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Medically Led Sessions Understanding Pulmonary Hypertension l PDE-5 Inhibition & Nitric Oxide | The Good, The Bad, The Ugly: Anticoagulation & Drug-Drug Interactions l Treadmills, Bicycles & PAH: Questions about Exercise l What to Do When Medical Therapy Is Not Working: Lung Transplantation, UNOS & Other Surgical Treatments l Entendiendo la hipertensión pulmonar: Lo básico (en Español) | Congenital Heart Disease & PH | New Frontiers: Combination Therapy, Transition to Oral Therapy | Why Did I Get PH? The New Profile of Pulmonary Hypertension | Epoprostenol/Treprostinil: New Concepts in Dosing Delivery; Prevention & Management of Cath-Related Infections | PAH & Low Oxygen Levels: Let's Talk About Sleep, COPD & ILD | Familial/Genetic PAH, Including Screening | The Latest in PH Therapies for Children - From Medicines to Lung Transplant | Ask a Pediatrician - Parents Only (Kids 12-18 years) | Emergency Situations | How is PH in Scleroderma & Connective Tissue Disease Different? | Medicare Prescription Drug Coverage & Finding Help with Insurance Co-Payments | Nutrition, Diet & Alternative Medicine | Prostanoids | Thromboembolic Disease & PAH: The Spectrum of Therapies | Basic Research in PH: The Door to New Therapies | Changing to Different PH Medications: Important Things to Know Before, During & After | As Goes the Liver, So Goes the Lung: Liver Disease and PH | Young Women: Issues of PAH including Pregnancy | Would You Like to be in a Clinical Trial? What You Need to Know as a Patient! | Vita General de Terapias Medicas en el Tratamiento de Hipertensión Pulmonar (en Español) | Ask a Pediatrician - Parents Only (Kids 0-11 years) | Endothelin Antagonists | Ups & Downs in Living with PAH | An Overview of Medical Therapies for PAH | Blood Disorders & PAH: Sickle Cells, Spleens & Platelets | Cirugía y otras Opciones de Intervención y Nuevas Direcciones en el Tratamiento de la Hipertensión Pulmonar (en Español) | Ask the Pediatrician - Kids Only | What Does REVEAL Reveal? | On the Horizon of Tomorrow: An Update of Investigational Agents | Primary Care Issues: Can I Have Elective Surgery? When Should I See a PH Specialist? | Question the Experts! | The ABC's of BNP (and Other PH Test Results) | Intimacy Issues - Men Only | Affairs of the Right Heart: Intimacy Issues - Women Only Medically Led Sessions #1 Understanding Pulmonary Hypertension: The Basics Presenters: This session will explain the normal working of the heart and lungs, and discuss in clear layman’s terms what happens to these systems in pulmonary hypertension patients. An overview of the general treatment strategies will also be addressed. What you learn here will provide the foundation for focusing your attention on other sessions … and your own situation. PDE-5 Inhibition & Nitric Oxide Presenters: Nitric Oxide, a key messenger in cell control, is known to be reduced in PAH. Sildenafil (Viagra/Revatio) inhibits the breakdown of the nitric oxide signal, thereby enhancing whatever NO signaling is present. This session will focus on the long-term use of sildenafil, alone and in combination with other drugs, to alter the course of PAH. The Good, The Bad, The Ugly: Anticoagulation & Drug-Drug Interactions Presenters: Treadmills, Bicycles & PAH: Questions about Exercise Presenters: We will discuss a variety of issues regarding exercise and PAH. These will include the types of exercise tests used to assess a patient’s status and response to treatment, and recommendations about safe, manageable exercise programs to maintain optimal health in patients with PAH. We will set aside ample time to take questions from the audience about their exercise habits and goals. What to Do When Medical Therapy Is Not Working: Lung Transplantation, UNOS & Other Surgical Treatments Presenters: This session will review the roles of lung transplantation and other surgical therapies which may be options when medical therapy is not effective in treating PH. The UNOS (United Network for Organ Sharing) lung allocation system and its implication for patients with PH will be reviewed. Heart-lung transplantation, atrial septostomy and pulmonary thromboendartectomy will also be covered. Ample time will be left for questions and discussion. Entendiendo la hipertensión pulmonar: Lo básico (en Español) Presentadores: Esta sesión explicará el trabajar normal del corazón y pulmones, y discutirá en los términos claros lo que sucede a estos sistemas en pacientes de hipertension pulmonar. Durante la sesión se trataran temas relacionados con la hipertensión pulmonar. Que es la hipertensión pulmonar? Cuales son los factores de riesgo para desarrollarla? Cuales son los síntomas y como se