Our Seat at the Table

seat-at-the-tableThis is going to be one of those posts that’s going to get me in hot water. That’s ok – I’ve been there before!

This week is the annual San Antonio Breast Cancer Symposium, perhaps the largest and most noteworthy of them all from which emanates some of the biggest Breast Cancer headlines. The magnificent Alamo Breast Cancer Foundation provides a truly INCREDIBLE service to advocates (even above and beyond their scholarship program) by bringing together top people to summarize the day’s headlines. Tonight’s “mentor session” was live-streamed thanks to Dr. Jay K. Harness at BreastCancerAnswers.com.

As always the presentations and questions were outstanding. One sparked a little discussion in the twitter feed.

The question began when Karuna Jaggar, Executive Director of Breast Cancer Action, raised a concern about inequities in access to care, which in turn was a result of findings that patients with incomes of $100,000 or more per year were more likely to afford, and therefore take their prescribed medications. (Karuna’s post is at BC Action). And it will come as no surprise that better adherence translates to better health outcomes.

The twitter conversation went like this:

It is a horrifying reality for one of the richest countries in the world! In fact I suspect we’re going to have more of these challenges as time goes on. But as the Affordable Care Act begins its rollout, with fewer hospitals taking individual or ACA plans, and insurance companies finding loopholes where they can, it seems to me we still haven’t had the REAL conversation about health care in America.

And like so many things we seek to avoid, I suspect we haven’t had it because it makes us uncomfortable. Very uncomfortable.

I wonder of some of that discomfort is our own hypocrisy. And I use “our” because I’m part of the problem, too.

Here’s the crux of it:

How can a health care system provide unfettered access to an unlimited number of treatment options for every member of a society irrespective of income and regardless of the proven benefit of the treatment without bankrupting the entire country?

I’m fairly certain that as a breast cancer advocate I’m not supposed to say these things. The party line is something like: everyone deserves whatever care they need, at a price they can afford, in a location that is accessible.

And everyone DOES deserve that. And not just breast cancer, right? It’s about everyone with cancer. And diabetes. And AIDS. And rare diseases. And on and on. Everyone deserves the very best that we, as rich a country as we are, can provide.

But our expectation is that time, money and other resources be unlimited, and that those unlimited resources be available to all. A noble cause, to be sure. But how many of us have unlimited access to any one of those things, let alone all of them? We don’t. Nor does our government.

We can argue about how money is spent, and believe me, I’m as horrified as anyone about the damage sequestration has wrought on medical research and services, and the inequities I’m starting to see in ACA coverage. I know and hate that poverty is a risk factor for disease. It is simply unacceptable, it is biased and probably racist and class-ist. And honestly, I believe the only resolution is a new system from the ground up. Sadly I don’t think that is going to happen.

But look across the globe. Show me one, just one society that offers its citizens whichever treatments they want whenever they want them at an “acceptable” price. Can’t happen. If drug selection is unlimited, money becomes a problem. If money is limited, choice of treatment is curtailed. Our propensity to spend unlimited amounts of money we don’t have is part of how we got to where we are as a country and as a society of over-spenders.

I’m certain I’m preaching to the choir here, right?

So my question is about our advocacy. We want it all. And we should – there is nothing wrong with wanting it all. But we need to acknowledge that we can’t possibly have it all. We can’t continue to insist that we get it all.

And I’m not talking about all of us, I’m talking about each of us! Our health is personal and for each of us, our treatments will someday have to be reconciled with the fact that none of us, so far as I know, has unlimited money and unlimited choices.

As advocates our passion needs to come face-to-face with our reality, and it is our passion that must bend. We must find a way to move from passionate rhetoric to realistic solutions. We must continue to dream, but also to find solid ground. Our seat at the table depends on it.

My question for you: how do we get there?

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8 Comments (+add yours?)

