October 16, 2019/ U.S. Pain Foundation/ 0 Comments

October 11, 2019

Centers for Medicare & Medicaid Services (CMS)

Comments on the Request for Information (RFI) on the Development of a CMS Action Plan to Prevent Opioid Addiction and Enhance Access to Medication-Assisted Treatment

The U.S. Pain Foundation is pleased to respond to CMS’s request for information to inform the development of a CMS Action plan to prevent opioid addiction and improve the treatment of acute and chronic pain. The U.S. Pain Foundation is the largest 501 (c) (3) organization for people who live with chronic pain from a myriad of diseases, conditions and serious injuries. Our mission is to connect, support, educate and advocate for those living with chronic pain, as well as their caregivers and healthcare providers.

Chronic pain is an enormous public health problem. The CDC and NIH have reported that 50 million Americans live with chronic pain and 19.6 million live with high-impact chronic pain that interferes with their ability to

1

There are currently very few highly effective treatments for many pain conditions. Managing pain is a matter of finding the right combination of treatments that allows pain sufferers to function and have some quality of life. We believe people with chronic pain should have access to a wide range of therapies and treatments because pain is very individual – what helps one person living with pain will not necessarily help another.
Most people living with chronic pain spend years of trial and error searching for treatments that will help to reduce their pain, while struggling to manage their lives. This is extremely wasteful from a personal standpoint as well as an economic one.

We believe that when it comes to chronic pain, CMS’s goal should be to get beneficiaries effective treatment sooner. Our recommendations for accomplishing this are as follows:

1. Compensate physicians for time spent coordinating complex care

Chronic pain patients require more time from their health care providers, because by its very nature, chronic pain is complex and challenging to treat. Doctors should be able to spend more time conducting a thorough pain assessment and developing a treatment plan at the first visit rather than

1 CDC. Prevalence of Chronic Pain and High Impact Chronic Pain Among Adult – U.S., 2016. MMWR Rep 2018;67:1001-6.

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function on a daily basis.
with chronic pain and 5.4 million live with high-impact chronic pain. The Medicare population also includes disabled Americans younger than 65. Since pain is the number one cause of disability in the U.S., we can therefore assume that the number of Medicare beneficiaries living with pain is much higher than those reported numbers. Because many Americans living with high-impact chronic pain are unable to work or can only work part-time, many also depend on Medicaid.

That same study reported that of Americans over the age of 65, 13.5 million live

the fifth visit to the fifth doctor which is the current norm. Furthermore, because the cause, manifestations, and severity of chronic pain can vary so widely from person to person, there is no simple or uniform solution to managing it. Each patient is entirely unique and requires a unique treatment plan.

Individualized, multimodal, integrative care is widely understood to be the best and most effective approach to managing pain. But it requires time and resources to identify and try various modalities and coordinate this care. A traditional 10-minute appointment does not provide sufficient time for a provider to create and implement a multimodal treatment plan, and to continually reassess that plan as the individual’s health and pain change over time.

The lack of reimbursement for coordinating care and managing complex care is perhaps one of the most significant impediments to proper pain care. It has resulted in an overuse of quick fixes—like a reliance on medication alone.

2. Reimburse for multimodal, multidisciplinary treatmentRehabilitation models of care, which emphasize integrated, multi-modal treatment, have been proven to be the most effective in reducing pain and improving function. Too often, pain management attempts to put a mere band-aid on pain levels, rather than address pain’s effects on function and quality of life. Chronic pain is a biopsychosocial disease, meaning it affects every aspect of an individual’s life, even more so when the individual lives with high-impact chronic pain. Thus, patients need and deserve care that addresses pain at multiple levels. For example, while medication and injections may help control pain, they do not give individuals tools for learning to live within their limitations. Restorative and complementary therapies, like physical therapy, occupational therapy, massage, yoga, and so on, are more suited to improving function and productivity and learning to live day-to-day with painful symptoms. Meanwhile, it is well-known that anxiety, depression, and other mental health conditions are common comorbidities of long-term pain. In fact, recent numbers from the CDC demonstrated that at least 10 percent of suicides in America involve someone living with pain. This vulnerable population needs earlier multimodal intervention that recognizes the full impact of pain on a person’s life. Patients with pain—especially those with high-impact pain—should have access to psychosocial care, including psychological counseling and peer support groups that is tailored to their unique challenges.Unfortunately, we have moved away from a bundled payment approach to this type of care, to the detriment of people with pain. It’s vital we return to reimbursing for multimodal, multidisciplinary treatment..
3. Incentivize innovative value-based models of care that integrate multimodal treatmentThe cardiac care model, which incorporates exercise, nutrition and other modalities, is one innovative

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approach that has been very successful and cost-effective at reducing the burden of heart disease. This is a model that takes into account that heart disease must be attacked from multiple angles, and that treatments and therapies work best in combination with one another.

