Laurie Kelley

Kismet: When Hemophilia Strangers Meet

Laurie Kelley April 7, 2025

The world is a big place: over eight billion people and counting. Hemophilia is an extremely rare blood disorder: only an estimated 400,000 worldwide. What are the chances of two people with hemophilia meeting by chance in a far-away land?

It’s called by many names: kismet, fate, destiny, Providence, divine intervention, or for the scientifically-minded, a coincidence. What are the odds that my randomly chosen travel company off Facebook provided us with a great driver, out of many, whose close friend’s father is the leader of a hemophilia organization here in Morocco?

And yet, it happened.

And it’s happened before. On a trip to Russia to attend a hemophilia event, I sat at the back of a 450-seat plane that had a stop first in Frankfurt, Germany. As I sat in my seat way in the back, I introduced myself to the gentleman to my left, as we would spend the next seven hours together. He asked what I did for work, and when I told him, he thought for a moment, then said, “The only person I know who has a son with hemophilia lives in South Africa.” I asked, “Richard [name redacted]?” He almost drew back, shocked. “Yes!” Their wives went to college together. I smiled. Coincidence?

Another time I was flying home to Boston on a short flight from Philadelphia. A very cute young man, small and wiry, boarded the plane and said he was in the middle seat; I was in the aisle. As I started to get up, he insisted I stay, and he simply hopped right over me! We asked the usual, so what do you do for work? He said he was a magician. Now that’s different. He offered me some popcorn he was eating out of a bag. We munched on popcorn and when I told him what I did for work, he said he knew someone with hemophilia. I doubted it, but I said, tell me his name. I probably know him. I don’t’ think so, the young man replied, but told me his name. I said, I know him! He was my son’s camp counselor at Paul Newman’s Hole-in-the-Wall-Gang Camp in Connecticut. Small world?

In the mid 2000s I was traveling in Kenya, after attending to patients in Nairobi, working with the local hemophilia group, and meeting with physicians. Time for safari! I waited at the small, regional airport to take a little charter flight, a nine-seater or so, to the Masai Mara. This was a small airport with one airstrip. Waiting to board the plane was a gentleman, also traveling solo. We struck up a conversation and he said he was a doctor. I mentioned where I had been and what I had been doing, and he asked if I had been to Pakistan. Several times! And I name-dropped my best friend there, Dr. Tahir Shamsi, who created the first-ever bone marrow transplant program in Pakistan, who hosted me in his family home, and who helped many with hemophilia. The man looked shocked. “I went to school with him in the UK…” he said. Providence?

My dear friend Bob with hemophilia, now deceased, many years ago lived in Florida and he and his wife decided to downsize and move. First, they had to clear out their home. Too many items, and it was overwhelming. They randomly chose an organizer company out of the phone book. The woman who came over was attractive, smart and super organized. She said, Let’s start with the bookshelves. As she started to weed through their books, she stopped. What’s this? And she pulled out my book, Raising a Child with Hemophilia. Bob told her who I was and why he had that book.

She replied, That’s my sister-in-law.”

She and I had not spoken in years for reasons beyond our control. Now, she called me and we chatted for four hours. It was marvelous—and Christmas Eve. Several years later she died of heart failure, too young. Had she not met Bob, I might never have had the chance to chat with her. Divine?

My favorite such story does not involve hemophilia directly. I was in New York City around 2010 to meet with the National Hemophilia Foundation. I had first flown in the night before to meet with colleagues. Then in the morning took a yellow taxi, one of the 13,587 in NYC, to NHF’s office. I love chatting with limo and taxi drivers as they tend to be very interesting, diverse people. I suspected this driver was from Haiti and I asked. He was and I mentioned I had been there twice (for hemophilia-related work), so we had a lively and passionate chat about his home country. He dropped me off and six hours later I walked down to Penn Station to the taxi line and waited. When my turn came up, I opened the taxi door… there was the same driver. We both just stared, not believing. What were the odds? (Please, someone mathematically inclined…) We felt… something. Fate? Kismet?

He didn’t even say hi. He blurted out, “I’m playing this cab number in the lottery tonight!”

And I replied, “If you win, you have to share it with me!”

