The Hidden Costs of Patient Advocacy

By Barby Ingle, PNN Columnist

I have been advocating for chronic pain patients and the pain community since 2006. I started advocating because my chronic pain journey was long and hard, yet my story was by no means original. What happened to me was happening to far too many others. We were being ignored by the medical system and had lost our voices. 

I decided that it was time to get my voice back. 

I first started advocating for myself with my own providers, then started going to doctor’s appointments with other patients, followed by peer-to-peer mentoring of other patients and attending health events. Within a few years I was being asked to be the patient representative at many conferences. 

I didn’t start using social media until 2009. Doing so opened up a whole new set of ways to advocate. I began connecting with people all over the United States and the world. In 2010, I was invited to testify at a Defense Department hearing in Washington, DC and also at the Arizona legislature. 

I had patients attack me on social media for not being sick enough. Well, they haven’t seen me at my worst! What they saw was the branding and marketing image of me, which puts an emphasis on positivity. 

I recently watched an argument on social media over how much advocacy costs. There were two sides to the argument. On one side were those who think advocacy should be free and that it costs nothing. The other side was saying that money is needed to fund advocacy work and that people should donate to pain organizations who do it for them. 

If you asked me during my first 5 years of advocacy, I would have said it is free to be an advocate. But over the past 7 years I’ve learned that there are many hidden costs outside of the time you volunteer. 

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As an advocate who makes phone calls, your monthly phone bill would be a minimum of $25 for each phone line per month, plus another $20 for unlimited long distance. For online advocacy, internet service fees would be about $45 monthly. That’s not counting the cost of a computer, printer, telephone, office space, supplies, newsletters, etc.

Whether you are going for in-person advocacy or mailing letters, you need to take the time to research the issues and work on prep materials. That may take 10 to 20 hours per issue. If you are lucky enough to be paid for your time ($15/hour is the proposed national minimum wage), that would be a minimum salary of $150. 

Traveling to your state capital could cost a tank of gas, plus your time. That is not much. But to go to meetings in Washington, DC – as dozens of advocates recently did to attend an FDA hearing -- you will need to pay for your flight, hotel, meals and ground transportation.  

When someone like myself is paying for most of these costs privately, it adds up to tens of thousands of dollars a year. Can you do it for less? Yes, but then you are getting less out of your advocacy work and it is going to be harder to make a difference. 

We do need individual patients to write letters, make phone calls and call for change. But to say that there is no cost involved is really not accurate at all. There are many other costs, like writing social media content, pamphlets, resource materials, business cards, etc. that should be taken into consideration.

Just recently Don't Punish Pain rallies were held across the country. The campaign is said to have begun with one woman and a stack of index cards, but that doesn’t factor in all the other costs of signs, banners, telephone calls, and posting on social media, or the hundreds of people who volunteered their time to organize and attend the rallies. 

Advocacy costs at all levels. Recently I heard from a patient who was on workers compensation, who lost her provider and medical care because she was so involved in advocacy they thought she had a job. 

There are millions of dollars involved in advocacy and the work takes time, effort, heart and care. Please know that I am glad for all advocates and the help that comes from any efforts they make. We are not thanked a lot. 

I send out big thank you notes to everyone who has sent an email, made a phone call, testified in person, attended a doctor’s appointment with another patient, and made a difference for even one other person. Whether you are paid for your advocacy work or not, it has value and it does at minimum cost us energy pennies! 

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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.

5 Steps to Successful Advocacy for Pain Community

By Barby Ingle, Columnist

When it comes to advocating for the pain community, there are many roles to fill and many ways to go about doing it. There are patient advocates, legislative activists, social media activists and self-advocates.

I do a little of each and see that the most common mistake in activism is when patients join an organization without fully understanding the legislative process, how long it takes, and that there’s no guarantee that the desired outcome will be reached.

