When we heard the request for help, we could not refuse. A gentleman with hemophilia in India, Mr. C, was diagnosed with prostate cancer and needed financial assistance. While his hospital, the Christian Medical College, Vellore, India, helps pay for most of the expenses, it does not cover all of them. And most people with India must sacrifice greatly to cover the extra expenses. Even without hemophilia, patients must ask relatives for financial help, sacrifice their life savings, or… go without medical treatment.
Our colleague and partner, Usha Parthasarathy, alerted us to this gentleman’s need.
Prostate cancer is a leading cancer among men, with approximately one in eight men diagnosed during their lifetime. Cancer is diagnosed when cells in the prostate gland grow abnormally and rapidly. It’s often slow-growing, and many cases are detected early due to screening, leading to high survival rates. Surgery for Mr. C should ensure a long life. His hemophilia is cared for well by his local chapter.
We wish Mr. C a wonderful recovery, and are pleased to share his photos (with his permission) and the lovely letter he sent.
Thanks to CMC Vellore for caring for him, and to Usha for always watching over our Indian patients.
Maximum Impact is an LA Kelley Communications program that provides free factor, and funding for surgery, school and living needs. No overhead, fundraising or admin fees. Just maximum impact.
There are many ways to learn, and to learn about your bleeding disorder. Our society, though, is biased toward visual learning, because humans are mainly visual beings. From advertising to teaching tools, we are all about sight, color, and shape. Studies have shown that 65% of people learn best visually.1
But not everyone learns visually. It’s now recognized that people have individual differences when it comes to learning, and even visual learners learn in different ways. For example, one person learns by visiting art museums, but another likes watching TV documentaries; both are visual methods.
Research in the field of learning modes, or styles, led to the widely cited Theory of Multiple Intelligences, developed in 1983 by Harvard University’s Howard Gardner. Gardner found nine distinct types of “intelligences,” which are now used to describe how people learn.
What’s your preferred learning mode? And how can you harness it to learn about managing your bleeding disorder?
Nine Learning Modes
You may possess several of the nine modes listed here, with one being dominant. Or you may use different modes in various circumstances. For example, I’m a verbal learner who likes to learn in a solitary way. But I’m also learning a new piece on the piano, which requires visual, aural, and physical modes. You can also change your mix by developing and enhancing your less dominant modes. And if you don’t use particular learning modes, they may weaken.
1. Visual (spatial): pictures, images, understanding of space
2. Aural (auditory-musical): sound, music
3. Verbal (linguistic): words, in both speech and writing
4. Physical (kinesthetic): body, hands, sense of touch
5. Logical (mathematical): numbers, logic, reasoning, systems
6. Social (interpersonal): learning by being with other people
7. Solitary (intrapersonal): learning alone, using self-study
8. Natural: being outside; identifying plants, animals, maps
9. Existential: questioning human existence, the meaning of life and death, the human condition
The key to learning about bleeding disorders is to recognize how you learn best, and then to find resources that use your strongest modes to help you learn faster and more effectively.
In the Beginning, There Were Books
There was a time when virtually no information on bleeding disorders was available in any learning format, except meeting with your hematologist. That’s one of the reasons I wrote Raising a Child with Hemophilia in 1991, and published all of our subsequent books: to reach the verbal-oriented people in our community, and to provide a tool for patients to use all the time, not just at in-person meetings. For me, social support group meetings weren’t so useful. More experienced parents seemed to want to scare the rest of us with their bleeding horror stories! Medical journals and published articles seemed more logical and reliable.
Fortunately, for those who are not mainly verbal learners, we now have plenty of other ways to learn. There are national and local nonprofit organization meetings, which may appeal to more social-oriented people. There are podcasts and YouTube videos for aural learners. And there are adventure and outdoor activities to appeal to physical and kinesthetic learners, which may include rafting, hiking, zip-lining, and camping. No matter your learning style, there’s bound to be some educational resource you’ll enjoy, to help you understand your bleeding disorder.
Learning modes may shift when you’re stressed. It’s normal to want to be with others for support, so social learning may become dominant for a while. Those who started with only books, back in the 1990s and 2000s, now turn to online resources: the parenting groups for bleeding disorders on Facebook count members in the thousands.
