Don’t call me partner

Warning: this may be the most contentious blog I’ve ever written.

That is because I am about to desecrate a sacred cow–the idea of patient as a partner in medical research. Lovely in notion, the reality is something quite different and nowhere has that been more clear to me than sitting in the audience at DPharm 2018.

Let’s start with the straightforward definition of partner:

And then let’s parse that definition, piece by piece. A person who takes part in an undertaking with another or others. I have no quibble with this. As a participant (I refuse to call myself a volunteer—I did not ‘volunteer’ for this shit) in a clinical trial, I am a member of a ‘team’ composed of researchers, other participants, clinicians, schedulers, nurses, sponsor, phlebotomists, techs, lead investigator, regulators; even payers.

Every member of this team has an important role to play and, as the term stakeholders implies, to a certain degree the outcome of our endeavor will impact each of us personally.

However, this is where the concept of partner starts to fall apart; shared risks and profits.

No one has more on the line than the participant. The skin in the game is not figurative for us, it’s our actual tissue. Best case scenario: we get to continue living. Worst case scenario: we die. Those are some pretty bloody high stakes and not in the same category as fourth quarter losses.

And now we get to the word profit. Don’t even get me started. I pay for the privilege of participation. Clinical trials are not gratis. The experimental agent/therapy is provided to me free of charge and sometimes certain labs or procedures; in the trial I am currently enrolled in echocardiograms are covered by the sponsor. However, everything else is billed to insurance, and I am responsible for deductibles and copays. Gas, parking, lunch—all paid for by me.

And then there is the physical toll. One hundred and one chest CT scans, 60 abdominal CT scans, 42 brain MRI’s.

So, let’s just get really real here and stop the pretense. I am not your partner and if I am, this is one heck of an abusive relationship. One in which I am bound to you by desperation, you call all the shots, and my only true power is to withhold. Where words like compliant and noncompliant are used to describe me. One in which your need for data is greater than my need for autonomy/personal safety. Sure, you keep me alive but you can also kick me to the curb if my cancer gets out of line again. And when and if you do, there will be nowhere else for me to turn.

We are codependent, you and I. That much is true. But we are not equals and certainly not partners. And we won’t be until you recognize that I am a human being. That I have hopes and dreams and family too. It is my bad luck that I also have cancer. I want to live and I will do almost anything to stay alive. You know that. But don’t exploit it. Do not continually ask me for more blood, more sweat, more tears, more money.

Instead, provide me with genuine support. Understand what I have sacrificed and compensate me for my time, just as you compensate healthy ‘volunteers’ in clinical trials. Being a subject in a trial does not mean that I am also subhuman so treat me with the respect that I deserve. Let’s ditch the condescension and start with transparency. Stop pretending that I am your partner. I know what a true partnership looks/feels like, and baby, we’re not there yet.

Does it get anymore ridiculous than this

Really? A little bit of radiation is good for us? Tell me the EPA is not really on board with this: ‘Calabrese and his supporters argue that smaller exposures of cell-damaging radiation and other carcinogens can serve as stressors that activate the body’s repair mechanisms and can make people healthier. They compare it to physical exercise or sunlight.’

Perhaps chemotherapy is also good for our skin and maybe cancer itself is character building. I sure feel a hell of a lot better about my 101 chest CT’s now. And those 37 chest x-rays? Just icing on the cake.

Read the whole ridiculous article here, at STAT. And weep.

It gets better

Which means worse. But I sure am acquiring some useful (not to me, but to my advocacy work) first hand experience.

Let’s start with the good news. I just spent three days in Boston wearing my ‘expert’ on clinical trials hat. First at DPharm 2018, an annual conference which bills itself as ‘Disruptive Innovations to Advance Clinical Trials’. Any conference with disruptive and innovation in the title has curb appeal for me. From an industry perspective, (pharma and biotech companies) it was both. From a patient perspective, we still have a long way to go. However, I am grateful that I and a small handful of other advocates (talking to you, Alicia Staley 😉 ) had the opportunity to attend and to sit on a panel. In addition, the networking aspect of this conference is amazing–lots of bright, fresh, enthusiastic individuals who are willing to both converse and listen. Hopefully I will have the opportunity to attend again next year.

Next up was an action packed day as a team member of the Patient Data Access Initiative, a nascent cross industry effort and a gig where I got paid for my expertise. I call this out because given my current economic climate, it is better than lovely to have monetary compensation in recognition of both my time and education/experience (ie: boots on the ground clinical trial participation). In addition, I went in skeptical–with data collection my first question is always ‘what’s in it for the patient?’–but emerged hopeful that this particular initiative might make certain things better/easier for us as well. Such as, tracking the number of scans we’ve had.

