A Better Way to Escape

Last week, I watched a PBS special about the 100 books America loves most (you can vote all summer for your favorites!). As I sat there, I tried to remember exactly how long it had been since I read a book. Too long, apparently. I couldn’t recall.

This was alarming to me. Books – actual paper books you hold – are such a fundamental part of my identity that I have put off cataract surgery for over a dozen years because I am afraid to lose the ability to literally bury my nose in a book. As a kid, I would lock myself in the bathroom for hours because no one would interrupt my reading in there. (In hindsight, I realize my parents knew exactly what I was doing and were kind enough to indulge me. Mostly.) I still wear my socks with the flying books on them.

So, I panicked, did a little research, and bought a new book. Then I spent an entire day over Memorial Day weekend – about 13 hours-- reading it. I rediscovered a few things between the pages:

Sleep

My reading day took place on a sofa under a huge window, so in natural light. The TV was off all day except during meals. No radio, either. The phone was in another room. I read and read and read until my eyes wanted to fall out. It was good to know I could still focus like that.

I went to sleep at a reasonable hour, too. 10 or 11, I think. And I slept right through.

That hasn’t happened for months. Even the days I do get to sleep on time, I usually wake up a couple of times before my alarm goes off. Sometimes it takes a while to get back to sleep. Sometimes I wake up with just enough time before the alarm that I know it’s useless to try to fall asleep again. Whatever the circumstances, I am exhausted when I get to work.

Not this time.

Eating

I am an emotional eater. Events of the last couple of years have proven this over and over again, to my detriment. Like so many of us, I eat for comfort. Diabetes is not kind to this habit.

But books are. I can fall into the pages of a book as easily as I can fall into a bag of chips. And I don’t eat when I read. It messes up the book. (I am meticulous about my books. I never break the spine on a paperback and if the corners of pages in a book at the bookstore are folded, I will search through all the copies until I find the one that is least imperfect.) During my reading day, I only ate when hunger drove me to it, and only enough to not be hungry anymore.

It was always that way. Why did I forget that?

Stress

This one is the most important.

My attachment to books started during my recovery from meningitis. While re-learning to walk, the only thing I could do where I looked like all the other kids was reading. From then on, I consumed every book put in front of me, for better or worse (my mom handed me Anna Karenina when I was 9. I hated it, but I read it. Only took three years. Oedipus Rex was much faster. I was 10.) It was a great escape from a very hard life. Problem was, the hard things kept on coming, so I kept on reading. And who was going to tell a kid to stop reading so much?

It lessened a little for grown-up things like college and, well, work, but books still allowed me the space to handle my problems on my own schedule. And that’s what I lost when I stopped reading. TV can be entertaining. Podcasts, too. But you can never lose yourself in digital media like you can in a book. Everything is handed to you. There is no exercise of the consumer’s imagination in digital.

I admit it’s a fine line between allowing yourself to be consumed to the point of not dealing with your issues and using the escape of a book to help. All I know is that my anxiety level dropped by about 25% between the recovery of self and the space given by just one day (a day when nothing else was required of me and I wasn’t putting off other responsibilities). I am really glad to have that back, and I can see that books will remain important to me for reasons beyond the story.

Just like brushing your teeth

One of my friends recently asked me how best to manage a chronic condition.

During the transition between noncompliance and acceptance, I clearly remember that all I wanted was to get to the point where I could relegate my regimen to a tiny corner of my life. I would be “normal” and it would become so easy and routine that the whole thing would take up no more of my attention every day than, say, brushing my teeth. I’m here to tell you it’s possible!

Well, sometimes.

For a little while, anyway. Or even a long while.

The reality is that it is possible, but it’s hard to maintain. You can go for years sticking to the plan you and your providers have devised. For me, that means nutrition plan, exercise plan, logging everything (logging covers different categories for different people -- symptoms, blood sugars, food intake, whatever information you need to understand the patterns of your condition), and several appointments every year. And when I’m on it, I’m really on. I feel strong and powerful, motivated, and present in all aspects of my life.

