Dr. Sussman: Good afternoon, everyone. I’m Ilene Sussman, the Executive Director of the VHL Alliance, VHLA, at www.VHL.org, and we’re lucky enough to have with us today Dr. Eric Jonasch, who is the Chair of the Clinical Advisory Council and the Research Council as well as the sponsor of the Comprehensive Clinical Care Center at MD Anderson in Houston. Dr. Jonasch, thank you so much for taking the time today. I know things are really busy and also thank you for all that you do for our VHL patients. So I thought that I would just ask you a couple of questions to help patients get through these couple of months and deal with their concerns and anxiety, and hopefully, you’ll be able to answer them. So, what precautions should VHL patients use to protect themselves against COVID-19 and are there any additional protective measures that you recommend specifically for people with VHL?
Dr. Jonasch: So thanks, Ilene, and I really appreciate the opportunity to be able to talk with you this afternoon. Obviously, this is an unprecedented situation worldwide and one that’s causing a lot of anxiety both amongst individuals with von Hippel-Lindau disease and the general population. At this point in time, my recommendations for individuals who are living with VHL disease is to really follow the guidance from state, regional as well as national authorities from a standpoint of social distancing and making sure that you’re keeping yourself and your loved ones safe.
There really are no major differences between individuals who are living with VHL and the general population from a susceptibility perspective, and if individuals with VHL disease were to get COVID-19 virus, the likelihood of them becoming more ill than other people really is probably low, but the risk is really there. So, my recommendation would be that people really practice safe and persistent social distancing and make sure that you keep your family members safe.
Dr. Sussman: Thank you. And what about patients who have adrenal insufficiency?
Dr. Jonasch: So, adrenal insufficiency would result in individuals not mounting as much of a fight-or-flight response if they were to become quite ill. So anyone who does become sick who has adrenal insufficiency, regardless of whether it’s from COVID-19 or any other illness, really needs to make sure that their healthcare providers and people who…whichever healthcare setting they are, are aware of this and that way appropriate additional steroids can be given.
Dr. Sussman: Thanks. That’s great information. What about those who might be pre- or post-surgery?
Dr. Jonasch: So surgery obviously is something that puts stresses on the system, on your body. It in and of itself probably does not increase risk in an inordinate amount, but I think that anybody who does have any sort of stress to their system really should be extra cautious.
Dr. Sussman: And then...what I hear a lot about from patients about the concerns regarding their surveillance with hospitals increasingly busy and with them pretty rampant with COVID-19 at this point, what about patients’ routine scans? And what should they do about if their appointment has been canceled or their surgery has been postponed?
Dr. Jonasch: That’s a really good question, Ilene, and at this point in time, I think this is something that really needs to be discussed with you or your primary care team, but general principles here would be that if you could avoid getting a scan during this immediate time, it would probably be a wise thing. Based on what we’re seeing, the projections, this is probably the most dangerous time to be going into a hospital. We hope that that’s going to improve over time and that that’s going to be less the case in 2 to 3 months from now. So, if there are things that can be deferred without really causing risk to yourselves, then it’s probably a good idea but this really needs to be a decision made in the context of your primary team.
Dr. Sussman: All right. Thank you so much. I greatly appreciate it. It’s been a great help. And I do want to make sure that people know that the VHL Alliance is still working and we’re still here to help those patients in need in any way that we can. So thank you.
Dr. Jonasch: Thank you, Ilene, and to all of you out there, be safe and we’ll get through this.
Dr. Sussman: Great. Thanks.