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In this episode of HemeTalks, we are joined by Ms. Elise Burton, who shares her experience living with paroxysmal nocturnal hemoglobinuria (PNH). Elise describes how her journey began several years earlier with a diagnosis of aplastic anemia, before her condition was later recognized as PNH after she developed evidence of unexplained hemolysis. She walks through her treatment journey, including eculizumab, ravulizumab, and enrollment in a danicopan clinical trial, as well as the side effects she experienced, the financial navigation required to stay on therapy, and the routine health maintenance that can be displaced when managing a rare disease becomes all-consuming. She also discusses the patient communities and advocacy organizations that supported her. Our patient advocate episodes highlight the importance of advocacy, community, and shared understanding between patients and their health care providers.
Key Takeaways:
1. Preemptive anticipatory counseling is critical for patients, particularly those with rare diseases, to ensure rapid access to life-saving care in emergencies. Elise shares how her hematologist made sure she understood her condition and gave her essential contact information, along with a letter detailing her condition to share with healthcare professionals if she ever needed emergency medical attention. Equipping patients with a plan before a crisis can meaningfully change the care they receive.
2. Rare disease care can become a part-time job, and general health maintenance can get lost. Patients with chronic hematologic diseases have medical needs beyond their hematologic condition. Hematologists can help by acknowledging the administrative burden, connecting patients with organizations such as AAMDS, NORD, The Assistance Fund, and the Patient Advocate Foundation, and reinforcing the importance of routine health screenings.
To access the PNH patient resources mentioned in this episode, please refer to the link provided here.
This episode was supported by Alexion.
Dr. Cece Calhoun (Yale School of Medicine) joins Heme Talks to discuss one of the most vulnerable moments in sickle cell care: the transition from pediatric to adult management. Using a real case of a 24-year-old with hemoglobin SC disease re-establishing care after a lapse, Dr. Calhoun walks through how to build trust with adolescent and young adult patients, why sickle cell disease is a systemic vascular and inflammatory condition rather than "just pain," and how to explain complex pathophysiology in patient-friendly language. The conversation covers essential screening guidelines for new adult patients, strategies for community providers managing sickle cell without specialist access, the evolving role of hydroxyurea (including the PIVOT trial in hemoglobin SC disease), and a practical, patient-centered approach to outpatient pain management.
Clinical Pearls:
For additional ASH resources related to Sickle Cell Disease, please consider visiting our ASH Clinical Practice Guidelines on Sickle Cell Disease web page.
This podcast episode is supported by Sanofi.
Immune thrombocytopenic purpura (ITP) is a diagnosis of exclusion but treating it is anything but straightforward. In this episode, Dr. Adam Cuker (University of Pennsylvania) joins us to break down how the management of ITP is evolving in real time, from diagnostic pitfalls to a preview of the newly released ASH ITP guidelines. We cover first-line corticosteroid strategies, when to add IVIG, how to choose between the many other available options in the second line and later settings. A world-expert in ITP management, Dr. Cuker shares many important clinical pearls and management strategies to help our listeners care for their patients with ITP.
Clinical Pearls:
1. ITP remains a diagnosis of exclusion with no confirmatory gold-standard test; diagnostic confidence is ultimately established by a robust platelet response to ITP-directed therapy (steroids, IVIG). Roughly two-thirds to three-quarters of adults with primary ITP will follow a chronic course, which should inform prognostic counseling at diagnosis.
2. Frontline management is evolving away from steroid monotherapy. While corticosteroids (prednisone or high-dose dexamethasone) remain the backbone, forthcoming ASH guideline updates support pairing steroids with a thrombopoietin receptor agonist (TPO-RA) or rituximab upfront rather than delaying combination therapy, given emerging evidence this approach may reduce steroid exposure and improve long-term disease course.
3. In the second-line setting, TPO-RAs (eltrombopag, avatrombopag, romiplostim) are generally favored over rituximab given higher overall response rates, though rituximab may be preferable in patients with high thrombotic risk, those averse to chronic medication, or young women with ITP of less than one year's duration, who show higher observed response rates. TPO-RA switching is well supported (i.e., failure of one agent does not preclude response to another).
4. Third-line options (fostamatinib, mycophenylate mofetil, rilzabrutinib), often combined with a TPO-RA to hit multiple mechanisms, are reserved for refractory disease; splenectomy is now reserved for highly refractory patients, those failing hospital-based salvage therapy, or patients with a strong preference to avoid chronic medication.