diagnostica? Una vista general de las estrategias generales del tratamiento también será dirigida. Lo que usted aprende aquí proporcionará la base para enfocar su atención en otras sesiones … y su propia situación. Congenital Heart Disease & PH Presenters: How does congenital heart disease lead to PH? What are the options for patients who have developed PH in conjunction with congenital heart disease? This session will focus on the various forms of congenital heart disease that might lead to PH and take a look at the options available to patients. We will review the known medical therapies for PH with congenital heart disease, and discuss when patients should consider PH medicines. Open interaction and discussion is encouraged. Medically Led Sessions #2 New Frontiers: Combination Therapy, Transition to Oral Therapy Presenters: Treatment options for pulmonary hypertension have dramatically expanded with the availability of multiple medications. If one treatment is good, are two better? When should medication be adjusted or switched, and what evidence is available to guide therapy? This session will focus on the rationale for combination therapy, review results of studies of combination therapy and review transition to oral therapy. Discussion is encouraged. Why Did I Get PH? The New Profile of Pulmonary Hypertension Presenters: We will discuss our current understanding of the various causes of PH, focusing on areas that have only recently begun to receive real attention. These include PH associated with heart and lung disease, with stimulant use, with HIV infection and with obesity. We will review what information exists for these special forms of PH, and what information needs to be gathered, and discuss recommendations for diagnosis and treatment. Epoprostenol/Treprostinil: New Concepts in Dosing Delivery; Prevention & Management of Cath-Related Infections Presenters: Prostacyclins are very effective treatments for many patients with pulmonary arterial hypertension, but they are also very complex due to their delivery system, dosing and side effects. This session will discuss two of the prostacyclins: Epoprostenol (Flolan), delivered intravenously, and Treprostinil (Remodulin), which can be delivered either subcutaneously or intravenously. The discussion will highlight important concepts about dosing and some of the most common adverse effects, including line infections. PAH & Low Oxygen Levels: Let's Talk About Sleep, COPD & ILD Presenters: Pulmonary hypertension can occur in association with a variety of other medical conditions. This session will address PH occurring in the presence of other pulmonary disorders (such as sleep apnea, interstitial lung disease and chronic obstructive pulmonary disease). Panelists will describe mechanisms of disease and the possible therapeutic options. Familial/Genetic PAH, Including Screening Presenters: What is familial pulmonary arterial hypertension? This session will review what is known about the genetic basis of pulmonary arterial hypertension, and how this knowledge affects patients and their families. Current genetic tests will be discussed including what is done, where can one get such testing and who pays for the tests. The panel will also address the question: “Is the treatment any different if abnormal genetic test results are documented?” The Latest in PH Therapies for Children - From Medicines to Lung Transplant Presenters: Children with PH can often have a variety of underlying diseases different from adult PH patients. Although therapies are similar to those for adult patients, the prognosis may be better. Children with severe PH who undergo lung transplant have better outcomes than their adult counterparts. This session will address the special issues surrounding treatment of children with PH. Medically Led Sessions #3 Ask a Pediatrician - Parents Only (Kids 12-18 years) Presenters: Although evaluation and treatment for children with PH is “similar” to the approach taken with adult patients, children with PH are significantly different than adults. As with all PH patients, the approach to treatment for PH in children must be individualized. This session will focus on unique challenges and strategies for helping teens (ages 12-18 years) with pulmonary hypertension. Emergency Situations Presenters: This session will address situations when pulmonary hypertension becomes an emergency, either because of progression of the underlying disease, because of some superimposed complication, such as a blood clot or pneumonia, or because of a complication of a medication or the delivery system. The focus will be on what caused the emergency and what should be done about it - who to call, what immediate