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On April 9, 2025, Arkansas passed House Bill 1150, a landmark law prohibiting pharmacy benefit managers (PBMs) from owning or affiliating with pharmacies while managing pharmacy benefits. Sponsored by Representative Jeremiah Moore and Senator Kim Hammer, the legislation aims to curb anti-competitive PBM practices, reduce drug costs, and protect independent pharmacies. Pharmacists United for Truth and Transparency (PUTT) praised the bill as a model for nationwide reform, highlighting its role in addressing corporate consolidation and ensuring patient access to care. PUTT urges other states to adopt similar measures to promote transparency and competition in the prescription drug market.
Read more: https://www.truthrx.org/post/press-release-arkansas-passes-groundbreaking-pbm-reform-law-putt-urges-other-states-to-follow-suit  The healthcare landscape in America continues to be shaped by forces that often remain invisible to patients. One of the most significant yet least understood components is the role of Pharmacy Benefit Managers (PBMs) and their impact on medication access and affordability. In our latest Hope Podcast episode, Dr. Maddie Feldman, a rheumatologist and vice president of advocacy at CSRO, provides an illuminating deep dive into how PBMs have evolved from administrative entities into powerful decision-makers that often prioritize profits over patient care.
Dr. Feldman explains how PBMs originally emerged in the 1990s as entities designed to manage the growing expense of prescription medications. Insurance companies, seeking to separate pharmacy benefits from medical benefits, created a system where PBMs would handle prescriptions and create formularies—lists of drugs covered by insurance plans. What began as a seemingly reasonable administrative solution has transformed into a complex web of profit-driven decisions that directly impact patient access to medications, particularly high-cost specialty drugs that treat chronic conditions like bleeding disorders and autoimmune diseases. The conversation reveals how PBMs have contributed to rising drug prices through a counterintuitive mechanism: they often prefer higher-priced medications on formularies because these drugs provide larger rebates and kickbacks. This practice, protected by a "safe harbor" exemption from anti-kickback statutes, has incentivized drug manufacturers to raise list prices while offering substantial rebates to PBMs. Dr. Feldman aptly describes this as similar to buying a $500 dress at 50% off rather than a $100 dress at 50% off and claiming you "saved more money," when in reality you spent more. This pharmaceutical pricing dynamic has driven costs upward while PBMs promote their "savings" to clients. Perhaps most concerning is the vertical integration that has occurred in recent years, with the "big three" PBMs now controlling approximately 80-85% of all prescriptions in the United States. This concentration of power has created what Dr. Feldman describes as having "the judge, the jury, and the executioner all in the same company," where entities control the insurance, the pharmacy benefit, the specialty pharmacies that dispense medications, and increasingly, even the manufacturing of certain drugs. The human cost of these business practices emerges in powerful stories shared during the episode. We hear about patients being forced to use more expensive brand-name medications when cheaper generics are available, medications being "slow-walked" through approval processes to steer patients toward more profitable alternatives, and the breakdown of community-based specialty pharmacy care in favor of mail-order systems that often result in medication waste, improper handling, or delayed access. Most disturbingly, these decisions can have life-threatening consequences, as illustrated by the story of a young man who died from an asthma attack after being unable to afford his inhaler when it was suddenly moved to a higher formulary tier. While PBM reform legislation faces significant challenges, bipartisan efforts like the "People Before Monopolies" bill introduced in both chambers of Congress offer potential solutions, including requiring PBMs to divest from pharmacy ownership to reduce conflicts of interest. Dr. Feldman emphasizes that effective reform requires not just new policies but enforcement mechanisms with real consequences—such as exclusion from Medicare participation—rather than fines that amount to mere "mosquito bites" for these highly profitable entities. The conversation concludes with a call to action for patients, providers, and advocates to share their stories and speak up about PBM practices that have disrupted care. As Dr. Feldman powerfully states, the current system has "middlemen making medical decisions with no liability for the choices," fundamentally disrupting the doctor-patient relationship. Only through collective advocacy and clear communication about these complex issues can meaningful change occur to restore patient access and affordability in our healthcare system.  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.  The Consumer Financial Protection Bureau (CFPB) has issued a critical consumer advisory aimed at safeguarding families from illegal medical debt collection practices. These practices, the CFPB notes, are often in violation of federal law, and the bureau is stepping in to help consumers better understand their rights when dealing with medical debt collectors.
