It’s hard to believe it’s been seventeen years, so many have been spent caring for loved ones or being sick. I’ve lost so many years, no they weren’t technically lost, I was present during the first three years of our marriage, we had fun cooking together, enjoying a late-night swim and grocery shopping together.
When your vows say for better or worse you don’t think the worst will come so soon. You also don’t realize those years aren’t the worst, they get worse.
I was caring for my ill and dying grandparents over an eight-year period during the last years of their life. I stayed for weeks at a time. Absent, absent from my husband, our life and myself. It’s not a pity party today, it’s a real reflection of how marriage can be so different than you plan.
The year my gramps died I started getting sick and a year-long journey with a neurologist started. Every test was abnormal but she could not make a diagnosis. Luckily, I learned Internet search skills from my previous job and could start my research. I narrowed my guesses to eight autoimmune diseases and took a wild guess at Lyme. This is one of those times I wish I were wrong. Lyme and the illnesses it brings along have been in the driver seat since 2012.
This post isn’t about me, it’s about my husband. I’ve been absent, mentally unavailable, sick and dying since the early years of our marriage. I do think he got short-changed. We don’t know what we are committing to when we make our vows. The difference is those who stay committed to the vows no matter how shitty life gets.
I still expect the other shoe to fall, he’s never given me any reason to feel this way, it comes from from my traumatic childhood. Complete trust is impossible for me but I continue to build towards 100%.
When you’re chronically ill quilt is constantly over your shoulder, as I approach our anniversary day guilt has tainted my feeling of celebration. It angers me I’m not up to going to a restaurant for dinner, enjoy a bottle of wine or hold hands walking thru a park under the stars.
I am blessed to find someone who stands by their vows no matter how hard it gets.
Research in animals shows brain’s immune system is activated by stress during pregnancy
October 21, 2019
Source: Ohio State University
Chronic stress during pregnancy triggers an immune response in the brain that has potential to alter brain functions in ways that could contribute to postpartum depression, new research in animals suggests.
The study is the first to show evidence of this gestational stress response in the brain, which is unexpected because the immune system in both the body and the brain is suppressed during a normal pregnancy.
The Ohio State University researchers who made the discovery have been studying the brain biology behind postpartum depression for several years, creating depressive symptoms in pregnant rats by exposing them to chronic stress. Chronic stress during pregnancy is a common predictor of postpartum depression, which is characterized by extreme sadness, anxiety and exhaustion that can interfere with a mother’s ability to care for herself or her baby.
Stress is known to lead to inflammation, which prompts an immune response to protect against inflammation’s harmful effects. Based on what they already know about compromised brain signaling in rats stressed during pregnancy, the scientists suspect the immune cells in the brain responding to stress may be involved. If that’s the case, the immune changes may create circumstances in the brain that increase susceptibility to depression.
In unstressed pregnant rats, the normal suppression of the immune system in the body and the brain remained intact throughout pregnancy. In contrast, stressed rats showed evidence of neuroinflammation. The study also showed that the stressed rats’ immune response in the rest of their bodies was not active.
“That suggests there’s this disconnect between what’s happening in the body and what’s happening in the brain,” said Benedetta Leuner, associate professor of psychology at Ohio State and lead author of the study. She speculated that the signaling changes her lab has seen before in the brain and this immune response are happening in parallel, and may be directly related.
Leuner presented the findings Saturday (Oct. 19, 2019) at the Society for Neuroscience meeting in Chicago.
In this work, rats are exposed to unpredictable and varied stressful events throughout their pregnancies, a practice that adds a component of psychological stress but does not harm the health of the mother or her offspring.
In the stressed animals, the researchers found numerous pro-inflammatory compounds that indicated there was an increase in the number and activity levels of the primary immune cells in the brain called microglia. Their findings also suggested the microglia were affecting brain cells in the process.
Leuner’s lab previously determined in rats that chronic stress during pregnancy prevented motherhood-related increases in dendritic spines, which are hair-like growths on brain cells that are used to exchange information with other neurons. These same rats behaved in ways similar to what is seen in human moms with postpartum depression: They had less physical interaction with their babies and showed depressive-like symptoms.
Leuner and colleagues now plan to see whether the brain immune cells activated during gestational stress are responsible for the dendritic spine elimination. They suspect that microglia might be clearing away synaptic material on dendrites.