In the meantime, I was queued up for my new health insurance when it occurred to me that I hadn’t checked if MGH actually accepted it. Back in the day I understood this was something you needed to do but A. this was the first time in my life I was purchasing my own insurance (in my youth, I kept the same plan my parents got for me and then once I married, it was whatever plan was offered by the company my husband worked for) and B. I just forgot. This is my ongoing problem–this inattention to detail.

So I called the hospital late Thursday afternoon and guess what. As I was going through the Health Connector and getting tax credits, I could enroll in one type of insurance and one only. Two choices of plans—one with a $2500 deductible and $500 copay each time I had a CT scan and the other with a $1000 deductible and 33% of the CT billed directly to me.

This is why I held onto cobra as long as I did. The plans available to me through the Health Connector have lower premiums but high copays and when you are in a clinical trial, that sucks.

Anyway, all moot now. Because I screwed up I am now entering month two with no health insurance. Come November, I will be covered again. I am oddly calm about this. I don’t know if it is acceptance or surrender.

Once again, I cancelled appointments. Fortunately my scans and review were not until the end of October so it’s not that big of deal to move them to November. I should have enough drug to get by and only one prescription was due to refill. Ironically, it is my antidepressant. I am going to have to bite the bullet and pay full price.

I told my son that if I fall ill or am injured not to take me to the doctor. I was only sort of kidding. This is health care in America. Oh, and don’t forget. I will incur a penalty on my 2018 income taxes for the two months I have not had health care coverage. Hit me. Hit me again. Just make sure it’s not hard enough that I require medical assistance 😉

S.N.B.T.H.

That’s my go to complaint. It really should not be this hard. But it is.

Health insurance. Didn’t want to fess up but I’ve been without it this past month. Long story short, the assistance I was counting on per making my selection did not come through (not responding to emails is such an easy way to blow someone off) and when I showed up at the office in person instead (an hour drive, each way) I learned that A. I had missed a deadline and B. I needed to go back home and get on the phone with the folks at the Mass Health Connector anyway.

So….I cancelled my appointments for September and before I left the hospital, stopped by to see my clinical trial nurse. I should always talk to a nurse when I have an issue—no one is more empathetic, more pragmatic or less likely to take shit or no for an answer than a nurse. I then made arrangements with Alice to contact the sponsor to see if I could get drug even though I was not coming in for my labwork/echocardiogram.

Arrangements were made to have my drug mailed to me (not quite without a hitch–they forgot and it had to be overnighted) and I figured out (on my own) which policy would work best for the remaining three months of this calendar year–a higher premium, no deductible plan. As my income is 360.70% of poverty (yes) I qualified for a tax credit which brought my premium down by $127.00 a month.

I feel better when there’s something in my checking account, so I waited until last Friday, three days prior to the deadline, to choose my plan. Because the 23rd (the deadline you have to pay your premium by in order to get health insurance for the following month) was on a Sunday, I needed to get my online payment in by that afternoon. When I attempted to log onto my account, the system did not recognize me. I called back, and was offered two options—drive an hour to Boston to make a payment in person or wait another three hours at which time I was assured my account would be active. I gambled on the latter. Three hours later I still did not register and I placed another phone call to the Health Connector. This time I was again assured (and by now I was in tears) that even though it wasn’t working now, my account should be online by the next day, Saturday.

‘I don’t think you understand’ I explained to the woman on the other end of the line. ‘I am a cancer patient, I already had to cancel my appointments this month, because I had Cobra if I don’t get insurance by the end of this month I can’t get it until January, and if I don’t have insurance for next month, I will have to cancel my appointments again in October and will likely be kicked out of the clinical trial I am enrolled in. I need to know that this is going to work.’

I had a good cry after hanging up and a giant pit in my stomach. And, just as I’d feared, I was never able to access my account.

So I called first thing this morning only to learn that their entire online system was down and that I would need to call back later. I did, two more times. By this afternoon it was finally up and running and I spent an hour on the phone with a very sweet and patient representative. By the end of our phone call I was talking to someone else–an account specialist–as it had been determined that there was a technical error on their end–my billing account had never been activated.

I was given a case number, as this would now have to go into resolution. And I was now informed that I could have health insurance for October but only if I paid for November as well, even though the mistake was theirs. The reason being that the system would not recognize my retroactive payment as an active subscriber as we were past the billing period unless I paid for the next month as well.

Sigh.

The dollar amount for two months of premiums exceeds the amount I currently have in my checking account by several hundred dollars. As in, not doable. I have been told that my case will take several days to resolve. I have to hope that by then my alimony check will have arrived so that I can make the payment.

Caseworker y’all. It would be so great if I could worry about staying healthy and somebody else could help me with this other crap–all of which is a cumulative side effect of years of living with cancer as well as clinical trial participation. Cognitive, financial, emotional toll; unrelenting stress. The wear and tear of dealing with an advanced cancer for almost one quarter of my life.

