BioMatrix is dedicated to making a difference in the bleeding disorders community. Our team of Regional Care Coordinators and Patient Care Specialists provide support that draws on personal experience and a genuine commitment to the bleeding disorders community. Our Meet-the-Team segment invites you to get to know our incredible staff a little better.
In this edition we feature Jeff Johnson.
“As a hemophiliac, my role as a Regional Care Coordinator has allowed me to continue a lifelong passion of advocating, educating, and looking out for members of the bleeding disorders community.
Working as a member of the care team has given me joy as I help my community thrive by supporting therapy adherence, minimizing bleeding episodes, navigating insurance and coverage challenges, and working one-on-one to help patients stay bleed free.”
Jeff Johnson is a dedicated, active member of the bleeding disorders community. His commitment to those he serves is evident in the exemplary service and support he provides. Jeff works tirelessly to build community and create a larger voice for a group with unique and essential needs, which has not always been heard.
His extensive leadership experience includes serving as the bleeding disorders camp activities coordinator in Oregon, as a counselor at numerous other camps, as a previous board member for Hemophilia Foundation of Oregon, and working with the Hemophilia Federation of America (HFA) to set up a local Blood Brotherhood program.
Jeff is also a writer whose work has appeared in HFA’s newsletter, PEN from LA Kelley Communications, and various chapter and community publications. In whatever capacity he can make a difference, Jeff is passionate about advocating for and serving the interests of the bleeding disorders community at a local and national level.
Tell us about yourself.
I was born in Denver, Colorado to a couple of teenage sweethearts who were not ready for a kid, especially one with hemophilia. My first few weeks were with a foster family as I was passed over for adoption. My parents came along and were told they could wait three years or take this little hemo-baby right away. They jumped at the chance.
We moved around a bit until my folks put down roots in Vancouver, Washington. Growing up, our home was generational—there were always elders, cousins, nieces and nephews, grandbabies, and a variety of scruffy dogs and cats running around. My family was always bursting with life, love and laughter! The first time I ever lived in a home of fewer than 12 was after high school when I moved out to pursue college, make music, and see the world.
Today I live with my wife of 16 years, Stephanie, and our toddler, Lily. In 2008, we packed up and made the long and arduous trek east from Vancouver to Camas, 10 minutes down the highway, where we currently reside.
Due to hepatitis C contracted from tainted clotting factor, I was unsure of ever having a baby. I did not want to pass the virus to my wife, nor risk not being there for a child. Thanks to a new effective medication, my hep C was cleared in 2017. Soon after, Lily was on her way! We are open to adopting a child in the next couple of years. The gratitude I have for my adoptive family is indescribable, and I want to pay that forward.
The most noteworthy things about myself are as follows: I was born in the 1970s with hemophilia and am still alive today. I spent a summer living in a small town just outside Paris and was conversationally fluent in French. I was a jazz musician for many years and served as Master of Ceremonies at the largest high school jazz festival in the Pacific Northwest for two decades.
I once had a life-threatening GI bleed, and nine days after treatment, I was hiking the Great Wall of China after a jazz gig in downtown Beijing. As a writer, I’ve had several articles about hemophilia and living with a disability published. I am an ordained secular minister and have performed 15 wedding ceremonies. And I love Star Wars, which is neither unique nor remarkable, but I had to put it out there!
What is your connection to the bleeding disorders community?
I have severe hemophilia A and very much consider the community to be my family. I learned my birth uncle had hemophilia and it was suspected I would too, which is partially why I was placed for adoption. Coming of age during the “hemo-caust” of the early 80s, I was a young camper who saw nearly all my early friends and heroes with hemophilia succumb to AIDS and HCV. I have been involved in the community in various capacities most of my life. Wherever and whatever I’ve been up to, the community has always been as much my family as the wonderful knuckleheads who adopted me.
What brought you to BioMatrix?
I loved the idea of caring for my fellow hemos and participating in more community events. I also wanted to learn about the industry from the inside, hoping it would make me a better advocate. So, I called a friend who had reached out to me previously about coming to the company, and after interviewing, I accepted a position with BioMatrix. Soon after, an opportunity was presented to work closely with the Boise, Idaho Hemophilia Treatment Center—it’s been a wonderful experience!
What part of being a Care Coordinator do you cherish the most?
That’s a tie between my patients and my peers. Nothing beats chatting daily with other bleeding disorders families. It’s sometimes challenging because I have to switch when interacting with my patients from my “Care Coordinator” hat to my “hemo-Yoda” hat that I’d wear if they were just a community friend, but I cherish it all, nonetheless.
Equally important to me are the people I work alongside. I trust my co-workers to take care of my hemophilia family and to do it correctly and compassionately. I am often humbled by the dedication, understanding, and care I see my fellow RCCs direct towards their patients. It makes me immensely grateful to know these are the people who are looking after my people. The people I work with are the best, and the people they care for, I consider my dearest family.
Describe your most difficult challenge.
In the past and still today, having hemophilia has been my most difficult challenge. It was the reason I was orphaned, caused the loss of my childhood camp friends, gave me hep C, and has inflicted daily pain since grade school. I overcame the challenges because of the examples I had to look up to—those who taught me to make hemophilia my strength instead of my weakness.
My health condition has made me stronger, shown me how truly precious life is, armed me with a sense of empathy and humor, and connected me to the most amazing people who walk this Earth. So hemophilia is definitely the highest hurdle I’ve ever had to jump, which is ironic because it’s also the reason my arthritic body is incapable of jumping. I manage to overcome it, again and again, every day because it also drives me, gives me purpose, and allows me a way to serve others.
To contact Jeff, call or email: 360-553-6402, jeff.johnson@biomatrixsprx.com
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