Expert Forum: Advocating for patients with erectile dysfunction


“We need to continue to advocate for the patient,” says Arthur L. Burnett II, MD, MBA.

In part 4 of this Expert Forum series on the hidden burdens of erectile dysfunction (ED), moderator Arthur L. Burnett II, MD, MBA, and panelists Martin S. Gross, MD, John J. Mulcahy, MD, PhD, and Faysal A. Yafi, MD, FRCSC, discuss what else can be done to help patients with ED. Burnett is the Patrick C. Walsh Distinguished professor of urology and oncology at the Johns Hopkins University School of Medicine and the James Buchanan Brady Urological Institute in Baltimore, Maryland; Gross is an assistant professor of surgery at Dartmouth Geisel School of Medicine in Hanover, New Hampshire, Mulcahy is president of Mulcahy Consulting Inc, and Yafi is an associate professor of urology, chief of the Division Men’s Health and Reconstructive Urology, director of Men’s Health and Newport Urology and co-Director of the Eric S. Wisenbaugh GURS Fellowship in Male Reconstructive and Prosthetic Urology at the University of California, Irvine.


Burnett: So I guess I'm thinking here in terms of how we address this better; are there some additional thoughts that any of us can share with regard to the audience here? How might urologists watching this take any action steps in addressing the burdens of ED?

Yafi: I think urologists have to learn the key words that will improve coverage for a lot of the sexual dysfunction issues. So for example, instead of saying penile implant for ED, saying a penile implant because a patient has vasculogenic [factors] that are causing his erectile dysfunction, things of that nature, things that improve the chances that there will be some coverage, making sure that the note clearly status states that the patient has failed first therapies...but also being proactive, and, doing the peer to peer as well—the insurance companies, writing letters on behalf of patients, which we do very often to try to get them implant coverage. We've actually even written letters to HR representatives at different companies, where it was an exclusion from the insurance of the patient, and worked with the patient and their HR on getting approval. So I think from a patient perspective, we have to be the advocates of the patient, not only as a whole, but also as an individual. It's great to do the advocacy where we try to get things done on a massive level. But until we get there, I think is very important that as part of our job that we try to advocate for patients individually, through talking to their insurance providers to making sure our documentation is appropriate, teaching other urologists, what are the key words that are going to improve coverage for different options, but also making sure that we have enough talk to the insurance companies to explain to them that if the patient does not get treatment for something as important as erectile dysfunction, maybe they won't be as productive, maybe they'll have more stress. So I think beyond the big picture, we also have to focus on the small picture.

Gross: I think the flip side of advocating for our patients, both individual patients as well as all patients, is listening to our patients. To start off the conversation, we talked about the burdens of depression and frustration and shame that accompany erectile dysfunction. Sometimes, we're the only people that our patients have to talk to about those issues. I'm not a psychiatrist by any stretch of the imagination, but at the same time to give my patients the time and the space to talk about what are very intense, emotional issues for them that they have nobody else to talk about, except perhaps their spouse (but not often their spouse), is very important. You have to give them the space to explore these things. Men are a population that don't really have a lot of resources and outlets to be able to communicate these things that bother them. So if you have a guy who's depressed, and tells you he's depressed, and even if you fix his ED, you really have to give him the resources and the tools to be able to find somebody else to help with the other symptoms of his mental health.

Burnett: I agree. I think these are action steps that even on a basic level to help offer suggestions to our fellow urologists, just about how we can advance the best care for patients and certainly acknowledge the condition, acknowledge that if you're unable to treat it, find the right experts to get involved, and certainly look to find the best treatments. I think it's been stated earlier that among the variety of factors contributing to lack of access could be health plans. But ultimately, I think the statistics do show that among men out there with erectile dysfunction, if you combine all ED treatments, probably we're treating less than 1% of all men with ED. Now, who knows what's going on out there with direct-to-consumer marketing and some other things that are going on, and maybe some of the nonconventional therapies. But we need to continue to advocate for the patient. I think that we need to make sure that we address all populations who are having erectile dysfunction and recognize the health conditions that are associated with ED and help to push how these things are bidirectionally related to improve the treatment of ED and improve their health in that regard and vice versa. I think we have to continue to have a very proactive role as practitioners to help address these burdens and advance the cause of erectile dysfunction which, unfortunately, often even among urologists is considered a foster child condition.

Mulcahy: I think everybody's of one accord here. We need to be proactive, and we need to get industry involved as well, because it's to their benefit, as well as to urologists' benefit and the patients' benefit to get the disease treated.

Burnett: We've had a great discussion; are there some additional final remarks or specific talking points that any of us want to bring up that may have been missed here in our discussion thus far?

Mulcahy: I think we hit the main points—that ED is a very treatable condition in patients. Certainly, for many aspects—the workplace as well as the home and the marital relationship, men certainly are suffering because of this malady. It doesn't affect just 1 person; it affects everybody and his surroundings, so to speak, when he has ED. Everybody gets affected by this, even in his relationships with his peers at work. It's not only his productivity at work, but his relationship with his peers. He's moody. He doesn't socialize the way he should. All of these things certainly should be brought forward. It's not only the fact that he's got the disease, it's the fact that he's got a lot of other things that, as a result of this, are going south as well.

Gross: Also, we have to look at how far we've come in this kind of conversation, too. If you look at Bob Dole advertising for Viagra [sildenafil citrate] in 1998, that was revolutionary, and really only about 25 years ago. So we have certainly come quite a long way as far as having the conversation about this in the common culture and being able to discuss this more openly and, frankly, and the benefit of that is that that increases opportunity for advocacy, and for moving forward even further. So I think now that the door has been cracked just slightly, we can certainly wedge the door open and keep driving forward with advocacy and with maximizing our potential.

Yafi: I completely agree. I think the more we bring awareness to other urologists and to other prosthetic urologists about what we should be doing on our end, and participating in advocacy programs like you gentlemen have done, and bringing to the forefront some of the data, particularly your data, Dr. Burnett, about lack of productivity, related to lack of treatment of ED, I think these are things that are crucial for us to be able to to get better coverage, and to better serve our patients.

Burnett: Well, I think we had a tremendous session. I want to thank all of you for being great participants and great thought leaders in this field. I think that we've been able to bring forward a lot of discussion points and I think this would be something that will benefit the listeners and hopefully, this will stir a call to action to address these hidden burdens. So thank you very much.

This transcription was edited for clarity.

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