This model also has proven that multidisciplinary, multimodal care can be cost-effective care. By investing health care dollars up front in managing heart disease and preventing cardiac events, we have saved millions of dollars in terms of reducing hospitalizations and emergency room visits. Beyond saving on direct healthcare costs, no price tag can account for the enormous reduction in suffering and lives lost.

Chronic pain is just as complex as heart disease. It similarly gets worse—and more expensive to treat– without comprehensive, multimodal early intervention. CMS should encourage and reimburse innovative integrated models of care for chronic pain.

4. Remove access barriers to evidence-based non-opioid drugs and medical devicesCMS should require that at least two medications in each class of non-opioid medications commonly used for pain—such as antidepressants (SSRIs, SNRIs, or tricyclics), anticonvulsants, corticosteroids, NSAIDs, muscle relaxers, triptans, calcium channel blockers, topicals and so on)—are in the lowest-cost tier in every Part D plan formulary.It is vital to recognize that, again, each individual is unique, and what works for one person may not work for another. Patients must have access to various options to determine what reduces their pain levels. Unfortunately, many patients cannot afford the high copays on these medications, creating enormous and unnecessary barriers to safer, non-opioid medications. If CMS is committed to reducing opioid use, it must make alternative medications more affordable.In addition, an increasing number of evidence-based medical devices for pain management are available, with more coming to market each year. These devices represent an important category of treatment, especially in that they often provide sustained relief and generally come with less side effects than many other interventions. CMS must work to improve access to these types of devices by reducing out-of-pocket costs and removing overburdensome prior authorization requirements. In particular, CMS should remove the requirement for a psychological evaluation prior to obtaining spinal cord stimulation devices. There is no such requirement for surgery, which is much riskier, or for other treatments for pain.
5. Partner with NIH/NCCIH to continue to build the evidence base for complimentary treatments like acupuncture for chronic low back pain (ie. therapeutic massage, yoga, tai chi, aquatherapy)
   This is an area where data collection is essential to determining the value of these modalities for pain control. There is much anecdotal evidence that many complimentary techniques, especially gentle

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exercise and mobility programs, are helpful in the ongoing management of chronic pain. These interventions can also be cost-effective, especially those that train patients on a program they can then practice at home. Exercise and mobility programs also do a lot to restore function, in addition to general pain reduction. But there is a lack of funding to do the randomized control trials that are necessary to prove their value. If we are truly committed to reducing opioid use, we must investigate and make available evidence-based alternatives for pain relief.

6. Reimburse for promising treatments in specific conditions as evidence becomes available.The approach that CMS is using for chronic low back pain and acupuncture is an excellent model. In this instance, CMS is focusing on a narrow pain condition with one modality and a large subject population. This approach correctly recognizes that different modalities work differently for different types of pain—and must be studied accordingly. In particular, we commend CMS for covering treatment costs as part of this study. This reflects an understanding that cost is an enormous barrier to care, especially for the Medicare and Medicaid populations, who typically have limited ability to work. We would recommend using this approach simultaneously for other specific conditions.
7. Encourage states to make more complementary and integrative care available through MedicaidA number of states have granted Medicaid waivers to cover complementary treatment for specific pain conditions and then studied the effect of these modalities on patients’ pain levels and function. One such example we are aware of is a waiver in Colorado to cover complementary treatments for spinal cord injury. We urge CMS to support more states in offering this type of Medicaid coverage.
8. Incentivize participation in pain management group programs, similar to Medicare Silver Sneaker Program for fitness club membership & Medicare’s Diabetes Prevention Program
   These programs have proven track records of helping patients more effectively cope with and manage chronic illness. Educating patients about ways to engage in self-management of their condition, and then incentivizing such self-care, could have a similarly positive impact on the pain population. If patients were reimbursed for the cost of membership in these programs, it would help them maintain wellness and function.
9. Reimburse for participation in chronic pain-specific patient education self-management and support group programs
   Similar to above, patient education on self-management and coping skills are key to living successfully with a chronic condition. These programs can be taught via support group models and provide essential information on topics such as: cognitive behavioral therapy; stress reduction techniques, like meditation; strategies for activity restriction and modification; and much more.Isolation, stigma, and a sense of helplessness are enormous problems faced by the pain population,and create significant barriers to care. As mentioned before, people with chronic pain have

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significantly higher incidences of mental health comorbidities, and are at greater risk of suicide.
It is well-known that mood disorders and stress can increase pain levels, and vice versa, creating a vicious cycle. CMS has a vested interest in providing more comprehensive care, that treats the whole patient—mind and body. Creating opportunities for connection, community, and education is vitally important.

