Endometriosis Foundation of America 2014
Moving the political agenda forward ethically: how endometriosis was recognised as a prioritised disease in Denmark
- Lone Hummelshøj
Thank you very much and good morning ladies and gentlemen. I am very conscious that I am now the one who is between you and lunch but I hope you are going to bear with me for the next 15 minutes.
What I am going to address is I am going to talk a little bit about what is ethical, the needs in endometriosis, how we dealt with it in Denmark and then I am going to try and justify why I believe so strongly in Centers of Expertise.
Being from Denmark I am going to start with a fairytale, I thought that would be an appropriate thing to do. This was a book I was given on my Christening many decades ago and I am going to talk to you about the Emperor's New Clothes. We have to think about what we do ethically that just because we give somebody a lot of money, or we are given a lot of money, are we actually doing the right things or, are we just pretending to deliver things because we have to because it is expected from us? And be careful that we are not the ones who end up walking around with no clothes because we fail to see or hear that there is actually no substance to what is being claimed and that we do not get fooled by somebody who then runs away with the loot.
The reason I started with that is because I have seen some of these headlines recently, "If you have endometriosis you cannot have children". So, if you can have children well then obviously you do not have endometriosis because it causes infertility. Well, we heard this morning that is not the case. "Endometriosis causes cancer". We heard again this morning that it does not, there may be an association but that is very different to causality. "Endometriosis causes multi-organ failure". Let us be a little bit careful here. Yes, there are very severe cases of endometriosis that may have severe impact on other organs in a woman but mainstream endometriosis does not. Then there is the whole talk about endometriosis being an auto-immune disease with multiple allergies and co-morbidities. In my opinion, endometriosis is disease enough in itself and it does not actually need to piggy back onto any other disease to be recognized and that is what we are trying to do with seminars such as these to really put attention to a disease that is still quite hidden I think was the word that was used this morning.
What do we need in endometriosis? Well, we have actually already heard about the prevalence and when it occurs so I am going to quickly skip over this and go to the results from the first global perspective study on the actual impact of endometriosis, a seven year diagnostic delay. Typically you have see up to seven different physicians before getting referred and it is actually pelvic pain rather than infertility that is responsible for all negative health related quality of life scores in women with the disease. We also saw that endometriosis accounts for a significant loss of productivity of up to 38 percent more than women without endometriosis, and that is all down to pain. That loss of productivity is potentially much more costly than the direct health care costs.
We proved that in another study at ten centers in North America and Europe which showed that the average annual cost of endometriosis is around €9.5 thousand per woman. But what is very interesting only a third of that is direct health care costs and the rest is loss of productivity. That loss of productivity is twice that of direct health care costs. If we extrapolate that out to different countries then in the United States we are talking about €71 billion. I think that is about $95 billion a year that this disease is costing us. I do think it actually merits to be recognized on its own accord.
And finally, what we also saw, and I think this is really important because one of the challenges we have with endometriosis is quality of life, "yeah, so what, you don't die of endometriosis" but the decrease in quality of life is directly correlated with the cost of the disease as well. The more severe disease, the longer the woman has the disease, the higher the cost. We are looking at an economic burden as I think Linda Guidice mentioned this morning as well, similar to that of Crohn's disease, diabetes and rheumatoid arthritis.
However, we did not have all of these data fourteen years ago when I decided to get onto my hobbyhorse which was Centers of Expertise in Denmark. We had to rely on something completely different and much less dramatic and that was common sense, which according to the Oxford Advanced Learner's Dictionary is the ability to think about things in a practical way and to make sensible decisions. And because laparoscopic surgery is so pivotal in the treatment of endometriosis common sense would actually indicate that the surgeon undertaking that surgery needs to have the relevant experience and expertise to do these complex laparoscopies.
What is expertise? Well that is expert knowledge and skill in a particular subject and one acquires knowledge and skill through 10,000 hours of experience. And experience, just to keep going on this definitions thing, is knowledge and skill acquired by a period of practical experience of something, especially that gained in a particular profession. It was really with these arguments that in the summer of 2000 I called the Danish Minister of Health and asked for a meeting. I never expected them to say yes. The secretary said, "Um, could you come in on Monday at 9:00?" I thought, "Oh my God". I called Professor Forman at Skejby University Hospital and I said, "Axel, what are you doing on Monday?" And he said, "Lone, what have you done now?" I could actually hear him sigh down the phone. I said, "We have a meeting with Karsten Koch, the Minister of Health", and he is like, "Okay, I suppose I'm coming to Copenhagen on Monday morning then".
We went in and presented our case using these arguments and I was literally doing it on a flip chart. We had no numbers we only had a gut feel of common sense for what this disease was costing us. We put the case to the Minister of Health and once I was done jumping around the room and scrolling pictures and everything he looked at us and said, "What do you want?" Axel and I looked at each other and we said, "We want endometriosis to be recognized as a subspecialty and we want centers of expertise". And, through various consultations and discussions with the National Board of Health, two referral centers were proposed and accepted. It went through consultation with the Danish Society of Obstetrics and Gynecology and 18 months later the guidelines were in place and they have now been there for a dozen years.
