Be the Best You

By Barby Ingle, Columnist

Recently Melania Trump unveiled her "Be Best” campaign, which focuses on the well-being of children, their use of social media, and preventing opioid abuse and bullying. The First Lady wants to promote healthy living, kindness and respect so that children are better prepared physically and emotionally to face the challenges of tomorrow.

“It remains our generation’s moral imperative to take responsibility and help our children manage the many issues they are facing today, including encouraging positive social, emotional, and physical habits,” she said.

Those are admirable goals. But I strongly believe that we need to make tomorrow the best it can be for everyone – including the pain community. The same challenges the First Lady sees for children are faced by everyone who is living in pain, disabled or is a caregiver for someone in pain.

Since 2012, I have been losing too many friends to suicide who are not being adequately treated or who don’t have access to proper and timely care. Instead of society stepping up and helping, I have seen the bullies (in our community and in the general public) berate and beat down people in pain who want to live, thrive and succeed despite the challenges they face. Pain patients are committing or attempting suicide at an alarming rate.

We can make a difference if we use our voices to encourage positive social, emotional and physical well-being. By living with purpose and exuding positive attitudes, pain patients will be better equipped to deal with the physical and emotional challenges we face.

In recent years, I have been happy to see many pain patients and caregivers use their voices to speak out and work to create the change we need. We have begun to see our stories and efforts get some attention in the local and national media.

Although we are just scratching the surface, we are making change happen. We have to continue creating that change with hope, resilience and strength more than ever.

I get many calls and emails from patients who have been poorly treated in their search for pain care, threatened on social media, and criticized for trying to show the plight of pain sufferers and their lack of access to effective treatment.

I have seen firsthand how this lack of compassion has affected both pain patients and addicts, who together make up more than a third of our society. Some addicts are stepping up and saying what is happening to pain patients because of sweeping measures to prevent opioid abuse is not right, compassionate or ethical. 

I hope that the efforts of both the pain and addiction communities will show the administration and Congress that we need to work on both the pain epidemic and the lack of access to proper and timely pain care.  I hope you will join in these efforts in your own way. It shouldn’t matter where we live, how rich or poor we are, or what our health is like. We should have less stigma and more compassion for the suffering. 

Ordinary people can do extraordinary things. Let’s make it our mission to have our own “Be Best” campaign. This doesn’t mean being perfect or making change in one day. It means recognizing areas where change is needed and coming up with solutions. A place to start is understanding and sharing core beliefs that we can agree on. There are four beliefs as a pain patient that I subscribe to:

1. Chronic pain is a real and complex disease that may exist by itself or be linked with other medical conditions. 
2. Effective pain care requires access to a range of treatment options, many of which are currently being denied. 
3. Chronic pain is an unrecognized public health crisis with devastating personal and economic impact.
4. Allowing people to suffer with unmanaged pain is immoral and unethical. 

These goals were agreed on two years ago by over 70 healthcare and advocacy organizations in a letter to Congress urging it to implement the National Pain Strategy. Isn’t it time we started acting on that?

I believe that we can agree on actionable solutions that promote better well-being for all. I look forward to hearing your thoughts on tools and skills that will improve the social, emotional and physical health of pain patients. We need more than pain organizations to make these changes. We need patients, families, caregivers, providers and the public to help us solve the challenges we face as a pain community.

We have a purpose to be your best you. What is it that you can do to be your best?  

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Feds Quietly Release National Pain Strategy

By Pat Anson, Editor

The U.S. Department of Health and Human Services (HHS) on Friday quietly released the National Pain Strategy, a comprehensive and ambitious “roadmap” to improve the quality of pain care in the United States. The 83-page report was overshadowed by the opioid prescribing guidelines released by the Centers for Disease Control and Prevention just a few days earlier.

Development of the National Pain Strategy (NPS) began over five years ago after the Institute of Medicine released a report calling for a “cultural transformation” in pain care, prevention, research, and education. Although the NPS was being closely watched by researchers, academics, regulators and professional societies, many long-suffering pain patients will be surprised to hear the U.S. even has a national pain strategy.

The Department of Health and Human Services (HHS) did little to publicize the NPS, issuing a single news release that wasn’t even posted on its own website 24 hours later.  There was no press briefing for reporters to explain why the NPS was developed or what its objectives are.

The announcement wasn't even made by HHS Secretary Sylvia Mathews Burwell, but by a lower ranking aide.

“Chronic pain is a significant public health problem, affecting millions of Americans and incurring significant economic costs to our society,”  Karen DeSalvo, MD, acting assistant secretary for health at HHS, said in the news release. “This report identifies the key steps we can take to improve how we prevent, assess and treat pain in this country.”

