Patient Advocate Required

patient_advocacyTwo 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.



9 Comments (+add yours?)

  1. Pat Wetzel
    May 23, 2016 @ 10:26:11

    We had a very interesting conversation with Kathleen Ruddy on Blab yesterday about the conflicts of interest in a for profit medical model. She’s run into this first hand in that a vaccine to PREVENT breast cancer has trouble getting funded (this particular vaccine targets the human mammary tumor virus (HMTV), thought to play a role in 40-94% of ALL types of breast cancer). Patient advocacy, I fear, is an uphill battle when it comes to pharma, and right now it’s mostly window dressing. The blab is worth listening to:


  2. jbaird
    May 23, 2016 @ 11:24:50

    So true and so well written. Keep it up. We need balanced voices, not rhetoric or propaganda.


  3. Rabbi John Crites-Borak
    May 23, 2016 @ 21:08:19

    I am always impressed by the fullness of your thinking. Few advocates (in my experience) mention the need to balance patient needs — what *could* be — with the hard realities that nothing substantial will happen unless corporations profit from their efforts.Solving this dilemma seems to me every bit as complex as cancer itself.


    • Lori
      May 25, 2016 @ 15:54:57

      It is certainly a challenge – I agree. But I feel strongly that if I want others to understand me and my complexities, from my perspective, I must strive to do the same – including pharma.


  4. michellekwolf
    May 23, 2016 @ 23:06:48

    Lori, you are so right. I think smoke was coming out of my ears when I first read that expose on OxyContin in the LA Times. The worst part was that no one believed the agony and suffering of the patients.


  5. The Accidental Amazon
    May 25, 2016 @ 12:10:29

    Yes, yes, yes!!! As long as patient advocates can maintain their objectivity, especially when dealing with the corporate behemoth that is Pharma, they would bring so much to this particular table. I’m hopeful, though, when I see this ongoing shift to include our voices in the research conversation. I would also go on to suggest that non-researcher clinicians — like nurses, rehab therapists, etc. — who observe the effects of any medical treatment, or the lack thereof, and the collateral damage caused by either, in our patients’ lives, find more seats at this table as well. xo, Kathi


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