U.S. Senate Committee on Health, Education, Labor & Pensions
Full Committee Hearing on Pain in America: Exploring Challenges to Relief
February 14, 2012
Testimony of Christin Veasley
Executive Director, National Vulvodynia Association
On Behalf of the Chronic Pain Research Alliance
Chairman Harkin, Ranking Member Enzi, members of the committee, thank you for the opportunity to speak with you about how chronic pain affects the lives of millions in our country.
We extend our sincere gratitude to the Committee for passing a bipartisan amendment that called upon the prestigious Institute of Medicine (IOM) to study this public health crisis and develop recommendations on how to improve pain research, medical care and education. I cannot overstate its importance. The IOM report and today’s hearing give us renewed hope – hope that our country is listening to us, cares about our plight, and is ready to enact longoverdue change to help us regain our quality of life and ability to contribute to society.
My name is Christin Veasley. I am the executive director of the National Vulvodynia Association (NVA), a non-profit organization dedicated to improving the lives of the 1 in 4 American women, and countless adolescents who, throughout their lifetime, suffer with chronic vulvar (genital) pain. In addition to serving as an organizational representative, I am also a chronic pain sufferer myself. I survived a near-fatal car accident in my teens and found a resolution to the debilitating vulvar pain I experienced in my twenties; however, back and neck pain have been an unwanted companion for 21 years, and since 2008, I’ve developed jaw and facial pain, as well as migraine headaches.
My story echoes the experiences of millions in our country who bravely fight pain every day of their lives. From the moment I open my eyes each morning, the first thing I feel is pain. Just to get out of bed can be an insurmountable challenge. Normal daily living has become more and more difficult and it is a struggle to just get through the day. As the number of hours devoted to medical appointments, managing pain symptoms and coping with unpleasant side effects of medications increase, which for me currently averages 25 hours per week, the most meaningful parts of life can slowly fade away if you’re not diligent. Pain exhausts, depletes and drains you in every capacity – physically, emotionally, spiritually and financially. It feels like my life and spirit are being sucked dry, and I have to fight to remain an active participant in my own life. It is only by God’s grace and the support of my family that I function as well as I do.
Because the very purpose of pain is to warn you that something is wrong with your body, it is impossible to ignore it. I am constantly distracted. No matter how hard I try to focus, my mind is cloudy and my attention is scattered, like living with a veil over my face – blurred and unfocused. Work goes undone. Productivity and efficiency are things of the past. I only selectively engage in activities that I once enjoyed with my husband and daughters because of the increased pain and disability that follow. Life doesn’t stop – it simply goes on in my absence. In social settings, I do my best to pretend that I’m okay, because no matter how wellintentioned others may be, they simply can’t understand. Having previously experienced pain in the vulva for seven years – a part of the body that is not openly discussed in our society – I can testify that the suffering is further compounded by embarrassment, stigma and isolation. While it may be socially acceptable to tell another that you have a headache, women are not comfortable disclosing their inability to sit due to vulvar pain. Chronic pain is an invisible disability. Sadness, isolation, frustration, anger, anxiety, and a host of other unwanted emotions and feelings can dominate you and easily change who you are.
It’s logical to ask, “why not see a different doctor or get better treatment?” The answer was recently summarized by a leading pain physician in the journal Lancet: “Overall, currently available treatments provide modest improvements in pain and minimum improvements in physical and emotional functioning. The quality of evidence is mediocre and has not improved substantially during the last decade.” (Turk DC, et al, Lancet 2011;377:2226-35.) Because of this, doctors don’t have the scientific information they need to make appropriate diagnostic and treatment recommendations. They look at me, shrug their shoulders and really don’t have any idea whether a certain medication or treatment is going to work. As patients, we are left completely disillusioned, forced to navigate the health care system on our own and implement a trial-and-error process to find a treatment(s) to lessen the pain. In the last four years alone, I’ve been to specialists in four different states, have tried fifteen different treatments and still suffer with moderate to severe daily pain. In the last two years, I’ve easily spent over $10,000 in out-ofpocket expenses alone. While I am fortunate to have an understanding employer and good health insurance, many in our country are not.