The major goals of the NPS are:

• Develop new methods to prevent and manage pain.
• Improve pain education of physicians
• Develop “integrated, interdisciplinary, patient-centered” pain management teams
• Provide better insurance coverage of pain treatment options
• Reduce barriers to pain care, especially for stigmatized and underserved populations.
• Increase public awareness and patient knowledge of treatment options and risks

The 800-pound gorilla of pain management – opioid pain medicine – is only briefly mentioned in the NPS, and not in a positive way.

“Evidence suggests that wide variations in clinical practices, inadequate tailoring of pain therapies to individuals, and reliance on relatively ineffective and potentially high risk treatments such as inappropriate prescribing of opioid analgesics, or certain surgical interventions, not only contribute to poor quality care for people with pain, but also increase health care costs,” the report says.

“Treatments that are ineffective, whose risks exceed their benefits, or that may cause harm for certain subgroups need to be identified and their use curtailed or discontinued.”

“We need to ensure that people with pain get appropriate care and that means defining how we can best manage pain care in this country,” said Linda Porter, PhD, director of the National Institute of Health’s Office of Pain Policy and co-chair of an interagency committee that helped develop the report.

“To achieve the goals in this report, we will need everyone working together to create the cultural transformation in pain prevention, care and education that is desperately needed by the American public,” said Sean Mackey, MD, who heads the Division of Pain Medicine at Stanford University and is co-chair of the interagency committee.

Still unclear is how the NPS will ever be implemented, since it relies on major policy changes and coordinated action involving medical schools, healthcare providers, insurers, government agencies, Congress and the White House. No estimate is provided on how much it will cost or where funding will come from.

“The NPS is riddled with vague terms and objectives -- which render the whole effort too subject to interpretation,” says David Becker, a patient advocate and author of “Quotes on Pain.” “I find it fascinating that despite the outcry from individuals regarding very specific concerns and problems, they are intent on imposing population based public health solutions on individuals. They can’t see the trees for the forest. And their plan is to help some nameless faceless pain sufferers with a very homogenized approach.

“The whole report reminds me of a Seinfeld episode when he says his show is all about nothing. The NPS is about some vague objectives -- even though the underlying philosophy, politics, privileges -- are only too clear. I guess those privileged pain specialists just don’t wish to be pinned down too much about what their pig in the poke is all about.”

The NPS was quickly endorsed by the American Pain Society (APS), a professional group that focuses on pain research.

“The National Pain Strategy gives the nation a blueprint for aggressive action to expand access to effective pain care,” said APS President Gregory Terman, MD. “Pain is a serious and often neglected public health problem that is draining our health care resources. It is responsible for inestimable lost wages, impaired worker productivity, and extracts a tragic personal toll on patients and their families.”  

Terman and several other APS members were involved in drafting the National Pain Strategy, as well as the CDC’s opioid prescribing guidelines.

“We believe several high impact policy initiatives will emerge from implementation of the National Pain Strategy, especially in helping primary-care physicians, who see that vast majority of pain patients, become more knowledgeable about pain mechanisms, pain assessment, and safe use of analgesic medications,” Terman said.

'Robust Response' to National Pain Strategy

By Pat Anson, Editor

Public reaction to the National Pain Strategy has been “very robust” according to the co-chair of the government committee that released a draft version of the report in early April.

Today marks the deadline for public comments on the 72-page report, a long awaited study that calls chronic pain a threat to public health, and identifies several areas where physicians and the healthcare system are failing pain sufferers.

“I think it’s safe to say that there was a very robust response,” said Linda Porter, PhD, co-chair of the National Institutes of Health’s Interagency Pain Research Coordinating Committee (IPRCC).

“I feel  like we really got the word out widely and the comments are coming in from a very broad range of the community, ranging from the professional societies, individual patients, coalitions of patients that have come together, and patient advocacy. So yes, I’m comfortable with it. We’ve gotten a good range of comments from a really broad set of folks.”

Some pain patients and advocates have complained that the IPRCC was dominated by academic researchers, physicians and government bureaucrats – and not enough input was sought from pain sufferers during the drafting of the National Pain Strategy (NPS).

“The NPS is essentially an underpowered, unrealistic, and undemocratic occupational strategy of some pain experts and professionalized lay experts, who were chosen because of their ideology and rank in certain organizations and government,” wrote patient advocate David Becker in his public comment on the NPS.

“There is no evidence that a survey or needs assessment of what Americans want from pain care was done or considered by the NPS and the NPS fails to make a case for their ‘evidence based, high quality, interdisciplinary, integrated multimodal biopsychosocial model’ as being what people in pain actually want out of pain care -- and especially those Americans in pain who will be forced to live with a plan they had no say in developing.”