This is a topic I have seen on many of the upcoming pain conference agendas for 2018. I have been asked to speak at a conference about it, and while preparing my talk I realized that patients need more information on what it takes to build a pain organization into a successful change maker in public policy and legislation.

There is a 5-step process that I use to insure that a message is heard, supported, and goes from being an idea to actual legislation at the federal or state level. It takes a never-give-up attitude, with a big influx of time, effort, follow-up and social media support.

First, when crafting legislation to improve patient care or some other goal, you need to start by creating an implementation plan. This plan should outline a budget, strategies, leadership responsibility and timelines for goals to be met.

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Second, the team leader must clarify the roles of the advocacy team and communicate that role to the rest of the leadership team, staff and volunteers. There are many personalities and challenges that will come up, so having the right people in place working together is very important.

Third, confirm that all team leaders express support for the initiative in meetings with legislators and their staffs. Allow additional time for the implementation of each step. Things tend to take longer than they should when working with teams and with government officials. The leadership should organize volunteers, create training resources, reach out to the media (and have patient stories ready for them), and provide effective speakers for hearings and press conferences. Be sure to include healthcare professionals and patients on your team.

Fourth, monitor the progress of the legislation closely. There are usually a lot of “hurry up and wait” situations and it could take years before a bill gets out of committee or comes up for a vote.  Sometimes mid-course corrections and negotiations are needed with legislators to gain their support and to keep a bill from dying, especially if a mandate or money is involved. 

Fifth and finally, carry out your strategies to achieve your goals. Your leadership team and volunteers should understand the bill and the legislative process, and be using marketing and social media tools to gain public support and awareness about why the legislation is needed. Staying motivated is critical to success. Keep your staff and volunteers involved and committed to making a difference in their own lives and the lives of others.

If you are a chronic pain patient and want to get involved, understand that this type of work takes physical action, but it doesn’t have to be all encompassing. Volunteer with advocacy groups or non-profits that are already working on legislative issues that interest you. See what fits you and volunteer to be a team leader or social media supporter. Share your story and why the bill is important to you, or even testify in person at a legislative hearing.

Be the change agent that we all need in getting proper and timely healthcare for the chronically ill.

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Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain FoundationShe 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.

5 Reasons to Max Out on Twitter for PainWeek

By Margaret Aranda, MD, Columnist

More than ever, you need to be on Twitter this week if you love to advocate for pain patients. That’s because PainWeek begins Tuesday, September 5th and runs through Saturday, September 9th at the Cosmopolitan Hotel in Las Vegas.

You won’t find many patients at PainWeek, but there are plenty of doctors. PainWeek is the nation’s largest annual conference for healthcare providers who practice pain management. Over 2,300 physicians, nurses, pharmacists, dentists, psychologists, and social workers will attend seminars on topics ranging from analgesics of the future to opioid constipation to a debate on whether urine drug testing is necessary.

Why should you care about PainWeek and why should you be maxed out on Twitter?

Tweets to #PainWeek are going to get a lot of eyeballs, not only from PainWeek organizers, but doctors, pharmaceutical companies and the news media. It's a good opportunity to show them what pain sufferers are feeling and thinking.

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Tweeting is also a great way for patients to spread information and awareness about chronic pain to new pairs of eyes. When you do that, it’s called an "impression.” When someone comments or replies to your Tweet, that's an "engagement.” And when you get a “Retweet” – also known as an #RT -- that's the biggest compliment a Twitterer can give to a fellow Twitterer.

Here are 5 ways pain patients can use Twitter:

1) Advocate: The more people see your Tweets, the more you empower people to step out and be bold for themselves and for others that are suffering in pain. Use uplifting images, music, or quotes interspersed with your Tweets to help get positive attention.

2) Prevent Suicides: The ultimate goal of an advocate is to prevent the most severe outcomes of unrelenting, persistent pain. Those would be patient suicide, spousal suicide, and physician homicide. If we can spread the word about these emerging problems, we can help others hang onto their lives until the nation finally recognizes what is happening in the pain community. 

