Patient Advocate Required

Two weeks ago I woke up with a blog post half written. Well, sorta woke up – I dozed my way through most of the night. But once my eye were open enough to read my email, I got sidetracked by this: “You Want a Description of Hell?” Oxycontin’s 12-Hour Problem. The article addresses decades of complaints from patients, and even doctors, that OxyContin – expressly designed for its easy 12-hour dosing – hardly ever lasts 12 hours (which leads patients into a dependency cycle, but that’s a matter for someone better versed to address). As I read the article, I have to admit I wasn’t astonished by the assertion that trials were manipulated to make the drug look better, that sales teams were pressured to keep doctor’s on the acclaimed 12-hour dosing schedule, the soaring sales figures, and that insurance can refuse to pay for more than two pills a day. It’s a vicious cycle that leaves the problems on the doorstep of the patient.

The week before that, the #BCSM twitter chat focused on the importance of clinical trials and the challenges in filling them, including the role of patients in accessing information and deciding to participate.

And then there is the ongoing issues related to Valeant Pharmaceuticals and spiraling drug prices. While their might be the most egregious example, they aren’t alone.

Pharmaceuticals and the health care industry in general operates in the public trust. There’s no mistaking their interest in profits – which both fund further research and line pockets. And there’s nothing wrong with making money in our “free market economy.” But somewhere there has to be a balance, doesn’t there? It seems to me that in due course a system without accountability will fall apart. As companies make decisions based on the bottom line, they will have to compromise somewhere, and it has little if anything to do with the cost of the product. Profit is the intersection of how many things they sell and the price at which it gets sold. When they up the price, some people pay more, some people don’t buy. But we’re we look at health care, that “not buying” can be – often is – a life or death decision. So as a society, we need to figure out what we can stomach: the compromise of an open market vs. more deaths.

But here’s what’s missing in the picture: the Patient Advocate. There are many types of advocates, including professionals such as nurses and social workers, who advocate for patients and early stage or non-patients who stand in for patients in a variety of settings. Advocates work in health care settings, in health care policy, and as educators and supporters, among others.

Conversations change when patients – people whose well-being and very lives are on the line – join in the dialogue, with a place at the table and full-throated voice. There has been much attention paid to participatory medicine, and it is an area that seems to be shifting rapidly, from the process of patient decision-making to the role of physician reviews in compensation.

Pharmaceutical companies are increasingly involving advocates in their work, from advising on trials to advising on marketing. But it isn’t mandated, or even rewarded. I wonder what would have happened with the OxyContin trials if an advocate would have been at the table, or how an advocate might have influenced the Valeant decision to up their prices. I wonder if trials would be filled more readily, whether, for example, innovations would come more quickly, priorities would shift, or if patients would be getting better information about side effects.

We must, as advocates, continue to push for a seat at the table. We must also remain educated and informed about both the science and the patient community. Participation in conferences and peer review keep us in touch with the emerging science, while involvement with organizations and support groups keep us connected to patients. As any scientific advocate well knows, we do not participate simply as individuals, but rather as representatives for the many.

 

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Call to Action – 2 Minutes of Your Time

 

A QUICK introduction:

• Nearly 100% of breast cancer deaths are a result of metastatic breast cancer (MBC).
• MBC research accounts for roughly 7% of research funds – including prevention of mets.
• Death rates have hardly changed in 30 years.
• Most metastatic research of one origin can help those whose cancer started elsewhere.
• No matter what you read in headlines, we are not even close to chronic disease status, let alone a cure.

As the White House begins to establish priorities for the Cancer Moonshot they are listening! PLEASE follow the link below to support establishing metastasis research as a Moonshot priority.

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The Wig

wigtowne.com

I haven’t been out and about as much as I’d like lately. Taxotere is taking its toll, and fatigue is reaching further and further into my life. What was originally a few days of being tired is now a week or more, leaving a week or so of time when I’m feeling good before the next cycle begins. I’ll take the days I have with gratitude, believe me, but it leaves little time for socializing. Most of my “good” week is spent running errands, catching up on my advocacy work, and getting some good writing time in.

But this was a good week – and I got out more than usual. I had a CBCRP meeting in Oakland and the bar mitzvah of a family friend.

For occasions like these, I spend more time than I should thinking about my head. It’s nearly bald – shaved close but not off – and I’ve been spared total baldness in favor of “fuzz.” The irony is that I gave up my long, curly fuzz for the short fuzz of a buzz cut.

There are practical matters to consider. Walking around bald doesn’t bother me, but it can be awfully cold! Scarves help, and it’s what I wear most days. But TSA can make me remove a scarf, and that’s a hassle. Plus there’s the shocked stares of pity by those around me, which I really can’t stand. So I decided to wear my wig to the conference. It got me through TSA in both directions, though it itches quite a bit and I worry about it moving around. To me it looks so obviously like a wig, but only a few in the know agree. I’ve had a number of compliments about my new ‘do, so I guess I’m fooling most of the people some of the time.