I am scientifically oriented, rational, love the universe, nature, and evolution. But I believe there are also other powers at play, if we only open up to the possibilities. It’s fun to see these unfold, and it often helps me in my humanitarian work. I look forward to more!

Not So Appealing

Laurie Kelley March 16, 2025

I was surprised when the dentist I had visited for the past three years informed me that my insurance company no longer covered them. It was nice that they told me ahead of my appointment. The last dentist I used stiffed me for a full cleaning, which is covered under my plan, when they neglected to tell me that I was no longer covered. I appealed, and was denied. I told the dentist I’d pay half, and I found a new dentist. This has me empathizing with everyone in the bleeding disorder community, who need a lot of doctors, and the tough times we face ahead.

In a good article in The Week, health insurance companies appear to be denying a growing number of patients. Some facts:

• Health insurers process about 5 billion claims annually for reimbursement or pre-auth.

• Of these 850 million are denied.

• Data disagrees on whether these rates are rising or not

• Fewer than 1% of denied claims are appealed

• A nationwide survey last year found that 73% of health care providers claim that denials are becoming more frequent.

Claims are typically fielded by insurer-employed nurses, who ensure that claims are medically necessary. But there is evidence—no surprise—that denials are more based on saving the insurer money. A patient can appeal, but as noted, most don’t. It’s a hassle, time-consuming and often ends in another denial. I’ve seen on Facebook the frustration our community members endure trying to get the correct factor brand, dosage and amount.

The good news is that if you do appeal, about 75% are approved. It’s like fighting a traffic ticket: most likely law enforcement banks on you not going to court and fighting it. Most insurance companies may not expect you to devote the time and resources to fight a denial.

The good news is that we can fight denials. Ten states passed legislation in 2024 to reduce requirements for pre-auth, for example. But there are 50 states and 20,000 or more people with bleeding disorders. Despite the proactiveness of our national and state bleeding disorder organizations, it seems that insurance will always be our number one concern.

Be sure to always check your health insurance plan annually, as changes can and will be made for coverage. Work with your medical team to reduce paperwork and red tape. Register with your local bleeding disorder organization to stay up to date with what’s happening in your state. Speak with your specialty pharmacy—they want you covered, for sure. Charge your cell phone and be prepared for long holds… but hopefully a positive resolution.

Leadership: Anger, Respect, and Results

Laurie Kelley March 2, 2025

March is hemophilia awareness month and the recent upheaval over leadership in this country has me thinking about leadership in the hemophilia and bleeding disorder community. My son with hemophilia was born in 1987, a time when there was also a huge upheaval in leadership in the bleeding disorder community. We were a small community of 20,000 people approximately. But half of the community was lost, after contracting HIV from the very injectable medicine that was to save their lives. The pain, suffering and loss experienced by so many fomented into a groundswell of exceptional leadership. It was leadership born in a firestorm, when people realized that the government, blood banks and pharmaceutical companies did not watchdog the early CDC reports about a possible contamination. The community looked to its national nonprofit for leadership but there was massive conflict of interest as it received most of its funding from pharma. The community decided that it would need to unite at the grassroots level to make the changes that were too late for so many, but would save future generations. Like now, anger was the common fuel to spark this battle. But what won in the end was not anger but a cool head. Coming to a table, negotiating, holding our ground, and making effective change.

The leaders who made this possible were amazing people. And somewhat ordinary people. One of these was Val Bias. Val became an icon in the US hemophilia community, who possessed charm but purpose, sharp intelligence but a relaxed posture; he was a polished speaker who could also listen deeply, respectfully.

I encountered Val during my first annual hemophilia convention in 1992, at a heated town meeting. I knew vaguely what was happening to our community, but … not really. Wrapped up in my own non-HIV world, trying to figure out my place in the community, I watched with horror as a room full of patients, parents and advocates began to rip one another apart over what was happening in the community. Anger was palpable. People were furious at NHF for its lack of leadership, for advising patients to keep infusing their medicine. A patient-led group had formed and stood up, shouting and threatening. Suddenly, one clear, commanding but calm voice boomed: “Everyone, sit down and calm down.” I looked around to see who had this presence, this leadership. It was a man on the podium: Val Bias. He did not scream, denigrate, belittle, shame or bluster. His voice and aura were firm and rational.

