“How might I benefit from coming to the Angioedema Center? I have type I HAE and am on Cinryze. My doctor is helpful but has no other patients with HAE. Is there any support that would help me? I do not live close to San Diego.”
Apr 26, 2016
Dr. C: Greetings and Happy Passover. I hope that those of you celebrating will find creative ways to navigate the upcoming week of Matzo. I thank the reader for introducing this topic and their interest in the Angioedema Center.
At the Center we have emphasized an integrated approach to care to optimize the utilization of effective pharmacotherapy in the context of individualized management plans. We feel that empowering patients as true partners in care decisions is the key to success. An important avenue to achieve this is through providing education and insight about HAE for affected individuals and their families. Our staff has been tenacious along with our HAEA partners in advocating to surmount the barriers still faced to obtain financial coverage for the necessary and appropriate treatments that patients require. We are dedicated to working with patients and their “on the ground” physicians with ongoing support.
The overarching goal is to normalize the lives of patients with HAE. We are still falling short of this promise but working together with the patient community and the HAEA I believe that we draw ever closer. Our experience is that the detailed management plans, provision of written emergency and treatment algorithms and an open avenue to continued follow up on emerging research, treatments and management revisions have resonated with the patients that we have had the privilege to work with.
Our reader has type I HAE and is hopefully benefiting from the prophylactic use of Cinryze. We acknowledge the many unmet needs for HAE-nl-C1INH as well as patients with complex angioedema problems which are difficult to categorize. We hope that our collective expertise at the Center has been helpful to assist patients in achieving the best diagnostic and therapeutic approaches that can be offered. We are devoted to continue our work with all patients at the Angioedema Center to achieve the next horizon for care.
It has been the mission of the HAEA in cooperation with the Center to facilitate care at the Center for all patients in need. We raised support, (that many of you generously contributed to), for a patient beneficence fund administered by the HAEA. We would urge you to explore this avenue through our partners at the HAEA if there are financial barriers to your ability to come to the Center.
Marc, I am sure that you have some detailed comments on this topic that you would like to share with our reader.
The Angioedema Center is dedicated to improving the lives of people suffering from all angioedema conditions but we have considerable focus on HAE. Each person with angioedema has her/his own challenges and so our goal is to work with each individual to tackle the specific issues they face. Sometimes this is a diagnostic question as testing has been incomplete or conflicting and we can assist in ensuring the best possible diagnostic tests are done. A very common problem is optimization of treatment. We want to ensure your treatment is working for you as well as possible. There a many choices to be made in building a treatment plan and we have considerable expertise in tailoring treatment for each person to reduce the impact of HAE on everyday life. This is an area where specialist experience with rare medical conditions counts – our focus on HAE, consulting with a very large number of HAE patients over many years, using a wide variety of HAE medications – all of this allows us to provide valuable advice and recommendations on the risks and benefits of different approaches. A visit to the Angioedema Center allows us to collaborate with your local physicians and implement or adjust your management plan once we understand the details of your condition, situation, and personal preferences. This cooperative team approach typically works well as some details can continue to be addressed by your local physicians but with the resources of the Angioedema Center behind you to assist where needed. The US HAEA is instrumental in making these visits possible, often providing travel information and support. HAE education is another area where we can offer additional help. Individuals and families with HAE often have many important questions that may not be well-addressed in other settings so we work to fill those gaps and provide answers. Finally, we’re involved in the latest research efforts to understand and treat HAE, so for people interested in these projects, the Angioedema Center provides opportunities to learn about and potentially be involved in this important research aimed at further improving HAE treatment.
Thank you Marc. We have embraced the attitude that we must continue to strive to bring what we have to offer at the Center to the next level. It was the fulfillment of a longstanding dream for the HAEA and working with us as physician partners to establish the Center as a medical home for all patients with Angioedema. This being said, progress is never driven by complacency over past accomplishments. Bruce, would you like to share our vision for the future goals of the Center? We are having an upcoming meeting with the HAEA on this topic that may be of interest to our reader and the Angioedema community.
We have been actively looking at ways in which we can improve our ability to help patients at the Angioedema Center. As you mentioned, we’ll be sitting down with the HAEA leadership in a couple of weeks to discuss a number of ways in which we could improve the Center. Over the short-term, we intend to implement changes that we believe will be useful for patients. One of these changes will be to begin to see pediatric patients at the Center. Another will be to improve the content and format of our patient education materials. A third will be to provide patients with more comprehensive support before, during and after the visit. Over a longer timeframe, we will begin to implement precision medicine approaches to more rapidly assess patients with HAE and tailor treatment strategies to the individual patient. As already mentioned, we will also continue to conduct clinical, translational, and basic research focused on improving HAE care and ultimately achieving a clinical cure for HAE.
Thank you Bruce and Marc. I hope that our discussion was helpful for our reader and followers with HAE. We certainly welcome your interest in Center. We look forward to hearing from you and our next “Question of the Week”.