It’s hard, really flipping hard. And until there are more supportive services in place, it’s not going to get any easier. As in, bucket list, my ass. I’m just trying to get by here.

A new day

I went to bed early last night because I was feeling depressed. Sleeping is generally one of the least harmful activities one can engage in while under the influence of overbearing sadness.

Depression is a funny thing. Never a welcome guest, it arrives unannounced, moves on in like it owns the place, and then proceeds to do whatever the hell it wants, including but not limited to, absolutely trashing everything.

Oy. And never a clue as to when it might decide to pick up and leave.

Well, I woke up on the same side of the bed as usual this morning and yet…something was different. By the time I got home from walking Lily and Kumo I realized that I was in a good mood.

Yeah. That was more like it.

Suddenly everything that felt like an overwhelming burden/impossiblity yesterday now looked a whole heck of a lot more like an opportunity today.

I got on my laptop and started cruising not just the classifieds but also websites for grants and residencies for artists and writers both. And as I did, I started to feel a wind in my sail. I can do this I said, and unlike yesterday, I wasn’t talking myself into anything. Nope. This was true affirmation, the can-do that is my usual MO. I am an overcomer. It’s not for nothing that ‘Adversity Expert’ is one of my tag lines on my current curriculum vitae.

Nope. Challenges are something I eat for breakfast. So let’s get back on track. 😉

So this is pretty fabulous

I want to share something wonderful with you. As a member of the ALKPositive group, I offered to start an Instagram page where photos and stories of ALK+ patients could be shared. I knew it would be special but I had no idea how special. Nor did I realize how moved I would feel as I transcribed these individual stories of suffering but also formidable grace and courage. So many beautiful faces. Almost all of them stage IV. Far too many of them young, including a number of women who were diagnosed either while pregnant or just after giving birth.

But what shines through the most? Love. Lots and lots of love. Please go to Instagram and check it out at alkpositiveworldwide. Follow us. If you are ALK+ (or if you have lost someone who was–this is intended to function as a memorial as well) and you’d like to be part of the wall, submit a photo to me as well the following information: Date of diagnosis, stage and age. And a brief statement about living with ALK+ lung cancer.

This is our opportunity to show the world the faces of lung cancer. Brave, beautiful, loving, living, finding ways to cope and always, always hoping.

Where do I go from here

It’s an interesting question contingent upon several prepositions.

See, I have a problem and the fact that it is a good problem (all things considered), makes it no less daunting. It would appear that I am going to live. Appear being the supposition here, as one can never be too sure. However, if the current trend continues, well, than I have at least a rather immediate future.

This is not something I planned on.

Nope. Stability is a concept I am only beginning to embrace. However, keep in mind, it remains a contingent, suppositional stability. Which is about the same degree of stability that one would experience sleeping in a tree.

Here are the basic facts. I am fifty-eight, almost fifty-nine years old. I am currently in fabulous physical shape but remain in treatment for advanced–aka terminal–lung cancer. That treatment has proved remarkably effective and although my cancer is not gone (70% response) it is gone enough. Better yet, I’ve had a sustained response to my current therapy–four years, three months and counting. The rub? At the moment, this is the end of the road for me–treatment-wise. When (do I dare say if?) this one fails, there is no other. Been there, done that as each time I’ve started a new treatment it has been with the understanding that there were not yet any others. Medical science has thus far managed to keep apace with my cancer but I’d be lying if I said it didn’t weigh on me–life with limited options.

So, there’s that. Cancer. And then there are the side effects of treatment. In my own case, the most debilitating have been the cognitive issues. When it comes to short term memory, I’ve got shit for brains. My own children were skeptical of the severity of my issue. That is, until my son August tried to teach me something. It took his repeating directions countless times and finally writing it down as well before I caught on. This concerned him enough he shared his experience with his younger brother and now I think they both have a little better understanding of what I face.

And although I am not nearly as anxious as I once was (perhaps an inadvertent blessing that goes with loss of short term memory), I am incredibly worried about finances.

I may be one of the few people with terminal lung cancer who does not qualify for disability. This is due to the number of years that had elapsed (stay at home mom) between my last paycheck and diagnosis. Alimony is my income; in an amount insufficient to actually get by and so each month my credit card bill steadily grows. And those checks stop arriving fifteen months and three weeks from yesterday.

I have started reading the classifieds looking for gainful employment. Unfortunately, my own work history is heavy on waitressing, with some other odd jobs mixed in. And although my work in advocacy should qualify me for something better, I am terrified that my short term memory issues are going to make any job difficult to maintain.

Take a deep breath. These are good problems to have.

I

can

do

this.