10. Begin a serious effort to code for, collect, and analyze data on chronic pain in the Medicare and Medicaid population

CMS does not collect nor analyze epidemiologic data on chronic pain in its beneficiaries. We do not know the incidence of chronic pain in general, the prevalence of various pain conditions, trends over time, subpopulations at risk, nor the health consequences of pain in terms of morbidity, mortality and disability. It is critical to have this data to understand the scope of the problem. It is also vital in order to assess whether the improvements in care and interventions CMS undertakes in the Action Plan are effective in reducing the enormous burden of chronic pain.

In Section 6032 of the SUPPORT Act, Congress has called on CMS to use its authority to improve access to care for the millions of Americans whose lives have been devastated by the dual public health crises of opioid use disorder and pain. We are hopeful that CMS will give serious consideration to the recommendations we and others, such as the HHS Pain Management Best Practices Task Force have proposed. Now is the time for CMS to take bold and innovative action to ameliorate the enormous burden of chronic pain in America.

Sincerely,

Cindy Steinberg
National Director of Policy & Advocacy U.S. Pain Foundation
781-652-0146 cindy@uspainfoundation.org

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October 31, 2019/ U.S. Pain Foundation/ 0 Comments

Interim CEO Nicole Hemmenway was one of three keynote speakers at the closing session of the American Massage Therapy Association (AMTA) national convention last weekend in Indianapolis, IN.

In her talk, “Massage for Chronic Pain: What our community wants you to know,” Hemmenway shared her personal journey with complex regional pain syndrome and why she’s dedicated herself to helping others with pain through the U.S. Pain Foundation. She gave attendees a glimpse into the programs and services U.S. Pain offers, and provided insight into the scope of the chronic pain health crisis in America.

The emphasis of Hemmenway’s remarks was on the barriers to multidisciplinary care, particularly massage, and how massage therapists can best help people with pain.

“It truly was a privilege to be invited by the AMTA to speak at their annual convention,” Hemmenway says. “There is a greater need, maybe now more than ever, for affordable access to multidisciplinary care, such as massage therapy. I was so impressed with the therapists I spoke to who are genuinely invested in patient’s overall wellness. But like the pain community, they also feel discouraged by the lack of access. That is why it is so important for us to use our voices to fight for better coverage of options like massage.”

Hemmenway shared feedback from the pain community about what they wanted massage therapists to know, including:

• People with pain have bodies that are very sensitive and complex. Pain continually evolves and changes, which means communication is vital to ensure that the massage is beneficial and to avoid making the pain worse.
• Maintaining a baseline can be just as important as achieving improvement (sometimes improvement isn’t possible); setting realistic goals is necessary.
• Massage therapy can be an important treatment option, but barriers exist, namely cost and transportation. Massage therapists should take into consideration things like providing more flexible pricing packages, offering in-home massages for those who are homebound, etc.

To learn more about U.S. Pain’s recent efforts related to complementary therapies, click here.

By Dana Belletiere
Last updated: 3 Oct 2019~

One of my friends tells her story of growing up with a mother with “issues” rather matter-of-factly, but the details are pretty grim to listen to. “She would stop talking to me for no reason, for days at a time, and put a gift on my bed when she decided she was done being mad at me. We never talked about why she was angry, and most of the time I didn’t know. I just knew not to talk to her until she left something on my bed, and then I’d hold my breath until the next time she got upset about something.” 

My friend’s mother sometimes disappeared for lengths of time without anyone knowing where she went or when (or if) she would return. When she fought with my friend’s father, she frequently brought my friend into the arguments as a mediator, despite her being a child. “Everything was about her,” my friend says. “Even as an adult, forty years later, everything is still about her.”

Whether we are born into families with difficult people, or enter into relationships with them as friends, coworkers, partners, etcetera, it can be challenge to know how to best respond to someone who is emotionally unwell. In order to do so effectively, it is paramount that we understand that the behaviors that are being presented are not our fault, develop firm and clear boundaries about what we will and will not tolerate, and practice asserting ourselves confidently and consistently. 

IT’S NOT YOU, IT’S THEM. NO, REALLY.

More times than I can count, I’ve had clients sitting across from me in the therapy room, blaming themselves for the erratic and unacceptable behavior of someone else, and puzzling over what they might have done differently. It sometimes seems as though difficult people have special powers that enable them to sniff out the highly sensitive and empathic among us, and attach themselves to them. Inevitably, those sensitive individuals become sponges for all the negative emotions of their difficult friend, and seek support from a clinician like me, wondering why they just can’t do better. 

The answer is (and trust me, this took ages for me to learn personally, too): You cannot fix a problem that does not belong to you. It’s just not possible. As much as you would like to, as much as you might be a stronger person, or better emotionally equipped, or have supernatural empathic healing powers – if someone does not want to do the work on themselves, then the work simply cannot be done. We cannot work on anybody but ourselves. When we start with the assumption that we are unable to do anything to change the behaviors of those around us, then we create space to make plans to care for ourselves. These plans often begin with identifying our boundaries. 

