Notes from the Community, January 2021

Notes from the Community

Celebrating 30 Years Young! The Coalition for Hemophilia B Reaches a Milestone

Three decades ago, a small but dedicated group of families and individuals understood that people affected by Hemophilia B had unique needs. A generation later, we remain driven by the wants, hopes, and dreams of the families we serve in everything we do. Our mission, “to make quality of life the focal point of treatment for people with Hemophilia B and their families through education, empowerment, advocacy, and outreach,” has driven every aspect of our vision and programs.

The Beginning
John and Joyce Taylor founded the Coalition when their son John was diagnosed with severe Hemophilia B. Joyce’s father, a pharmacist, never knew he had mild Hemophilia until he passed away after being given aspirin at a hospital in the 1960s. Finding only limited resources on Hemophilia B, they recognized the need for an organization to serve this community. John flew all over the world and met with the top Hematologists and scientists in the field to learn all he could about Hemophilia B and to create a better life for patients.

Our Team
Today, the Coalition for Hemophilia B, a national non-profit, is headed by our Chair, Dr. David Clark. Dave, who has been writing much of the technical content in our quarterly Hemophilia B Newsletter (Factor Nine News) since the beginning, is known for his wonderful ability to make complex scientific concepts easy for patients to understand. Dave was a researcher involved with factor IX since 1992 when he joined American Red Cross Plasma Derivatives. He loves helping the Hemophilia community and is very involved in all aspects of the Coalition’s work. He has spoken at many national conferences including those held by HFA and NHF, and he has served on various committees with ATHN and other organizations.

Wayne Cook has severe Hemophilia B. He was one of the first to volunteer at the Coalition and has served as its President for the past 17 years. Wayne is an avid advocate for the community and a wonderful role model and mentor to many. He loves to help his blood brothers and sisters.

Kim Phelan, the Chief Operating Officer, is one of those rare individuals whose compassion is matched only by her passion. Kim previously worked in banking. “It’s really an odd story,” she said. “I received a call from a headhunter asking me to interview with John Taylor’s new startup company. I left a big bank to work in a small office with the feel of an old-style detective agency with just 3 people,” Kim said. The start-up became quite successful. Shortly after the Coalition was formed and we sent out the first Newsletter and started exhibiting. Kim recalls “the first time we exhibited, a mother came up to me and said “where have you been? All five of my boys died.” Kim just cried so hard. It was a very difficult time, but she fell in love with the people, quit the banking world, and joined the Hemophilia B community. It was where she was meant to be-there is no doubt.

Our Programs
The Coalition for Hemophilia B has grown substantially over the years, with a more members and programs than ever before. Our annual Symposium, which gets bigger every year, has been successful in both educating our community and bringing families together from all over the nation. It’s a very empowering event that creates strong, life-long bonds. Every year, we host two Hemophilia B Men’s Retreats, two Hemophilia B Women’s Retreats and over 12 Meetings on the Road throughout the United States. We also host a Teen/Mentor, Leadership &Advocacy program in partnership with experiential learning company Gutmonkey. In 2019, we held our first “The Beats” music program. We believe in the positive benefits of strong social networks. When people have regular contact with other families in similar situations, their healthcare outcomes are improved. Research also indicates that 30-60% of patients with Hemophilia experience depression, and music is one of the activities that helps counteract this effect and has proven to be especially therapeutic.

All of our programs offer scholarships. Other areas of support include our BCares Patient Assistance Program and The William N. Drohan Scholarship for people with Hemophilia B and their siblings. Our Let’s Play Nine golf fundraiser provides tweens and teens with equipment and golf lessons in their home states. The BVoice, our advocacy program, works to empower patients as we engage with other hemophilia organizations as well as other healthcare advocacy groups including APLUS, NORD, EveryLifeFoundation, Families USA, and many others. In 2021, we will focus on establishing health equity for underserved populations within our community.

The Needs We Serve
During the early part of the COVID-19 pandemic, we conducted over 30 patient and caregiver focus groups and spent over 100 hours with patients and their families on Zoom. The data we gathered from these efforts, combined with what we learned from our patient survey, are the driving forces behind the changes we are making. This year we are rolling out several new programs and services to strengthen every area of education and information. These include new newsletter features highlighting advocacy, women bleeders, mental health, and emerging therapies. There will be other new programs offered as well to address many needs. We continually challenge ourselves to grow, change, and meet the needs of the community.

Where We’re Going
Times are changing in the world of Hemophilia and we want to ensure that our members are educated and informed. This is going to be an amazing journey, and we are excited to be a part of it. The Coalition brings together some of the most dedicated professionals in the Hemophilia community for our members, and one of our goals this year is to strengthen our relationships with the Hemophilia Treatment Centers (HTCs) nationwide. We have wonderful relationships with many but think we can do better. Now that our team has grown, we will be able to focus on expanding these connections. There are so many dedicated and passionate individuals working at HTCs and we want to know them better. As we work together, we would also love to have them as speakers at our programs and events.

The Coalition for Hemophilia B is very proud of what we have accomplished over the years. Many of our achievements only occurred through cooperative efforts with valued partners like the Hemophilia Alliance and many others. We look forward to strengthening our relationships as we continue to serve our community. For more information, please visit our website www.hemob.org or email contact@hemob.org

Also in this Issue…

Notes from Joe
· Keep Going

Legal and Washington Update
· Washington Bureau Goals

Payer Update
· Payer Team Goals for 2021

Alliance Update
· Operations Team Goals
· 2021 Meeting Schedule