3) Use Hashtags: Worldwide patient advocacy can reign on Twitter. Try to use 6 to 8 hashtags per Tweet. In addition to #PainWeek, here are some great hashtags to use for the widest outreach:

#bedridden #broken #ButYouDontLookSick #chronic #chronicillness #chronicpain #ChronicPain #disabled #Disability #edRecovery #epatient #ehealth #HomicideDue2Pain #IAmNotANumber  #invisibledisability #invisibleillness #livelife #MedEd #MedX #NoCure #opioids #opioidcrisis #pain #PainManagement #patients #PatientEngagement #PatientExperience #PatientsFirst #PatientsIncluded #PatientsLikeMe #patientsafety #PatientsUnitedForDEAReform #ptsafety #spoonie #Spoonies #SpoonieProblems #SpoonieSpeak #StoriesNotStigma #suicide #SuicideDue2Pain #SupportVeterans #Vets #Veterans

4) Grow: What if every one of us had 10,000 followers each? It's one thing to have something to say, and another thing to show it to as many pairs of eyes as possible. Twitter is very reciprocal, so follow everyone who follows you.

For the same reason, if someone Retweets you, try to Retweet back or at least “like” a few of their Tweets. That's Twitter's culture. It’s reciprocal. 

5) Inspire and be inspired. We learn and grow every day. Sometimes we teach and sometimes we learn from our students. If you love to write or advocate for patients, consider starting a free blog where millions of authors go: Wordpress.com. This way, when you Tweet, it could be one of your own articles, and you can drive traffic to your own website by Tweeting your blog’s address.

#PainWeek is poised to be the most Tweeted pain meeting of the year, so join in on the fun!

"Be empowered to empower." 

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Dr. Margaret Aranda is a Stanford and Keck USC alumni in anesthesiology and critical care. She has dysautonomia and postural orthostatic tachycardia syndrome (POTS) after a tragic car accident left her with traumatic brain injuries that changed her path in life to patient advocacy.

Margaret is a board member of the Invisible Disabilities Association. She has authored six books; the most recent is The Rebel Patient: Fight for Your Diagnosis. You can follow Margaret’s expert social media advice on Twitter, Google +, Blogspot, Wordpress. and LinkedIn.

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.

What Is Patient Advocacy?

By Barby Ingle, Columnist

In the last few years there has been a boom in people wanting to be patient advocates. Not the paid positions that are filled by someone who works for a hospital or medical provider, but those actually affected by chronic pain – patients and caregivers -- who freely volunteer their time, energy, and efforts to help the pain community.

Patient advocates work to support a cause or public policy to improve patient care and better our community. They write to legislators, testify on behalf of pain patients, share social media posts, encourage research, speak up publicly, and talk about bettering the pain community.

Other names we could be called are patient champions, supporters, backers, proponents, spokespersons, campaigners, fighters, and crusaders.

There is a lot of chatter in the pain community about what patient advocates should be doing, so I thought it would be good to point out some things an advocate should not do.

An advocate does not get involved for their own sake. Hopefully, their advocacy helps their own pain care, but that should not be the main goal of their actions.

Advocates should not take on the role to “get even” with someone, whether it’s a doctor, hospital, politician or another advocate. Far too often people get mad because they can’t get the care they need and speak up only to get back at whoever they think wronged them. Being a patient advocate should not be at the expense of others or to seek power and influence.

There are many types of advocacy, but what will ensure success and make a difference is to avoid the pitfalls of advocacy. If you are mentoring others, be sure to have strict confidentiality as health topics are a very sensitive subject. Refrain from abusive conduct, even if the people you are assisting are abusive. Remove yourself if that becomes the case.

Some people just don’t want the help or advocacy you offer. It could be a cultural conflict, mental issue, or just that you don’t gel with them for a variety of reasons. Be okay with that, let it go and help those who actually want your help.