Young people with bleeding disorders seem to gravitate toward social media for information. These resources represent a combination of learning modes, including social, aural, physical, and visual. Indeed, multimedia is becoming the best way to reach all types of learners.One mom summed up how multimedia learning can work: “Initially, we devoured anything by NHF [now NBDF]. Then we found LA Kelley Communications’ books. With medical complications, we researched online and have auto-email updates sent to us. We regularly attend inhibitor summits and occasionally our local hemophilia groups. Last of all, we turn to Facebook for real-world experiences.”
Think about how you best learn: what’s your preferred mode? Then find the resources that appeal to that mode, to make learning effective and fun!
1. Richard M. Felder and Linda Silverman, “Learning and Teaching Styles in Engineering Education,” Engineering Education 78(7), 674–81 (1988). This study later became a foundation for a standardized test called the Index of Learning Styles (ILS).
This week I’d like to share an important and thoughtful essay about leadership, response to crises and a call to action, from Jonathan James, person with hemophilia, and CEO of HOPE Charities:
As someone who spent over a decade as a financial advisor, stockbroker, and asset manager, I’ve navigated the turbulent waters of domestic and global economics, weathering three major recessions. My role was especially valuable to guide clients through downmarkets, helping them make sound, and long-term investment decisions for their retirement savings. Those experiences taught me a critical lesson: uncertainty is the enemy of consistency, yet history shows the U.S. stock market has risen more often than it has fallen over the long term. According to recent data from the S&P 500, which tracks the performance of 500 large U.S. companies, the market has delivered an average annual return of approximately 10% before inflation over the past 30 years, despite periodic downturns (Source: S&P Global, 2025 data update). Recovery from bear markets has often been swift, with the average downturn lasting about 9.6 months and recoveries taking roughly the same or less time, as noted in a 2024 analysis by the National Bureau of Economic Research.
This resilience offers a valuable perspective as we face current uncertainties in healthcare under the new administration. Leadership changes, suspected terminations at agencies like the CDC, and shifts in healthcare infrastructure have heightened public anxiety. Yet, just as in financial markets, panic-driven decisions can cause more harm than the uncertainty itself. A 2023 study from the American Psychological Association highlighted that fear-based decision-making during economic crises often leads to poorer outcomes, a pattern that may parallel healthcare policy reactions today. The good news? Uncertainty doesn’t necessarily spell failure. By staying informed and strategic, we CAN weather this storm together.
The Media’s Role in Amplifying Fear
One societal challenge during these times is the media’s tendency to amplify extremes. News outlets, including social media, thrive on fear, shock, and sensationalism, driving ad revenue and engagement. A 2025 report from the Pew Research Center found that 68% of U.S. adults get health-related news from social media, where fear-inducing headlines often outpace balanced reporting. This groupthink can lead to emotional distress, but history reminds us to evaluate contextover myopic details. For those dependent on high-cost medications, insurance reimbursements, and drug supply chains, this emotional noise can obscure the bigger picture: the world will continue to function at a high level once the storm passes.
The CDC’s Role and the Blood Supply Safety Net
The CDC plays a vital role in surveilling and researching significant health concerns, including blood safety through its Blood Safety Division. This division monitors clotting factors, synthetic medications for bleeding disorders, immunoglobulins, blood transfusions, plasma, and platelet spheres—critical for patient safety. The fear lingers from the HIV and hepatitis crises of the late 1980s and early 1990s when tainted blood supplies caused widespread harm. A 2024 CDC retrospective noted that these incidents led to over 20,000 HIV infections and 60,000 hepatitis C cases linked to transfusions before improved oversight (CDC, 2024 Lookback Report). Since the 1990s, however, the blood industry has self-regulated with high safety standards, reducing the CDC’s role to observation rather than quality assurance. While viruses occasionally slip through—e.g., a 2023 minor West Nile virus contamination affecting 12 patients, per the American Red Cross—the system remains robust.
