Captain Bill Patsakos
Football, Pharmacy and Fighting the Good Fight
An Interview with New York’s Finest: Captain Bill Patsakos
By Renae Baker
Bill also holds a Doctor of Pharmacy degree and for the past 23 years has worked in specialty pharmacy practicing in retail, hospital, and consulting. The last 12 years saw him working as a client relations executive for CVS Specialty and as a clinical specialist. Prior to these twin careers, Bill served in the United States Army.
Bill is an active member of The Coalition for Hemophilia B. He speaks on various health conditions and volunteers at Coalition events, but Bill does not have hemophilia.
After earning his medical degree, Bill worked in cardiology when he met his wife, Christine, a respiratory therapist. As they prepared to start a family, they knew that hemophilia B was a possible concern because Christine’s father had passed from complications of the disorder.
Christine underwent genetic testing, and their queries were confirmed. It wasn’t long before Bill changed his medical focus from cardiology to bleeding disorders.
Their sons, William Jr., Seth, Jake, and Aiden, have been encouraged to live physically active lives despite three of them having moderate hemophilia B. “We’ve been very fortunate because we’ve had access to medications, and our sons are not heavy bleeders,” Bill says.
In fact, all four sons play contact sports, including baseball, football, basketball, and martial arts. “That’s been our mission; that they would be educated about their condition and not take risks that are detrimental, but that they do not allow hemophilia to prevent them from any of their dreams.”
So far, so good. William played college football and graduated. Seth and Jake are in college, and Aiden is about to attend college in the fall. “Aiden would be following William’s footsteps. William, who doesn’t have hemophilia, played college football for four years. Aiden is the number one receiver in New York, and he has multiple colleges recruiting him to play college football. It’s a miraculous feat for someone with hemophilia, but he’s a very talented football player,” Bill marvels.
“Without medication and without science and without the Coalition and other organizations, that wouldn’t be possible. These organizations were at the front of advocacy, political action, fundraising, working closely with pharmaceutical manufacturers to basically make hemophilia something that’s manageable.
“I wanted to make a difference for my sons and other people who have this condition,” Bill says. Oh, he makes a difference, all right! On top of his military, fire, and specialty pharmacy service, Bill somehow makes room to volunteer his time and talents.
He served as NYC’s FEMA Red Card Medical Unit Leader in the FDNY Incident Management Team and United States Search and Rescue Task Force 1. He’s responded to many hurricanes, earthquakes, and natural disasters. When Hurricane Maria devastated Puerto Rico, Bill helped locate all the hemophiliacs on the island and brought supplies to the HTC to be distributed to affected families there. He climbed on rooftops to help rebuild homes.
In April 2022, firefighters faced an unprecedented challenge: conducting search and rescue operations while under active artillery fire, a situation not seen since World War II. Then-FDNY Lieutenant Patsakos coordinated a major relief effort, collecting and shipping 60 tons of medical and war supplies to support the troops, doctors and firefighters in Ukraine.
Having played football from the time he was five to his high school career where his team won the 1990 New York City Championship, as soon as he was able, Bill started coaching his alma mater’s team. “I’m still chasing that championship 30 years later. We came very close this year.” He says, his determination undimmed.
Bill also volunteers at the various hemophilia organizations, including The Coalition for Hemophilia B. “I think the world of the Coalition and its staff! Kim Phelan (COO) is like a David Copperfield when it comes to resources! She’s hired some really great, dedicated staff as well!”
When asked what drives his volunteerism, Bill relates, “I’ve been blessed. Honestly, it’s very important to give back.” His service in the military and FDNY helped inform his understanding of suffering in the world. “They exposed me to tremendous poverty and healthcare disparities,” he reflects. This ignited a spark in Bill. “I’m pretty passionate about all people getting quality healthcare. I think a lot of it comes down to education. Someone may have financial means, someone else may not, but they have different barriers to healthcare.”
Being deployed overseas during his military career and being an FDNY 9/11 responder gave Bill close-up views to trauma. “I’ve witnessed a lot of mental illness, post-traumatic stress, and substance abuse, which, as a country, we’re not prepared to deal with. Many people are under-treated or not treated at all, because they are not first treating the mind. Those areas of trauma have opened my eyes to the shortcomings of our system.” He believes the United States has the best system overall, but he sees room for improvement.
Shining a light on hemophilia-specific matters, Bill states, “One of the biggest challenges for anybody is maintaining gainful employment with an insurer that can cover you. If someone with hemophilia, or who has children with hemophilia, wants to change careers, they need to make sure there is no lapse in coverage, and that they get the same good coverage. Being a firefighter, and my wife being a respiratory therapist, we have the best coverage possible in the country, but the frightening question is always hovering, ‘What if something happens to one of us? What’ll happen to the kids?’ As the boys have gotten older, they travel places. So, our biggest fear is not being there for possible major bleeds.”
Bill contemplates what he believes should be a concern for the bleeding disorder community. “Bleeding disorder organizations provide great resources, but they rely on funding that comes from pharmaceutical manufacturers who support these groups. If gene therapy creates a situation where many people no longer need to be on these medications, then that funding may dry up, and that could change access to other resources that we’ve fought so hard to make available to people. We cannot forget those who are unable to have gene therapy and still need support, resources and education and those on gene therapy need support as they will always have hemophilia, and we just don’t know how long it will last. The organizations are important so we must not waiver in our commitment to them”
Bill values the friendships he’s made within the bleeding disorder community. “Being a member of the military and fire service and being a football coach kind of puts me in one bucket of society. Without hemophilia, I probably never would’ve developed the deep relationships I have with musicians, academics, and others around the country. Hemophilia bonded us together because we have a common goal.”
In that spirit, Bill puts out this call to action: “I think the members of these organizations need to realize the value they’ve received and pay it forward. We need to contribute more of our own money, resources, and time volunteering to keep these organizations and programs going. We can also reach out to our communities and ask them to contribute to something they were not even aware of. The Coalition is always looking for volunteers so reach out to them! If we each play a small part is makes a big difference.”
What’s next? “It’s been a long career, and I love it, but it’s time to figure out a new chapter in my life. It’s always been a dream of mine to do medical missions, like Doctors Without Borders in poor countries.”
Bill closes our interview with a story about Seth. “He’s loved football his whole life. He played Little League when he was 12. The NFL Denver Broncos were preparing for the Super Bowl with Seattle and had gotten word that there was a boy in New York that had to take an IV every week to play football. They thought that was such a commitment that someone would do that for love of the game. When they won the AFC championship, they sent the signed football to our house. They were sending us to the Super Bowl! I mean the news was outside!
They interviewed Seth, and he gave a quote that stunned me. At 12 years old, he said, “I have hemophilia, but hemophilia doesn’t have me.” That’s now been the mantra for our family and others. I think that’s something we can hold onto. I don’t care if it’s hemophilia, drug addiction, post-traumatic stress, cancer, or something else; we have those conditions, but those conditions don’t have control over our lives.”
Thank you for your service, Bill!