“My doctor keep stressing that I am only to use Firazyr for a severe stomach attack or a throat attack due to how much it costs. I keep hearing others say they use it for any attack. What is your opinion?”
Dr C:I thought that this ‘left over’ question from our last patient summit would be interesting to discuss this week. Let me begin by referring our readers to the US HAEA website:http://www.haea.org/. This is a wonderful resource of information. On the site they have highlighted the consensus guidelines from our Medical Advisory Board on the treatment of HAE published in 2013. This document contains the recommendation that ‘all attacks, irrespective of location, should be considered for treatment as soon as they are clearly recognized’. We should not be ignoring the debilitating nature of swelling at any site. In the past patients may have been given the feedback of ‘its just your hand’ with the implication that this was not important. Published literature has reported that 80% of patients associated peripheral attacks with severe dysfunction—in other words ‘a hand’ or ‘a foot’swelling disrupts their lives. I personally believe that the price of the medication should not enter into the conversation about a treatment plan—other then to determine the best way to work with a patient’s insurance and assistance plans for coverage. The focus of the patient physician partnership in designing a management strategy should be ‘best care’. With the current choices of therapy we should be working to normalize the lives of patients affected by HAE. Bruce and Marc, any thoughts here?