Val had contracted HIV, and then unknowingly infected his wife, who died six months later. Val’s goal was ultimately to channel the pain and suffering of the community, of which there was much, into something for the greater good. He channeled his own outrage into leadership, and would play an important role in helping get the Ricky Ray Hemophilia Relief Fund Act of 1998 passed. This act allowed monetary compensation for those infected with HIV who have hemophilia. He and friend and colleague, Dana Kuhn, another prominent leader with a cool head and articulate speech, and some others, brought pharma and the government to the bargaining table. Later, Val became the first African-American leader of NHF.

We witnessed last week in Washington DC what happens when leadership loses its cool head. When negotiating becomes bullying. When grown men, leaders of a great country, resort to cheap shots, diversion tactics and insults. When they humiliate one who comes from a weaker position. This was an ambush on an international stage in full view of the press. It was an abuse of leadership. The press coverage could have shown a civil welcome and brief discussion, while the more serious negotiating could take place behind closed doors. Instead, it was a calculated performance. At this time, all it has done is divide Americans further, increased anger, and drawn international allies closer together.

Perhaps this happened to our leaders who went to Washington DC to fight for compensation and a safer blood supply for the 10,000 who died. Were they insulted, bullied, told to go home? I don’t know. I do know there was widespread hysteria regarding people with HIV, including those with hemophilia. The public was ignorant, fearful and allowed their emotions to overrun common sense. Eventually, armed with data, statistic, personal stories, rationality and bravery, community leaders took on the giants responsible for the nation’s tainted blood supply. And cool heads prevailed.

Insults, shouting, humiliation, embarrassment… these have no place in effective leadership. To resolve a conflict, an outcome has to be kept in mind. But negative and quite frankly juvenile tactics will not result in the desired outcome. It will only cause defensiveness. The meeting last week ended in a stalemate.

Our community had a clear and desired outcome heading to Washington DC in the 1980s and 90s: to put parameters in place to make the nation’s blood supply safe; to win compensation for those infected with HIV and hepatitis C; to have those responsible own what transpired. It was such a major campaign, handled with strategic moves and even respect, that other disease groups still look to the bleeding disorder community for advocacy advice to this day. We became a model of advocacy in healthcare. And our unity and focus—and eventual cool-headed approach—made us strong and powerful. And successful.

It is possible to be powerful, to win conquests and concessions, to reach goals without scorn, shame or humiliating others. Look no further than Abraham Lincoln. He was a divisive incoming president at a terrible time in the US. He was called names, was shamed. Today? He is universally praised and admired. Lincoln did not mock the weak, did not boast of his achievements, and was not cruel. He had to unite an entire nation, terribly divided, through a civil war. While keeping cool, and leading with dignity, he appealed to the “better angels of our nature.” His leadership inspired. We can only hope to achieve this now, once we work through the anger and rage.

Fahim’s Story: Help for Prisoners

Laurie Kelley February 16, 2025

LA Kelley Communications’ Maximum Impact program offers help to those with hemophilia in developing countries, without the need for overhead or fundraisers. In addition to funding surgeries and providing factor, we sometimes assist patients like Fahim, who needs financial support for attending college. We’ve provided factor for him, and registration funds, and money to buy a laptop. Here’s his story:

My name is Fahim Ur Rahman. I am a 31-year-old person living with hemophilia A, a genetic disorder that affects the blood’s ability to clot. I am from the Pukhtunkhwa province in Pakistan and live in District Tank, a rural area 365 kilometers (226 miles) away from the provincial capital, Peshawar.

Growing up in a rural village, I faced many challenges. My father, a retired senior English teacher, encouraged me to pursue my education despite my health issues. I have four other brothers who also live with hemophilia, and together, we have learned to navigate the challenges it presents.

Specifically, I live in Mulazai, a rural village 35 kilometers (22 miles) from Tank city. Our village is near mountains, with a dry and warm climate. We face challenges like poor transportation, healthcare, and market access. Terrorism has also affected our area, causing insecurity. Furthermore, our internet and mobile network connectivity is limited, making it hard for me, a hemophilia patient, to access essential services.

