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CSL Behring Expert Dialogue Series
CSL Behring is a biotherapy company committed to saving lives and improving the lives of people with rare and serious diseases worldwide. At CSL Behring, we occasionally invite thought leaders to participate in discussions or dialogues about important and emerging issues affecting people with the rare and serious conditions treated with CSL Behring biotherapies. These dialogues offer an exchange of information about the medical, social and political facets of biotherapies.
At CSL Behring, we are asking many of the same questions you are asking -- questions such as: Why does it often take several years or more to obtain an accurate diagnosis of a rare disease? At what point should an individual’s symptoms automatically prompt a physician to order diagnostic tests? Discussions about these questions and other pertinent concerns are featured throughout these dialogues. We thank you for your interest and look forward to receiving your feedback about our series.
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Albumin in Clinical Fluid Management Dialogue |
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Chinese (China)
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English (US)
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Spanish (Mexico)
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Albumin in Clinical Fluid Management
Physicians from Europe and the U.S. engage in a frank and provocative discussion about the pros and cons of using albumin to treat liver disease and sepsis, and in cardiac surgery. The thought leaders, mainly comprised of hepatologists and intensivists, also discuss the perception of albumin, its safety and efficacy, the economics of using albumin versus crystalloids, and a host of related issues.
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Access to Care
Patient advocacy, medical and insurance industry thought leaders engaged in a provocative discussion about practices that impede access to health care for Americans with rare and serious medical disorders, and possible solutions. This discussion is particularly relevant now as healthcare reform is being implemented to assure people with rare diseases do not end up with reduced care as an unintended consequence.
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Participants include:
- Dr. Stephen Groft, Pharm.D. Director, Office of Rare Diseases, National Institutes for Health (NIH)
- Dr. Lennart Hammarström, M.D., Ph.D. Professor of Clinical Immunology, Karolinska Institute
- Yann Le Cam Chief Executive Officer, EURORDIS (European Organization for Rare Diseases)
- Peter Saltonstall President and Chief Executive Officer, NORD (National Organization for Rare Disorders, US)
- Peter Turner President, CSL Behring
- Dennis Jackman Senior Vice President of Public Affairs, CSL Behring
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Immunoglobulin
Key opinion leaders in the primary immune deficiency and neurology communities gathered in New York City and London to explore key issues facing patients and to propose solutions for continuing to improve the future for people with rare immune deficiency conditions.
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Hemophilia
Leaders of European hemophilia societies recently joined representatives of CSL Behring in Marburg, Germany for a discussion of the state of hemophilia care. They examined a number of timely issues including treatment objectives, standards of care, national rare disease plans and the future of R&D and gene therapy.
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HAE in the US
CSL Behring's Key Issues Dialogue on Hereditary Angioedema brought together physician-researchers and patient advocates to discuss and examine a wide range of issues regarding the disease.
Key issues discussed include:
- Frequent misdiagnosis or incorrect treatment of HAE
- Changing experience for people with HAE and their healthcare providers in an environment with new therapies and approaches for treatment
- How to raise awareness and secure earlier diagnosis and early, appropriate treatment
- Legislative reforms that would help patients with HAE include the elimination of insurance caps on individual or lifetime expenditures
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Quality and Safety
This dialogue explains the many quality and safety processes and procedures employed by CSL Behring to ensure the production of safe and effective biotherapies. We take the health of the people who use our lifesaving biotherapies very seriously. We meet or exceed the most stringent international standards for plasma product safety in accordance with regulatory agencies worldwide. Our dedication to collecting safe plasma and producing the highest quality products is well known in the plasma-protein therapies industry and throughout the patient communities we serve. We believe our products have never been safer than they are today due to substantial investments in product safety, manufacturing facility enhancements, and research and development activities. In fact, during the past 25 years, the risk of virus transmission through plasma-derived products has been nearly eliminated. To demonstrate all the measures we employ to ensure safety, we invited members of the bleeding disorders community to tour one of our three manufacturing facilities and one of our 73 plasma collection centers. After the tours, CSL Behring virologists, hematologists and plasma collection and manufacturing experts were on site to explain the company’s quality and safety paradigm and answer questions from patient representatives.
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HAE in Europe
This European-based dialogue about
Hereditary Angioedema (HAE) discusses the challenges and advances in diagnosis and treatment. HAE is caused by a protein deficiency (C1-esterase inhibitor) and often involves painful and life-threatening symptoms. Topics include lack of awareness and education, which causes frequent misinterpretation of HAE symptoms. Among the worldwide HAE topics discussed are: early diagnosis, reimbursement issues, the possibility of an EU-wide patient registry, centers of expertise and referral networks, and treatment guidelines.
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Standards of Care Legislation
This dialogue offers insight into the legislative process necessary to move Standard of Care bills through to becoming laws. The legislation relates to bleeding disorders and immune deficiencies. It includes standards for home care pharmacies and health plan requirements related to coverage of home health care, access to FDA-approved plasma-derived therapies and to treatment centers and laboratory services. Also included is a discussion about mandatory screening for von Willebrand disease for people with symptoms such as excessive menstrual or other bleeding, prior to certain surgical procedures. The issue of access to all brands of immunoglobulin at all care sites is also discussed.
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ITP
This dialogue is about Idiopathic Thrombocytopenic Purpura (ITP), a common autoimmune bleeding disorder caused by a reduction in platelets. Platelets are the circulating blood cells that prevent bleeding. ITP is manifested by a low platelet count and red or purple skin discolorations. ITP is also used to abbreviate Immune Thrombocytopenic Purpura since most cases of ITP result from an antibody response against platelets. Among the topics discussed are: when is a platelet count considered normal; the need to exclude other diagnoses, including leukemia, during medical evaluation for ITP; the possibility of an environmental trigger for ITP; treatment options and quality of life expectations for people with ITP. General topics include: the difficulty of developing an accurate count of people with ITP; private and government insurance reimbursement; public awareness and education and the overall need for better understanding of autoimmune disorders.
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HAE and PID
This dialogue among three members of the primary immunodeficiency disorders (PID) community in the United Kingdom is intended to bring attention to these rare conditions. Topics include the need to flag recurrent infections as possible indicators of one of 80 PID conditions, the economic value of diagnosis and treatment, and how to get an accurate count of persons with PID. Global PID issues discussed include patient referrals to specialists, reimbursement of healthcare costs, the shift toward subcutaneous treatment options, safety concerns about plasma-derived therapies, and helping individuals take better control of their quality of life.
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Alpha-1
This dialogue is about medical conditions related to Alpha1-antitrypsin (Alpha-1), a protein that protects the lungs. Normally, this protein prevents overactivity by an enzyme called neutrophil elastase which, if left unchecked, can attack healthy lung tissue. People who do not produce enough Alpha1-antitrypsin are often diagnosed with emphysema, chronic obstructive pulmonary disease (COPD), asthma and bronchitis. Some people with Alpha-1 antitrypsin develop cirrhosis of the liver or a skin condition called panniculitis. Topics in this dialogue include: educating people diagnosed with COPD to seek further information about Alpha-1 antitrypsin and assess possible genetic risk factors; the importance of early detection to avoid lung transplantation if possible in severe cases; the identification of a flag to automatically prompt diagnostic testing and the benefits of subcutaneous treatment. In addition, the panel discusses the impediments to developing aerosol therapies and quality of life issues for people with Alpha-1 antitrypsin. Broad topics about Alpha-1 antitrypsin in this dialogue include: the role of government in physician and public awareness; the safety and availability of blood products and research to further understand the role of Alpha-1 antitrypsin and to develop new treatments.
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