Leuner has partnered on this research with Kathryn Lenz, assistant professor of psychology at Ohio State, whose work explores the role of the immune system in brain development.
Though pregnancy was known to suppress the body’s immune system, Lenz and Leuner showed in a previous study that the same suppression of the immune system happens in the brain during pregnancy — the number of microglia in the brain decreases.
“By layering gestational stress onto a normal pregnancy, we’re finding this normal immunosuppression that should happen during pregnancy doesn’t occur, and in fact there’s evidence of inflammatory signaling in the brain that could be bad for dendritic spines and synapses,” Lenz said. “But we’ve also found changes in the microglia’s appetite. Every characteristic we’ve looked at in these cells has changed as a result of this stress.”
The researchers are now trying to visualize microglia while they’re performing their cleanup to see if they are eating synaptic material. They are also manipulating inflammatory changes in the brain to see if that reverses postpartum depression-like behavior in rats.
“We’ve seen the depressive-like symptoms and neural changes in terms of dendritic spines and synapses, and now we have neuroimmune changes suggesting that those microglia could be contributing to the neural changes — which we think ultimately underlie the behaviors,” Leuner said.
The research was supported by the National Institutes of Health.
Ohio State current and former students Caitlin Goodpaster, Nicholas Deems and Rachel Gilfarb also worked on the study.
Story Source:
Materials provided by Ohio State University. Original written by Emily Caldwell. Note: Content may be edited for style and length.
Ohio State University. “New way to think about brain’s link to postpartum depression: Research in animals shows brain’s immune system is activated by stress during pregnancy.” ScienceDaily. ScienceDaily, 21 October 2019. <www.sciencedaily.com/releases/2019/10/191021151538.htm>.
We wanted to make you aware of an opportunity to submit public comments to the Food and Drug Administration (FDA). Specifically, the FDA would like the public’s views on two main issues: 1. What criteria the FDA should use to evaluate new opioids to treat pain2. What new incentives are needed to better support and encourage the development of new treatments for pain On Sept. 17 the FDA held a public hearing called “Standards for Future Opioid Analgesic Approvals and Incentives for New Therapeutics to Treat Pain and Addiction.” While the public hearing has passed, the FDA is accepting written comments until Nov. 18. How to submit Written comments are to be submitted to the Division of Docket’s Management (HFA-305), Food and Drug Administration, 5630 Fishers Lane, Rm. 1061, Rockville, MD 20852. Electronic comments can be submitted by using the button below.All comments must be identified with the docket number FDA-2019-N-2514. Please keep in mind that all comments submitted to the docket are public. Why advocates should engageWe think it is important for people with pain to let FDA know your thoughts on these issues. A number of people and organizations at the hearing said that they thought no new opioids should be allowed on the market. What’s your opinion about this? People with pain need new options There has long been a lack of new non-opioid medications approved for pain. We encourage you to tell FDA what impact pain has had on your life and how speeding up the development of new drugs in the pipeline could make a difference to your life and the lives of so many others debilitated by chronic pain. People with pain need to make our voices heard. We encourage you to write into the docket.Sincerely, Cindy SteinbergNational Director of Policy & AdvocacyU.S. Pain FoundationSubmit comments here!
Your Friday prompt for Stream of Consciousness Saturday is “dream.” Use it any way you’d like. Have fun!
Dream or dreaming would seem like an easy topic to write about but dreaming comes in many forms. Dreams I have for the world, for my friends, dreams I have for family and not least dreams I have for myself. I believe one should dream, set a bar higher from where you are and visualize it with all your heart. The problem with dreaming is some people never get past dreaming about something instead of doing something to make the dream come true.
In my early 20’s, I wasn’t meeting the type of men I wanted to have a long term relationship with. I dreamed of a nice man to share a respectful relationship with but it was not happening. I had to make a change, get way out of my box and go to where I thought nice men would be. I enrolled in college courses, mostly art, attended wine tastings even though I knew nothing about wine and I went to art galleries to see what my classes were talking about when it came to masterpieces.
I’m not a rocket scientist, it didn’t take long, I met professional men, some I dated, others became good friends and most of all I learned a lot about myself. You have to do something to make a dream come true or it just remains a dream.
Melinda
Here are the rules:
Your post must be Stream of Consciousness writing, meaning no editing (typos can be fixed), and minimal planning on what you’re going to write.
Your post can be as long or as short as you want it to be. One sentence – one thousand words. Fact, fiction, poetry – it doesn’t matter. Just let the words carry you along until you’re ready to stop.
