In 2010, the undefeated Piscataway High School Chiefs gathered in their meeting room before one of the biggest games of the season. The room buzzed with energy; to advance, the Chiefs would have to beat the also-undefeated Sayreville Bombers.  

Their coach John moved to the front of the room with practiced deliberation. He clicked play on a video of the 1985 middleweight championship fight between Marvin Hagler and Thomas Hearns: only three rounds, but an all-out battle.

“We knew our football game would be a heavyweight fight,” John reflects, “so we wanted to prepare the team. Hearns talked a big game, but Hagler, who won, wasn’t much of a talker. We viewed ourselves in the same way: not a lot of talk, just wanted to go out and keep slugging.” 

And it worked – the Chiefs beat the Bombers 14-7 that night and went on to finish 12-0 that year, winning a sectional championship.

The choice of pre-game motivation came from four decades of John grappling with, and finding ways to handle, his own physical limits. Now 61 years old, John has spent his career coaching a sport that his body never let him play. 

Born with hemophilia, he experienced up to 180 bleeding episodes each year throughout his early life. Each bleed meant potential permanent joint damage; each injury reinforced the boundaries of his condition. 

Yet John refused to let his hemophilia stop him from living his life, a philosophy that shapes not only his own sense of self but his interactions with his players. Coaching since the 1980s, John has used his experiences to connect with players facing their own battles, saying: “I discuss with the team my hemophilia, the HIV status, the attitude — you have to keep at it every day. You have to keep a goal in mind. You cannot give up, ever. It’s not an option.”

Early Years and Adaptation

For John’s parents, their son’s hemophilia diagnosis came as a complete shock. In around 66% of cases, people born with this genetic bleeding disorder have a family history of the condition. John is one of the 33% of people born with hemophilia with no family history. 

His family found themselves scrambling to find appropriate medical care. But, as John says, “I’ve been very fortunate in my treatment – I’ve been around the best doctors in the world.” 

John’s parents connected with some of the most renowned specialists in the field, starting with Dr. Margaret Hilgartner Arky, a pediatric hematologist who pioneered new treatment approaches for hemophilia. John remembers her as “a very stately Southern woman, about 6’1 with blonde hair and an immediate presence about her. She was literally writing books about hemophilia, so at a very early age, I knew everything there was to know about it.” 

Closer to home, Dr. L. Michael Kuhn provided crucial support for both emergencies and regular care when travel to New York proved too far. Unfortunately, tragedy struck when Dr. Kuhn, his wife, and their six children were killed in a plane crash in 1974, when John was eight years old. “It was a significant loss for our community, medical and otherwise,” John tells me. 

The journey then led to Dr. Parvin Saidi at Robert Wood Johnson Hospital, chosen for proximity but delivering excellence in care. But at the end of the day, John is thankful that all of his physicians kept him abreast of the information on hemophilia that helped him learn more about his condition. 

The Physical Realities of Hemophilia

While John was incredibly lucky with his physicians, he still had to navigate the daily difficulties associated with hemophilia beyond the healthcare scene. School, for example, became a daily exercise in handling differences.

“Having hemophilia shaped every part of me: mental, physical, emotional. It’s been extremely impactful,” John explains. “Physically, I had to deal with the injuries, the bleeds. Emotionally, everyone wants to fit in growing up. That’s not always easy when you’re in a cast, boot, wheelchair, or crutches. Your elbow is disfigured, so it becomes harder. Mentally, to have to work around the daily challenges of a disease like this develops your mental ability. At times you have to block out the pain because you have other things to do.” 

He stops for a moment and reflects before adding, “In a way, it’s a benefit as a coping skill. This is how I developed as a person: I had to learn to cope.” 

Despite the frequent bleeds — 150 to 180 bleeds annually from ages 6 through 20 — John still found himself interested in more physical endeavors. He played basketball with friends that “could get a little bump-and-rough,” and two-hand touch football, though his friends would take it easy on him. 

He even wrestled for a period, but with limitations: “You can do a lot of cranking and torquing in wrestling, but my opponents were aware and never tried to attack my left elbow or knee. It was contact, but I couldn’t do it competitively. At practice it was controlled because of drills.” 