measure to take and where to go. How is PH in Scleroderma & Connective Tissue Disease Different? Presenters: Medicare Prescription Drug Coverage & Finding Help with Insurance Co-Payments Presenters: All medical therapies for PAH are expensive. This session will provide an overview of Medicare, Medicaid and commercial insurance coverage for PAH medications. The session will provide information on the prior authorization process and funding programs to assist patients with medication co-payments. Nutrition, Diet & Alternative Medicine Presenters: We know that vasodilator treatment improves exercise capacity and symptoms in patients with pulmonary hypertension. Besides medical treatments and modifications to lifestyle, there are several nutritional and dietary supplements on the market that claim to reduce leg swelling, enhance breathing and increase exercise capacity in people with pulmonary hypertension and heart failure. This session will help raise greater awareness about various nutritional, herbal and dietary supplements in the context of pulmonary hypertension. Open interaction and discussion is encouraged. Presenters: This session will address a number of questions about the use of prostanoids (Flolan, Remodulin, Iloprost) to treat PAH. Specifically, when is the right time to start using these drugs? Can these drugs ever be stopped? Can they be used in combination with other drugs? This session will include discussion of how these drugs work, how they are used, side effects and long-term impacts. Thromboembolic Disease & PAH: The Spectrum of Therapies Presenters: Chronic Thromboembolic Pulmonary Hypertension (CTEPH) is a progressive disease that can result in severe shortness of breath and disability. It also appears to be more common than previously realized. Unlike most other causes of pulmonary hypertension, CTEPH is often cured with surgery (pulmonary endarterectomy), although very few centers perform this procedure. We will discuss the diagnosis and medicinal and surgical treatment of chronic thromboembolic pulmonary hypertension with a particular focus on treatment and outcomes. Medically Led Sessions #4 Basic Research in PH: The Door to New Therapies Presenters: This session will discuss new research in PAH and how it might lead tonew diagnostic tools and new therapies. We will discuss how current and planned research differ from previous directions. Changing to Different PH Medications: Important Things to Know Before, During & After Presenters: A wealth of available, effective and approved PH medications currently is available to PH patients, and many new experimental medications are on the way. For patients already on a medication, there may be a reason to switch to another medication, such as failure to improve, side-effects to a medication or the complex nature of some medications. In this session, we will explore and discuss questions around the issue of switching between PH medications. As Goes the Liver, So Goes the Lung: Liver Disease and PH Presenters: How are patients with liver disease who also have pulmonary hypertension different from other patients with PH? This session will focus on aspects of PH related to patients with liver disease, including making an accurate diagnosis of portopulmonary hypertension and discussing the pros and cons of various medical treatment options. The current status of portopulmonary hypertension and liver transplantation consideration will be addressed. Young Women: Issues of PAH including Pregnancy Presenters: This session will focus on how PAH may affect young women's lives. We will discuss any and all topics related to this, but stressing the topic of pregnancy and the changes in the heart and lungs in patients with PAH during pregnancy. We will discuss the importance of contraception and what is new in terms of contraception, as well as medication therapy and how all of these topics fit in a young person's life. This will be a panel discussion and we will discuss all questions and topics that come up. Would You Like to be in a Clinical Trial? What You Need to Know as a Patient! Presenters: Clinical trials in pulmonary arterial hypertension have led to the FDA approval of six medicines over the past 13 years! This is great for the community as a whole, but what is it like for an individual patient to participate in a research trial? Experienced researchers will address this question. Vita General de Terapias Medicas en el Tratamiento de Hipertensión Pulmonar (en Español) Presentadores: Esta sesión es primordialmente para las personas de habla hispana que desean adquirir conocimiento sobre las terapias que se usan en el presente en el tratamiento de la Hipertensión Pulmonar; principalmente serán