But then your condition begins to feel neglected, so it starts to have a tantrum to make you pay attention again. After all, no one likes being relegated to a brief bathroom routine twice a day. You get sick, or your biorhythms change (mine tend to do that as soon as I have settled into the right insulin dosage), or some event in your life overwhelms you with stress – difficult project, death in the family, it could be anything, really. That powerful feeling begins to fade, and your energy goes with it. You start to channel the energy you have into surviving that situation, and the easiest place to draw from is the voluntaires – the time you take to exercise or monitor or whatever it is you do to care for your condition. You say to yourself, “I will go back to it as soon as X is over.”

I went through this very recently. In fact, I’m just starting to get my feet under me. For two years, I followed my regimen so closely, I lost 30 pounds and my kidney disease started to actually get better (this never happens). Then I faced a situation where I had to take a project at work that I didn’t want. It was either that or lose my job. And my health insurance.

I told my boss on my first day that the situation was not going to be sustainable due to the location, commute, and an overtly hostile work environment. First, I stopped cooking, which was fine because I could always use frozen meals. Then, I stopped exercising because I was just so tired when I came home, I needed to catch up on sleep. (It’s not healthy to exercise when you’re exhausted, is it?) Finally, after about six weeks, the stress finally started to get to me. My blood sugars started swinging, which made me feel sick. There’s no predictability to how stress will affect blood sugar, so you’re always running to catch up. Functional is about all I could manage at that point. It got so bad that I asked one of my providers to write a letter stating that I absolutely could not work in that environment past a given date.

In real life, there is no way to stop the clock and hit reset. You still have your job, your family, your house, your car, school, whatever myriad responsibilities take up all of your time. Recovery has to be one baby step at a time. It’s taken me three months to get back to about 50% level of effort, as they say in my industry. I go back and forth on the nutrition plan. I cook, but I can’t stay away from sweets. I exercise the way I did at the beginning of my good stretch – cardio only. I have given up logging altogether.

The only element I still follow to the letter is seeing my providers. In fact, I have asked them to shorten the time between visits from four or six months to three. I need the external motivation, and they need to know what is happening. I expect that there will be a considerable delayed impact to my bloodwork. I live in fear of my kidneys regressing. However, I will not borrow trouble.

Instead, I will adjust. I went from little exercise to cardio and weights five times a week (exercise is the magic elixir for blood sugar control). I can do it again. I went from eating out half the time to cooking all but twice a week. I can do that again, too. I may not go back to logging, at least not formally. I hate it too much, so I would rather spend my effort on the first two right now. The other thing I will not do is dwell on the progress I have lost. What’s the point?

No, I will keep dragging my monster up the mountain one baby step at a time. One foot in front of the other until I reach peak performance once again. I will hand it my toothbrush and enjoy the view until I fall again.

To ER or Not to ER

When I was in high school, my mom made one of many trips to the emergency room (ER) with a blocked intestine due to Crohn’s Disease. This visit was particularly memorable because her doctor was out of town and the ER staff was inexperienced in what was then a fairly new treatment – total parenteral nutrition. They inserted the line into her vein in the wrong direction. Let’s just say it was painful and unpleasant.

When her doctor returned, he told her that if she ever had to go to the ER while he was away again, she could tell them how to treat her and they would be legally obligated to do that. I have often wondered how that would work since it is only lately that providers have started really including patients in treatment discussions. (Let’s face it, ER doctors in the mid-1990s would have not taken patient instructions well. Even now it would be . . . unwelcome.) I’ve researched the doctor’s advice from time to time, but could never find a legal authority a process like that would fall under. It took a combination of laws and a discussion with a friend to figure out how it would work.

EMTALA*

The first part of this process is a bit of history, unless you are one of the 15% of chronic and autoimmune patients that still don’t have health insurance. For that 15% and the insecurity of the future of healthcare at this moment, I’d like to introduce you to the Emergency Medical Treatment and Labor Act (EMTALA), which bars hospitals from turning patients away if they can’t pay. (Keep in mind that this story takes place in the 1990s, when uninsured rates were much higher.)

