Our biggest medical challenge : Minimally invasive and easily available medical fibroid treatment is not available to all women.
Easily-administered, long-term, low- cost medical treatment without debilitating side effects for uterine fibroids are sorely needed now (1). This is our biggest challenge now. Until we solve this challenge the well-documented health disparities among women with benign tumors with serious symptoms will become more pronounced. Fibroids have been a neglected disease for eons. There is a report of an ancient mummy with uterine fibroids. Despite this little has been done to develop long -term medical therapies. For many years the only treatment available was hysterectomy. Approximately twenty years ago scientists and clinicians began to explore in depth the pathobiology of fibroids leading to a greater appreciation of their initiation and growth at a molecular level. This increase in understanding was primarily due to increased research funding and to excellent patient advocacy. However, there is more to learn. We now understand the complexity of these clonal tumors, including the roles of genetic alterations, reproductive hormones, numerous growth factors and mechanical signaling in their initiation and growth. We learned through epidemiological studies that they are common tumors of the uterus and that black women develop them at an earlier age that white women. We appreciate that studies conducted in hospitalized patients will underestimate the problem as many women do not seek medical care. We also are acknowledging that we may underestimate the symptoms of fibroids for the same reason. Many women do not seek care because they think severe bleeding and pain is “normal”.
Newer minimally invasive therapies such as laparoscopic myomectomy, hysteroscopic myomectomy, uterine artery embolization, focused ultrasound magnetic resonance ablation, and radiofrequency ablation are now used in many settings. While I applaud the development of these therapeutic options, they all require very expensive complex equipment and imaging as well as highly trained and skilled professionals to treat patients. Because of these factors, these treatments are for the large part, only available in most countries at medical centers and larger regional hospitals. A great majority of women living in rural areas, or resource poor urban area, or who are poor without the financial ability to pay cannot avail themselves of these treatments. Women in these situations in Africa, Asia, South America and North America are not getting treated for their fibroids and suffer with the heavy bleeding, anemia and pain which interferes with the ability to work as well as care for their families. This is not right.
While there has been some progress in the development of medical therapies, there is no long term, low cost, safe, effective and easily administered medical treatment at the present time (1). Some of the blame is due to the fact that the biology of uterine fibroids is complex and therefore it is difficult to develop medical treatments, but part is due to the fact that many large international pharmaceutical companies are not interested in uterine fibroids. There are some exceptions to this situation and hopefully the few companies involved in developing treatments for the indication of treating fibroids will be successful in the future.
The fact remains that no long-term (more than two to three years), safe, effective, low-cost, easily administered medical treatment exists at this time. This is a sad situation since epidemiologic studies report that the incidence is high in populations studied. Fibroids are very common tumors with significant symptomatology. The one most cited study was conducted in one city in the eastern part of the United States and demonstrated that the cumulative incidence of uterine fibroids before age fifty is greater than eighty percent in black women and almost seventy percent in white women (2). Other studies confirm this incidence. I personally suspect that when incidence studies are done in other parts of the world, they will demonstrate identical findings. There still are many places word-wide were health workers have no idea how many women in their districts have uterine fibroids. These are the women who suffer most and are most often black and brown women. But we must not forget that white women also have fibroids and those who are poor are suffering without available treatment. Insurance often pays only for hysterectomies that by definition limits childbearing. I hear women saying over and over; “We need medical therapies”. “ We need treatments that are not expensive and that we can get in our own communities.” If reproductive scientists and clinicians do not develop the long term, easily accessible low- cost medical therapies the health disparities associated with uterine fibroids will only get worse.
