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Written Comments to HHS February 5, 2019

The following comments were submitted by IFFGD President, Ceciel T. Rooker, to the US Department of Health and Human Services (HHS) in regards to Docket No. HHS-OS-2018-0027, “Request for Public Comments on the Pain Management Best Practices Inter-Agency Task Force Draft Report on Pain Managementn Best Practices: Updates, Gaps, Inconsistencies, and Recommendations.”

On behalf of the millions of Americans living with a chronic, and often painful, gastrointestinal (GI) illness, the International Foundation for Gastrointestinal Disorders (IFFGD) thanks the U.S. Department of Health and Human Services (HHS) and the Pain Management Best Practices Inter-Agency Task Force for the opportunity to provide comments regarding the “Draft Report on Pain Management Best Practices: Updates, Gaps, Inconsistencies, and Recommendations.”

Established in 1991, IFFGD is a patient-driven nonprofit organization dedicated to assisting adults and children affected by chronic GI illnesses by providing education and support for patients, family members, health care providers, and the public. IFFGD also works to advance critical research aimed at broadening our understanding of the basic mechanisms and clinical care of these conditions and providing patients with better treatment options, and perhaps one day, cures.

IFFGD has worked closely with HHS to sponsor and support awareness initiatives aimed at informing and educating the American people about key health concerns, and the foundation currently sponsors three awareness events on the HHS National Health Observances (NHO) calendar.

I am writing to you today regarding Docket No. HHS-OS-2018-0027, “Request for Public Comments on the Pain Management Best Practices Inter-Agency Task Force Draft Report on Pain Management Best Practices: Updates, Gaps, Inconsistencies, and Recommendations.” We are pleased to support this effort by the Task Force to identify gaps in and inconsistencies between current best practices in the management of acute and chronic pain and provide recommendations aimed at improving care for the estimated 50 million U.S. adults affected.

Chronic or intermittent abdominal pain is the predominant symptom experienced by many adults and children with a chronic GI condition, such as inflammatory bowel disease (IBD), irritable bowel syndrome (IBS), functional abdominal pain, functional dyspepsia, and abdominal migraine, and is associated with impaired health-related quality of life, increased utilization of health care resources, and the presence of psychiatric comorbidities. Additionally, individuals with pain-predominant GI conditions are more likely to have other pain-related disorders, including migraine headache, fibromyalgia, rheumatologic conditions, and chronic pelvic pain compared with the general population.

At IFFGD, we hear from thousands of people who live daily with pain as a result of a chronic GI illness. As patient advocates, we have long believed that the frequency and severity of symptoms of these conditions, including chronic pain, are often underestimated by the medical and research communities, making it difficult for the treatment needs of this patient population to be adequately evaluated. In response to this anticipated disconnect, we have worked to incorporate the perspectives of patients in research. For example, in 2009 IFFGD published the peer-reviewed article “International Survey of Patients with IBS: Symptom Features and Their Severity, Health Status, Treatments, and Risk Taking to Achieve Clinical Benefit” in the Journal of Clinical Gastroenterology in collaboration with the UNC Center for Functional GI and Motility Disorders. Findings from this web-based, international survey (72% U.S.) of 1,966 adults in the community with irritable bowel syndrome (IBS) revealed that pain is the predominant symptom for adults with IBS, with 78% experiencing continuous or frequently occurring abdominal pain during the last six months. Of those who experience pain, one-fourth described their pain as constant and 30% identified pain as the primary factor that makes their IBS severe. This pain can be disabling, disrupting the lives of those affected and preventing them from fully engaging in daily activities. More than 38% of those surveyed reported that their abdominal pain interferes with their daily activities always or often.

More recently, in 2017 IFFGD sponsored another research survey in collaboration with clinical researchers from Temple University School of Medicine in Digestive Diseases and Sciences entitled “The Burdens, Concerns, and Quality of Life of Patients with Gastroparesis.” Like our 2009 survey of the IBS community, this web-based survey of 1,423 adults with gastroparesis was intended to illustrate the impact of the condition on patients from the patient’s viewpoint to help us better understand how those affected suffer and help identify treatment priorities. They also bore startling similarities in findings. Like the those with IBS, pain was identified as one of the most troubling symptoms for individuals with gastroparesis, with nearly half of respondents (46%) reporting stomach pain as the most troubling symptom when gastroparesis symptoms became severe and 20% identifying stomach pain as the symptom most important to improve with treatment.

These findings underscore the value of this effort by the Task Force to identify areas of improvement in the understanding and management of acute, and especially, chronic pain and propose updates and recommendations to advance the treatment and care of those affected.

We applaud the Task Force for considering the complexity of both the experience and treatment of pain and for addressing critical issues from the patient’s perspective, including the role of stigma associated with chronic pain and/or the use of opioid therapy as a detriment to patient dignity and a barrier to effective treatment; the unique needs of special populations; the role of health disparities in impeding patient access; and the importance of a balanced approach to the management of pain that takes into account issues of access, the multidemensionality and complexity of chronic pain, the need for risk-benefit assessments in determining course of treatment, and individual health goals.

Many chronic pain patients currently taking opioid medications at doses closely monitored by a physician are concerned that new regulations restricting the prescription and coverage of opioids will cause their pain management to regress and undermine their shared decision making with their medical providers. While we recognize the need to promote nonopioid medications and/or nonpharmacologic treatments as first-line therapy early in pain treatment, we ask the Task Force to consider the needs of patients already on opioid medications and those considering opioid therapy in accordance with the recommendations of their physician and/or pain management team. Aligned with this ask, we support the Task Force’s recommendation that opioid therapy “should be determined by treating clinicians according to the individual patient’s need and pain condition,” making decisions about opioid therapy patient centered.

Lastly, we applaud the Task Force for its recognition of the continued need for improved pain awareness and education for patients, family members and caregivers, providers, and the public and fully support its recommendation to “Convene a chronic pain expert panel that includes experienced patients, patient advocates, and clinicians to develop a set of core competencies and other essential information specific to patient pain education. Provide grants for the creation of patient education programs and materials based on these core competencies and disseminate them widely to patients and their families and caregivers through clinics, hospitals, pain centers, and patient groups.”

We believe that understanding the questions and concerns patients have about their pain from the patient’s perspective will provide greater clarity for future awareness and education initiatives from HHS and other federal agencies concerned with promoting the health of the American people. Patients are taking an increasingly active role in their health care decisions and should be included in any efforts to develop information regarding patient pain education. Additionally, we believe patient groups like IFFGD can help to bring together and coalesce the voices and perspectives of patients and contribute to solutions that address their needs.

We thank you for the consideration of our comments and welcome the opportunity to work in conjunction with the Task Force and HHS to obtain input from patients and caregivers on how patients with pain-predominant chronic GI illnesses experience pain and help identify their unmet education and treatment needs.

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