Back then, and even now without insurance, ERs are not obligated to treat us unless we are about to die. It’s a common misconception that EMTALA says that all you have to do is get to an emergency room and they will fix you up. First, EMTALA only applies to hospitals that participate in Medicare. Second, the emergency room is only obligated to screen you for an immediately life-threatening condition and stabilize you.

That being said, EMTALA still has some juice if you are experiencing an emergency. Pair it with the next law, and you should be able to get what you need.

The Doctrine of Informed Consent

If you do decide that the ER is the best way to go, arm yourself with knowledge of the doctrine of informed consent. Basically, it means that, as long as you are mentally competent, you can refuse any treatment the emergency room proposes.

In my mom’s case, that means that if the ER doctor was not inclined to treat her the way she wanted (I believe a blocked intestine qualifies as a immediately life-threatening condition), she could keep refusing until they arrived at the right treatment for her. Or at least they were prohibited from subjecting her to a treatment she didn’t want.

There are definitely times when the ER is your only option for a chronic or autoimmune condition in crisis (i.e. the “cardiac incident” I had once because I messed up on my own medication and almost stopped breathing at work, but that’s a story for another day.) But in my experience, rushing, overworked staffs that have to literally work miracles with what they have, are an option of last resort, to be avoided unless a call to your provider (or whoever’s on call) results in an inadequate or unsuccessful course of treatment.

If you have to go, keep in mind that you are not entirely at the mercy of providers you don’t know. It’s hard to speak up for yourself in a situation so bad that it requires an ER visit, but you know what’s best for you and you have a right to receive the care you know you need.

P.S. Informed consent applies to all care – surgery, therapy, treatments prescribed by your provider in his or her office. If you don’t like the direction in which your care is going, you can always say no and discuss an alternative.

*(no, you didn’t miss a character in the Lion King.)

Show Up

Every election is determined by the people who show up.

 – Larry J. Sabato, Founder and Director of the University of Virginia’s Center for Politics

I have a confession to make. I love politics. The strategy, the motives, the players. It has always been a favorite challenge to take what a politician says and strip it to its fundamental message. If I can do that, I can see where we are headed. I am aware of what kind of weirdo that makes me. Good thing I live in a city where we are all that kind of weirdo.

It’s harder now. Everything changes fast, and the politicians I was sure of (on both sides of the aisle) are no longer who I thought they were. But our system is stronger than a few years of turmoil. The good news is that we can change things if we are unhappy with them. The bad news is how often we don’t.

I think we look toward Washington and all we see is hallowed halls of power, “the swamp.” We tend to forget that we are the ones who put them there. We are the ones who pay their salaries. We are the ones who can fire them.

If we’re so unhappy, why don’t we fire them?

•  We hate Congress, but love our Congresspeople. We love them just because they’re ours. Most of the time, we have no idea what they have voted for or against, or what kind of impact their actions have had. If we can’t look past the surface of our Congresspeople, we will remain stuck with ever-worsening gridlock until it breaks the system. For those of you who don’t think that’s such a bad thing, consider what will come to fill the vacuum. Time to start thinking about whether your representatives have done what you wanted them to do.
• The states. The state we live in controls how we vote, for both state and federal lawmakers. Many of these states have unfairly gerrymandered districts, discriminatory voter ID laws, selectively limited polling places, and several other ways to keep you from casting your ballot.
• We don’t show up. In the latest presidential election year, turnout was about 60%. The 2014 midterms didn’t even break 40%. Whether it’s apathy, time constraints, distrust of the system, or any one of a million other reasons, we just can’t make it, so we end up with something far from majority rule.

Speaking only for myself, all I want is a level playing field. If the majority of voters in this country is on one side of an issue, that’s the policy we should have. A level playing field shouldn’t mean the majority of who shows up, it should be the majority of all of us. But our lawmakers know that we don’t have the time to pay close enough attention to hold them responsible when they vote against our interests. Some of them count on that.

How does this apply to healthcare?

