A Message From Our President/CEO

Navigating Healthcare Uncertainty: Lessons from the Market and a Call to Action
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.

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. 

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.

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. ​