You should be trustworthy and honest in all the actions you take. An advocate is willing to disclose all personal conflicts of interest to those they are advocating for and with, so that any perceived or actual biases are known. We should not ever compromise our personal beliefs while advocating for others.

Advocacy is not creating more conflict or strife. A good patient advocate is going to work to solve problems, not create new ones. Advocates should not try to change what is working, but instead should work to stop unfair practices, abuse, and the under/over treatment of patients. We need to increase treatment options, services, and proper and timely care.

When we remove those barriers, advocates increase society’s ability to offer full opportunities for pain sufferers.

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 FoundationShe 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.

How to Be a Patient Advocate

By Barby Ingle, Columnist

People in the pain often get ideas about what they can do to help advocate for the pain community, such as a petition drive or letter writing campaign. Some of these ideas are great, but when they try to implement them or get others to, things don’t work out -- there’s little participation, they get discouraged, and that is the end of that.

Over the past 10 years as a patient advocate who is very vocal and seen many ideas come and go, I have learned not to spend too much time doing what I know doesn’t work.

Is this fair to others in the pain community? I think so.

About 7 years ago I wanted to make a difference in the disease community of Reflex Sympathetic Dystrophy (RSD). I wanted to get bills passed to require mandatory education in RSD for providers. It would have to be a state-by-state process, which would take time, money and dedication, with no guaranteed results.

I started in Virginia by reaching out to a state legislator. He met with me through Skype, and then had me come to his office. I learned that anytime you want to mandate anything, it is very difficult to get passed into law. The legislator suggested I work with the Virginia health department. I had multiple meetings with state health officials and managed to get RSD information up on the health department's website, as well as over 10,000 RSD pamphlets printed and spread throughout Virginia. It was amazing. I then set my sights on other states.

We needed to raise funding for the printing of pamphlets for other states. A woman called and said that she saw our request for donations, but before she donated she wanted to make sure that this was not another fly-by-night idea. She was right to ask, although I was slightly offended that my hard work, volunteer time and dedication would be called into question.

In the end, we couldn’t raise the funding needed to get this accomplished. I was very sad, but had to admit my great intentions could not come to fruition because I was not able to raise the support or funding it would take. People loved the idea, but didn’t want to help physically or financially.

I have grown very leery of petition drives for similar reasons. The chances of a petition changing something major is almost zero. Even when over 80 pain groups came together this past year to help guide and make changes to the CDC opioid prescribing guidelines, it was not enough.

We did get one pain patient representative added to an advisory "stakeholder" group, which gave recommendations to the CDC's "Core Expert Group" committee. But that committee already had in mind what they were going to do, and unless we got someone on the Core Expert Group, we were not going to change their minds or the guidelines. Thousands of people in the pain community also wrote letters and signed petitions to the CDC. It didn’t make a difference.

What can we do to change this?

There has to be a way to harness the energy and passion in the pain community that is effective, efficient, and useful. Otherwise the pain community will continually be run over and ignored.

I believe we have to get into legislative offices. Today, this week, or this month, make an appointment with your state or local representative -- especially if they are on a legislative health committee. Go see them in person. Tell them your story. Tell them why proper and timely access to pain care is badly needed. How you are counting on them to support future legislation that is supportive of pain patients.

Tell them that you are paying attention, not just when there is a bill up for a vote, but every day -- because you are in pain and have special needs every day. Paint your story for your legislator so they will remember you when they are in the backrooms making deals before committee hearings.  Make them remember your face, your name and your story when they are deciding what bill to pass and how it will affect you.

Put a face to your disease and a face to chronic pain. As a 501 (c) (3) non-profit leader, I cannot say you should vote for this legislator or against that one. I approach legislative needs with each legislator not caring what aisle or political party they belong to. All legislators can help us because they are all in a position to pass laws.

