Women – all women – are medically underserved. This thought has gone over and over in my mind as I have read all the articles and news items, both in the medical literature and in the general newspapers regarding the use of power morcellation for the removal of uterine fibroids. On one hand this procedure allows the removal of uterine fibroids through a small incision and prevents the complications of more extensive surgery. However, its use can be a life threatening situation if the tumor morcellated is a cancer and spreads the cancer cells.
I have gotten a bit weary of all the articles about whether the procedure is a good one or not and what the FDA should or should not do. Or what clinical guidelines we should adopt to prevent the seeding of cancer in the women’s abdomen. Will a bag to contain the tissue during the morcellation help or not? What concerns me and makes me upset as a woman is that everyone seems to be missing the real point. The real point is that we as scientists and medical professionals really have no idea about the cause of fibroid development and their growth in the first place. How can we adequately and safely treat a problem that we really do not fundamentally understand?
These fibroids, also called leiomyomas, are benign because they do not spread to other organs. But, they cause pain, bleeding, anemia (and loss of work because of that) and in many cases infertility. The leading treatment, hysterectomy, itself, takes away a woman’s childbearing ability. How can a caring physician not ask the questions about the etiology of tumors that occur in 70-80% of women? How can a caring physician surgeon even decide how best to treat an individual woman when we have no fundamental ideas, scientifically accepted by all in the field, that really let us know about the basic biology of these tumors? As professionals we have conducted a number studies and have some provocative findings, but we mostly have hypotheses. Unfortunately, we have more theories and more possible fibroid-initiating molecules and genes than we have tools or medications to treat these tumors, which are costing our society more money than the cost of treating type II diabetes.
For too long very little basic fundamental research has studied this question. It is true some research funds have been spent on this problem over the past decade and we have made some progress. But in terms of the total NIH funding, a very small amount of total dollars has been granted for research in fibroids, much of it for clinical research. This funding is too little too late. If we do not know the fundamental cause of uterine fibroids, our treatment options are stagnant. This is why I am upset and I suspect other women are too. And this is wrong. This situation makes all women medically underserved.
Make no mistake; it is always a tragedy when a young women dies from a terrible disease like leiomyosarcoma. Make no mistake; it is difficult to make a decision of how to treat uterine fibroids in young women who wish to preserve their fertility. Make no mistake; we need more efficient and accurate methods of diagnosis of leiomyoma (fibroids) and to distinguish these benign tumors from leiomyosarcoma so that a diagnosis can be made prior to treatment. Make no mistake; we need more research into new treatment options. However, the real tragedy is that we have not as a country spent the time, effort and money needed to really understand the etiology of these tumors. Some would say, well, we have some knowledge, we know about this gene or that gene, or we know about the altered nature of the extracellular matrix that make up the tumors and we are conducting clinical trials on some new drug and treatments. That is all good, but there should be a sense of urgency to do more, to find out more. We need to know as much as we currently know about the basic biology of breast cancer, for instance. We need to understand the dynamic interaction of uterine muscle cells and their microenvironment that leads to fibroids in the first place. We cannot rationally treat what we do not really understand.
This is why the Campion Fund has decided to focus on uterine fibroids for the years 2014-2015. We are trying our best to raise awareness of the real need to learn more basic science about fibroids, and to raise funds to give as scientific grants so that laboratory studies can be conducted to get at facts. Facts such as why do some fibroids grow as large as a melon or even bigger, why do some seem to shrink on their own, what is their relationship to leiomyosarcoma, what triggers the development of those cancers? What is it about the 20-30% of women who do not develop fibroids? What keeps them from getting these tumors? Why is it that women with African ancestry develop fibroids at an earlier age than Caucasian women? Why do they seem to have more fibroids?
Why is it that we have really ignored this basic problem? We need to do something better than we have been doing to elucidate the causative effects. We need to fund research that will look at the way cells and their microenvironments behave in tissues and the interplay of many molecules in the initiation of fibroids and not just look at one or maybe two molecules that a particular study seems to suggest is the cause of these costly tumors. It is estimated that up to $34.4 billion is the annual cost of fibroids. If our country would fund studies on the basic cause of fibroids with the equivalent dollars we spend on studying breast cancer, or cardiovascular disease we would get somewhere. Women would begin to be less medically underserved.
–Phyllis Leppert, MD, PhD
Campion Fund Founder and President