I will post the prompt here on my blog every Friday, along with a reminder for you to join in. The prompt will be one random thing, but it will not be a subject. For instance, I will not say “Write about dogs”; the prompt will be more like, “Make your first sentence a question,” “Begin with the word ‘The,’” or will simply be a single word to get you started.
Ping back! It’s important, so that I and other people can come and read your post! For example, in your post you can write “This post is part of SoCS:” and then copy and paste the URL found in your address bar at the top of this post into yours. Your link will show up in my comments for everyone to see. The most recent pingbacks will be found at the top. NOTE: Pingbacks only work from WordPress sites. If you’re self-hosted or are participating from another host, such as Blogger, please leave a link to your post in the comments below. https://lindaghill.com
Read at least one other person’s blog who has linked back their post. Even better, read all of them! If you’re the first person to link back, you can check back later or go to the previous week by following my category, “Stream of Consciousness Saturday,” which you’ll find below the “Like” button on my post.
Copy and paste the rules (if you’d like to) in your post. The more people who join in, the more new bloggers you’ll meet and the bigger your community will get!
As a suggestion, tag your post “SoCS” and/or “#SoCS” for more exposure and more views.
Most antidepressants take time to alleviate symptoms, but ketamine reduces symptoms quickly in most patients with major depressive disorder.
Researchers are hailing ketamine as the most significant new development in psychiatry given its high efficacy for treating major depression. Recent evidence has shown that in addition to depression, ketamine may also be a promising treatment for obsessive-compulsive disorder, post-traumatic stress disorder, and a number of other treatment-refractory neuropsychiatric disorders. In a recent paper published in Drug Discovery Today, researchers explore ketamine’s role in revolutionizing new mental health treatments and discuss how this drug’s mechanism of action has led to an influx of new research and studies on depression treatment.
Ketamine was approved by the US Food and Drug Administration (FDA) in 1970 as an anesthetic and safe alternative to phencyclidine. The therapeutic benefits of ketamine as an antidepressant were explored years later because of a stigma on from its widespread recreational use during the late 1960s and 1970s, and this agent was initially only administered intravenously.
In 2000, researchers found that ketamine had strong, fast-acting, and long-term effects in depression. In a randomized, placebo-controlled, crossover design study, patients with depression received 0.5 mg/kg of ketamine or saline on the first day of testing. Treatments were switched 1 week later. Researchers found that the antidepressant effects of ketamine began within 4 hours, peaked at 72 hours, and lasted for 1 to 2 weeks thereafter.1 In a 2006 study, this finding was replicated in an independent group of 18 patients with major depressive disorder who were resistant to other treatments. Compared with participants who received placebo, those who received ketamine showed significant improvement in symptoms within 110 minutes, with 35% maintaining significant response for at least 1 week.2
In subsequent years, results from a number of placebo-controlled studies revealed that ketamine is largely effective and long-acting in treatment of bipolar disorder and treatment-resistant major depressive disorder and produces antisuicidal and anti-anhedonic effects in mood disorders.
Many of today’s depression treatments are monoaminergic-based, including monoamine oxidase inhibitors, tricyclic antidepressants, selective serotonin reuptake inhibitors, and serotonin-norepinephrine reuptake inhibitors. These treatments have been proven effective for a large number of patients. However, a significant subset of patients with major depressive disorder do not respond to these agents.1 When compared with ketamine, these agents have a delayed onset of action that can take up to several weeks — increasing the risk for organ failure and suicide in this subset.
A single dose of ketamine is shown to produce rapid and robust effects within hours to days of administration. This agent is also shown to rapidly reduce suicidal ideation, fatigue, and anhedonia, and improve circadian rhythm and sleep patterns in major depressive disorder.1 Researchers point out that these symptoms are synonymous across several psychiatric disorders but remain inadequately treated by monoaminergic-based agents.
The notable differences between ketamine and standard antidepressants have spurred researchers to develop new ketamine treatments that are less invasive than those involving intravenous administration. In March 2019, the FDA approved an intranasal version of ketamine called esketamine for adults with treatment-resistant depression.