Porter said she could not release the number of comments that have come in during the public comment period, but she was satisfied patients had a voice in drafting the National Pain Strategy.

“We felt very strongly that their voice had to be heard,” Porter told Pain News Network. “We had patients and patient advocates on every single one of the work groups, on the oversight panel, and on the IPRCC. There was actually a large group of patient advocates and we made sure that each of the working groups had at least a voice on it and some of them had several.”

A list of members on the IPRCC’s oversight committee can be found here. Two of the panel’s 14 members are pain sufferers and/or patient advocates. The rest are longtime experts in the field of pain management, including several who helped write the 2011 Institute of Medicine report, “Relieving Pain in America,” which estimated that 100 million Americans suffer from chronic pain.

Implementing the Plan

One member of the oversight committee said he found it “really exciting in terms of changing the culture of pain,” but admitted there were “minor things” about the NPS that bothered him.

“There is nothing in it about pediatric pain. There’s not as much emphasis on research as we would always like, particularly basic science is left out of it,” said Greg Terman, MD, an anesthesiologist and professor at the University of Washington who is president of the American Pain Society.

“The general problem that I had as a member of the oversight committee is how are we going to implement any of the recommendations? And the answer is I don’t think anyone knows yet, it’s not even final. But I am optimistic.”

The NPS calls for significant improvement in pain management practices, including better education in pain care for physicians, more collaboration between primary care physicians and pain specialists, broader insurance coverage of pain treatments, and more research. But nowhere in the report is the cost for any of the recommendations even discussed.

“That was not our responsibility nor did we have the ability to estimate what these would cost,” says Linda Porter. “It was really out of our scope and we were not asked to do that. It will certainly come up in the planning stage.”

Porter said cost estimates will be handled by the federal Department of Health and Human Services, which is still in the “discussion and planning stage” of deciding which recommendations to implement first. She expects a plan to be announced in late summer or early fall of this year.

“Things move slowly in government I hear,” says Terman. “It’s there, at least in writing, what needs to be done from our expert opinion. Having it gathered all in one area has never been done before and maybe if we can’t make it happen in the next year, maybe in a few more years. If it’s still sitting there waiting to be implemented, sadly there will still be patients waiting to be helped.”

National Pain Strategy: A Rough Beast?

(Editor’s Note: Earlier this month, The National Institutes of Health (NIH) released a draft copy of its National Pain Strategy, a long awaited report designed to advance pain research and healthcare in the U.S. The report identifies several areas where the healthcare system is failing pain sufferers and how it can be improved

A coalition of 17 chronic pain organizations called the Consumer Pain Advocacy Task Force was quick to endorse the National Pain Strategy, and is now lobbying the NIH to create an oversight body to implement the plan and provide funding for it

David Becker is a social worker, patient advocate and political activist who believes the needs and concerns of pain sufferers are not adequately addressed by the National Pain Strategy.)

By David Becker

The Consumer Pain Advocacy Task Force started promoting the National Pain Strategy (NPS) less than a week after it was made public. Obviously they didn't wait to hear from their members or people in pain -- as they are intent on seeing that rough beast of a plan be born no matter what people in pain think or want. The NPS is not "urgently needed" as they claim.

The NPS did not put a price tag on any of its plans or estimate how much their plan might save in costs; or how much the prevalence of painful conditions might be lowered or how much incidents of healthcare disparities might be reduced.

It is clear the government didn't want to include clear performance measures in the NPS. They do not wish to be held accountable to Americans or people in pain if the plan doesn’t work.

I do not support this thinly veiled occupational strategy that serves special interest groups without regard to the public good. Like a box of chocolates -- you don't know what you’re getting with this plan. 

DAVID BECKER

It is a big lie to say that the biopsychosocial model or interdisciplinary care meets the evidence based pyramid standards. Not enough research on their paradigm has ever been done and what little there is does not provide strong evidence for their paradigm over treatment as usual.

This plan has failed to learn from the mistakes of the past. A decade of pain control and research was a failure. It based its efforts on the “experts” -- as does the NPS. The more things change in pain care the more they remain the same. And people in pain remain condemned to the failed strategies of the past. The NPS, essentially, is nothing new.

It is clear that the 80 people who created the NPS don't have "the right stuff.” They have left too much to the imagination with their plan and leave out any plan for multi-morbidity or for treatment burden, and don't allow for an ongoing dialogue with people in pain.

To paraphrase Immanuel Kant, “We can think what we want, as long as we obey.”

The NPS was not a conversation with people in pain. It is a top down reductionist strategy by special interest groups to maintain their power and prestige. It will do very little for people in pain or address the ever rising economic burden of poor pain care.