In its advisory, the CFPB highlighted several illegal tactics employed by debt collectors, including:
CFPB Director Rohit Chopra underscored the frequency of medical billing errors, which can include inflated or duplicate charges, fees for services never rendered, or charges that were already paid. Chopra's statement emphasizes the urgent need for better protection, as medical debt remains one of the most common forms of debt on credit reports. Earlier this year, the Biden administration took a bold step in addressing this issue by banning medical debt from being included on credit reports. This move, widely praised by medical debt advocacy groups like Undue Medical Debt, recognizes the fundamental differences between medical debt and other forms of debt. Unlike car loans or student loans, medical debt is often incurred unexpectedly, and it does not reflect a person’s financial behavior or creditworthiness. The CFPB’s guidance offers a roadmap for consumers who are targeted by medical debt collectors:
The advisory also highlights a growing trend: hospitals and healthcare providers are increasingly outsourcing billing and collection activities to third-party firms known as "revenue cycle management" companies. These firms may be subject to the Fair Debt Collection Practices Act (FDCPA), which imposes strict legal obligations on how debt can be collected. As medical debt continues to weigh heavily on American families, this advisory is a reminder that consumers have rights and should not be preyed upon by illegal collection tactics. Through its ongoing efforts, the CFPB aims to level the playing field and bring accountability to debt collection in the healthcare sector.  Listen to Audio Only Version on Spotify
What role do Dad's with Hemophilia play in helping their daughters discover In this eye-opening episode of the Hope Podcast, host Jonathan James delves into the often-overlooked topic of women living with hemophilia. Joined by Naomi and Ivan Giron, the conversation explores the multifaceted challenges and triumphs faced by women with this genetic bleeding disorder. This episode is a profound exploration of advocacy, treatment challenges, and the vital role of family support in managing hemophilia. Hemophilia is typically perceived as a male-dominated condition due to historical research and focus. However, women also suffer from this genetic disorder, often facing unique challenges such as menstrual management and the battle for proper diagnosis and treatment. Naomi Giron shares her personal journey from ignorance about her condition to becoming a proactive advocate for her health. She details the difficulties she faced in obtaining necessary medication due to gender biases in medical treatment, underscoring the critical need for more research and resources dedicated to women with hemophilia. One of the most striking aspects of the episode is the discussion on menstrual health. Naomi recounts her struggles with heavy menstrual bleeding and the limitations of traditional treatments. The conversation emphasizes the importance of open communication within families, especially between fathers and daughters, to manage hemophilia effectively. Ivan shares his experiences growing up with hemophilia, highlighting the mental resilience required to cope with the condition and the importance of family bonds in providing support. The episode also sheds light on the historical focus on men in hemophilia research, which has led to a significant lack of resources for women. Naomi discusses the substantial improvements she experienced after receiving proper treatment, including the use of factor infusions that significantly reduced her menstrual bleeding. This segment underscores the importance of education, advocacy, and community support in improving hemophilia treatment for women. Documentation and meticulous tracking of treatment progress are crucial elements discussed in the episode. Naomi emphasizes the importance of maintaining detailed records to assist in advocating for necessary medical interventions. This practical advice is invaluable for those navigating the complexities of hemophilia, providing a roadmap for effective health management and insurance purposes. The conversation also explores the challenges of self-infusions and blood work, particularly for individuals who dislike needles. Naomi and Ivan discuss the emotional and practical aspects of managing a bleeding disorder, highlighting the significance of building confidence and skill in self-care techniques. This segment is a testament to the mental resilience required to handle the medical procedures associated with hemophilia. Preventative treatment for joint health is another critical topic covered in the episode. Ivan shares his experiences with joint issues due to bleeds and the long-term damage that can occur if left untreated. The discussion highlights the importance of prophylactic treatment in preventing such damage and the struggles of navigating insurance approvals. This segment underscores the necessity of advocating for adequate preventative care to maintain joint health and overall well-being. The episode also addresses the broader implications of advocating for better