ADVOCACY EFFORTS, BOTH LARGE AND SMALL, ADD UP TO PROGRESS IN IMPROVING PAIN CARE

More than 50 million Americans live with chronic pain. Although chronic pain is commonly defined as pain persisting more than three months, many still do not consider it to be a recognized medical condition, leading to stigmatization and a lack of treatment options for patients.

The Centers for Medicare and Medicaid Services (CMS) is considered a leader in influencing treatment options. Private insurers often choose to cover the same treatment options as CMS. Given Congress has the power to encourage CMS to take action in allowing better coverage and treatment plans for patients, there is a substantial push to better educate policymakers, as well as the public, about chronic pain.

The lack of awareness of the subject of chronic pain can delay patients’ diagnoses, quality of life, access to appropriate and timely care, and health outcomes. Without proper coverage and pain management plans, pain goes untreated, and people suffer needlessly.

Cindy Steinberg, the U.S. Pain Foundation’s National Director of Policy and Advocacy, has led a variety of efforts to raise awareness of chronic pain among health care providers, patients, and policymakers. As someone who lives with chronic pain, Steinberg’s own experiences showed her the desperate need for change.

The complexities of treating neuropathic pain


Patients who live with neuropathic pain and other types of chronic pain typically depend on payer coverage such as Medicare and Medicaid to gain access to treatment. “People can’t afford most treatment modalities themselves,” Steinberg says.

Expanding treatments for complex conditions such as neuropathic pain is a major focus of advocacy. “Neuropathic pain is incredibly difficult to treat,” Steinberg says. “One pressing issue is having new therapeutics.” Steinberg has spoken at U.S. Food and Drug Administration (FDA) meetings to get this message across. She believes there has not been enough focus at the FDA on new therapeutics for chronic pain.

Given the challenges inherent in treating neuropathic pain, devising an individualized treatment plan that lessens pain even moderately can drastically increase quality of life. But treatment for chronic pain can be costly. For instance, a treatment like acupuncture, which many studies have shown can help improve neuropathic pain and other types of chronic pain, can cost upwards of hundreds of dollars a month without insurance coverage. This is one of the many areas in which increased education and advocacy can help lead to better coverage, Steinberg says.

“Pain is overlooked by Congress,” she says. “It is the number-one cause of disability both nationally and globally, yet it gets so little attention.” As part of her advocacy and policy work, Steinberg is looking to collect health data to paint a picture for members of Congress of the prevalence of chronic pain in the United States.

“Doctors don’t know what to do with people with pain,” Steinberg states. “The best way to manage pain at present is to combine different treatments for each person; each individual with pain is unique in terms of what treatments help reduce their pain.”

Advocating for improvements on the state and federal levels


Recognizing that successfully addressing chronic pain is not a one-size-fits-all approach, and that access to a variety of treatment options is vital for those living with pain, was the theme of U.S. Pain Foundation’s recent “Pain Care Needs More Options” Advocacy Day, aimed at getting Congress to put more pressure on CMS to cover a wider variety of treatment options.

Other recent advocacy and policy efforts that U.S. Pain has been involved in on the federal and state level include:

­—Working on, and promoting, the federal Pain Management Best Practices Inter-Agency Task Force Report (PMTF Report) and its framework for a broad range of pain treatment options

­—The SUPPORT Act passed in 2018, with efforts directed at CMS to improve access to a wider range of therapies, including the Dr. Todd Graham Pain Management Study and an Action Plan to address acute and chronic pain

­—Working with Senator Shelley Moore Capito of West Virginia to advocate for the U.S. Department of Health and Human Services to disseminate the PMTF Report to frontline practitioners

­—Advocating for CMS to create a new bundled payment under Medicare for integrated, multimodal chronic pain services

­—The passage of a law in Massachusetts requiring payers to cover a “broad spectrum of pain management services”

­—Efforts to pass a bill in Massachusetts to remove prior authorization on pain-management services added to comply with the above-mentioned law

­—Ongoing efforts in several other states to repeat the success of the law passed in Massachusetts regarding coverage of a broader array of treatments

All voices can play a role


Progress toward improving care in the world of those living with chronic pain is an uphill battle, but no voice is too small.

“Advancements do not happen without advocates pushing for them,” Steinberg says. “It’s a long game, and you need patience and persistence with this work.”

Everyone can play a role—even with small tasks like distributing information and resources such as this magazine to health care provider offices and other places in your community.

“Tens of millions of Americans live with pain,” Steinberg says. “Imagine if everyone living with pain, and the family and friends who care about them, called their federal representatives to talk about the inadequate state of chronic pain care in this country. That adds up to a lot of votes. I firmly believe we would see more rapid advancements in pain care.”

“Pain is overlooked by Congress. It is the number-one cause of disability both nationally and globally, yet it gets so little attention.”