I recently completed my MSc Criminology from the University of Peshawar (2019-2021). My research focused on “Institutional Rehabilitation of Male Prisoners in Central Prison Peshawar.” This experience opened my eyes to the shortcomings of our prison system, particularly regarding juvenile rehabilitation.

What drew me to criminology? I was excited to learn about this new subject when the University of Peshawar introduced its criminology program. As I delved deeper, I saw how crimes affected juveniles, families, and communities. I realized our justice system needed improvement, and I wanted to contribute to creating a safer, more just society.

My research focuses on juvenile justice, specifically successful rehabilitation and reintegration into society. I aim to help juveniles become productive members of society, lowering recidivism rates. The Norwegian prison system, particularly Halden prison, has impressed me with its low recidivism rate due to successful rehabilitation techniques.

Currently, I am pursuing another degree in MS Criminology at Quaid-i-Azam University in Islamabad, completing in September 2025, Insha’Allah (God willing). My research topic is “Exploring the Role of Education in Juvenile Rehabilitation: Insights from Counselors at Central Prison Peshawar.” This research investigates the impact of education on juvenile rehabilitation and identifies effective strategies for reintegration.

As someone with hemophilia, I empathize with those facing challenges within the prison system. My goal is to contribute to a more just, compassionate society where prisoners can reform and reintegrate as productive members. In the future, I plan to work with organizations and policymakers to implement evidence-based practices in juvenile justice. I also aim to improve Peshawar’s slum areas by providing gentrification ideas, lowering juvenile delinquency rates.

To further enhance my knowledge, I aspire to pursue a PhD degree in Juvenile Rehabilitation. This will allow me to explore innovative approaches to rehabilitation and reintegration, developing effective strategies for addressing complex needs within the justice system.

In conclusion, my experiences, research, and passion for criminology have equipped me to make a meaningful difference in the lives of juveniles and prisoners. I am committed to leveraging my expertise to create positive change, ensuring that individuals receive the support and rehabilitation they need to thrive within their communities.

Rest in Peace, First Lady

Laurie Kelley February 2, 2025

Suzanne Massie, who died a week ago at age 94, will always be our First Lady of hemophilia. Her passing is a significant, inevitable, yet still sorrowful. There’s hole in the world, in our community, where she once was. I fear though, that newer members of our community will not have heard of her, or the important impact she had. I want to ensure she is honored, as she should be. Besides Queen Victoria, who else could be our first lady, the first important mother of a child with hemophilia?

I first talked to Suzanne in May 1992, who was bursting with ideas for the two of us, including getting an official invitation to Russia for me. Hemophilia? Russia? How did all this come about?

It seemed predestined. On Christmas Day, 1986, my mother casually handed me a present she forgot to wrap: Peter the Great, by Pulitzer Prize winner Robert K. Massie. “His son has hemophilia; that’s why he writes about Russian history.” Massie had already published Nicolas and Alexandra, about the last Tsar of Russia whose son had hemophilia. I devoured the book, and Massie became my favorite author. Neither my mother nor I knew at the time I was newly pregnant; nine months later I delivered a beautiful baby—you guessed it, who had hemophilia. Even more weird, knowing it would be a long labor, I brought along my copy of Peter the Great to re-read, complete with yellow highlighter. The nurses teased me: What did I have, an exam the next day?

The next month, at our first clinic meeting, our nurse, Jocelyn, suggest I might like to read Journey, by Robert K. and Suzanne Massie. She asked if I knew Bob Massie, and I said yes, Peter the Great was my favorite book. And she said no, I meant the son, Bob. Of course I had never met him. It turned out he lived two miles from my house.

I then read Journey, which I believe is the first real book about hemophilia. It chronicled their life, and the birth of their son Bob who was born in 1958. I was in tears by page 11 and couldn’t read any further. Then unbelievably, Bob actually called me one frigid night in January 1988. He was the first person with him hemophilia I ever talked to in my life. He was so kind, so relaxed, and completely put my mind at ease. I was a new mom, with a lot of stress and debt, and a new baby with this obscure disorder. Bob, it would turn out, was just as amazing and kind as his mother.