Centers of Subspecialties in Denmark actually need to commit to training, teaching and research as well. Endometriosis along with other diseases have been part of a major set of guidelines of these various subspecialties and it means that general practitioners can refer directly to those centers and leave out all the visits to general gynecologists, etc. If it is suspected endometriosis you go straight there. But also these guidelines help in terms of legal aspects of referral for the patient's protection. So if a physician says, "Well, actually anything they can do I can do as well" and he or she makes a mistake then that patient is legally protected because that physician did not follow the recommended guidelines.
It also takes away all politics because there are no strategic alliances, there is nobody, "Oh, I always refer to you, or I always refer to you" the guidelines are very, very clear.
Finally, why do we need centers of expertise? It was discussed at the consensus meeting following the 11th World Congress on Endometriosis in Montpellier two and a half years ago and whereas it was agreed that we do believe in individualized care and multi-disciplinary networks of expertise. The unresolved matter is that we still need as a group, or rather you as a group of physicians, because I am not a medical doctor, to determine how do we develop the standards of experience and expertise that are required, specifically for surgeons undertaking advanced laparoscopic endometriosis surgery but also to define what constitutes a center of expertise in terms of accreditation and how long you keep that accreditation for.
I developed this slide back in 2003 where we were talking about centers of excellence. I have actually specifically changed that to expertise. I also do not necessarily believe that we need a physical center of expertise. It can be a network of experts that work together and perform some kind of continuity of care. We can also lead to what Linda Guidice was talking about this morning in terms of collaboration for research, which is very, very important when we are trying to determine the phenome of women with endometriosis.
That brings me to the last point, which is these global research priorities that have been established by a group of clinicians and scientists at the last two world congresses. Two papers have been published on that including 56 recommendations and priorities. International task forces have been put together to address some of these, one being effect again that Dr. Guidice talked about this morning and that global collaboration can really only happen if we have centers of expertise contributing to the knowledge base of endometriosis as they treat these women.
I want to finish on the note of a philosopher that you are probably all familiar with and it is back to the word "excellence". "It is an art won by training and habituation. We do not act rightly because we have virtue or excellence, but rather we have those because we have acted rightly. We are what we repeatedly do. Excellence, then, is not an act but a habit". And from a patient's perspective common sense dictates that women with endometriosis should be treated by physicians sufficiently trained and with extensive experience in the surgical management of the disease.
Whereas some of this can seem a little overwhelming and how do we go about it, I want to finish with the words of another philosopher. This time a Danish philosopher who in 1973 wrote, "Our so-called limitations, I believe, apply to faculties we don't apply. We don't discover what we can't achieve until we make an effort not to try".
Thank you for your attention.
Linda Guidice: Thank you. I would like to thank all of these speakers for this session. We have just a few minutes if there are any burning questions. Yes, there.
Audience Member: I have a question about adenomyosis and the point that there is no conservative treatment. I am just curious about the opinion, opinions on the Osada procedure...
Dr. Guidice: I think that is going to be addressed this afternoon in the session on controversies and surgery so maybe we can hold that discussion till then. I think there is another hand for a burning question over there.
Audience Member: As far as the not treating endometriosis as a disability, do you see that changing at all? The last I checked it was not on the list of disabilities and it has kept me out of work so I am just wondering if you see that changing and whether there is anything going on.
Dr. Schneller: From my recent looking into this it looks like it is really a case by case basis as to whether - really in that specific context of the employer providing accommodations to a woman. But I think, as I mentioned with the amendments to the disability discrimination laws they are expanding the ability to get reasonable accommodations for a broader range of disability. So I think the progress is going in the right direction, if that answers your question.
Lone Hummelshøj: If I can just make a comment to that as well. I think we have to be very, very careful that we do not label endometriosis as a disability. It can be disabling for some and therefore it is good to know that it is being considered on an individual basis but let us not stick the disease with the label "disability" because that is going to affect thousands and thousands of women in employment, the minute an employer knows they have endometriosis, so we have to be careful to go down that route.
Dr. Mettler: To that I would also like to add that the meeting mentioned by Lone of Montpellier, it clearly states that in a whole chapter. So really the disease must never be a disabling and not to be compared with an amputation. I am strongly against women getting, I do not know how you say it in English, but getting out of work and being disabled and just getting a pension. I really always try the patients to find a way to continue work, not to be disabled. That is no solution for a life.
Linda Guidice: There is one final question, I think Tamer.
Dr. Seckin: Question: In a school setting can the leader of the school, whoever makes the call, does he have the power not to recognize endometriosis as an ailment that may not make that student take her regular exam or threaten to discontinue her career. This is not really sex discrimination, it is different.
Dr. Schneller: Right. So I think to me what is a similar comparison is accommodations for students who are pregnant, which is similar to pregnant workers. If a student who is pregnant requires an accommodation like taking an exam at a different time because of her pregnancy the school has to do that. It is an area of law that is still working out its kinks. A lot of schools do not know they have to do that but they are required by federal law. I think that is a good comparison to say that a student with endometriosis that is having disabling conditions, or however we want to talk about it, preventing her from taking an exam on a certain day. It seems to me that there is certainly an argument there that the school does have to make that accommodation.
Linda Guidice: Lone, did you have a comment?
Lone Hummelshøj: It is really back to the individual case and I do think that when endometriosis does become disabling that women deserves all of our support in trying to get that recognized and for allowances to be made. But there is a difference again between calling endometriosis a disability in itself.
Linda Guidice: Well, I think the debate could go on. Just for time I would like to thank all of the speakers in this session.