For additional ASH resources related to ITP, please consider visiting our ASH Clinical Practice Guidelines on Immune Thrombocytopenia web page.
This podcast episode is supported by AutoLus.
In this episode of HemeTalks, we dive into the evolving landscape of B-cell acute lymphoblastic leukemia (B-ALL) management with Dr. Adam DuVall. We begin with newly diagnosed disease, discussing which patients qualify for asparaginase containing pediatric inspired induction regimens. We then shift to the relapsed/refractory setting, exploring the roles of blinatumomab and inotuzumab ozogamicin as off-the-shelf therapies. Finally, we take a deep dive into CAR T cell therapy — comparing the three approved products, their costimulatory domains, toxicity profiles, and the growing evidence supporting CAR T as a destination therapy for a meaningful subset of patients. This episode offers practical, up-to-date guidance for clinicians caring for patients with B-ALL at every stage of disease.
Clinical Pearls:
1. Asparaginase containing regimens are preferred induction for AYA patients with newly diagnosed B-ALL and early referral is critical. Applying pediatric-inspired protocols to patients aged from 18 to 50’s has meaningfully improved outcomes in this population. Referral to centers with experience using these regimens is important to optimize patient outcomes.
2. In relapsed/refractory B-ALL, blinatumomab and inotuzumab ozogamicin are important off the shelf options — but with distinct roles. Blinatumomab, a CD3-CD19 bispecific antibody, can achieve durable remissions in a subset of patients even without allogeneic transplant, but that patient population is yet to be determined. Inotuzumab ozogamicin, an anti-CD22 antibody-drug conjugate, is an effective bridge to transplant or CAR T but is not considered curative on its own.
3. CAR T cell therapy is a legitimate destination therapy for a meaningful subset of B-ALL patients. Approximately 40-60% of patients may be cured with CAR T alone, making it an important option for those without a suitable donor or who cannot proceed to allogeneic transplant. The three approved products differ in costimulatory domain and toxicity profile — obe-cel's novel CD19 binding mechanism and dosing strategy reduces CRS and ICANS while preserving efficacy. Dual-targeting CD19/CD22 CAR products are on the horizon. Consolidative allogeneic transplant is pursued for the majority of these adult patients
For additional ASH resources related to ALL, please consider visiting our ASH Clinical Practice Guidelines on Acute Lymphoblastic Leukemia in Adolescents and Young Adults webpage.
This podcast episode is supported by AutoLus.
Episode Description:
In this episode of HemeTalks, we are joined by Neha Mehta-Shah, MD, MSCI, Associate Professor of Medicine at Washington University in St. Louis, to discuss the evolving management of peripheral T-cell lymphomas (PTCL), with a focus on differences by histologic subtype. Through a case-based discussion, Dr. Mehta-Shah explores the diagnostic challenges of PTCL, including the role of repeat biopsies, expert pathology review, and molecular testing. She reviews frontline treatment approaches, including CHOP-, CHOEP-, and brentuximab vedotin-based regimens, and discusses the role of autologous transplantation in first remission. The conversation then turns to relapsed disease, highlighting emerging therapeutic strategies, genomic insights, and consideration of allogeneic transplantation. Listeners will gain practical guidance for managing one of the most challenging groups of hematologic malignancies.
Clinical Perls
This podcast episode is supported by Secura Bio.
In this episode of HemeTalks, we are joined by Mr. Sean Powell as he shares his experiences as a former patient and now patient advocate for a rare blood disorder known as warm autoimmune hemolytic anemia (wAIHA). Sean shares his story of how he was diagnosed, the initial management, drug toxicities, and subsequent investigations that he underwent. Our patient advocate episodes highlight the importance of advocacy, community, and shared understanding between patients and their healthcare providers.
Key Takeaways
1. wAIHA can sometimes be associated with an underlying condition. Mr. Powell’s journey illustrates how wAIHA occasionally occurs alongside other diagnoses, highlighting the value of ongoing clinical vigilance and open communication between patients and their care team.
2. Steroid therapy carries significant side effects that patients are often unprepared for. Mr. Powell experienced severe prednisone toxicities, including rage, insomnia, and extreme hunger, and his hemolysis was only transiently controlled. His experience highlights the need for proactive patient counseling about steroid side effects and the importance of escalating to second-line therapies like rituximab when steroids fail.
3. The emotional and psychological burden of transitioning from active treatment to remission is often underestimated. Even after achieving remission, Mr. Powell faced intense anxiety, isolation, and loneliness — feelings that emerged precisely when formal support structures faded. Routine referrals to behavioral health specialists and survivorship programs should be considered a standard part of care, not an afterthought.