Researchers say that ketamine’s mechanism of action in the context of clinical antidepressant efficacy is only partially clear. At present, researchers understand that ketamine’s mechanism of action goes beyond modulating the neurotransmission of glutamate and includes direct and indirect high affinity antagonistic binding properties at the N-methyl-D-aspartate receptor, as well as a-amino-3-hydroxy-5-methyl-4-isoxazole-propionic acid throughput modulation.1 Researchers have also noted that ketamine is a weak agonist at the mu, delta, and kappa opioid receptors.1
Other mechanisms that may contribute to ketamine’s efficacy for depression treatment include agonism at the dopamine receptor, antagonism at the M1–3 muscarinic receptors, and inhibition of the reuptake of serotonin, dopamine, and norepinephrine.1
Researchers are continuing to investigate ketamine’s underlying mechanism of action so they can progress with identifying and developing new agents that work similarly and that offer fewer side effects, as well as prolonged therapeutic effects.
Ketamine has influenced researchers to place more focus on the glutamatergic system when developing new therapies, since it is thought that rapid-acting antidepressants may trigger neurobiological events deeply rooted in the rapid reconfiguration of limbic circuitries.1 In addition to intranasal esketamine, other examples of rapid-acting glutamatergic agents that show promising results are nitrous oxide and sarcosine.
Nitrous oxide has been used as an anesthetic for more than 150 years and offers many of the same mechanisms as ketamine. Results from a 2015 study revealed that patients with treatment-resistant depression who received nitrous oxide experienced significant improvement in symptoms at 2 hours and 24 hours compared with placebo. Symptoms that showed the largest changes in improvement were depressed mood, guilt, suicidal ideation, and psychic anxiety.3 Additional trials are being conducted to determine the safety, efficacy, and optimal dosing of nitrous oxide for depression.
Sarcosine is an amino acid that functions as a glycine transporter-1 inhibitor and has co-agonistic properties at the N-methyl-D-aspartate receptor. Results from clinical trials have shown that sarcosine is a promising treatment for major depressive disorder and produces no adverse events. However, compared with ketamine, sarcosine does not produce the same rapid-acting effects within the same amount of time.1 Studies are currently underway to replicate the effects of both nitrous oxide and sarcosine in depression.
Ketamine has been found to enhance the transmission of gamma-aminobutyric acid (GABA) to reduce depression. Shortly after approving intranasal esketamine, the FDA approved an agent called brexanolone that acts as a positive allosteric modulator of GABA receptors. Brexanolone is currently being used to treat postpartum depression since this therapy produces rapid- and long-acting antidepressant effects similar to that produced by ketamine. The exact mechanism of action of brexanolone remains unclear, though researchers theorize that it binds to synaptic and extrasynaptic GABA receptors to increase functionality. Brexanolone is still being tested in clinical trials, since this agent has been associated with serious adverse events including syncope, altered state of consciousness, suicidal ideation, and intentional overdose.1
Buprenorphine, an opioidergic agent currently used to treat opioid use disorder, is also being studied for treatment of depression. Opioidergic agents were once used to treat melancholia during the 1950s before less addictive therapies became available and are shown to have a wide variety of actions in the brain that reduce depression. Studies evaluating the effects of buprenorphine by itself and combined with other agents on depression have produced promising results, though the FDA has stated it needs additional clinical data before this agent can be used to treat major depressive disorder.
Given what studies have since revealed about the efficacy of ketamine in depression, many researchers are reconsidering the potential benefits of banned or scheduled drugs for psychiatric patients.
Psychoactive drugs being reevaluated include lysergic acid diethylamide (LSD), 3,4-methylenedioxy-methamphetamine, and psilocybin. Researchers are determining whether microdosing these substances could produce therapeutic benefits without harmful side effects or abuse. Results from a 2011 study revealed that psilocybin was successful at significantly reducing symptoms of depression for up to 6 months in patients treated for advanced-stage cancer.1 In a 2015 study that examined the effects of LSD in patients with life-threatening diseases who were experiencing anxiety, LSD was safe, well-tolerated, and effective at reducing psychiatric symptoms.1
Researchers say that the recent FDA approval of intranasal ketamine represents a major breakthrough in psychiatry and that advances in ketamine or ketamine-like treatments may greatly improve the quality of life for patients with depression who do not respond to current treatments. Studies conducted on ketamine have paved the way for research evaluating novel approaches for the prevention and treatment of depression.
Disclosure: One author is listed as a co-inventor on a patent for the use of ketamine in major depression and suicidal ideation, among others. Please see original reference for a full list of authors’ disclosures.