At one point, John began boxing. He couldn’t spar, but could enter the ring and work with someone on hitting bags or conquering different moves. With a laugh, John says, “I guess I’ve always been drawn to contact.” 

Still, these activities had physical consequences: joint bleeds and inflammation, limited range of motion, and chronic pain. These are not uncommon in individuals with hemophilia; one study found that an estimated 40-70% of people with hemophilia live with chronic pain. 

HIV/AIDS in the 1980s

On June 5, 1981, the U.S. Center for Disease Control (CDC) published an article detailing a rare lung infection in five previously healthy gay men in Los Angeles, California. Looking back, we now know that this was the first report that marked the onset of the AIDS epidemic. But what many people may not know is that HIV/AIDS had much farther-reaching effects than the LGBTQ+ community. 

During this time period, hemophilia was treated using clotting factor concentrates derived from donated human plasma. These allowed people with hemophilia to manage bleeding episodes more effectively. 

But these products became vectors for HIV transmission before the virus was identified and blood screening became standard practice. The implementation of heat-treated products came too late; thousands of individuals with hemophilia were exposed to HIV. 

John was infected at age 16, though he wouldn’t learn his HIV-positive status until age 21. The revelation added another layer to his daily challenges. 

“I used to think that I was limited by hemophilia. That was my battlefield every day. I woke up every day looking to fight, as if I was going to beat this. That was my mindset. I’d go out for three or four days, play sports, and then BAM – ankle injury. And the rage would build because hemophilia got me again, and I’d have to fight it more,” John explains. “Then I found out I was HIV-positive, which became another opponent to fight. And the last thing I thought about every night and the first thing I thought about every morning was how to get into my body and make all my cells fight the virus.” 

Then, one morning, John had a revelation — one that continues to shape his perspective to this day: he realized that he had everything all wrong. 

He says, “I was fighting against diseases I wasn’t going to beat, and that was wasted energy. The battle is with yourself. You’re the one who controls things. You can’t conquer a mountain; you conquer yourself, your fears, your doubts. Your limitations are yours. So I realized that those diseases don’t control me, because I control me. I knew I had to see my vision through and not be concerned with the false limits I put on myself.” 

Today, John encourages others to remember that neither HIV nor hemophilia are death sentences; treatment options have come a significant way, and there’s no reason why people with hemophilia or HIV aren’t perfectly capable of completing whatever they put their mind to. 

“I hate when people feel sorry for me about hemophilia or HIV,” he says. “I don’t accept that.” 

Finding a Path Forward

As John entered his 20s, he began experiencing more debilitating physical effects of his hemophilia, effects that continued into his 50s: joint damage, pain, bleeds. “The only thing I could really do for a prolonged period was swim,” John says. “That was difficult.” 

Still, John’s connection to sports never wavered. He found creative ways to participate. John majored in Physical Education in college, then specialized in adaptive physical education, bringing his unique understanding of physical limitations to special education students. His career evolved to include teaching science, English, and working as a resource room teacher, always maintaining that connection between physical activity and education.

“Those kids don’t need you to feel sorry for them,” John says. “They need education, someone to push them, encouragement. For people to see past what is perceived as a limitation. They may have a condition that impacts them, but they’re capable of doing so much.”

Coaching the Next Generation

During the mid-1980s, John also began coaching football. This role did allow, and has allowed, him to engage with the physical intensity of the sport while making unique connections with his players.

With a grin, he shares, “Football is a very aggressive sport. To play it well, the kids need to have that mindset when they step onto the field. That’s something I can relate to. I know what I’d like to be able to do, and trying to channel that understanding of the game to them is fun. A team that goes onto the field is a reflection of the coaches. When they play it well and they play it hard, it’s part of you that’s out there too. That makes us a close group, and it’s very fulfilling.” 

John’s experience with chronic illness has also given him a unique vantage point that allows him to more deeply connect with players going through their own challenges. Recently, he counseled a lineman who had lost his sister to cancer before suffering a gruesome knee injury, both within a year of each other. It was doubtful if he’d ever make it back to play. 