One of the greatest gifts the Affordable Care Act (ACA, or Obamacare) has given us is a change in perspective. Despite it’s unpopularity when first enacted, in an incredibly short time (eight years), American collective consciousness has come to view good health not so much as the benefit of a good perk at work, but as a fundamental right. There’s a reason the Declaration of Independence lists “life” first among the unalienable rights.

Many of the lawmakers in office right now aren’t going to protect our right to healthcare. Having failed an outright repeal of the ACA, they have decimated its funding and plan to allow states to offer plans that gut the 10 essential health benefits that assure we won’t go bankrupt from our medical bills, among other things.

There is a solution.

To borrow a phrase, vote them out. If your Congressman or Senator is one of the ones not listening to the majority who want healthcare protected, fire them as you would any other employee who refuses to put your priorities first. Register. Get your family and friends to register. Explain to them that we can’t allow ourselves to be represented by people who can hear our stories and still refuse to do everything in their power to protect our right to live.

I am not saying that everyone has to jump wholeheartedly on the ACA bandwagon. It was never a perfect solution to a complicated problem. But it’s what we have, so it’s where we start (not with rescinding CHIP funding and funds to help with patient delivery systems).

Primary season for the 2018 midterms has started. If you would like to register to vote, or help others register to vote, the following can help:

• For voter registration deadlines by state: https://www.vote.org/voter-registration-deadlines/
•  To make sure you are registered to vote in your state: https://www.headcount.org/verify-voter-registration/
•  For our first-time-eligible voters: https://www.18by18.vote/
• https://www.letamericavote.org/
• https://www.headcount.org/organizations/
• https://www.vote.org/

Oh, For The Love of Cheesecake

I was about halfway through writing this week’s post and making something for the office bake-off when I realized that it would have been my mother’s 69th birthday today. Not only that, but the thing I was baking was her secret recipe cheesecake, which I hope will win me a glitter-covered wooden spoon tomorrow. (I swear you’ve never tasted anything like it. The cake, not the spoon.)

Instead of finishing the article, I would like to take the time to pay attention to how I feel right now. Mom was a chronic patient herself and an integral part of my development as a self-advocating patient. I miss her every day. Sometimes it’s gentle, happy memories, and sometimes, like today, it’s sharp and sad.

In the past, I would beat sadness into submission. It was a defense mechanism once. I have a lot of those, even though I don’t need most of them anymore. The problem is I don’t know what to do with them now. I don’t enjoy letting my emotions out to play. It doesn’t feel good and I don’t really know how. But delaying the emotional inevitable works about as well as neglecting the upkeep on your car. There’s always a reckoning.

So, please forgive the delay. For the first time in a long time, I want to see what happens if I just sit here and let myself feel.

Reluctant Parent of an Unruly Medical Condition

I went to happy hour last night. That shouldn’t be such a statement, but it became one when I realized I hadn’t gone to a non-work happy hour in forever.

I am lucky to have all kinds of friends – single, married, divorced, with kids and without. On the way home I found myself asking a question I had heard from most, if not all of the parents: where has my social life gone? My job didn’t require overtime, and this blog isn’t overly burdensome. No, it wasn’t those. It was the giant monster-baby in the room – my condition. And that’s exactly what it was. My monster, which had seemed manageable in adulthood, had regressed into a big baby. Before it had been something of a companion, now it was somewhere between an infant and a toddler. I have to feed it. It wakes me up in the middle of the night, interrupts grown-up activities, and acts out when ignored. I don’t even get baby hugs to balance the frustration (Just because I didn’t want kids doesn’t mean I’m not close to several. I know the value of a good baby hug, even if it is a monster-baby.)

Like so many other chronic conditions, this one can just suck your time and energy. Even before I went off the rails of my regimen, I spent hours a day exercising, logging food, and meal planning. I sacrificed an entire half of my weekend every week to make sure I had healthy meals for the week. And if my control didn’t fall into the right range, the first symptom was exhaustion. Who wants to go out when you can barely make it through the work day?

