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

In Our Shoes: Raising the Voices of MBC Patients

Well, this is LONG overdue, but I’m finally feeling up to using my chemo-addled brain again! You may remember (or perhaps you never even knew) that last spring I conducted a survey of metastatic breast cancer patients. As I’m sure you’ve heard me say before, we are patients who often fall through the cracks when it comes to breast cancer advocacy. Sometimes we scare people, sometimes we don’t fit the mold, and sometimes we are forgotten – or pushed aside. As patients, we know our stories are hard ones to hear, but as so many advocates will tell you, there is no breast cancer advocacy without MBC advocacy. More

Do You Know What Your Trial is Doing?

clinicaltrialClinical Trials – the path to new drugs and device approval by testing them on humans. As I’ve become increasingly involved in the research side of breast cancer advocacy, I’m often called upon to explain trials – what they are, how they work, and why they are necessary. It is, in my opinion, a critical roll played by advocates who advise researchers through the trial process.

Define. Recruit. Support. Disseminate. More

Why Advocate?

There are times when I feel like I spend more time on breast cancer advocacy than I did on my half time job. It’s probably true…

So in the midst of my own almost-but-not-quite stable disease, why the long nights of reading grants, long days of travel and meetings, the long talks with researchers, the long days or planning, grant-writing, networking, and whatever else quickly fills my days? 

I recently closed a study that will serve as the basis of an abstract and poster entitled “In Our Shoes” and will seek to raise the collective voices of metastatic breast cancer patients around living with our disease. One respondent’s comment about how finances impacts her family offers the best possible answer for why I do what I do. 

I also know that the sooner I die, the more money my family will have. 

#Heartbroken

An N of 1

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The most recent roller coaster ride seems to be coming to an end, though that sounds remarkably like “famous last words” – never good!

For those keeping score, here’s the update:

About four months ago I started on my third-line treatment – everolimus and exemestane. I started the treatment with trepidation. After nearly three months it seemed, to me, that I wasn’t seeing the results I wanted. Tumor markers were rising (that’s not good) and the side effects weren’t great. So I started looking for “what’s next.” Time to look at my options – clinical trials.

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Breast Cancer Advocates: Five Minutes of Your Time, Please…

5minutesI am thrilled and honored to be attending the upcoming AACR Scientist <-> Survivor Program in April! One of the requirements for us as advocates is to present a poster. Mine focusing on giving researchers greater insight into who advocates are and what they do. To do that, I need your help.

The survey linked below is 9 questions long and will take no more than 5 minutes. I am not collecting any personal data and your responses will be combined with those of others; you will not be identified in any way.

Please TAKE THE SURVEY to help me explain who we are, what we do, and why we do it!

Thank you VERY much in advance!!

#BCNext

We are constantly confronted by “breast cancer marketing,” the barrage of pink, from funding free mammograms and research, to supporting individuals with cancer, some of whom can’t even afford child care and transportation to treatment. We range from those with strong family histories, whether BRCA positive or not, to those enduring treatment, to long-time survivors with metastatic breast cancer, to those we have loved and lost. We are each the face of breast cancer.

In America, and I presume elsewhere, there is a great divide between those of us on the ground, living with and dying from cancer – and the other side of breast cancer, those who make funding decisions and allocations of both donated and allocated dollars, private, public and NGO.

If you could have their ear for a moment, if you could tell them what YOU think, what YOU see, what YOUR breast cancer priority is? What if your voice, combined with others like you, like me, could help influence our future?

Comment below or tweet to #BCNext to join the dialogue and spread the word! Let your voice ring out!

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…

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The Antidote to Myriad & More

This is very much not my style! I like to do my research, make sure I’ve evaluated all angles, shore up the details, and THEN dive in with both feet. But today I don’t have time for that!

Last night my husband’s colleague Bonnie pulled me aside at dinner to tell me about an article she’d read in the local law journal. The room was crowded and I knew I wasn’t going to “get it” and so she offered to send me it to me. It just arrived. TWO amazing gifts from ONE amazing company: VIRATECH.

(Now, let’s hope that in my rush to share I don’t get this all wrong…)

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