As Helen Keller wrote, it is a terrible thing to see with no vision. The NPS fails to see much of the problems in pain care, failed to listen to the dried voices of people in pain, and offers no inspiring vision to address the many problems in pain care. The NPS is one rough beast that slouches toward Bethlehem and should never be born.

It is tragic that America can’t get it right when it comes to pain care. The politicos are anti-democratic and too ignorant of the real problems to create a sophisticated model or plan for dealing with pain.

My official comments to the NPS will excoriate their claims to expertise and their claims that they care about pain in America. But no article or comments will stop this rough beast from being born – too many organizations have been working hard to make it a reality.

What do you think? You can read the National Pain Strategy for yourself, by clicking here.

The NIH is accepting comments on the NPS until May 20, 2015.

Written comments can be emailed to NPSPublicComments@NIH.gov. They can also be addressed by snail mail to Linda Porter, NINDS/NIH, 31 Center Drive, Room 8A31, Bethesda, MD 20892.

'National Pain Strategy' Report Released

By Pat Anson, Editor

The National Institutes of Health has quietly released a draft copy of its National Pain Strategy, a long awaited report designed to advance pain research, healthcare and education in the U.S.

The report calls chronic pain a “complex disease and a threat to public health” and identifies several areas where physicians and the healthcare system are failing pain sufferers.

“Access to high-quality integrated care based on clinical evidence is hindered by many challenges, including a payment system that does not support optimal care. Pain management often is limited to pharmacological treatment offered by a single primary care practitioner or to procedure-oriented and incentivized specialty care that is not coordinated and not aligned with the best available evidence or expected outcomes,” the report says.

“Even when interdisciplinary care is provided, creating and executing a care plan is often fragmented, with poor communication among clinicians and without consideration of patient preferences. The clinician or team’s choice of therapy may be based on practice experience or on insurance coverage, rather than one informed by a comprehensive pain assessment, clinical evidence or best practices.”

The report only briefly addresses the controversy over the abuse and diversion of opioid painkillers, and how some pain sufferers are being denied pain medication by their doctors and pharmacists.

“The reluctance of many clinicians to prescribe these medications, and patients’ concerns over stigmatization associated with opioids may jeopardize quality pain control in the population. Only a small percentage of practitioners and patients account for the majority of opioid-related risk through abuse of prescribing privileges and inappropriate management of prescriptions,” the report said.

Other key findings of the report:

• People with pain are too often stigmatized in the health care system and in society, which can lead to delayed diagnosis, misdiagnosis, and bias in treatment.
• Significant barriers to pain care exist, especially for populations disproportionately affected by pain.
• Although pain is widespread in the population, research is lacking on the prevalence, impact, and outcomes of most common chronic pain conditions.
• Significant improvements are needed in pain management practices.
• Primary care doctors are not sufficiently trained in pain assessment and treatment.  
• Greater collaboration is needed between primary care doctors and pain specialists.

“I agree that collaboration between primary and pain specialists is helpful in some cases, though I do not believe it is mandatory,” said Celeste Cooper, a retired nurse and patient advocate who reviewed the report.

“To think that a primary physician cannot complete continuing education courses for management of mild to moderate chronic pain is ridiculous. Primary physicians are on the front lines. They will be held accountable for prevention strategies, but they aren’t able to make assessments for treating pain? This seems like tying their hands behind their backs.’

The National Pain Strategy is an outgrowth of the 2011 Institute of Medicine report, “Relieving Pain in America,” which found that 100 million Americans suffer from chronic pain.

One critic of the new report says it lacks vision and will not make pain care better.

 “I think the report reflects that it has been developed by (and for) special interest groups who are not very skilled at planning or project management. This report is ungainly and lacks a real focus -- and so I think people in pain will be wondering what exactly they can expect to be different and better for them,” said patient advocate David Becker in an email to Pain News Network.

“I think it is unethical for special interest groups to assume that any and every individual in pain cannot be cured and should not receive stem cell therapy or other curative/regenerative care. In this regard, it reinforces the received view -- and a self- serving view -- that people in pain should be treated indefinitely by medical care."

While not perfect, Cooper said she was encouraged by the report's recommendations.

"Looking at chronic pain as a public health issue is the right approach in my opinion. It will avail resources that wouldn’t otherwise be accessible. The report is comprehensive, there will be roadblocks in implementing all the suggestions, but hopefully generations to come will benefit. As an educator, I was impressed on seeing short-term to long-term goals. This strategy provides a mechanism for reassessment and revision," Cooper said in an email.

The Interagency Pain Research Coordinating Committee is accepting public comments on the National Pain Strategy until May 20, 2015.

Comments can be emailed to NPSPublicComments@NIH.gov.