Growing up with six active brothers, I developed a taste for speed, adventure and excitement. We had bikes, our woods, and Riverside Park in Agawam, Massachusetts in the 1960s and 70s, now a Six Flags. My favorite ride? The roller coaster. Whether the old fashioned wooden one like the Cannonball, in New Hampshire, or the powerful, green, gigantic Hulk in Islands of Adventure, Florida, the faster and crazier, the better.
But you might want to take some precautions before passing along your love of speed and excitement to your youngster with a bleeding disorder. Are roller coaster rides safe for children with bleeding disorders?
Overall, roller coasters are very safe, if you look at the statistics. From the International Association of Amusement Parks and Attractions (IAAPA) says there are approximately 0.9 injuries per million rides. In 2021, there were an estimated 1,200 ride-related injuries in the U.S. The most common injury involves the head or neck.
How can you play it safe?
First, take some common-sense precautions:
Obey the listed age, height, weight, and health restrictions. Your child grows each year and has grown since last year — are they tall enough to qualify as a rider?
Watch the ride first, so you know what to expect. See how riders are loaded and unloaded. Watch how the safety belts are fastened first, so that when you get on the ride, you know what to do.
Ask the park employee to double check your safety belt.
Keep you head, hands, arms legs and feet inside the ride at all times. Just like they tell you.
Keep your eyes looking forward and your head up to protect your neck from injury. Roller coasters are prone to sudden accelerations and abrupt changes in direction. Keep you head up and looking forward to ensure the sudden jerks don’t hurt your neck. (I actually have cradled mine against the head rest to prevent the neck-snapping turns)
Wait until instructed to remove your safety belt/lap bars/shoulder harnesses and exit the ride.
Take frequent breaks between roller coaster rides. Give your body time to rest and readjust before jumping onto the next round. If you feel unwell, dizzy, or nauseated, don’t ride!
Don’t get on a ride that looks poorly maintained. Be wary of those road-side, temporary carnivals.
Don’t stand while a ride is in motion. Even if the ride stops mid-ride, stay seated, and wait for an operator to give further instructions.
And the best piece of advice?
Give your child a prophy dose before going to the park. Bring his supplies with you… just in case. Have him wear his medical ID jewelry. And know where the nearest HTC is if you are far from home.
A roller coaster ride is one up and down in life you can have safe fun with!
How would you describe the US budget bill, that is currently working its way through Congress? Do you know about it?
Believe it or not, its official name is the One Big Beautiful Bill Act of 2025 (OBBBA), popularized by Republican House Speaker Mike Johnson. It is a House Republican proposal for reconciliation, which would allow for expedited consideration of certain budgetary measures.
With all the distracting trouble in the world—protests, Middle East attacks, assassinations over the weekend—it’s actually easy to forget that this budget has not yet been approved. It’s still pending in the Senate. But there are urgent calls by our bleeding disorder community leaders for all of us to consider what’s at stake… and to consider taking action to protect health care budgets that affect us all.
There are tax cuts of various kinds; there are spending cuts of various kinds, and these are the areas that should concern us all. The bill includes various ways to cut spending in Medicaid, food stamps, and student loan repayment programs.
Interestingly, the government’s own Congressional Budget Office (CBO) estimates the bill will add $2.4 trillion to primary deficits over the next ten years. There are concerns by the CBO that the bill could add $1,600 per year to low-income Americans taxes.
The Senate vote will happen before July 4. We have two weeks left to make a difference. You could make a difference, but only if you get educated about the bill.
The Coalition for Hemophilia B has created an excellent Action Sheet to help give you ideas and action items to help protect Medicaid and vital healthcare programs for those living with hemophilia. Consistent, respectful calls to your senators and representative can make a significant difference. Download the Action Sheet here.
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.
Jonathan James, President/CEO
HOPE Charities
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