Time and energy aside, I had another issue many parents – and chronic patients – experience. When parents’ focus changes to their kids and when people who weren’t sick before suddenly are, sometimes people disappear. They don’t know how to fit in to their friends’ new reality, whether it is a baby or a condition. They don’t know what to say. I didn’t really notice when I needed all the time I could get to wrestle myself back in the right direction. But as I have gotten better, I have realized that several people I used to see regularly have disappeared -- complete radio silence for six months or more. I can honestly say that’s never happened before.

Turns out I’m the communicator. With a few notable exceptions, I’m the one always reaching out to friends to see how everyone is doing, to initiate plans to hang out, and even verify that they are still free for whatever event it is. As I struggled, I had even less time and energy than usual, and my outreach fell by the medical wayside and I lost touch with many of them. I reached out to the ones I missed and let go of the ones I didn’t.

Perhaps it was a blessing. As with everyone else who consider themselves spoonies, my time and energy are very limited. Maybe I was wasting it on people who weren’t true members of my support network when I needed them. But that left me with just a handful of options to get myself out of my apartment, and social isolation can feed the negative emotions I was pulling myself out of.

For parents of human babies, this kind of gap is often filled by other parents, with whom they now have a lot in common. It’s a little harder to find the other parents of monster-babies. Can’t really tell by who’s pushing a stroller, and I know most of my existing friends don’t have one. I’m working on that, trying to expand into my local patient advocate community. Until then I will stick to the ones who are willing to support me while I try to corral my tantrum-throwing monster-baby and trek back to my life.

When A Word Is More than Just A Word

Language is important. Every issue, situation, and event has language to communicate the story around it. Healthcare as an issue is no different. For example, “chronic illness” is a common hashtag, but you will rarely see the “illness” part used in my posts. That is intentional. I prefer "condition". There are negative connotations like victimization and helplessness that come with "illness". I try not to write to that.

Language may be part of what's wrong with the discussion around health and healthcare. During the last presentation at the Lown Institute Conference this year, Dr. Viktor Montori pointed out that we talk about healthcare as an “industry.” It’s such a cold, harsh word to describe a world whose goal is something as vibrant and vital as life. As Dr. Montori said, if doctors are not treating patients with kindness and care, they are missing the point.

I agree, and I am lucky that all of the doctors I see more than annually do treat me with care and kindness. But I would like to take Dr. Montori's concept a little farther – to the insurance companies, researchers, and yes, the politicians.

Healthcare is unique in the pantheon of political issues. There is no other that poses inevitable mortal risk to so many, which gives it intimacy and urgency. When we were going through the attempted repeal of the ACA last year (twice!), I stayed up to watch the votes because I would not be able to breathe easy until I was sure of the outcome. Even now, I wonder whether those in the administration who continue to chip away at it or those in Congress who won't bring stabilization bills to the floor consider that they are literally sentencing theirs or their boss's constituents to death. People die when they can't get the medical treatments they need.

I know I’m using harsh language, but this is reality and to use more diplomatic language is to lessen that reality. And when people are dying, what right have we to make it easier on those making such impactful decisions?

I think we can change that language. George Orwell said, "But if thought corrupts language, language can also corrupt thought."

He was right. Language is powerful. The words we use reflect how we think. They can reveal whether someone is an optimist or a pessimist, their unconscious biases, and even where they've lived.

If we change the language we use to discuss healthcare, we can change the way we think about it. We can make it so that the people who make the decisions that affect our lives on such a fundamental level start seeing us not just as a policy or the price of a drug, but as us – people just like them, with lives and families, triumphs and setbacks, who feel love and hate and fear and curiosity. They are us but for faulty biology. If they can realize that, we will find their empathy, and empathy is what creates common ground.

It's going to take a while. The Oxford English Dictionary usually waits for 10 years of evidence of usage before it adds a word to the dictionary. But as many of us as there are, and as prominent an issue as healthcare is, I don’t think it will take that long. We should start small, maybe by deleting “industry” from the discussion. If we can stop talking about it in terms of profits and losses, we stop thinking about it in terms of profits and losses. Which might open the door just enough for empathy to fill the gap.

How Many Eggs in Your Basket?

