Reprinted with the kind permission of the PAINS Project
PAINS’ Advisory Committee members were asked:
“If you could give people living with pain something special during this holiday season, what would it be?”
To be heard
“To be heard in their pain and trauma, physical and otherwise, by their team of healthcare providers who, in their listening, will then be their partners in developing a safe, effective, individualized care plan.
To be heard in their frustrations with our healthcare “system” by people in charge of policy, whether legislators, insurers, or voters.
To be heard by their friends, family, and community–and then accepted and loved, rather than shunned and ignored. And to hear themselves–to hear and trust their own best internal voices about the brightness of their future, the value of self-care, and the strength and power they carry within themselves.”
Community Health Centers of Lane County
“I would give them health insurance coverage for a wide array of services / disciplines that treat chronic pain.”
Western Pain Society
Better Quality of Life
“On the one hand, I would give them easy access to readily available and affordable comprehensive care that is safe, timely and effective, evidence-informed and personalized, and without adverse effects or stigma.
Bottom line–I would give them better quality of life.”
Professor, Department of Pain Medicine
Division of Anesthesiology and Critical Care
University of Texas, MD Anderson Cancer Center
Ability to Hold My Head High
“I’ve spent most of the day contemplating what I’d want from anyone with the power to grant even just one thing to me during this time of faith, family and friendship. I used to hold my head up high, quietly proud of the life I had lived, the service I had given, the family I had built and the love I had shared. CRPS has NOT robbed me of these things individually. Yet each day I face this disease, I find it exponentially harder to hold my head high in public. To the world, I am marginalized because I live in pain, because I don’t/can’t follow social norms, because I don’t work, because I am disabled. I’d give myself back that ability to hold my head high and to face the world with all the confidence I once had. Simply that. I can’t imagine I am alone in this wish.”
Retired IBM Distinguished Engineer
Access to a Health Care Provider
“If I could give people living with pain something special during this holiday season, it would be access to a pain management health care provider who had a wide range of available strategies to offer patients to manage pain and who did not feel apprehensive to do so.”
Clinical Associate Professor
Stony Brook University, School of Nursing
Integrated Chronic Pain Treatment
“I would give people living in chronic pain insurance coverage for integrated chronic pain treatment that would include coverage for a navigator/coach to help chronic pain sufferers find complementary and alternative treatment regimens to augment their current pain management efforts. This coverage would also reimburse patients for such complementary and alternative treatments.
My second gift would be a new non-opioid/non-addictive pain medication that is more effective than opioid drugs for chronic pain patients for whom pain medications is the only effective way to manage their pain.
My third (and most realistic gift) would be to give them Cindy Leyland’s contact information, tell them about PAINS-KC and the date and time for our meetings, and encourage them to get involved.”
Attorney at Law
“My wish for every person living with chronic pain is that they have HOPE for the future knowing people like Myra Christopher, Richard Payne and the folks on the advisory committee wake up each morning with one goal: to make their lives better.”
Founder, Global Prairie
Effective Pain Medication
“If there was one thing I could give to a person living with pain this holiday season, it would be effective pain medication without intolerable side effects or the potential for addiction. That is, of course, given that we don’t have a “cure” for neuropathy or other forms of persistent pain…which would be a godsend.”
Professor and Chair, Department of Geriatrics
Director, Comprehensive Care @ PCOM
Philadelphia College of Osteopathic Medicine
A Personal Advocate
“A personal advocate who can negotiate with your insurance company or city/state Medicaid office when you are denied clinical services (PT sessions, psychological intervention benefits, medications, specialty services), write insurance appeal letters for you, and keep at the insurance company until you get the needed services or medications…and when needed take you to and from clinical care appointments (doctors, psychotherapists, physical therapists, etc.).”
Director, Pediatric Pain and Palliative Care Program
Division of Pediatric Hematology-Oncology,
Distinguished Professor of Pediatrics, Anesthesiology,
Psychiatry and Behavioral Sciences,
David Geffen School of Medicine at UCLA
An Advocate in Congress
“If I could give people living with pain something special during this holiday season, it would be an advocate in Congress who really understood chronic pain and the distinction between the opioid epidemic and efforts to improve chronic pain care.”
PAINS Medical Director and John B. Francis Chair
Center for Practical Bioethics
Esther Colliflower Professor of Medicine and Divinity
The PAINS Project is a program of the Center for Practical Bioethics dedicated to transforming the way pain is perceived, judged and treated as called for in the IOM Report, Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research.