discutida las aprobadas por el FDA y según normas médicas. Ask a Pediatrician - Parents Only (Kids 0-11 years) Presenters: Medically Led Sessions #5 Endothelin Antagonists (Bosentan [Tracleer], Sitaxsentan [Thelin], Ambrisentan [Letaris]) Presenters: When should endothelin antagonists be used? What can we expect regarding response and side effects? Now that we have multiple therapies in this class available, how do we choose which to use? Are there important differences among them that patients need to understand? This session will include a broad overview of treatment with endothelin antagonists, including potential benefits and risks. Ups & Downs in Living with PAH Presenters: Both patients with PAH and their family members often describe the experience of living with PAH as being akin to a roller coaster: Lots of ups and downs. How do we ride this coaster without getting derailed? This session will focus on strategies for maintaining physical and emotional well-being in the context of pulmonary hypertension. Open interaction and discussion is encouraged. An Overview of Medical Therapies for PAH Presenters: We now have several effective medical therapies available for PAH. What are these therapies and how do physicians determine which to use? This sessions will provide an overview of the who, what, when and how of current medications. Blood Disorders & PAH: Sickle Cells, Spleens & Platelets Presenters: What are the particular characteristics of pulmonary hypertension in this group of disorders? This session will focus on presenting the recent diagnostic and therapeutic advances in sickle cell and thalassemia-associated pulmonary hypertension. Cirugía y otras Opciones de Intervención y Nuevas Direcciones en el Tratamiento de la Hipertensión Pulmonar (en Español) Presentadores: Las siguientes sesiones tienen como objective entender el manejo actual de la Hipertensión Pulmonar. Se discutirán las opciones de intervención como son el trasplante pulmonar y la septostomía atrial. De igual forma, se discutirá la terapia de combinación y las nuevas ociones en el futuro cercano. Ask the Pediatrician - Kids Only Presenters: Medically Led Sessions #6 What Does REVEAL Reveal? Presenters: The REVEAL Registry has assembled the largest cohort of U.S. patients with pulmonary arterial hypertension. As such, it informs us about the characteristics of these patients at the time they present, how they are currently managed and, as follow-up proceeds, what their outcomes are. This presentation will discuss the objectives and published results of the Registry to date. On the Horizon of Tomorrow: An Update of Investigational Agents Enormous progress has been made in the treatment of PH, and significantly important research into potential new therapies is ongoing. Some of these are related to drugs already in use, while others are completely novel. The status of therapies currently being investigated and potential therapies still in the conceptual phase will be discussed in the context of PH treatment. Primary Care Issues: Can I Have Elective Surgery? When Should I See a PH Specialist? Presenters: This session will focus on risk assessments and special clinical concerns that pertain to PAH patients who need to undergo elective surgery or procedures. It will also address possible tests and evaluations that may need to be performed. Open interaction and discussion are encouraged to answer questions relating to you or your family members. Question the Experts! Presenters: Bring your toughest dilemmas to stump the panel of experts in this audience participation session. The ABC's of BNP (and Other PH Test Results) Presenters: Can we assess severity and monitor response to treatment in pulmonary hypertension non-invasively with blood tests? This session will focus on the different biomarkers that can be used to help caregivers and patients monitor pulmonary hypertension and its response to vasodilator treatments. Intimacy Issues - Men Only Presenters: Intimacy issues concern us all. This is an area where 100% of us want answers to our personal questions, and less than 50% of us feel comfortable enough to ask! What is intimacy? How does chronic illness change our intimate relationships? How do I communicate with my loved ones about how I feel? These and many more questions will be addressed during this session. Affairs of the Right Heart: Intimacy Issues - Women Only Presenters: Sex is a basic human function and a fundamental part of life. Chronic medical conditions and medications can adversely affect sexual functioning and therefore diminish quality of life. This session will explore these important issues and discuss appropriate methods of birth control for PH patients. |