By Terri Lewis Ph.D.

For months now, chaos has reigned in the lives of persons with complex illnesses, chronic and intractable pain. It’s breathtaking – we hardly know where to turn in response to the advancing hordes of disinformation, misinformation, and downright false representations about the lives of Americans who rely on the healthcare system to live and meet family and community obligations. The effect of this chaos is palpable – outrage, fear, frustration, confusion, anger, feelings of just giving up because it is simply too much. And increasingly some are doing just that – saying ‘enough’ and ending their lives.

We asked you to organize and mobilize and you are rising to the occasion. Groups are forming, planning is occurring, and while it’s by no means perfect, sometimes messy, it is action and it will sort itself out. Leadership is emerging, folks are stepping forward to help and by taking action, rage is converted to discernment, activity.

Why is it worth your time to complete this 31 question survey that was posted through National Pain Report and social media? Wouldn’t it just be simpler to send FDA a message or just respond to the questions they posed on their meeting link? Yes, absolutely it would. And you can. Or you can register to attend in person or watch this meeting from the comfort of your living room or bedroom.

But it is not just about you. And we have heard over and over again that nobody has asked you how you are affected by this crisis. So we are asking you to come forward from every state and territory to tell us how you are being affected by the most recent changes in your healthcare system.

While management of diseases and pain is very personal, the goal of this survey is to help us to understand the effect of the chaos that has been visited upon you and to communicate this to others in ways that it can be heard and cannot be ignored. By linking your comments to other data at the state level and the federal level, we can document harms and counter the misinformation and disinformation that is spread by the bots and trolls that manipulate and move regulators and policy makers who are making decisions that will negatively impact your lives.

The CDC Guidelines unleashed in March of 2016 served as the tail wagging the dog. While we believe that this was the beginning of profound changes, in fact they were the culmination of a quiet change management effort that began in 2012 in the state of Washington. States were quietly making exploratory changes to their pain regulations from 2012. The impact of this effort simply became visible to most of us in 2016 with the passage of the CDC’s Guidelines. And not one of these regulatory approaches to managing your health care looks like another. While the 2016 guidelines added yet another layer of complexity, chaos has been building for awhile and you have felt it in ways large and small.

Most of us would agree that we need consistency – but there is none to be found. Not at the state level and not at the federal level. The last federal election simply magnified the impact of the health care battles over rights to access and costs of care. Fifty states and seven territories have enabled various forms of legislation – but among them there are no consistent definitions or directives that make sense. And not one of these regulatory devices has built in ways to measure how affected persons are impact – good or bad. Where legislators believe the poison that prescriptions are the root cause of the street drug crisis, patients are turned into villains of the crisis. As prescriptions reduce, overdoses and deaths due to suicide are steadily increasing. So is the negative impact on you and your health care.

In this environment, physicians cannot properly care for patients – and so they are doing all they know to do – and that is to stop providing care until somebody figures this out. They will protect themselves from this chaos first because they must.

It takes about 30 minutes of your time to complete this survey (unless you write a book). All of FDA’s questions for the July 9 meeting are included into the survey tool. They are incorporated in a way that they can be compared to a variety of important questions about other pending changes to the system – the CMS2019 final rule that will take place in June of 2019, DEA’s proposal to downsize production caps (again), continuous changes to state regulations, and more.

Here’s a link to the survey.

I live in Tennessee – it’s a wasteland at the moment, but on a brighter note, patient groups are organizing and a palliative care law has been passed that we hope will finally help improve wider access. Conversation with our elected regulators is increasing.

Importantly, many of you qualify for palliative care (not the same as hospice or end of life care) for your multiple chronic comorbid conditions. Palliative care, used properly, will stabilize the ability of physicians to treat you through a supportive care delivery model. Tracking this across the states is one of the strategic objectives for this survey – documenting the fact that you are first, people (not villains or #$%&), who experienced a traumatic event, an illness, or a medical harm, and second, that these injuries left you dealing with lifelong diseases processes that must be managed. And one of the features is pain – in a variety of forms, chronicity, and unique expressions. This pain requires integrated care supports that is not uniformly available to you because your needs are not uniformly described or understood (chaos). And you have become the least important person in the room – and you know it.

This survey will close June 17. After that date the submissions will be analyzed into a summary of your experience across the nation, a state summary that compares your experiences to the operations of state laws, and a summary that will be readied for the Federal Register and Congressional Committees and their health care staffers. News releases will be readied for journalists who write about these issues. Human Rights Watch will be provided with copies so that they can continue to build their analysis of conditions of care in the USA. You will be provided with a copy of results for your personal advocacy efforts.

Estimates of persons with chronic and intractable pain range from 25 – 55 million depending on the source and definitions in play (there’s that chaos thing again). Medicare (2015) reflects that roughly 55 million people meet the definition of multiple complex chronic illnesses defined as two or more life-long disruptive progressive diseases. But we still have 17 states without consistent access to health care and in many states, hospitals and primary care and pain clinics are closing. Our experts are being harassed by DEA, because they framed the chronically ill as persons who are abusing the system.

We can continue to accept whatever is thrown at us. Or we can work toward making sure that services are provided appropriate for our use. It will not happen without evidence of your experience.

Either way, it is your choice.

Dr. Terri Lewis is the mother and the daughter of chronic pain sufferers. She is a critic of the nation’s health care system and is a frequent contributor to the National Pain Report.