The Campion Fund is partnering with two advocacy organizations on two different dates this February to raise awareness of this and other issues. One meeting planned, The Fibroid Summit 2022 on February 8 and 9th is a virtual meeting to highlight new research findings. Our partner is The Fibroid Foundation, Bethesda, Maryland, USA with chapters all over the world. Their founder and CEO is Sateria Venable who has been a major advocate for research and effective clinical treatments as well as providing women with outstanding up to date information and support. During the Fibroid Summit 2022, five outstanding scientists will present their current research along with ample time to discuss their findings. This is going to be an exciting meeting. The Fibroid Summit 2020 had an attendance of over 600 persons and we anticipate a large registration this year. The second meeting is being held with FibFA (Fibroid Foundation Africa), Accra, Ghana. Their Executive Director is Elizabeth Korasure. The meeting, Uterine Fibroids: The Science, The Treatment, The Myths, is also a virtual meeting and will be held on February 24, 25th. The focus of this meeting is to bring together patients, providers and health authorities from twelve African nations to hear women’s stories, raise awareness, discuss health policies regarding uterine fibroids, care coordination, stimulate advocacy programs, and present available therapies. I know that the meeting will have a great impact on the care of women with fibroids in Africa and will enhance awareness of this problem among the health officials of the countries attending.
These two meetings hold great promise in that they will present ideas that will point to a way forward to lessen the health disparity of access to treatment and the development of long-term, low-cost, safe and effective medical treatment. Interesting questions are : Is it possible for creative clinicians to adapt sophisticated imaging, surgical and radiological techniques for less resource intensive environments? Are there imaging techniques that can be used to diagnose and pinpoint the precise location of uterine fibroids to enhance laparoscopic myomectomy in smaller hospitals and regional clinics? Can these adaptations be used not only in Africa but in the many rural underserved areas of North America? What can we do to increase the development of long-term, low-cost, safe, effective medical therapies without debilitating side effects that can be used in all places world-wide? I hope that many individuals will decide to attend both meetings, if possible, but if not at least access the videos. With uterine fibroids so common all over the word is important that we all work together. Hopefully these meetings will initiate the process of dialog and joint activities. I for one love and admire both Sateria and Liz. If all the women of the world unite, we can accomplish much.
Phyllis C. LEPPERT, MD, PhD
(1). Yu O, Scholes D, Schulze-Rath R, et al. A US population-based study of uterine fibroid diagnosis incidence, trends, and prevalence: 2005 through 2014. Am J Obstet Gynecol 2018;219: 591.e1-8.
(2). Baird DD , Dunson DB. Hill MC, et al. High cumulative incidence of uterine leiomyoma in black and white women: Ultrasound evidence. American J Obstet Gynecol 2003;188:1: 100-107.
Our biggest medical challenge : Minimally invasive and easily available medical fibroid treatment is not available to all women.
Easily-administered, long-term, low- cost medical treatment without debilitating side effects for uterine fibroids are sorely needed now (1). This is our biggest challenge now. Until we solve this challenge the well-documented health disparities among women with benign tumors with serious symptoms will become more pronounced. Fibroids have been a neglected disease for eons. There is a report of an ancient mummy with uterine fibroids. Despite this little has been done to develop long -term medical therapies. For many years the only treatment available was hysterectomy. Approximately twenty years ago scientists and clinicians began to explore in depth the pathobiology of fibroids leading to a greater appreciation of their initiation and growth at a molecular level. This increase in understanding was primarily due to increased research funding and to excellent patient advocacy. However, there is more to learn. We now understand the complexity of these clonal tumors, including the roles of genetic alterations, reproductive hormones, numerous growth factors and mechanical signaling in their initiation and growth. We learned through epidemiological studies that they are common tumors of the uterus and that black women develop them at an earlier age that white women. We appreciate that studies conducted in hospitalized patients will underestimate the problem as many women do not seek medical care. We also are acknowledging that we may underestimate the symptoms of fibroids for the same reason. Many women do not seek care because they think severe bleeding and pain is “normal”.
Newer minimally invasive therapies such as laparoscopic myomectomy, hysteroscopic myomectomy, uterine artery embolization, focused ultrasound magnetic resonance ablation, and radiofrequency ablation are now used in many settings. While I applaud the development of these therapeutic options, they all require very expensive complex equipment and imaging as well as highly trained and skilled professionals to treat patients. Because of these factors, these treatments are for the large part, only available in most countries at medical centers and larger regional hospitals. A great majority of women living in rural areas, or resource poor urban area, or who are poor without the financial ability to pay cannot avail themselves of these treatments. Women in these situations in Africa, Asia, South America and North America are not getting treated for their fibroids and suffer with the heavy bleeding, anemia and pain which interferes with the ability to work as well as care for their families. This is not right.
