Several provisions that address the ongoing challenge of pain management were enacted this year as part of the federal Patient Protection and Affordable Care Act. Although cancer community leaders applaud this success, they note that more work needs to be done. The enacted provisions, pulled from the National Pain Care Policy Act of 2009 supported by the American Cancer Society (ACS) and other advocacy organizations, include authorization for:

  • The Institute of Medicine (IOM) to convene a conference on pain and establish an agenda to improve pain research, education, and clinical care;

  • Elevating and assisting the ability of the National Institutes of Heath pain consortium to better coordinate pain-related research through existing agencies; and

  • Establishing a Department of Health and Human Services-administered grant program to distribute grants for health professional training programs that improve pain care, including a specific requirement to address barriers to care in underserved populations.

“This is a good first step, but we need another piece of legislation after or while these things are being done:” says Carmen R. Green, MD, associate professor of anesthesiology and health management and policy at the University of Michigan Schools of Medicine and Public Health in Ann Arbor “There are too many people suffering with pain.”

Money is earmarked for the IOM conference, but funds have not yet been appropriated for the other provisions, and it is not known how much money wifi be available. “Budgets are very tight, and there are a lot of competing demands,” Dr Green says. “But if we don't pay attention to pain and its impact on family life and productivity, we do so at our own peril, particularly as society ages and diversifies.”

Key Points

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  2. Key Points
  • The Patient Protection and Affordable Care Act is expected to help improve pain management for patients with cancer.

  • One provision includes an IOM conference on pain research, education, and clinical care.

  • Although the Act's provisions have been enacted, funds for several of them have not yet been appropriated.

  • Pain experts agree that more work is ahead in addressing barriers and disparities in pain assessment and treatment.

The Prevalence of Pain

Of the millions of people living with cancer, many suffer from pain, either from the disease itself or as a result of treatment. Although pain is particularly common among patients with advanced disease, it also can pose a problem for survivors, who may live with chronic pain. As the number of cancer survivors increases, so will the problem of pain, experts agree. That is one reason that the ACS Cancer Action Network (CAN) made pain assessment and management one of the priorities in its quality-of-care platform and why they helped to draft the National Pain Care Policy Act.

“Right now, we have this ‘either/or’ situation where cancer patients expect to be cured, and comfort happens only if they can't be cured,” says Rebecca Kirch, associate director of policy for ACS CAN. “Instead, comfort should be provided from the point of diagnosis.” Although many effective pain medicines and other therapies exist for cancer patients' pain, various studies have indicated that the problem is often undertreated.

In an effort to better understand how pain affects cancer patients, the ACS conducted a pain education project through its National Cancer Information call center Of the 360 patients, caregivers, and survivors who called the hot- line between November 2008 and January 2009:

  • Approximately 65% were experiencing cancer-related pain at the time of their call, with two-thirds of callers rating their pain intensity as moderate or severe.

  • Approximately 76% said that they told their healthcare team about their pain, but two-thirds of those callers still rated their pain intensity as moderate or severe.

  • Only 58% of callers said they were asked about their pain at every clinical visit.

To examine the other side of the equation, ACS CAN surveyed physicians in Georgia and Washington about pain management. Although greater than 90% of respondents routinely ask their patients about pain, less than haif said that they use a scale or standardized tool to assess pain.

Part of the problem, Kirch and others observe, is that medical schools provide very little training in pain assessment and treatment, and physicians are not reimbursed for the time they spend discussing the matter with their patients. At the same time, many patients believe that they need to be stoic and not complain about their pain. Furthermore, there is a stigma associated with opioid analgesics, which, although they are considered an important treatment of moderate to severe cancer pain, have received much media attention for their widespread abuse among other populations.

“Pain assessment is not meaningfully happening,” Kirch concludes. “We want to empower patients and their care- givers to demand quality care, and we want to inform practitioners that we don't consider it to be quality care if pain is not addressed.” Dr. Green would like to see a “robust IOM pain study”—beyond just a conference—that would examine the state of pain research literature and spell out what research is needed in the future. “We have a lot of things in our toolbox, but we can do better,” she says. “Pain research is about 50 years behind:”

As a physician who regularly works with pain management, Paul Glare, MD, chief of the pain and palliative care service at Memorial Sloan-Kettering Cancer Center in New York City, agrees: “The evidence is still pretty limited in terms of the number of randomized controlled studies that, for instance, compare morphine to a placebo, mainly because it's considered unethical to do such studies.”

We want to empower patients and their caregivers to demand qualitycare.—Rebecca Kirch

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Overcoming the Challenge of Pain

Dr. Glare is involved in the first comparative effectiveness research study for pain, which received funding through the American Recovery and Reinvestment Act of 2009. The $1.6 million study will compare the effectiveness of various pharmacological and nonpharmacological therapies for the management of chronic cancer pain and chronic nonmalignant pain that are used in several outpatient clinics. The 3- phase project will establish 2 chronic pain data registries, retrospective and prospective, to identify specific interventions that are most effective for different types of patients.

Nonpharmaceutical interventions for pain can include cognitive and relaxation therapies; acupuncture; and spiritual, psychological, and social support. These options are increasingly considered for patients with cancer who are eager to return to work and want to avoid the “fogginess” that often accompanies pain medications.

Dt Green notes that, just as cancer researchers are developing targeted drugs for patients with specific genetic profiles, so too should the pain research community work toward creating drugs that focus on specific parts of the body that are painful or patients who are at greater risk of developing neuropathic pain. She also would like to see legislation on pain prevention; techniques for measuring the quality of pain care; the creation of public-private partnerships relating to pain; and an action plan for dealing with disparities in pain care among minorities, the elderly, women, and those of lower socioeconomic status.

One provision of the National Pain Care Policy Act that was not enacted as part of the Patient Protection and Affordable Care Act was research into social marketing and messaging to help educate patients and caregivers about the importance of pain care. ACS CAN plans to pursue that provision through other existing infrastructures such as the Centers for Disease Control and Prevention and patient navigation systems. They also are working on drafting new legislation in this area, Kirch notes.