For more information, click here, or follow along on Twitter using the hashtag #AllCopaysCount.

Giving Shoesday is back! Have you been wanting to get your hands on a pair of the NHF shoes? Now is your chance. A Walk in Our Shoes campaign is a collaboration between NHF and Takeda to continue raising awareness and support of the inheritable blood disorders community through custom Converse and Nike sneakers. This year, we will be unveiling a brand new Converse design!

Donate $60 or more on Giving Shoesday and you will receive a special edition Converse sneakers or $150 for a pair of the custom Nike sneakers.

Stay tuned for more details!

NHF Partner Spotlight AscellaHealth NHF Partner AscellaHealth Discusses Importance of Patient-First Approach in Management of Hemophilia and Other Rare Diseases Established in 2013, AscellaHealth is a global Healthcare & Specialty Pharmacy solutions organization serving patients, payers, life sciences manufacturers and providers, offering a comprehensive portfolio of customized, tech-enabled specialty pharmaceutical and personalized medical management services.

A multiple Inc. 5000 winner, AscellaHealth’s unique, patient-centric approach is built upon proprietary technology processes for innovative programs and services optimizing health outcomes and quality of life for patients with complex chronic conditions or rare diseases that require specialty medications and/or gene and cell therapies. Visit www.AscellaHealth.com.

The approximately 30 million Americans who live with an array of rare or orphan diseases such as Hemophilia, have complex medical needs requiring high-touch support. Specialized services enable these patients to better address the challenges associated with their conditions and the management of the therapies they utilize.

A patient-first care model can enable patients of rare diseases and every industry stakeholder including—payers, providers, and manufacturers—a more efficient way to overcome challenges related to medication access and compliance and adherence to therapy.

These innovative care strategies are a part of targeted programs, which include the services of specialty pharmacists and other care team members with a high level of expertise managing specialty conditions like Hemophilia. A specialty pharmacy (SP) solutions provider with a patient-first approach to rare disease can help overcome the limitations of the standard Specialty Pharmacy and hub service model that often rely too heavily upon technology solutions that fail to address human needs and variability, as well as the need for customizations to fill specific manufacturer needs.

The Value of Patient-First Model High-touch , specialty-focused care teams often include care coordinators, pharmacists, nurses, and other specialists, with disease state expertise. They deliver customized care which helps streamline communications and enable discussion between the patient, pharmacist, and the prescriber.

The care team can enhance compliance and stay ahead of side effect challenges by incorporating assessments and interventions at key points in therapy. Additionally, a patient engagement strategy with a multi-layered communications approach that includes text, phone, and email increases response rates of patients.

Specialty pharmacists can play a significant role for patients and caregivers via their specialized experience with high-touch, expensive therapies for patients with chronic, complex, and/or rare diseases. These staff members are also a valued resourced for educational information regarding financial solutions to address barriers to access, of expensive medications.

Ultimately, a patient-first approach leads to a better understanding of the patient’s needs, focuses upon the impact of a particular drug or a combination of drugs, and monitors the patient’s overall health, resulting in an optimal patient journey and more favorable clinical outcome.

NHF Announces a New Chapter!

Please join NHF in welcoming the Tennessee Hemophilia and Bleeding Disorders Foundation as our newest NHF Chapter! We are proud to collaborate and work alongside 53 chapters across the country. Together, we can reach more individuals and families living with inheritable blood disorders. We are thrilled to welcome new members to the NHF family!

Contact Information: Tennessee Hemophilia and Bleeding Disorder Foundation Executive Director: Amanda Wilson, amanda.Wilson@thbdf.org Board Chair/President: Janet Patterson, janettpatterson@comcast.net

Community Spotlight: Sanofi At Sanofi, we chase the miracles of science to improve people’s lives. We are dedicated to transforming the practice of medicine by working to turn the impossible possible. But delivering novel innovations isn’t our only focus, we’re also committed to helping advance education about various diseases and conditions – especially rare blood disorders.

Our commitment to the rare blood disorders community runs deep, spanning more than 35 years and several corporate identity changes.

And during this time, we have continually partnered with NHF on various programs and resources to support the hemophilia community.

Through this collaboration, Sanofi has had the opportunity for cross functional partners to participate in key projects, such as the State of Science Hemophilia A & B Working Group, the National Research Blueprint Workshop, the Advanced Therapy Medicinal Products Council, Community Voices in Research, and the Health Equity Taskforce.

Sanofi and NHF have also pioneered educational resources and initiatives that have helped expose gaps in care and ongoing unmet needs for the hemophilia community with the “Bridging the Gap: Strategies to Help People with Hemophilia Gain the Benefits of Prophylaxis” whitepaper and a joint health program that resulted in NHF’s poster “A Pilot Study of US HTC Physical Therapists' Knowledge and Educational Needs: Establishing the Foundation for a Mentorship Program.” Other programs include a clotting cascade video that will foster patient education at hemophilia treatment centers and new modules that were debuted at the National Bleeding Disorders Conference 2022 Science Fair.

We realize that NHF has played and will continue to contribute significantly to the vibrant, passionate bleeding disorders community. We are thankful to be a part of it and we look forward to our continued work together.

On October 15, 200+ people attended our yearly fundraising gala, the Red Tie Soiree. And, for the firsttime ever, the event headed to the West Coast, welcoming patrons to the historic Julia Morgan Ballroom in San Francisco.

Together, we raised over $215,000 to fund better care, treatment, and research for the community.

This year’s event featured powerful stories of community partnership, progress, and hope, including those of three special honorees. John Cunningham, CEO of the National AIDS Memorial Grove, received the Inspiration Award for his ongoing partnership and support of the many community members and families impacted by HIV/AIDS. Karen Fulton Holine – whose son Jason passed away at the age of 17 due to complications of HIV from contaminated blood products – and Leah Ogden Adams received the Ambassador award for their commitment to advocating and raising awareness for the inheritable blood and bleeding disorders community. Lucas and Maggie Taylor’s son Teddy was diagnosed with severe hemophilia A at birth.

They shared their powerful story about the challenges to access and care living in a rural area in Wyoming. Additionally, the Red Tie Soiree welcomed recorded remarks from Speaker Nancy Pelosi, who shared powerful words noting the powerful resilience and strength of the inheritable blood and bleeding disorders community.

Thank you to all who donated, participated in the auction, and attended the event. Our community is stronger when we come together, and we are grateful for your support.

NYC Marathon On November 6th, the Red Tie Runners will hit the streets of NYC in support of NHF in the 2022 TCS New York City Marathon. Check out some of our runners stories!

SAVE THE DATE: The 2023 United Airlines NYC Half is March 19, 2023 and we have a spot for you! Interested in running?

Contact Riley Breen at rbreen@hemophilia.org to learn more.