Realize that everyone has an agenda. Which is most noble? The pain patient trying to do something for themselves so they can have more productive lives; insurance companies that lower the cost of healthcare; drug and medical device makers that are investing their time and money into treatments; or the providers we rely on to gain access to those treatments?

Become a person that the legislator knows, become the face in their thoughts when pain care comes up for legislation. Put a human in the process, so that the legislator sees that this affects people they know.

Patient advocacy groups have formed coalitions, such as the Consumer Pain Advocacy Task Force. These coalitions are planning and implementing strategies, and working together to make change as well. Professionalism and diplomacy are keys to their work and they need to be done by all in the pain community, whether you belong to an advocacy group or if you are working on your own.

Advocating with aggressive anger to our legislators, pharmacy boards, CDC, DEA, FDA, etc. allows our emotions take over and it is setting us all back. Flooding an office with angry letters, emails and phone calls with non-sustainable facts does not work.

We need to have in-person visits before the legislation even comes up. This is the "off season" for most legislators. Reaching out now, before the legislative sessions start again, for a face-to-face meeting has a time -- and it is now. 

We also need to target our own representatives. Having people from New Mexico calling legislators in West Virginia is probably not going to change any minds in West Virginia. In addition, making comments that are unsupported by facts, such as claiming that more patients are overdosing or turning to the streets for relief, are not yet proven. They can be debunked and then we are seen as catastrophizers.

Please know actual facts and be able to site statistics with solid sources when you advocate.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation (iPain). 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.

Pain Patients Need a Champion

By Pat Akerberg, Columnist

As the national debate shines a spotlight on the opiate addiction and overdose problem, the divide widens between how the CDC/FDA/DEA and chronic pain sufferers see it. 

Is it an opiate problem alone that can be regulated or a pain management problem that needs to be addressed? The government and pain patients are both fighting to preserve life, but their vantage points on the risks and benefits of opioids are very different. 

As protectionists, our Goliath-like government agencies are reacting to tragic deaths caused by opioid overdoses with a "War on Drugs" approach. They have mobilized around a clear direction, ownership, and action plan – stringent prescribing guidelines that force physicians and pharmacists to curtail and deter patient access to these medications. 

But for millions of chronic pain sufferers, protective of their own survival, those guidelines now put them at risk of their pain being undertreated or untreated.  

Already marginalized by chronic pain, they can’t afford to lose more quality of life or the will to press on if the benefits of those medications are abruptly taken away. The human right of self-preservation and the oath to do no harm are at issue.  

Even though pain sufferers are unified in their opposition to many of these measures, without a clear direction or representation they haven't had any influence. Their input has been largely excluded by the government’s closed process, a top-down stance many view as misguided and cruel. 

With sporadic grassroots efforts, pain patients are pushing back -- sporadic because many are already overwhelmed trying to cope with their medical challenges.

When people who are affected by a blanket change push back, it’s because something was sorely missed by the change drivers.  The guidelines weren't communicated well, didn’t include input from the people affected, and minimized issues that could have many serious unintended consequences. Many in the pain community feel betrayed and abandoned.

While the David-like courage and bravery of patients moves me, I’m also one of many frustrated chronic pain sufferers concerned about making headway without a proactive approach. 

Maybe it’s time we borrow from the best change management practices used successfully in business.  These practices effectively mobilize the energies of those needed to make change happen.  Progress occurs only when several key factors are fully defined to get from “current reality” to “future state." Those critical factors involve:

  1. A clear definition of our unmet pain management needs
  2. A realistic assessment of our current pain management reality
  3. A compelling vision for future pain care  
  4. A transition plan to get there

When any one of these critical success factors falls short, no amount of reactionary rhetoric or emotional expressions from us will substitute for our own proactive pain management platform.  Our efforts to fight back will sputter up against a bureaucratic wall. 

The deficiencies in the change approach our regulators took frustrated our expectations that we’d be heard and understood, with empathy and dignity.