300 BC2M High School club members gathered in San Francisco on November 2nd to mark our 4th Annual Student Summit. Thanks to our amazing host, Pinterest, these teens spent an afternoon engaging in mental health conversations, participating in exciting activities, and meeting other students from around the Bay Area. We are so grateful for our keynote speaker, Jen Gotch, CCO and founder of ban.do, in sharing her personal story and path to successfully managing her mental illness. She spent hours engaging in Q&A following her time on stage! After a morning filled with various speakers and an exciting activity fair, our students dispersed into breakout sessions where they chose workshop tracks covering the following topics: Advocacy in High School and Beyond; Mental Health & Interpersonal Relationships; Mental Health in the 21st Century; and Identity and Mental Health. The track system was a hit and our students gave us amazing feedback on this new change we implemented.
The BC2M Summit is one of the biggest highlights of the year for the students and allows them to learn from one another, build a movement of change in their community, deepen their understanding of mental health topics, and make life-long friends. With the inspiration and hope that filled the room, we know that these students will put an end to stigma and create a more empathetic and compassionate world. Special thanks to our sponsors for making the event possible: Pinterest, David & Lucile Packard Foundation, Palo Alto Medical Foundation and Kaiser Permanente.
An Extraordinary Evening Fighting the Stigma
Sydel Curry and Damion Lee, Ben Stiller and Zak Williams, Dave Grohl and Violet Grohl
For the last seven years, Bring Change to Mind has set aside one night each Fall to celebrate Revels & Revelations. This magical night is meant to bring our stories forward; highlight our student advocates; laugh, cry and sing along to wonderful entertainers; and most importantly, fund our efforts to end stigma. October 17th in San Francisco was quite a night and we wish you all could have been with us. 24 BC2M High School club members represented their peers at Revels and shared the work they are doing on their campuses and why mental health advocacy is so important to them. Their stories are courageous and inspirational. Each guest was asked to share why they support BC2M – the students later brought these notes and special intentions to the stage in a very emotional processional.
We were honored to bestow the third Robin Williams Legacy of Laughter Award to Ben Stiller. His heartfelt acceptance speech made for an emotional evening. Performances at Revels included the incredible line up of: Darren Criss, Dave Koz, JB Smoove, Malin Akerman, Margaret Cho, Charles Jones, and the beautiful voice of Violet Grohl, accompanied by her father, Dave Grohl, and Rami Jaffee of the Foo Fighters. Our hearts continue to soar as we think of the generosity of each person in the room that night.
We thank those that attended, have made contributions to support our work or choose to share our work on social media. A special thanks to our Revels partners: American Airlines, VX Capital, St. Regis San Francisco, WindRacer wines, and Ideas Events. Together we will save lives and put an end to stigma.
Take a moment to watch a few highlights from the night!
Support Bring Change to Mind Today
Help support the life-changing work our high school students are accomplishing in their communities and our expansion to bring this program to more schools throughout the country.
Melt the coconut oil in a glass bowl in the microwave for about 30 seconds, and let cool for five minutes. Stir in the sugar and essential oils until combined. Package the peppermint sugar scrub in airtight glass jars, and sprinkle finely crushed candy cane on top; mix the candy cane into the scrub if desired.
To use, gently massage a small amount into clean, dry skin. Rinse thoroughly with lukewarm water, and pat dry. Store the sugar scrub in a cool dry place for up to six months.
Buy jars with hinged lids for a spa look and attach a ribbon and small spoon.
I am excited to share that we have reached 127 percent of our total goal to bring ‘A Potter’s Dream: Myths & Legends’ to print. Which means that in less than a month I will be holding a physical printed copy of my first book ever in my hands!
The Danish concept of hygee never gets old. It’s all about slowing down and taking your time, creating space for warmth, coziness, and being in the moment. Although it’s not specific to wintertime, hygee lends itself well to the season. Here are a few ideas on how to infuse hygee into your cozy living this winter.
This woman is talking to me, maybe you. She talked about her shame in away I’m unable to articulate, she can see her failures in a light when I’m in the dark. Please watch the video, maybe she will touch your life too. Melinda
With films playing a key role in shaping attitudes to mental health, two doctors say Joaquin Phoenix’s troubled supervillain perpetuates damaging stereotypes
As junior doctors who work on acute inpatient psychiatric wards, serious mental illness is our daily reality. We have, therefore, watched the controversies around Todd Phillips’s Joker – in which Joaquin Phoenix plays a troubled loner who turns to violence – with professional interest.