I am one of those people who puts all their eggs in one basket. The more important the issue or opportunity, the more laser focused I become on the one path I want to take. I get all spun up and excited, whether it is likely to work out or not. Sadly, most situations seem to end up the latter. Like the latest one.

For Type 1 diabetics, there are a lot of elements to control. There are also a lot of options to choose from: long-acting and short-acting insulin, separate or mixed; blood sugar monitoring devices, either by finger (or other body part) prick or continuous glucose monitor (CGM); and insulin delivery systems, vial and syringe, pump, or even an inhaler.

I have never been one to pursue the latest gadget as soon as it comes out. I don't like to be the guinea pig, and if others are willing to weather the glitches before I have to, more power to them. It took a long time for my doctor to convince me to get a pump, but that was the only major change I made from the basics chosen for me at diagnosis. I tried a few CGMs, but they never worked, and I was happy with the regular finger prick method. Until recently, that is.

My recent detour from my regimen has resulted in progressively worse control, and I was starting to feel desperate, mostly because I no longer understood how my body worked. None of the biorhythms I had learned over the decades applied anymore. When one of my providers suggested a six-month-old technology that would intuitively keep my blood sugars in a good range, I dumped about two dozen eggs into that basket. It would be easier and quicker than any other option.

Once I made the decision to go forward with the combination pump and CGM, I wanted it now, which turned me into a bit of a Ms. Hyde. I am not entirely proud of how I handled some of the communications involved, but everyone came through for me (shout-out to Blue Cross Blue Shield CareFirst Administrators, who approved my new device in less than 24 hours even though I had six months on my old pump warranty. Never thought I would say that.).

I spent a few hours getting trained on my new device, setting it up and navigating it, putting all the pieces together and putting them in the right places on my body. And then, and then . . .

Not once did it occur to me that it wouldn't work.

Even though not one of the previous attempts to use a CGM had worked, I just couldn't accept that it wasn't working. I tried for over a month, tweaking the tech, moving the glucose sensor, but the CGM just wouldn't read accurately, and even when it did, the pump couldn't keep up with its readings, so my blood sugars remained high.

Well, what now?

Cheat, that's what, at least as much as I needed to. If that word is uncomfortable, think of it more as making my own rules, something at which I excel.

I moved the glucose sensor to an area on my body not approved by the FDA and turned off the artificial intelligence (AI) part of the tech, which was supposed automatically adjust my base rate insulin. Suddenly the readings, while still high, were looking a lot more accurate, so I let it run another week to make sure it wasn't just one accurate sensor. (It wasn't. ) Well, that was exciting. But when I tried to turn on the AI again, the whole thing malfunctioned, including the sensor. Not so exciting.

I theorized that the problem was either that the AI was based on information I had entered that no longer applied or that the pump itself was broken, but no one at the manufacturer knew enough to help me figure it out. My only option was to go back to basics, basics I hadn't needed to employ since my first pump in 2001. I started running fasting tests to figure out what my true insulin dosage should be.

And that's where I am now. If I got it right, I will try talking again with the manufacturer to see if they can answer my questions about why the AI doesn’t work when all the other parts do. I still hope I will get to use the AI eventually. It sure would make life easier. But for now, I will keep the two halves of my new device separate: one half proven tech upgrades (the CGM) and one half methods that have been around since the first injections (manual insulin calculation).

So please, try not to do what I did and assume that every new device will be the only solution to problems that have been effectively addressed for decades. Keep an open mind and see more than the easiest path. I wouldn't want anyone else to end up with the disappointment of a basket of broken eggs.

Some Nights

"Some Nights" by Fun. (2012) 🎶

Not to be morbid so soon after my post about fear, but for a long time, I was fairly sure I would die before I turned 60. This was one of the cornerstones of the overly strong mental defenses I developed in my teens and made insurmountable in my 20s. What was I supposed to think with all the diseases I had, including kidneys that only operated at about 50% at the age of 29? And if that were true why bother? With anything?