Expectations can backfire if they’re unrealistic.  When they operate unchecked, it means that we have assumptions, predictions, and underlying beliefs that something will happen or play out the way we hope and need them to. We’re attached to an outcome when we hold onto those expectations. 

But life isn’t perfect and systemic change doesn’t happen overnight.  Eventually we are bound to have an experience like this one in which the gap between our expectations and reality results in a disappointing thud.  A self-help quote describes that occurrence well: “expectations are the partner of disappointment.”

Trying to change their hearts and minds about us, we’ve worked to convince the regulatory, profit-seeking, and career promoting stakeholders that we’re credible and responsible, not addicts or malingerers.

But the more dramatic our attempts have been, the more we’re viewed skeptically. Taking that personally, we feel misunderstood, thrown to the wolves and without impact.  In self-defense, sufferers continue to dial up reactionary and passionate protests, hoping regulators will someday see that their guidelines don’t solve our pain management needs.  

Since hope alone isn’t a strategy, we should redirect our energies and stop giving our power away while emotionally bargaining over the legitimacy of our pain management concerns. We also need to stop seeking compassionate understanding and consideration from entities ill equipped and unlikely to offer them. 

The “recovery” community sums up that advice as, “you don’t go to a hardware store expecting to buy bread.”  Better to save our hopes for our families, friends, and support groups where the odds favor us. 

Likewise, in the context of systemic change regarding chronic pain management, our expectations have a better shot of being met by a credible coalition that represents us.  

First and foremost, a strong change initiative needs a champion who owns the challenge and drives a clear and comprehensive change management platform that sets the conditions for success.  Without that credible representation, we have no seat at the table, nor any accountability.

Our very real pain management needs present a clear role for advocacy groups to step up and represent.  There’s no shortage of would-be sponsors for us to recruit.  Pain Pathways estimates there are 21 pain advocacy groups, along with 39 other disease related advocacy groups. 

The arrow of purposeful action and accountability points to an urgent unmet need – a coalition willing to champion a change agenda that best represents our interests, including ways we can champion and support it. 

The regulatory agencies have their plan with solid representation.  Let’s face it, without our own platform we sit in pain, frustratingly sidelined.

Let’s regroup and start shopping elsewhere for bread.

Pat Akerberg suffers from trigeminal neuralgia, a rare facial pain disorder. Pat is a member of the TNA Facial Pain Association and is a supporter of the Trigeminal Neuralgia Research Foundation.

Pat draws from her extensive background as an organizational effectiveness consultant who coached and developed top executives, mobilized change initiatives, and directed communications.

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.

Patients Betrayed in Pain Management Debate

By Pat Akerberg, Columnist

I’ve often wondered whether the term “pain management” qualifies as an oxymoron.  It’s no secret that the use of opiates for management of chronic pain is a treatment strategy currently under siege – sparking polarizing debate, government intervention, and pushback by legitimate pain patients.

This is my 7th year of dealing with the intractable pain of trigeminal neuralgia (TN) in spite of many failed pain management attempts.  While interacting with hundreds of my counterparts, pleas are constant for alternative ways to effectively treat this notoriously painful disorder. 

Not one of them relishes the potential of being dependent on any medications that they take to manage pain and rightly fear the long-term negative effects that some medications have on our bodies. 

Others whose pain is tamped down to some extent with opiate medication are placed in an untenable Catch-22. They are surrounded by volatile uncertainty and shameful character judgments.

When leading neurological experts and research scientists I saw also shared their own frustrations about the lack of alternatives to or efficacy of most pain medications, my concern heightened.

Will I be left to needlessly suffer indefinitely while this controversy stalls solutions?