The film’s dominance in the debate about portrayals of mental illness in the movies comes at a curious time. Recently, we’ve witnessed great leaps of awareness about relatively common mental-health issues such as depression and anxiety, and with that awareness, increasing dismissal of the sort of unhelpful prejudices that used to surround them. These are now readily discussed without shame and often represented in the media with a well-informed grasp of the facts, thanks to effective information campaigns.
However, severe mental health conditions, such as psychotic illnesses, remain shrouded in stigma and are consistently misrepresented and misunderstood. Portrayals of mental illness in film can perpetuate unfounded stereotypes and spread misinformation. One of the more toxic ideas that Joker subscribes to is the hackneyed association between serious mental illness and extreme violence. The notion that mental deterioration necessarilyleads to violence against others – implied by the juxtaposition of Phoenix’s character Arthur stopping his medication with his increasingly frequent acts of violence – is not only misinformed but further amplifies stigma and fear.
Studies show this association is exaggerated and people with severe mental illness are more vulnerable to violence from others than the general population. Interesting, then, that Joker’s earnest attempt to create an empathetic character with mental illness – who writes: “The worst part of having a mental illness is people expect you to behave as if you don’t” – contributes to the very prejudice that Arthur longs to evade.
Arthur’s supposed loss of grip on reality is suggested by a peppering of nods to psychotic symptoms: delusional ideas of a grandiose nature (“I am an undiscovered comedic genius”) and hallucinations of his neighbour – which are confirmed by his eventual admission to a psychiatric institution. This restoration of order via Arkham Asylum affirms the overarching inference of
the film: Arthur’s descent into violence and destruction is triggered by his mental deterioration. The result of this is to – disappointingly – remove Arthur’s agency and divert attention from a potentially more stimulating conversation about wealth inequality and its responsibility for societal collapse.
We wouldn’t want to get bogged down in labels, but the psychopathology Arthur inhabits is foggy at best: his apparent lack of disordered thinking means the attempt to illustrate psychosis is half formed. He also displays traits of narcissism and depression. This diagnostic vagueness may create a more relatable character that reflects the pain of any psychiatric illness; but it gives the impression that many disorders have been squashed into a plot device. In the end, it undermines Phoenix’s hypnotic performance and Joker’s sincere attempts to explore the interaction between poverty, inequality and social isolation.
Arthur’s chilling quirk – his bursts of incongruous and uncontrolled laughter – is no laughing matter either. Presumably, he suffers from the neurological condition pseudobulbar affect – also known as “emotional incontinence” – perhaps caused by his childhood head trauma. Joker may make an attempt to unpick the difference between the psychiatric and the neurological – between a mental illness and a medical disorder – but it runs the risk of conflating the two with a haunting, stigmatising and problematic image. Whether intentionally or not, Arthur comes across as a hysterically laughing supervillain, stereotypically “mad” to the untrained eye; a murderous clown laughing alone on a bus.
Cinematic depictions of mental illness – most infamously, One Flew Over the Cuckoo’s Nest– have profound and lasting implications in the real world. It is widely acknowledged within psychiatry that Cuckoo’s Nest led to inappropriate levels of suspicion and misinformation regarding electro-convulsive therapy, and may have meant many people did not receive treatment that is proved and effective. All this due to a single film’s misinformed presentation.
Films have the power to perpetuate stigma and fear, which is why the misrepresentation of severe mental illness in Joker should not be dismissed lightly.
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.
contact@uspainfoundation.org Main: (800) 910.2462 670 Newfield Street, Suite B 1 http://www.uspainfoundation.org Fax: (800) 929 -4062 Middletown, CT 06457
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.
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..
Incentivize innovative value-based models of care that integrate multimodal treatmentThe cardiac care model, which incorporates exercise, nutrition and other modalities, is one innovative
contact@uspainfoundation.org Main: (800) 910.2462 670 Newfield Street, Suite B 2 http://www.uspainfoundation.org Fax: (800) 929 -4062 Middletown, CT 06457
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.
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.
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.
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.
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.
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.
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
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.
Our raku pottery vase today, ‘Tiresias’ Prophecy’ tells the tale of blind creation, an ancient oracle, an instant gender reassignment, a spat between gods, and a lesson all men should be sure to take heed of – the woman is always right. 557 more words
Looking for the Light 