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.

 

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Hill Day

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Thursday, May 12

It’s John’s 50th birthday, and instead of celebrating, I am en route back to LA after two and a half days in DC. We talked a great deal about my missing it, but both believe deeply in the work that needs to be done to change the face of cancer.

So over the course of today I met with key staff in five congressional offices. I carried the voice of nearly 15 million cancer patients – young and old, a rainbow of skin tones, from every corner of our country. In the current political climate, I find that there is much to be discouraged about, but not today.

Today each office we visited listened to my story, heard from oncologists and researchers, and understood the dire need to more cancer research funding.

Some history: from 2004-2015 we’ve lost a lot of ground with “level funding,” and completely failed to keep pace with inflation, even as more Americans are being diagnosed and great discoveries are on the cusp of arriving. As a result, we’ve lost momentum and talent, especially young talent – PhD graduates who could not count on getting the funding necessary to do their work and live their lives, never mind pay their loans.

2016 was better, with an increase of $2 billion to NIH. This year there is wide-spread and cross-aisle support for an additional increase of $2.5 billion, inching us closer to where we would have, should have been.

There was recognition not only of the critical needs of patients (including metastatic patient because YES I went there), but of the jobs research provides, the support for universities, and the risk of “brain drain” when our best and brightest can’t count on the funding they need to start their labs and push forward their innovations.

But here’s the most interesting part. Every office, when asked what we can do, told us to stay in touch – and to raise the voice of patients! They want to hear our stories – they use them to understand what cancer means to real people, to make decisions about funding and to push harder for appropriations and legislation that will help us. Our stories inspire their work. I know it can hard to have faith in government these days, but we can still make a difference.

ACT NOW. We are a week or two away from the NIH appropriations bill and so Congressional staff have begun turning their attention. The moment to act is right now – and the voices of constituents matter!

If you are a cancer patient – any kind of cancer, at any time in your life – if you are a spouse, a parent, a child, or a caregiver of a cancer patient, please help. You can find your members of Congress here. Please write them a 1-2 paragraph summary of your story, along with a request that the NIH be funded at $36.5 billion.

I want to express a personal note of gratitude to the staff of the following Congressional offices for taking time for us today, for reminding me to have faith in our system, and for the incredible work you do on behalf of Americans:

  • Senator Barbara Boxer
  • Representative Anna Eshoo
  • Senator Diane Feinstein
  • Majority Leader Kevin McCarthy
  • Representative Brad Sherman

Summertime and MBC

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It’s the time of year when I start thinking about cleaning up the back yard, heating the pool, and focusing on summer entertaining. We have a small home, so it’s our season to celebrate outside with friends.

This year I have a new plan – if anyone appears to be drowning in my pool, I’m going to focus on preventing future incidents by teaching everyone on the deck how to swim immediately! After all, the person drowning could be saved and then be hit by a bus, so she’s probably a lost cause. 

It makes sense, right? I mean, it is how we fund cancer research. We don’t focus on saving the dying – we focus on how to “prevent” the disease. Why shouldn’t that be the model how we approach other life-or-death situations? Heart attack? Have everyone within earshot has to change their diet. And pass the bowl of aspirin, stat!

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Call to Action – 2 Minutes of Your Time

 

call-to-actionA 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.

Lives depend on it.

Metastasis Research Petition

When Favorite Brands Go to the Dark Side

WacoalThe issue first came up a couple of years ago, actually, but I really didn’t have time to deal with it then. It was just weeks before my son’s bar mitzvah and I was in dire need of a pair of black jeans. I headed to the store, tried on half a dozen pair hoping to find one that would not require tailoring (yeah, right) and choose one. Phew!

As I sat in the dressing room waiting for the tailor to pin the jeans I saw it. It had actually been tucked in a back pocket so I missed it at first. The tag. NYDJ had jumped onto the pink bandwagon and become a Komen supporter. Ouch.

Don’t tell anyone, but I bought the jeans.

Fast forward. I’ve been inundated with work – professional and volunteer – and trying desperately to catch up lately. (It’s one of a few reasons I haven’t been blogging much, so thanks for your understanding). Well, as luck would have it, tonight I finished a major project and I wanted to kicked back!

Hello, RealSimple. Just me, the couch and the glossy pages ripe and ready to get me ready for fall. Yahoo!

Flipping through the fall fashion pages, page 81 to be exact, BAM! Wacol has a full page, pink ad. That’s fine, no worries. Until I read the small print: Wacoal is a proud sponsor of Susan G. Komen. My condolences, Wacoal, but Susan is dead, and I will venture to guess YOU are sponsoring Susan G. Komen for the Cure, and THEY are not one of my favorite charities.

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Cleaning out the Cobwebs

I must admit, I have been neglectful of late and it’s gotten a bit dusty around here. As it is wont to do, life took over. The cobwebs aren’t just virtual, though – they are metaphorical as well; it’s pretty dang dusty inside me head of late! So here’s a quick update of what’s been keeping me busy:

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National Breast Cancer Coalition

There are countless breast cancer “charities” out there…from beheamoth organziations of international scope, to local support centers active in our various communities. NBCC is of particiular note as a stand-out national advocacy organization supporting an agenda of finding a cure, and I proudly join them next month as we work to move that agenda forward! In addition to Joy’s wonderful overview of NBCC, there are some valuable & important links to related projects and efforts.

NATIONAL BREAST CANCER COALITION
–by Joy Simha, NBCC Executive Committee

At The National Breast Cancer Coalition every bit of business we do begins with a moment of silence (MOS) to remember an incredible breast cancer advocate who has died since our last gathering. The MOS grounds us and reminds us about why we are there. And every day as I sit down to my desk to write, I look at the faces of all the women I know who have died of breast cancer. I also, in some cases, look at the faces of their children, because I know that I want to end breast cancer because they are without their mothers. More

Not Funding Mammograms for the Cure

In a thinly veiled move that defies explanation, Susan G Komen For the Cure has chosen to pull the plug on mammograms for low-income and/or underinsured women. What might their next step “for a Cure” be?

Slate on Komen     Jezebel on Komen

Pro Choice & Pro Life

Cancer coach and blogger Elyn Jacobs comments, “Yesterday I spoke with a woman with stage 1, wanted to treat her cancer naturally, opted out of surgery.” She goes on to talk about the challenge of finding a doctor who could HEAR and respond to the needs of the patient, rather than play their own scripts about treatment expectations.

Elyn’s comment reminded me of a the day when I had a new support group member. This lovely, older woman was the only “newbie” that afternoon, amongst a group of in-treatment and post-treatment women. When it was her turn to share, the woman told us that she had a lump. It had been there for about four years. Moreover, she had lost a mother and sister to breast cancer.

To say the other women in the group went on the attack would be an understatement. They were beside themselves, with responses that ranged from “How could you?” to “I’ll go with you….” It was all I could to fend them off. As facilitator, it was my job to honor this woman’s choice, even if her choice was not life.

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The Role of the FDA: Avastin and Other Drugs at What Price?

This week’s breast cancer headline: the FDA Oncologic Drugs Advisory Committee voted unanimously to withdraw Avastin as a treatment for metastatic breast cancer, though it remains to be seen whether FDA Chair Margaret Hamburg will ultimately suspend Avastin. Genentech, as well as patients and doctors are still pushing, and Medicare has announced that it will continue to pay for the drug for breast cancer patients. Avastin will remain available for the treatment of other cancers, and can ultimately be prescribed “off label,” though it may no longer be covered by private insurance if the FDA withdrawal comes to pass. More

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