BOUNDARIES, BOUNDARIES, BOUNDARIES.

Once we’ve let go of the notion that we can change or fix the person in question, we can go ahead and set some boundaries. The beauty of this is that there is no right or wrong to setting boundaries – they are truly based on whatever we individually want and need. Do you need to set limits about the frequency and length of visits to a relative? Perfect. Do you need to allow yourself to walk away from conversations that become shaming and/or emotionally abusive? Awesome. Do you need to only see a certain person if you have a support person with you? Go for it. There are a billion ways to design your boundaries, and you can create them based on what your insides are telling you feels safe and right. 

Remember to watch out for “shoulds” here. The “shoulds” get in the way by dictating to us what we “should” be able to do in any given situation, and making us feel bad about it. Some classic “shoulds” include: “You really should be able to deal with this behavior for a few days over the holidays;” “You shouldn’t be so sensitive to that language – they were only joking;” “You should spend time with this person because they are older/related to you/a person in authority.” The problem with the “shoulds” is that they are typically culturally dictated and have little to do with what might be right or wrong for us as individuals. By ignoring our gut instincts and doing what the “shoulds” tell us to, we betray ourselves, and sometimes cause ourselves unnecessary suffering and harm. 

Be kind and stay true to yourself. Don’t let anyone but you dictate your boundaries. 

CONSISTENT AND CONFIDENT SELF-ASSERTION.

For many of us, self-assertion is difficult to put into practice. Once we’ve identified our personal boundaries, we have to go about implementing them by saying them to a difficult person, out loud. This can be incredibly challenging. We might be much more comfortable avoiding the subject (forever),  or allowing our feelings to build up until we explode. Truly, self-assertion is a hero’s mission, and we must be gentle with ourselves as we attempt to master this very difficult and hard-won skill. 

I’ve found that seeking support from a good therapist (or a very unbiased friend) can be helpful when beginning to practice self-assertion. It is useful to have an objective party translate one’s boundaries into language that is level, direct, and un-muddied by emotion. Another reasonable option is to begin setting small boundaries, which help us gain traction and build trust and confidence in ourselves. Not ready to call off a visit on Thanksgiving? Set a smaller boundary to stay home for a lower-stakes holiday, and assess how it feels. Baby steps lead to big steps. 

Conclusion 

To wrap it all up, let’s acknowledge again that this is hard work, and requires patience, practice and time. Many of us have spent a lifetime walking on eggshells around difficult folks, and the idea of suddenly unleashing a confident boundary seems as likely as running a marathon with no training – anxiety is to be expected. Be patient and compassionate with yourself, and implement your new skills at a pace that feels comfortable to you. As you do, you may notice a greater sense of peace and self-empowerment when dealing with the challenging people in your life. 11022

Dana Belletiere

I am a licensed therapist serving clients in New Hampshire, Pennsylvania, and Massachusetts. In my practice, I focus on helping clients to shape their own narratives, accept and value all parts of themselves, and empower themselves to cultivate an authentic and meaningful life. Learn more about me and my practice on my website: http://www.danalicsw.com.

Gluten-Freedom by Alessio Fasano, MD with Susie Flaherty

 

Ingredients:

1 1/2 to 2 pounds salmon (wild-caught preferred with skin on)

Juice from 2-3 limes

Olive Oil

Sesame Seeds

Preheat oven to 350 degrees. Line baking sheet with parchment paper and coat very lightly with olive oil. Place salmon, skin side down, on parchment paper in the pan.

Squees the juice of 2-3 limes into a bowl. Use a pastry brush to coat salmon with lime juice. Coat the top of the salmon with sesame seeds. Bake for 15-20 minutes. Fish is done when it flakes easily with a fork. Be careful to not overcook.

 

Dear pain warriors, Each November, U.S. Pain Foundation organizes a month-long educational campaign for the pain community. Recognizing that art and writing can help kids and adults cope with and/or express chronic pain and its effects on their lives, this year’s KNOWvember campaign will focus on creativity. During the month, titled “Art through Pain: How Creativity Helps Us Cope,” U.S. Pain will be:hosting three virtual events, soliciting visual art submissions to showcase at a later date,and highlighting information about art and pain on social media (#ArtThroughPain).If you’d like to submit your artwork, you have the option of sharing it with us privately or allowing us to use it in a future project (such as in a blog post on Remedy or an INvisible Project magazine) through the link below.

Submit your artwork >>

For healthcare to work, we the patient, need to be heard. Find out what I am doing to give the medical community a better understanding of what is important to us.

Why Patient Advocacy is Important — The Disabled Diva’s Blog