I unconsciously built my life around that concept. I didn't allow myself to commit to much, not people or activities or work. I never thought about buying a house. I didn't care much that work was a job and not a career. For the life of me, I could not visualize where I would be in five years. I used to tell people it was because every time I tried, everything would change. But it was really because in five years, I could be dead, so why bother to plan?

Then something strange happened. The chronic kidney disease – the one most likely to kill me – started to get better. When I was first diagnosed, I was led to believe that I was most likely on a slow decline toward dialysis and then a transplant if I could get one, depending on how stable I could keep myself. Ten years later, was that not still true?

Generally, it was, although studies were starting to show that if a patient could stabilize their kidney function, they could go on at that level forever. However, there was no evidence that people who reached stage 3 kidney disease ever recovered function.

None of us really knew what was going on. We speculate that I am hypersensitive to dehydration, which makes kidney disease worse, and as I began to exercise regularly, I also began to hydrate better, and my kidneys reacted well. Then again, it could just be that my body doesn't react as everyone else's does. The peripheral neuropathy of my early twenties is all but gone and I was that 0.03% of patients that reacted to amitriptyline with grand mal seizures. Whatever the reason, as my kidney function improved, my worldview began to change.

Maybe I wouldn’t die early. Maybe I would have time to leave some kind of legacy. Maybe I would have time let more people in. Or let any people in. On purpose, that is.

So what now? What do I stand for?

As they say in the title song, most nights I don’t know. It’s no coincidence that I started this blog shortly after I started getting better. Or that I switched employers for a more equal salary and better treatment.

The beauty of it is, I don’t have to know. Not really. Not yet.

It seems I might have time.

Detente

n. the easing of hostility or strained relations

I went to the World Congress’s Patient Advocacy Summit last week. It was part of four concurrent conferences addressing advocacy and clinical research. My guess is that the majority of attendees were from pharmaceutical and biomedical companies, both big and small.

For all of you patients reading this, I would also guess that your reaction to that last sentence was an almost involuntary stiffening of the spine and defenses locking into place. If you’re anything like me, your perception of the pharmaceutical industry is mixed. We are grateful that these companies are working on things to save our lives. Angry that the price often limits the most cutting edge of these treatments, without consideration of a patient’s financial situation or level of need. They also haven’t exactly been famous for including us in the development of their new products. Kind of like a toy company failing to consider kids. Doesn’t make a lot of sense, does it?

But I learned something last week. When I first read about the Forum, I thought the conference would be filled with people like me – civilian patient advocates. There were a few, but the patient advocates who filled the ballrooms in Philly were from the pharmaceutical companies.

Before last Monday, I didn’t even know that patient advocacy, outreach, or relations were careers in this industry, but there were lots of advocates there. And they weren’t just there to pay lip service. These advocates were sincere in their desire to close the gap between patients and their companies.

They acknowledged their own role in the disconnect between patients and researchers, and brainstormed ways to get patients more involved in clinical trials at every stage. One way was illustrated by the Parkinson’s Foundation, which has developed a program that works very well partnering researchers and patients. The Foundation keeps a database of advocates that the Foundation knows well enough to assign to specific studies when researchers ask them for patients who would be interested in helping to develop the study.

Pharmaceutical companies, academics, disease association representatives, and patients talked about adherence, and the barriers that keep patients from following drug regimens, including cost, access, even a little about mental health (which I believe is a big barrier to adherence – sometimes negative feelings prevent us from making the choices that are in our best interests.)

I met advocates and researchers from Pfizer, Sanofi, Novartis, Horizon, and Boehringer Ingelheim. There were a lot more I didn’t meet. When I did my follow-up, I got a better than 80% reply rate to my emails. They didn’t have to do that; there would be no consequence if they didn’t reply, and I promised no reward. This reinforces that their interest was genuine.

High drug costs are still a point of contention, but involving patients in the development of new drugs and therapies is a huge step in the right direction. If we patients can find a larger role in clinical studies aside from being subjects, we will all end up with more effective and efficient solutions to some pretty heavy problems. Who would say no to that?

Interested in growing the relationship between pharmaceutical companies and patients? Consider participating in studies to help others whose chronic disease patterns may look like yours.