  1. bethgainer
    Dec 13, 2013 @ 09:33:20

    You raise really great points, Lori. Healthcare is not equitable, and of course, ideally, each person should have access to everything he/she needs at an affordable price. I don’t know how we get there. Thank you for bringing up this side of the argument.

    Reply

    • Lori
      Dec 13, 2013 @ 11:40:22

      Thanks, Beth. I don’t know how we get there either, but we can’t do it if we demand access to everything for nothing. It’s child’s play to believe otherwise.

      Reply

  2. The Accidental Amazon
    Dec 13, 2013 @ 19:06:07

    I’ll get myself in trouble right with you, Lori. As a healthcare clinician and a cancer patient, I can tell you that this is a complicated issue, the inequity in the system. There is so much waste, so much over-charging, and, sadly, still so many healthcare providers willing to commit fraud & scam the system, and we are all paying for it. And don’t get me started on Pharma. One of the issues — just one, mind you — is how ill-prepared we are in general to plan for our deaths and how much money is thus spent in the last days of someone’s life on tests & pointless treatments that accomplish nothing so much as adding to the anguish experienced by the patient & their loved ones. And I’m not even talking about cancer patients. I’m talking cardiac, stroke, respiratory & other patients. Every one of us — patients and doctors and all providers of healthcare — needs to begin to ask how much a test, a procedure, a surgery, a medication costs before we ‘buy’ it or recommend it, and to shop around before we agree to it. Studies & investigative reports have been published recently about the enormous difference in cost from hospital to hospital for something like a hip replacement surgery. The differences were enormous, and the higher-priced options did not translate into better care or outcomes. Meanwhile, many of us who work in healthcare are squeezed by conflicting pressures, to be more productive, more efficient, yet to be ever-mindful of how to maximize that almighty insurance reimbursement for the work we do. It’s hellacious.

    Reply

    • Lori
      Dec 17, 2013 @ 09:48:54

      Thanks for speaking up! I think the legitimate needs if practitioners have bit been addressed at all. I suspect most people figure the rich doctors can just make a little less and work a little harder. As if they are all making fortunes and there aren’t nurses and therapists and office staff and orderlies and others who are all taking a hit! There HAS to be a better way…

      Reply

  3. Cancer Curmudgeon
    Dec 14, 2013 @ 00:04:19

    “Our health is personal and for each of us, our treatments will someday have to be reconciled with the fact that none of us, so far as I know, has unlimited money and unlimited choices.”
    My someday is already here. My limited financial situation is already impacting me negatively, especially my access, which has changed and become limited. I know if and when I get a recurrence my chances of survival are greatly reduced, in fact I am unlikely to survive at all. This is not just about advocacy for me (not that I am an advocate anyway), because it is about my own life right now, not someday.

    Reply

    • Lori
      Dec 17, 2013 @ 09:52:42

      I’m getting to that point too. Each bill that rolls in becomes more and more stressful, and as a mets patient I know it is NEVER going to get better. So far we are holding on, but who knows…

      Reply

  4. Catherine
    Dec 14, 2013 @ 04:08:17

    In Canada, some drugs are covered while not all are available. For instance, I would have needed my ovaries removed if there wasn’t the provincial drug plan that helps pay for my estrogen-suppressing medication. Is that fair? It is even a good idea? Luckily, in my case there were other options available. But I know the difference of having an insurance plan or no insurance plan here in Canada can equate to a choice between ‘really good’ anti-sickness drugs during chemo and just the anti-sickness normal drugs, and it’s all dependent on what is covered by healthcare vs what is extra. So there are many systems that employ that compromise. But that being said, Healthcare is NOT an easy balancing act, though it is hugely important.

    Reply

    • Lori
      Dec 17, 2013 @ 09:45:53

      Thanks, Catherine. I agree there isn’t a perfect system, and that giving here is just going to take from there. This requires the wisdom of Solomon, and it is so crucial… The whole thing makes me frustrated and sad and dare I say a little hopeless 😦

      Reply

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