medical treatment and systemic changes in the medical community. Naomi's journey to empowerment and proactive health management serves as an inspiring example for others. The conversation emphasizes the importance of continually seeking improvements in medical treatment, particularly for women who are often under-diagnosed or under-treated. Community support and education are vital themes throughout the episode. Naomi shares her experiences attending women's events and the value of open conversations about personal experiences. These events foster understanding and advocacy, providing a supportive environment for women to share their stories and learn from one another. Ivan and Naomi's stories highlight the significance of communal support in managing and understanding hemophilia. In conclusion, this episode of the Hope Podcast is a powerful exploration of the challenges and triumphs faced by women with hemophilia. It underscores the importance of advocacy, education, and community support in improving hemophilia treatment. Naomi and Ivan Giron's journey serves as an inspiring call to action for systemic change in the medical community and better support for women with genetic bleeding disorders. Tune in to gain valuable insights into the resilience, family support, and collective effort required to navigate the complexities of hemophilia.  Hope Charities is excited to announce that Hope Conference 2024 will be held in Orlando, Florida on November 7-9th! Please save the date and plan to join us for a memorable time of learning, community building, and family fun. Registration and applications for travel scholarships will be opening soon, so be on the lookout for future emails with more details. We can’t wait to celebrate our 15th year of Hope Charities in Florida with our bleeding disorders family!  BEQVEZ™ (fidanacogene elaparvovec-dkzt) Approval Granted by FDAOn April 25, 2024, Pfizer announced that the United States (U.S.) Food and Drug Administration (FDA) approved BEQVEZ™ (fidanacogene elaparvovec-dkzt) injection, for intravenous infusion. BEQVEZ is an adeno-associated virus vector-based gene therapy indicated for the treatment of adults with moderate to severe hemophilia B (congenital factor IX deficiency) who:
BEQVEZ™ (fidanacogene elaparvovec-dkzt) approved product labeling can be found here: BEQVEZ (fidanacogene elaparvovec-dkzt) U.S. Physician Prescribing Information  The 2024 Patient Assistance & Access Programs (PAP) Conference was held this week in Philadelphia. This annual conference brings together leaders from various industries to tackle challenges related to medication affordability and access. This conference presents an opportunity for thoughtful discussion, collaboration, and the creation of innovative solutions to patients’ medically-related financial struggles.
Hope Charities President and CEO, Jonathan James, was invited to present at this year's event. His session “How Vulnerable Are the Most Vulnerable” shared national data reflecting the financial struggles of all Americans as it relates to insurance, housing, and general cost of living, while taking an in depth look into the added healthcare costs faced by patients with rare and chronic conditions. Jonathan says, “There can be a callousness that makes people wonder if this type of help is really needed. However, when you look at the data, it’s quite obvious the need is real.” Founded in 2009 with a focus on providing financial support for patients with chronic diseases, Hope Charities has since given away $4,069,029 in individual grants to patients and their families to assist them in attaining desirable health outcomes. Supplemental Financial Assistance Now Available
Baton Rouge, LA — December 12, 2023 — Hope Charities, a non-profit that provides education and financial support for individuals with chronic illness, has opened a new fund to provide financial assistance to individuals living with hemophilia. Through the fund, Hope Charities will provide recurring monthly assistance to eligible patients with annual household incomes up to 250 percent of the federal poverty level to cover household and necessary living expenses. Hemophilia is an inherited blood disorder in which the blood does not clot properly. There are two types of hemophilia: Factor VIII deficiency (Hemophilia A) and Factor IX (Hemophilia B). The severity of either type of hemophilia is defined by the amount of factor present in the blood. Treatment for hemophilia consists of intravenous or subcutaneous injections of factor. These treatments do not cure hemophilia, but greatly reduce and in some cases, eliminate bleeding episodes. Recently, gene therapy products for hemophilia have become available to select groups of hemophilia patients. While treatment is readily available, for many patients the cost is prohibitive. In 2023, Accredo’s analyses revealed the average annual cost for clotting factor for a patient with severe hemophilia to be $393,000. In comparison, a newly released gene therapy product for Hemophilia B, costs $3.5 million for a single dose! “We are excited to launch this new program to provide financial assistance to care for the indigent population. People living with hemophilia