The Women's Pelvic Floor Health and Awareness Act

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Roberta Speyer: Hello, I am Roberta Speyer reporting for OBGYN.net. I am here in San Diego at the 2004 meeting of the American Urogynecologic Society, or AUGS, meeting and I have the pleasure of talking to Dr. Karl Luber and you are the chairman on a special committee for Government Relations for AUGS.

Karl Luber, MD: That is right.

Roberta Speyer: You have a new house resolution which is house resolution 4979, but it has a better name, I think, that we could call it.

Karl Luber, MD: Yes, a little softer name. House resolution 4979 is a bill that, through the hard work of some of our legislators, Senator Nethercut from Washington, and the American Urogynecologic Society, and the title of the bill is the Women’s Pelvic Floor Health and Awareness Act.

Roberta Speyer: That is a mouthful. What does that mean?

Karl Luber, MD: Well, you know, women’s pelvic floor disorders, specifically urinary incontinence, pelvic organ prolapse where people’s vaginas can turn inside out, rectal incontinence, are remarkably common disorders. Unfortunately, they are not well recognized by either the medical community or the lay community. They tend to be disorders that women suffer in silence.

Roberta Speyer: Why is that? Is it because of the embarrassment associated with having incontinence problems?

Karl Luber, MD: Absolutely. You know, LBJ had no problems showing us his scar from when he had his gallbladder out, breast cancer has become an issue that people are comfortable talking about, even mastectomies, but women with urinary incontinence, this is just not a comfortable issue, women with rectal incontinence. I like to say it is not cocktail conversation.

Roberta Speyer: Yes, I agree, and also just being a woman of 48 myself and having had children and friends, I think we have come to almost expect that, well, you are going to cough or you are going to laugh or there is going to be a certain amount of this type of problem and our mothers have told us that this is just the way it is, and you are saying that there is a lot that can be done now to change that. How does that all play into the whole aging, baby-boomer generation and how many people are going to suffer from this in the coming years? What are your projections?

Karl Luber, MD: That is a really, really big question. We know that through some wonderful work that was done about six years ago, about 11% of women end up having surgery for some form of pelvic floor disorder, either prolapse or a form of incontinence.

Roberta Speyer: That is not having a problem, that is actually having surgery for a problem.

Karl Luber, MD: Yes, exactly. So if you imagine that there is a number of women who never even pursue care for the problem, it is a staggering number of folks who are affected.

Roberta Speyer: Absolutely.

Karl Luber, MD: And the costs are remarkable. It is estimated that we spend about $26 billion a year on both direct and indirect effects of urinary incontinence.

Roberta Speyer: Are these surgeries successful? Who does them?

Karl Luber, MD: They are. The surgeries are done by the most qualified and best-trained person and that could be a gynecologist who is trained in urogynecology, that could be a urologist who is trained in female urology. The key is to find somebody who cares deeply about this problem and has focused a good portion of their practice on it.

Roberta Speyer: So it is tricky and you should make sure when you are looking for a surgeon that it is a surgeon who has specialized training and specialized interest in urogynecology or female urology.

Karl Luber, MD: Absolutely.

Roberta Speyer: Those are the two things for women to remember. Now for this particular house resolution that is coming up, this is all happening over the course of the next few months so we are talking about a period of August through November.

Karl Luber, MD: Yes, yes. It is interesting. I am fairly nave about things within the beltway at Washington, but what I have learned is that once you introduce a bill like this, we have to make enough noise that our representatives in Washington realize that this is a real issue, that this affects a lot of people.

Roberta Speyer: So what is AUGS doing to make that noise? Is there someplace that people on OBGYN.net, the physicians, the women, where we can come and maybe fill something out on your website, make some kind of, help let people know who are in a position to do something that we care about this bill?

Karl Luber, MD: We have a very easy mechanism. Anybody interested in this bill can go to our website, which is simply www.augs.org, for the American Urogynecologic Society, and on there look for “legislative agendas”. In there, you will find a pre-written letter that you can print out, sign, you can send it to us with your zipcode at AUGS and we will get it to your senator. You do not even have to know who your senator is. Alternatively, you can hook up directly to your senator through our website using a special email system we have. Either way, but most importantly, we want the women to be speaking. So if you are a physician, feel free to pass this information on to your patients.

Roberta Speyer: So possibly physicians could even make something and they could print it out and have it in their offices and talk to their patients and we can go ahead on OBGYN.net and we can link directly to the forms that are online.

Karl Luber, MD: Perfect. On behalf of the women affected by these issues, we would really appreciate that.

Roberta Speyer: Oh, we would love to do that. This is, in my experience in nine years of working with the physicians, this area is just, AUGS is doing a wonderful job bringing this to life and I do not want to in any way downplay the seriousness of things like breast cancer and heart disease, but I do want to say that this has really been an area that has been underserved, that is going to affect a very broad number of people and it really needs to get more attention.

Karl Luber, MD: Yes, you know, we sure do not want to feel like we are going to take resources away from any other disease category but, at the same time, I sit in my clinic every single day and have women come in who are completely debilitated by these disorders. They have given up their work, they have given up any form of exercise, they have given up socializing, even with their families, they have given up going to services at temple or church, sex becomes absolutely untenable for these women. On the flipside, I have women who come in through sometimes completely non-invasive treatments. No surgery or anything, just rehabilitation and medication and they come back and say you have given me a new life.

Roberta Speyer: Is this problem, Dr. Luber, exclusively old women at the very end of their life? I think maybe sometimes we think this is women who are in nursing homes, 80-years-old.

Karl Luber, MD: Therein lies one of the big difficulties women have. They identify this with becoming old and so they automatically feel that this shifts them into another category. The truth is, when you look at women affected by these disorders, a half of the women are younger than 60. So it affects women in their 30s, 40s and 50s.

Roberta Speyer: Is it a progressive situation where possibly, and I do not know the answer, I am curious to hear it myself, is this something that if it is treated or diagnosed maybe in their 40s, it is going to have a better outcome for them further down the road?

Karl Luber, MD: That is a hard question. There are some women who will not present with the disease until they become more mature. Of those women who present at younger ages, probably it is important for them to really focus on rehabilitating the muscles of the pelvic floor and that is a good area that people like to make jokes about.

Roberta Speyer: Do those kegels!

Karl Luber, MD: Do those kegels, girls! It is really important because if you look at a 75-year-old woman’s arm, or man’s, there is a loss of muscle mass and that is in a muscle you use all the time. Now think about your pelvic floor. That is not a muscle you use all the time, so yes.

Roberta Speyer: I am doing them right now just talking to him.

Karl Luber, MD: And she is doing a good job.

Roberta Speyer: Seriously, going back, we are going to make it easy for all of you to connect and we need to get the voices out there and this is the first real attempt of this type, is it not? To put some legislation through?

Karl Luber, MD: It is really groundbreaking.

Roberta Speyer: We would like to have it happen, and even if we do not get as far as we need to this time, we have to start somewhere and I know AUGS will continue to work on this in the future.

Karl Luber, MD: We are committed to fighting the fight.

Roberta Speyer: Thank you so much, Dr. Luber.

Karl Luber, MD: Thank you, Roberta.

For more information on House resolution 4979, Women’s Pelvic Floor Health and Awareness Act, see http://www.theorator.com/bills108/hr4979.html