Fast forward to the bar mitzvah. It was the first time I’ve been in synagogue in a number of months, and while many friends know that I’m back in chemo, it’s not – of course – part of their daily awareness. The experience is very different – close friends do a triple take before they realize it’s me. I know my curls were my signature feature. I could have gone with a curly wig, and that might have made things easier. But I wanted something a bit different. Nothing drastic – I’m not the type to go green or blue, let alone pink, but something that could make an otherwise miserable experience fun was in order.

So I’m never quite sure how to approach someone. Do I start with an introduction, which seems awkward, but not as strange as the “who the hell are you?” look I sometimes get. Or do I let them go from confusion to concern to shock to recognition? I try to stay with John, to provide a context and make things easier…but even that doesn’t work. I’ll never forget the time, back in 2002, when a very dear friend was upset with John for bringing another woman to synagogue while his wife was sick at home – until she figured out that it was a wigged me.

It’s been an interesting social experiment, and one that I hope isn’t making others too uncomfortable. I’m no less sure what to do than I was 14 years ago, but I’m still here asking the questions!

When Faith Falters

For as long as I can remember my primary identity has been grounded in Jewish community. From summer camp to youth group, that is where I first felt I belonged. So much so that I went on to minor in Judaic Studies in college and focus on Jewish Communal Service in graduate school. Most of my 25-year career has been spent serving the Jewish people, and I have always felt lucky for the chance.

While Jewish peoplehood and Jewish faith are not the same things, I’ve generally taken my faith for granted. I work in a synagogue, after all.

When I was first diagnosed with early-stage breast cancer I felt the warm embrace of both the Jewish people and the Jewish faith. My community could not have possibly been more supportive and I never bothered to think through the distinctions. My connection to them was synonymous with my connection to God. I was grateful for the many prayer groups across the county who held me close, to the strangers who would never know more than my name, but petitioned God on my behalf anyway. And our faith seemingly prevailed. Despite the unpleasantness of chemo and a long, long surgical recovery, I was “cured” and able to leave breast cancer behind me, stronger for the experience.

Today, as a metastatic patient from whom mortality cannot be hidden, I’m less sure. My faith’s teachings are admittedly vague on the subject on afterlife, favoring a focus on what we can and must do in this life over speculation about the next one. We have this time, it seems to say – make the most of it. Enjoy it, but do good things, too. Not because you’ll get credit for it later, but because it’s the right way to be. So after all these years of serving the Jewish community, of trying to do good things, what’s left? I understand I may not die of breast cancer, but I will unquestionably die with it. And as each treatment fails me, my faith is a bit more compromised.

Are God and heaven and hell just human constructs designed to make us feel better, safer, about the mystery that is dying? Are they real in the absence of evidence, in the same way that we can’t see or capture the wind? Or perhaps they exist only for those who have faith. I don’t believe my faith will heal me, as much as I wish it could. Wonderful, saintly people have died of illness, and evil people have lived long and prospered. It’s impossible for me to believe in an interventionist God in a world like that.

Ultimately I believe, with rare exceptions that range from Hitler to the Dalai Lama (yeah, don’t see those two in the same category very often, do you?), that we mostly try to be good, and we succeed and we fail and we go on. I have friends, mostly Christian, who urge me to have faith. I understand why – from their perspective faith is the key to heaven. From mine, if there is one, it is good deeds. And I guess I believe that actions do speak louder than words…

But it begs the question of faith. As the lives of some many fellow bloggers and twitter friends are prematurely stolen from us, as my own health falters, do I have faith?

I remember when my mother in law was diagnosed with mesothelioma. In the months before she died we would have long conversations of faith. She had, once, believed in life after death, and had a notion of it being good. As her death approached however, just when she probably needed it most, her faith was gone, or at least well masked. She came to believe in nothing. I’ve always hoped in her final days, when she no longer had the strength to talk on the phone, that she found what she needed.

Which has me wondering what I need. Would this path be easier if I were a true, unquestioning believer? Would I find comfort in “knowing” what to expect after I die? Perhaps, if I could ever really move from thinking to knowing, a move the skeptic in me is likely to never make. In the end, it always takes me back to the very beginning. Within hours of being diagnosed the first time my anger at what this would mean for my loved ones burst forth. Never mind me, I’ve done bad things in my life. We all have. But to make my loved ones suffer for my actions, the unanswerable question always remained: what could Zach, at the tender age of three, have done to deserve this. That, in the end, confounds my faith; I have not found a way to put my trust in an unjust God.

I figure I have lots of time yet to work this one out…

Third Line Therapy

Memories of another angst-filled day of sitting in bed waiting for the side effects of my first round of chemo playing tug-of-war with what I know must happen, I ask John to bring me my pills.

“The new ones?” he asks.

“I guess,” I grudgingly respond. Really, this is me? Really?

OUTRAGE!

In 2012 METAvivor launched it’s “Elephant in the Pink Room” campaign to highlight that despite pervasive awareness of breast cancer thanks to both legitimate awareness campaigns and “Pinktober” marketing, what we still try to ignore is the reality of getting, living with and dying from metastatic breast cancer.