often struggle to pay for life’s basic necessities,” says Hope Charities’ President and CEO, Jonathan James. “Thanks to the generosity of our donors, we are able to provide assistance to patients through individual grants to ensure fiscal stability and support in paying for vital needs. When people lose their homes or cannot afford utilities such as water or electricity, caring for physical health needs is not a priority. The lack of basic necessities can lead to catastrophic results for someone with a chronic condition and we hope to make a positive impact in the lives of the people we are here to serve.” To determine eligibility and apply for assistance, visit Hope Charities’ website, hopeforhemophilia.org/programs. All applications are subject to approval based on applicant eligibility and availability of funds, and applicants must be able to provide photo identification, proof of expenses, diagnosis, and income. To learn how you can support this or other Hope Charities programs, visit hopeforhemophilia.org/donate. About the Hope Charities Hope Charities is a nonprofit organization that serves patients across the United States. Founded in 2009, Hope Charities has provided over $2 million in financial support to patients, families, and caregivers who are impacted by a bleeding disorder. In addition to providing financial assistance, Hope Charities offers educational opportunities for patients and caregivers to learn to manage their chronic condition, emotional support to help them through moments of crisis, and advocates for policy change that will lead to better health outcomes for the patient community. For more information, visit hopeforhemophilia.org.  Ashley is somewhat new to the hemophilia community but has already worn many hats including mother to a child with hemophilia, carrier of hemophilia, volunteer, and most recently, executive director of a state chapter. Even though her uncle had hemophilia, she says she had limited experience with the disorder until her nephew was born. “My family wasn’t prepared for someone to be diagnosed with hemophilia again. I guess we thought since my mom didn’t have any kids with hemophilia, it just ended there. Then I realized I could have this too; it’s something I should think about when I have kids.”
Ashley was tested when she was pregnant for her first son, Leo, and learned she is a carrier. While Leo does not have hemophilia, her youngest son, Max, does. The diagnosis process was frustrating for her each time they tested her sons. “It’s such a rare disease that people aren’t familiar with testing for it. Both times the hospital botched the test and the baby had to go back in for testing.” It was difficult to sit by and watch her babies endure multiple painful needle sticks and maintain patience when she desperately sought out answers. “With Max, finding out was hard, even though I knew it was a possibility. Nothing really prepares you for hearing those words.” Ashley’s biggest fear was that they would never get to have a normal life. “It felt so overwhelming thinking that this would take over. I was scared that it would take over our life.” The first few days after receiving his diagnosis were the hardest and were clouded by sadness. She could not stop herself from comparing her boys and how a normal part of childhood, like bumping your head, would have such drastically different implications for Max. However, Ashley knew she could not be sad forever. “I told myself it could be worse. This might present some challenges, but we’ll get through this as a family.” Max suffered his first bleed when he was 8 months old. Ashley noticed that he would not crawl and would only reach for things. She knew something was wrong when he began to cry when she held his ankle while changing his diaper. She immediately called her HTC, The Louisiana Center for Bleeding and Clotting Disorders at Tulane; an ultrasound revealed an ankle bleed. Max began prophy treatment, which meant weekly travel to the HTC for infusions. When Max developed inhibitors, the need for a port became imminent. “Port surgery was stressful. Putting him to sleep was stressful and knowing he’d have a cut and permanent scar. When you have a child with hemophilia, surgery is just scary.” Max’s port surgery took place one week before his first birthday, and Ashley expected to be in the hospital for 2 to 3 days. However, due to uncontrolled bleeding at his port site, he was in the hospital for 10 days. “That was scary. In the beginning, when it wouldn’t stop bleeding, I could tell the doctors and nurses were worried. It scared me. I was worrying about my other son who was worried about his brother. All of the unknowns were scary.” Their hospital stay ran so long that Max celebrated his first birthday in the hospital. The hospital staff was very supportive and brought presents and a cupcake for Max. However, Ashley’s worries about having a normal life with hemophilia resurfaced. “I just cried. I was trying to get myself together, but it was so overwhelming to be there for his birthday. I wondered if every birthday was going to be spent in the hospital and if every celebration would be tainted.” |
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