CDC funding also supports nonprofits that provide expert analysis in specific areas. This funding is often connected to understanding demographic outcomes, involvement, and status that could be used to influence future therapies and resources. If this funding is cut, advocacy groups will lose the ability to continue this important work, but due to their diversified income streams—averaging 70% from private donations, corporate donations, and events, per a 2024 National Hemophilia Foundation report—ensure survival. The real concern isn’t their demise but the potential reduction in vital long-term advocacy strength.
The CDC also supports research and surveillance, influencing future therapies. Yet, commercial entities have outpaced CDC research in developing advanced treatments. A 2025 BioPharma Dive analysis revealed that private-sector innovations in gene therapies for bleeding disorders have reduced treatment costs by 15% since 2020, outstripping public-sector timelines.
Access Challenges: A Critical Emergency
The most pressing issue today is access to life-saving medications, an all-hands-on-deck emergency for those affected by failed policies. Approximately 65% of Americans are insured through employer benefit plans, with a significant portion being self-funded, where employers cover 100% of claims (Kaiser Family Foundation, 2025 Health Insurance Coverage Report). Under ERISA law, these plans are allowed to exclude specialty medications to protect the employer’s solvency, a policy that has spurred alternative funding programs (AFPs). These programs leverage manufacturer free-drug programs, intended for temporary transitions and coverage gaps, to supply medications, charging employers commissions on “savings.” A 2025 peer-reviewed study in the Journal of Managed Care & Specialty Pharmacy found that patients using AFPs face an average 68-day wait for medications—a delay that can be life-threatening for those with bleeding disorders at worst and increase long-term joint disease vulnerability at best reversing nearly 20 years of progress for people on preventative treatment.
Another access barrier is patient choice, eroded by health insurance companies owning pharmacy benefit managers (PBMs) and forcing the use of in-house specialty pharmacies. Since 2007, the “big three”—CVS, Accredo, and Express Scripts—control 85% of specialty drug distribution, per a 2025 IQVIA report. This limits access to other pharmacies offering vital ancillary services like physical therapy, mental health, education, in-home infusion nursing, or specialized medical supplies, which mail-order options often omit. Delays in delivery, improper medication storage, and rising deductibles exacerbate the pressure on patients and disrupt adherence increasing vulnerability as noted in a 2024 Patient Advocate Foundation survey where 40% reported access issues due to PBM policies.
The Ethics of Cost-Sharing Policies
Adding to the burden of management and access are accumulator adjuster and maximizer policies, which prevent financial assistance from counting toward out-of-pocket deductibles. Unlike car or life insurance, where premium payments obligate coverage payment sources, health insurance companies have been allowed to deny this obligation. A 2025 Common Wealth Fund analysis found that 25% of insured Americans with chronic conditions faced higher costs due to these policies, a practice many deem unethical. If insurers won’t mitigate catastrophic risk, they shouldn’t issue policies, a stance echoed by 78% of respondents in a 2024 Gallup poll on healthcare fairness.
A Unified Voice for Change
These access challenges, though specific, affect millions of people in the United States. But the good news is that we can overcome this if we have clear and distinct solutions with consistent advocacy efforts. The bleeding disorder community led the national effort to create change through past policy struggles, like the bleeding disorders community’s historic push post-HIV crisis. That advocacy, driven by personal experience and data, reshaped blood safety policies, reducing transfusion-related infections by 90% since the 1990s (CDC, 2024). Today, we stand on the cusp of another historic shift for chronic and rare disease communities. Congress has debated PBM reform and accumulator policy fixes—like the HELP Act—since the 118th Congress, but progress stalls, with only 12 states enacting bans by 2025, per the National Conference of State Legislatures. Enforcement remains weak.
Change requires a unified voice, grounded in clarity, data, and passion—not just emotion. The bleeding disorders community’s strength can inspire a broader movement if we embrace it properly. I am asking you to get involved and share your story to join me in this fight, leveraging our collective experience to pressure decision-makers. Together, we can plug the holes in this boat threatened by a significant storm, ensuring equitable access for generations to come. The bleeding disorders community has been strong in times past and we can be strong again. Stay tuned for more information to come on these important issues as we work toward a future that is stronger than ever.
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!
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.
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