This morning I discovered that the campaign was essentially stolen by Kohl’s Department Stores to “fundraise” for Susan G. Komen and I am truly outraged! (Find the Kohl’s Cares campaign here.) First and foremost, it is disgusting that Kohl’s would impinge on a small non-profit organization’s pre-existing campaign in such a blatant and unethical manner, and do so to sell more products (like their “pink elephant” necklace) and direct “charitable” dollars to another, behemoth of an organization.

TRANGST

We’re familiar already with the term SCANXIETY – the persistent anxiety that surrounds PET, CT, Bone, MRI and whatever other scans they can throw at us. It pertains to the test itself, and to the wait — the hours or days it takes to get our results. But as I await the shipment of my new meds from the speciality pharmacy, I think we need coin a new phrase, TRANGST, perhaps? The angst that surrounds the change to any new treatment protocol, with it’s unknown side effect and unknown impact.

And that is where I sit today…

The Measure of Time

Last week saw yet another CT scan and, unfortunately, some progression: albeit slowly, my cancer is growing again. And so I am now looking at my third-line treatment. I must admit, its all a little surreal. I was going to be that girl who got years on each successive therapy, denying to odds and beating down the doors of a ripe old age. Strike that – I AM going to be that girl, just not the way I planned.

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I find it interesting that the patient track at breast cancer medical conferences always seems to start before the conference. So it was yesterday, when Novartis kicked-off the patient conversation. I am guessing about 60 of us, patients and advocates, representing 20 or more countries, met to learn more about living with metastatic breast cancer, and to talk about the challenges.

Novartis supported the international Count Us, Know Us, Join Us study (n=1273). It was fitting to share the results, such as they were, at the Advanced Breast Cancer Second International Consensus Conference, since in some way the need to count us was on the table two years ago when the conference launched.

This online, global study sought to explore the unmet needs and attitudes of metastatic (or advanced or secondary or Stage IV breast cancer patients) in an effort to identify gaps in information and support:

40% of MBC patients feel isolated.
77% are out there trying to find information.
55% feel that the information they find doesn’t meet their needs.
45% feel finding the right information is difficult.

In terms of support, 80% get what they need (I speculate that they are confusing need and expect, but who am I to judge?) from their oncologist, but most find that support from friends and family wanes over time.

No surprises for those of us living with the disease, and there was lots more. Each geographic region gave a localized report about this or other surveys that have been conducted. You can find results on the Count Us, Know Us, Join Us website.

While is seems that everyone is interested in us, remarkably, they actually haven’t counted us. Seriously. We don’t have global, or even local numbers and we don’t have registries (except in Switzerland) that track mets-specific diagnoses. And as MBCN President Shirley Mertz put so well,

“If you don’t count it, it doesn’t matter to you.”

Any wonder some of us feel isolated? Lots of work to be done here!!

After a series of briefings about the “on the ground” experiences and “best practices” from across the globe, we meet in regional teams to begin the work of tackling the challenges we each face. It was a wonderful opportunity to connect with other patients and advocates and be infused with new ideas. There is no question the task is great, nor that each region faces its distinct challenges, but there is more overlap than not. Here is the summary I presented on behalf of the US/Canada team:

What We Need

• Influence legislators to ensure research funding
• Increase percent of research dollars allocated to MBC-specific studies
• Change approach of health care professionals to be more “realistic”
• Insure patient access to information and support
• Organizational collaboration
• Breast Cancer on a spectrum (previvor – metastatic)

How We Get There

• Global Day of Action
• Continued Advocacy
• Adapt registries to account for (subsequent) mets diagnoses
• Pink ribbon needs to be longer, gradations of pink

All in all a very productive 1/2 day, but as usually I find the follow-up steps lacking. What we do with our ideas, how they become actionable, where the support might come from? We don’t ever seem to get to that part of the conversation. :-(.

In all the thinking I’ve done about advocacy in general, I find this to be a core challenge. It’s one thing to bring information and contacts back to your organization for future reference, but perhaps because I don’t have a single “home” organization, perhaps because I haven’t started my own non-profit to cover my one little corner of identified needs, I don’t think this is enough. I wonder what happens in the big picture and I worry about how many brilliant ideas get lost when we return home and the luster begins to fade…

How Does Your Garden Grow?

I started my day with quite a “to do” list. You see, the last two afternoons were filled with unexpected yet compulsory appointments, and so everything got shifted on to today. I decided to start at the nursery, as I have needed to pick up ladybugs for over two weeks. Fruit is emerging on vines, and if I have any intention of feeding anyone but the bugs, well…let’s just say it had finally risen to the level of urgent. While there a pot for my sprouting avocado seed, cages for the tomato plants and even a blooming “topsy turvey” strawberry basket made their way into my little red wagon. (Please don’t ask me why I needed a wagon for the intended purchase of a Chinese take-out container of ladybugs. Thank you.)