From my vantage point the pain management issue seems to involve at least four different issues:

1. Some abuse of opiates

2. Reactionary guidelines that further limit or curtail availability to legitimate patients

3. Multiple competing agendas thwarting progressive strides for pain management alternatives

4. Ethical imbalance placing profits, careers, and CYA (cover your ass) strategies over patient care

Unfortunately the current proposed CDC and FDA backed prescribing guidelines are an ill fated attempt to solve the first problem of opiate abuse (by some) by worsening a second problem for many legitimate patients already living severely hampered lives. This one-size-fits-all, closed regulatory approach upsets me (even though I’m not taking an opiate) because it excludes the input of those afflicted and prolongs suffering, adding more stressful setbacks to pain relief.

Ironically, the very agencies deemed to protect us from harm seem to be intent on a stance that inflicts it in varied ways.

Until we have acceptable options to abate pain (that don’t triangulate pain patients with their doctors/the medical system and the government) or put us at risk; we’ve been involuntarily forced into some part of this fight. 

This issue has been turned into such an embattled political conflict that even patient advocacy groups (with something of their own to protect) seem to be sitting on the sidelines avoiding the crossfire. Patients have become sitting ducks while others who share a stake in the chronic pain pandemic still gain by our plight. 

The third problem is about the forces that work against new research, medical institutions and companies stepping up the pace and availability of affordable new pain treatment alternatives. 

Haven’t they positioned themselves as stakeholders with missions to cure or improve the impact of diseases, disorders, and health threats that result in chronic pain and other debilitating effects?

One of the many forces in play is that rare diseases (known as orphan diseases/disorders) don’t impact enough people to make it financially appealing for drug companies to come up with targeted, affordable medications or institutions to fund research. 

As the lusty price-hiking grab of Big Pharma continues, insurance companies will keep upping their premiums and deductibles to protect their profit objectives.  While for us affordability is our burden.

Yes, the fourth problem is all about return on investment and profits weighted against some deemed acceptable number of us who will die sooner or suffer longer while living.

If you suffer from an orphan disease (like TN) you’re likely taking some off-label medication that wasn’t intended to even address your issue.

The National Institute of Health could overcome that lag to progress by applying its’ considerable leverage. It could require that research grants be granted based on collaborative initiatives, findings be openly shared across science/medical institutions, and research dollars pooled, so that discoveries and treatment innovations are accelerated for a win-win.

Why isn’t any of that happening now?  Political power and financial collusions, along with competition among stakeholders, are the short answers.  There’s no political, financial, academic, career, or ethically motivated profit incentive for open, unbiased collaboration to occur. 

As long as our disease centered (versus patient-centered), profit over patientmodel continues, collaboration is a direct threat to all special interests since they currently measure the success of their stake in advancing medical health by their own bottom lines, career progressions, and investor return.  

Until they can otherwise be held accountable to exemplary medical and just ethical standards, there’s no incentive to coalesce and dedicate their collective resources to resolving the pain management needs of millions of pain sufferers.   

It’s the medical/scientific version of our political underbelly, with pain patients involuntarily caught in its’ snare while progress sputters. The result is that effective pain management has been hijacked and diminished medically into a political football playing brinksmanship with the quality of our lives.

There’s so much wrong with how the whole “pain management” situation is evolving for us.  The real blow in all of this for me is the realization that pain patients seem to be left with no representation or clout.

Without representation, I’m concerned that while we’re the ones least able to deal with it; we’ll be left holding the bag to gain more attention, commitment, and reform for real pain management answers.   

I worry about precious time toward new alternatives wasted while the powerful lobby agendas, the government over reaches, our representation retreats, the AMA debates, and the profitable jockey to vindicate their approach.

Until then, it’s hard not to feel betrayed by the downward spiral in societal values, a slippery slope of collusion allowed to operate among some interests convincingly indifferent towards human suffering.

I really want to be proven wrong about pain management becoming an oxymoron.

Pat Akerberg suffers from trigeminal neuralgia, a rare facial pain disorder. Pat is a member of the TNA Facial Pain Association and serves as a moderator for their online support forum. She is also a supporter of the Trigeminal Neuralgia Research Foundation.

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.