This podcast episode is supported by Johnson & Johnson.
In this episode of Heme Talks, we are joined by Allyson Pishko, MD, MSCE, Classical Hematologist and Assistant Professor of Medicine at the University of Pennsylvania, to discuss a rare blood disorder known as warm autoimmune hemolytic anemia (wAIHA). In this episode, Dr. Pishko shares her approach to diagnosis and management of this disorder, and how she approaches discussions about this diagnosis with her patients. Dr. Pishko also discusses promising future options for patients with wAIHA.
Clinical Perls:
This podcast episode is supported by Johnson & Johnson.
In this episode of Heme Talks, we are joined by Dr. Sai Jambunathan as she shares her experiences with the diagnosis and management of a rare blood disorder known as AL amyloidosis. As a patient herself, listeners will gain insights into the complex initial workup and what the treatment journey is like for patients with this condition. Our patient advocate episodes highlight the importance of advocacy, community, and shared understanding between patients and their healthcare providers.
Key Takeaways:
This podcast episode is supported by Alexion.
Join Dr. Maureen Achebe and Dr. Lauren Merz for an in‑depth exploration of the Absolute Neutrophil Counts (ANC) by Duffy Status project, a multicenter effort to define what “normal” ANC and white blood cell counts (WBC) look like in people with the erythrocyte Duffy null variant. Using data from 23 sites across the United States, the project established Duffy null-specific ANC and WBC reference intervals for both adults and children as well as highlighted how often healthy Duffy null individuals have ANC and WBC that fall below conventional laboratory cutoffs.
The episode unpacks the key findings: in healthy adults with Duffy null status, the ANC reference interval has a lower limit of normal near 1,000/µL, substantially below many institutional “normal” thresholds and far below the traditional neutropenia threshold of 1,500/uL. Similar downward shifts are seen across pediatric age groups with lower limits of normal ranging from 500/uL to 900/uL depending on age category. The faculty discuss how, under current institutional ranges, a sizeable proportion of otherwise healthy Duffy null patients are labeled as neutropenic or leukopenic which often prompts unnecessary workups, referrals, and reduced access to clinical trials or certain medications.
Drs. Merz and Achebe then turn to implementation. They outline how laboratories can develop, verify, and adopt Duffy null-specific reference intervals and practical ways to integrate this information into electronic medical records, decision-support tools, and clinical communication. They also highlight education strategies for clinicians, trainees, and patients to ensure that a low ANC in a Duffy‑null individual is interpreted appropriately and not reflexively pathologized.
Listeners will come away with a clear understanding of new adult and pediatric Duffy null-specific ANC and WBC reference intervals as well as practical steps to implement this data into the healthcare system and clinical practice.
Learning Objectives:
1. Describe how adult and pediatric Duffy null-specific ANC and WBC reference intervals were established and why traditional institutional ranges are inadequate for this population.
2. Understand how to interpret ANC and WBC values in patients with the Duffy null phenotype using the new reference intervals.
3. Identify practical steps for health systems to adopt Duffy null‑specific reference intervals and effectively communicate these changes to colleagues, patients, and learners.
Clinical Pearls:
1. In healthy adults with Duffy null status, the lower limit of normal ANC is 1,000/µL—meaning many healthy individuals are misclassified as neutropenic or abnormal by current standards.
2. The lower limit of normal ANC for Duffy null children ranges from 500-900/uL with approximately a third of children with ANC <1500/uL.
3. Implementation of Duffy null-specific infrastructure depends on coordinated efforts with a multidisciplinary team including transfusion medicine, clinical pathology, hematology, EMR IT, health equity specialists, medical educators, and patient advocates.
Multiple myeloma care is evolving faster than ever, with new therapies, treatment strategies, and possibilities emerging at an unprecedented pace. In this episode, hematologist Dr. Devarakonda and Kathy Giusti, founder of the Multiple Myeloma Research Foundation, come together for a candid, practical conversation about what this rapid progress means for patients, caregivers, and providers.
They explore why where you’re treated matters, how timing, sequencing, and dosing decisions shape outcomes, and what it takes to be an informed patient in today’s complex care environment. Through real-world stories and clinical insight, the conversation highlights the importance of collaboration between community and academic care teams, the growing role of the patient voice in decision-making, and the need to balance cutting-edge treatment with quality of life.
Whether newly diagnosed or navigating later lines of therapy, this episode offers practical guidance for making confident, informed decisions in multiple myeloma care.
Key Takeaways
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