While there has been some progress in the development of medical therapies, there is no long term, low cost, safe, effective and easily administered medical treatment at the present time (1). Some of the blame is due to the fact that the biology of uterine fibroids is complex and therefore it is difficult to develop medical treatments, but part is due to the fact that many large international pharmaceutical companies are not interested in uterine fibroids. There are some exceptions to this situation and hopefully the few companies involved in developing treatments for the indication of treating fibroids will be successful in the future.
The fact remains that no long-term (more than two to three years), safe, effective, low-cost, easily administered medical treatment exists at this time. This is a sad situation since epidemiologic studies report that the incidence is high in populations studied. Fibroids are very common tumors with significant symptomatology. The one most cited study was conducted in one city in the eastern part of the United States and demonstrated that the cumulative incidence of uterine fibroids before age fifty is greater than eighty percent in black women and almost seventy percent in white women (2). Other studies confirm this incidence. I personally suspect that when incidence studies are done in other parts of the world, they will demonstrate identical findings. There still are many places word-wide were health workers have no idea how many women in their districts have uterine fibroids. These are the women who suffer most and are most often black and brown women. But we must not forget that white women also have fibroids and those who are poor are suffering without available treatment. Insurance often pays only for hysterectomies that by definition limits childbearing. I hear women saying over and over; “We need medical therapies”. “ We need treatments that are not expensive and that we can get in our own communities.” If reproductive scientists and clinicians do not develop the long term, easily accessible low- cost medical therapies the health disparities associated with uterine fibroids will only get worse.
The Campion Fund is partnering with two advocacy organizations on two different dates this February to raise awareness of this and other issues. One meeting planned, The Fibroid Summit 2022 on February 8 and 9th is a virtual meeting to highlight new research findings. Our partner is The Fibroid Foundation, Bethesda, Maryland, USA with chapters all over the world. Their founder and CEO is Sateria Venable who has been a major advocate for research and effective clinical treatments as well as providing women with outstanding up to date information and support. During the Fibroid Summit 2022, five outstanding scientists will present their current research along with ample time to discuss their findings. This is going to be an exciting meeting. The Fibroid Summit 2020 had an attendance of over 600 persons and we anticipate a large registration this year. The second meeting is being held with FibFA (Fibroid Foundation Africa), Accra, Ghana. Their Executive Director is Elizabeth Korasure. The meeting named the Premier African Conference on Uterine Fibroids is also a virtual meeting and will be held on February 24, 25th. The focus of this meeting is to bring together patients, providers and health authorities from twelve African nations to hear women’s stories, raise awareness, discuss health policies regarding uterine fibroids, care coordination, stimulate advocacy programs, and present available therapies. I know that the meeting will have a great impact on the care of women with fibroids in Africa and will enhance awareness of this problem among the health officials of the countries attending.
These two meetings hold great promise in that they will present ideas that will point to a way forward to lessen the health disparity of access to treatment and the development of long-term, low-cost, safe and effective medical treatment. Interesting questions are : Is it possible for creative clinicians to adapt sophisticated imaging, surgical and radiological techniques for less resource intensive environments? Are there imaging techniques that can be used to diagnose and pinpoint the precise location of uterine fibroids to enhance laparoscopic myomectomy in smaller hospitals and regional clinics? Can these adaptations be used not only in Africa but in the many rural underserved areas of North America? What can we do to increase the development of long-term, low-cost, safe, effective medical therapies without debilitating side effects that can be used in all places world-wide? I hope that many individuals will decide to attend both meetings, if possible, but if not at least access the videos. With uterine fibroids so common all over the word is important that we all work together. Hopefully these meetings will initiate the process of dialog and joint activities. I for one love and admire both Sateria and Liz. If all the women of the world unite, we can accomplish much.
Phyllis C. LEPPERT, MD, PhD
(1). Yu O, Scholes D, Schulze-Rath R, et al. A US population-based study of uterine fibroid diagnosis incidence, trends, and prevalence: 2005 through 2014. Am J Obstet Gynecol 2018;219: 591.e1-8.
(2). Baird DD , Dunson DB. Hill MC, et al. High cumulative incidence of uterine leiomyoma in black and white women: Ultrasound evidence. American J Obstet Gynecol 2003;188:1: 100-107.