John took the time to speak with both the player and his family, sharing his personal perspective on fighting through injuries. “I tried to be very positive about things and reinforce that he should never give up,” John shares. “You can expect ups and downs. You’ll make progress, then feel like you’re going nowhere. But you must keep your main goal in mind.”

The player, who returned this year, was still somewhat limited by his injury — but John made it clear that he didn’t put all that work in just to sit on the bench. 

To John, giving back to others through sports and self-empowerment represents a crucial part of his identity. His goal in coaching is to help the students he works with learn to deal with adversity, or embody a stronger sense of self. 

“To see them being successful, and to hope that football helped them in some way,” John says, “that’s really the most satisfying part of coaching to me.” 

Hemlibra

Another element that makes John’s coaching so successful (though not in such an interpersonal way)? Hemlibra. 

Hemlibra is currently approved to prevent or reduce the frequency of bleeding episodes in adults and children living with hemophilia A. Before Hemlibra, patients often received treatment for hemophilia A through IV infusions that had to be administered several times a week, or a Port-a-Cath (or Port) that would deliver intravenous treatment via a surgically inserted device.

John began Hemlibra in September 2019 — and his relationship with hemophilia was fundamentally altered. With his bi-weekly dosing, John has seen his bleeding episodes virtually disappear.

“I’ve begun to wonder: do I even have hemophilia anymore?” he questions with a laugh. “It’s a weird experience to go from 100 annual bleeds in my 20s, then roughly 50 a year from age 30 to 50, to suddenly nothing. I have not had a bleed in five and a half years. To go from all of those injuries to this is incredible.”

Now John maintains a more active lifestyle. He loves to be outside, fossiling and hiking with his wife. They do yoga, work out, and John even plays tennis four or five times a week. 

“Any time we can get up and do something, we do. We have plenty of time for it now,” he says. Though joint pain persists from years of arthritic damage, Hemlibra has undoubtedly given John a renewed lease on life. 

At the same time, John has also found a voice for advocacy. The stark contrast between his current quality-of-life and his past experiences has made him acutely aware of treatment inequities worldwide, especially in relation to treatment access. 

With his voice tightening, John tells me, “I’m afforded effective products and have had amazing care. But it bothers me that there are people in other parts of the world who have nothing. Clotting factor has been around for fifty years, and some places still don’t have that. Hemlibra still isn’t accessible to children in those areas, and it blows my mind to see children today, in 2025, having to suffer debilitating joint bleeds when it’s so easily treatable to a large degree.” 

He points to the pharmaceutical industry’s profit margins with particular frustration. 

“Drug companies make billions of dollars a year. I understand the research, the money that goes into developing products. But clotting factors have been around for decades. I started infusing myself at ten years old. So why are there kids that we can’t get this to?” 

For John, this inequity represents a fundamental failure of the global healthcare system, saying, “They should not go without these things that are, to me, basic. It’s heartbreaking. It really bothers me.” 

This disparity between treatment possibilities and treatment realities continues to shape the hemophilia landscape. While some patients access transformative medications that nearly eliminate symptoms, others still face the same challenges John confronted decades ago.

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If you would like to contribute to improving treatment access, consider learning more about or donating to the World Federation of Hemophilia (WFH)’s Humanitarian Aid Program.

• Roche joined the World Federation of Hemophilia’s (WFH) Humanitarian Aid Program in 2019, a landmark initiative leading the effort to change the lack of access to care and treatment for people with inherited bleeding disorders in developing countries, with a commitment to provide prophylactic treatment to more than 1,000 people with hemophilia A over 10 years in countries where there is little or no access.
• As of February 2024, 1,192 patients in 34 countries have received donated treatment from Roche. 
• Roche and Genentech are always looking for new ways to collaborate with key stakeholders, including healthcare professionals, patient organizations and national healthcare systems, to understand barriers to access and to identify and deliver novel, tailored solutions to overcome local challenges and bridge current gaps in care for people with hemophilia A all over the world.
• Hemlibra is accessible in 120 countries and 25,000 patients are treated with Hemlibra worldwide.