 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.”  Cassandra comes from a long family history of hemophilia. Starting with her grandmother who passed it down to her father, then herself, and now her son, she describes her journey as phases of transition from being a daughter, a patient, an educator/helper, and now a mother, all beautifully protected by a bond between herself and her father that she now shares with her son.
When Cassandra was very young, her parents explained that she bruised easily because she was a carrier for hemophilia. However, the reality of it did not sink in until she was a junior in high school. She was an athlete excelling in her sport, pole vaulting, when she started to experience shin bleeds and was diagnosed with hemophilia. She continued to pole vault through her college years, but her disorder presented many challenges. Cassandra did not know any other athletes with a bleeding disorder and was frustrated with how quickly others recovered from injuries, while she suffered for weeks. She often felt isolated by not being able to participate in practices and spending lots of time in the training room doing physical therapy. She was never really afraid of her hemophilia because she was “a bit ignorant of it.” In all the years she watched her dad work through his disorder and infuse, she did not realize that she was also affected by it and that was why she was getting injured so frequently and not healing properly. She began to seek advice from her father on how to manage her hemophilia, even preferring to call him before calling her HTC, because she has so much trust in his knowledge and experience.  Destiny Caithamer was a shy kid with low self-esteem. In an attempt to pull her daughter out of her shell, her mom, Celine Caithamer put Destiny in her first beauty pageant, where she was scouted by a photographer. Today the 25 year-old is an international model and pageant queen. Her Facebook page is decorated with gorgeous pictures from countless professional photoshoots and magazines. She is living a life that most girls could only dream of and many would envy. However, this is only part of her story and what lies beneath the surface makes Destiny feel less glamorous and more like an “alien: unique, misunderstood, and a bit of an anomaly.”
When Destiny started having unexplained bruises at the age of 5 months and was vomiting blood, her mom knew it was time to seek answers. It was initially suggested that she might have had leukemia. After a couple of visits to the Comprehensive Center for Bleeding Disorders in Milwaukee, the family was invited in for an educational session. “They gave me all these words that I didn’t know, like von Willebrand Disease, factor VIII. I didn’t know about the clotting cascade. It was all new. It was all foreign,” says Celine. Destiny was diagnosed with von Willebrand Disease, as well as factor VIII deficiency. “I was relieved that it wasn’t leukemia. Second thing I thought of was that I was completely ignorant on the issue. I couldn’t even pronounce the words they were using.” Destiny’s normal childhood, despite her bleeding disorder, turned into shock and confusion when she started school as she struggled to fit in. Her peers did not understand her disorder and thought because she had bruises on her legs that she was dirty. Some kids refused to play with her. It was difficult for her to be cast aside by her peers and she said she “always felt alienated.” In third grade, Celine had someone go to school to talk to Destiny’s classmates about her disease. Afterward, the teacher had everyone put their hands on the table and told the class to look around for the student wearing the special bracelet while attempting to explain the disease. At a very young age, Destiny already knew the value of embracing her disorder even when others shunned her because of it. “Kids thought it was a scary, bacteria, or an illness they could catch. The way the teachers were describing it, if I were able to explain it to the class, I would have been able to explain it in my way, a way that kids my age would understand.”  Life was normal for Brandee. She lived near the coast and enjoyed water sports, softball, and dance. When she was 10 years old, her brother died of a platelet disorder, idiopathic thrombocytopenic purpura. Two years later, she experienced her first menstrual cycle which lasted more than 30 days. After a year of tests, she was diagnosed with von Willebrand’s disease. Brandee had always bruised easily, but no one thought much about it. “I got put on the back burner because my family was always dealing with my brother’s issues. I wasn’t constantly in my mom’s care long enough for her to see if something was wrong.”
After losing a son to a bleeding disorder, Brandee’s mom was most fearful of her diagnosis and worried about losing her daughter. “She kept me very close.” Brandee’s reaction was quite different. Being a teenager, initially, her diagnosis seemed insignificant. “You’re young and you don’t really care.” That attitude soon changed. Her bleeds were very difficult to control and she had to be infused so frequently that she would often go to school with an IV in her arm, which she tried to cover with clothes. Eventually, it became obvious that her disorder would be much easier to manage at home and Brandee started to homeschool. Suddenly, her “normal” childhood was anything but normal, and she was missing being around her friends. Even worse, everyone was placing limitations on the activities in which she could participate, and she did not understand why things like riding jet skis, playing paintball, softball, and dance, activities in which she had always participated, were now off-limits. For the next 10 years, Brandee would try to find the right treatment to control bleeds associated with her menstrual cycle, spending lots of time in the ICU for transfusions. At times, she could not walk three feet without passing out from the extreme blood loss. One surgeon who has done multiple port placements on Brandee says that she seemed “very annoyed and mad at the world”. Although she did not agree with that statement at the time, in hindsight she says her doctor’s perception was correct. “I was hoping that it would just go away; that I could just put it on the back burner and that it would go away. I just really wanted to be normal and just be a kid.” |
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