Eventually I was able to meet his mother. I think I offered to use my database for my newsletter PEN to reach out to families with hemophilia to collect clothing and toys for Christmas for children in Saint Petersburg, Russia. Even I didn’t know the extent to which Suzanne Massie was so important. With the couple’s focus on Russian history, and Suzanne’s involvement in Russia, she actually became President Ronald Reagan’s adviser on Russia. You may have heard the phrase “Trust but verify.” This comes from a famous Russian phrase Doveryai, no proveryai. Suzanne offered the phrase to Reagan when dealing with Russians. Reagan like the phrase so much, it became a White House policy.

Our efforts worked: we received 800 lbs of clothing and toys for the kids in Saint Petersburg, All gifts from the US hemophilia community. I remember Suzanne visited me at the warehouse, where the boxes ended up, and turned and looked at me, still a young mom, and said “Look how much power you have.” I believe she felt proud of me. And Suzanne, who was 61 at the time, and I spent about four hours in that very cold U-Haul warehouse sorting and packaging up clothing and toys. I marveled at her drive, energy, and stamina. Yes, she became my hero.

Suzanne, surrounded by the St. Petersburg, Russia, children who received the gifts we collected

We spent more time together. In March 1993 I went to Suzanne’s house in Boston for our interview for my newsletter PEN. I recall how deeply she expressed love for the children. with hemophilia in Russia–who at that time had no access to factor.

In May 1993, I visited at her house again and we watched a 70-minute Russian documentary of her life. The Russians loved her. She had founded a nonprofit called the Firebird Foundation, which helped children with hemophilia in the Saint Petersburg area.

I also got to know Bob better, especially in September 1993, when we hosted him and his wife for dinner at our small home in Medford, as he discussed plans to run for Lt. Governor of Massachusetts. This family was amazing!

In 1997, I visited Russia for the first time, and in Saint Petersburg, I was able to meet Elyena, the nurse in whom Suzanne had entrusted the Firebird Foundation. Suzanne later asked me about the trip and asked, didn’t you feel like home when you arrived in Russia? Her love for that country was immeasurable.

Time went by, and with three children I was very busy. By then I had my business, and also had started Save One Life, a nonprofit dedicated to children with hemophilia in developing countries. We had a major fundraiser approaching in 2012, and it was my chance to dedicate the gala to Suzanne. We would honor her for her work for children in Russia and for being such an inspiration to all of us. I decided first to visit her in Maine where she lived now. It was a four and a half hour ride each way, in one day. But it was so well worth it. Suzanne was of course older, slowed down a bit, caring for her husband, but was in the process of writing a book about her years with Reagan. Of course she was!

Bob and his family, and also Bob’s sister Susanna, who I had met quite a few years before, and who has two sons with hemophilia, and all their children arrived for the gala held in Massachusetts. It was a wonderful event with a huge turnout. Suzanne is a great speaker, so knowledgeable, and yet connects with everybody. At the end of the event both she and her son Bob signed their books (Bob had a newly published book, A Song in the Night). And still, I felt that I could never do enough to praise this amazing woman who made such an impression on me, and gave me the confidence to continue my work, especially internationally. I could never fill her boots or take her place, but she was a constant inspiration in my life to help me fulfill my mission.

I read online that in 2021 she was awarded Russian citizenship. What a fitting tribute to such a dedicated woman. I will never forget her, and I have all her books in my library. I hope this generation of mothers can look to her for inspiration as well. Read her books; learn about her life. She’s living proof that one person can impact a global community.

Massie, Suzanne, Trust but Verify: Reagan, Russia and Me, Maine Authors Publishing, 2013: Paperback and Hardcover.
Massie, Suzanne, Land of the Firebird: The Beauty of Old Russia, Simon & Schuster 1980: Paperback; Touchstone 1982.
Massie, Suzanne, Pavlovsk: The Life of a Russian Palace, Little Brown & Co. 1990: Paperback; HeartTree Press 1999.
Massie, Suzanne, The Living Mirror, Doubleday & Co. Garden City New York 1972: Paperback: Anchor 1972.
Massie, Suzanne & Robert Massie, Journey, Alfred A. Knopf, New York 1975: Paperback: Warner’s 1976; Ballantine Books 1984.