A growing body of scientific evidence backs my experience and that of millions of pain sufferers, i.e., once you suffer from one chronic pain disorder, you are more likely to develop additional pain conditions in other parts of your body. Additionally, as highlighted in the IOM report, all of what I’ve just described disparately affects women with chronic pain.
This is the reason why the NVA joined forces with the Endometriosis Association, Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America and The TMJ Association, to form the Chronic Pain Research Alliance (CPRA) – the first collaborative scientific advocacy effort in our country dedicated to alleviating the significant human suffering caused by prevalent, neglected and poorly understood pain conditions that frequently co-occur and disproportionately affect women. These disorders include vulvodynia, temporomandibular disorders, chronic fatigue syndrome, endometriosis, fibromyalgia, interstitial cystitis, irritable bowel syndrome and chronic headache.
In 2010, the CPRA launched the Campaign to End Chronic Pain in Women and released the ground-breaking report, Chronic Pain in Women: Neglect, Dismissal and Discrimination: Analysis and Policy Recommendations, which for the first time in history documents the human and financial toll that these conditions impose on women, their families and the US economy. (Please see the attached report and additional patient comments.)
The report’s key findings include:
(1) Women report pain that is more frequent, more severe and of longer duration than men, but are nonetheless treated for pain less aggressively. Women’s pain reports are often taken less seriously by health care professionals than men’s. Medical professionals are more likely to dismiss women’s pain reports as “emotional, psychogenic, hysterical or oversensitive” and therefore “not real,” leading to more frequent mental health diagnoses.
(2) Our failure to effectively deal with these pain disorders adds as much as $80 billion a year in direct and indirect costs to America’s annual health care bill, much of which could be saved through an expanded federal research effort and improvements in diagnosis and treatment.
(3) Despite their impressive personal and economic costs, research funding through the National Institutes of Health (NIH) is severely shortchanged, averaging just $1.36 per affected woman in 2010. This is less than a tenth of one percent of the annual estimated cost of these conditions. Also, what little research that has been conducted has lacked sufficient coordination, interdisciplinary collaboration and direction. As a result, the disorders’ underlying causes are unknown, diagnostic protocols are lacking and there are very few, if any, scientifically proven treatments. Health care professionals are therefore left without adequate knowledge to appropriately diagnose and treat chronic pain sufferers.
(4) The end result is that Americans suffering with these pain conditions are routinely misdiagnosed, shuffled from office to office, inappropriately treated and left without answers or hope, needlessly suffering. It typically takes several months to years, and multiple consultations, to obtain an accurate diagnosis. When a diagnosis is given, evidence-based treatment options are severely limited. Sufferers are forced to experiment with a myriad of therapies, most with unknown risks and benefits, until they find a treatment(s) to relieve some of their painful symptoms.
We applaud Congress, the National Institutes of Health and the Institute of Medicine for their initial steps to address the alarming public health crisis. Going forward, it is essential that:
(1) HHS-funded research on these conditions is significantly increased, and taxpayer investments be made more efficient and effective by placing greater priority on collaborative interdisciplinary research across the conditions, as well as across HHS agencies and NIH Institutes and Offices.
(2) HHS agencies aggressively expand, in a multidisciplinary fashion, the cadre of scientists dedicated to studying chronic pain.
(3) HHS launch an aggressive multi-year awareness campaign, which includes the most current scientific information on the diagnosis, treatment and prevention of these disorders, to educate health care professionals, patients and the American public.
It is only through an expanded, smarter and more cost-effective federal research effort that: i) we will better understand the causes and mechanisms of chronic pain, as well as delineate which treatments are effective and do not harm; ii) the medical community at large will learn how to recognize and adequately manage pain; and iii) medical professionals will have scientifically proven information they need to make appropriate diagnostic and treatment recommendations. Then, and only then, will the haphazard treatment of chronic pain, as well as costly and wasteful health care spending come to an end, giving the millions of American pain sufferers like Madalyn the one thing they desperately want returned to them – their lives.
“My doctors just threw up their hands, not knowing what to do with me. I went to four doctors and each one said something different. I can’t believe I have to go through this, and the expense is unbelievable. I am in so much pain and I just want my life back.” Madalyn (age 19) who suffers from chronic fatigue syndrome, fibromyalgia and TMJ
February 14, 2012