Hack for Health and the Future of Convergent Science

08 Apr 2017 2 Comments

by Lori in Breast Cancer

 

H4H

hack·a·thon /ˈhakəˌTHän/

noun informal

  1. an event, typically lasting several days, in which a large number of people meet to engage in collaborative computer programming.

As I write this I’m going on hour 26 of the 48-hour Hack for Health, a University of Southern California-based, CancerBase-sponsored hackathon. If you have no idea what I’m talking about, know that until recently I did either. That’s 48 straight hours! With me are about 70 students from the schools of engineering, computer science, health sciences and more, along with at least a dozen mentors who span patient advocacy, cancer research, oncology, and tech development. AnneMarie is with me as well. We’re on the mentor side (which means I get to sleep).

The mission: Hack Cancer. Or more precisely, design something that uses technology to help cancer patients.

I’m of a generation that thinks of “hacking” as a bad thing – like when my Yahoo email was hacked and I spammed everyone I know. But not here. Here 20-somethings are coming together to make an impact on disease; they are here to change the world. There are both bragging rights and monetary prizes at stake. Since we’re still in the middle of it, I can’t tell you what the various teams are working on, but I can tell you that they are passionate, creative and innovative. They are operating in the space of convergent science, bringing together specializes across the entire campus.

There is so much promise in what these “kids” are working on. They are so engaged that even these starving students are pretty much ignoring dinner in favor of working.

As an advocate, it is an incredible honor to work with these students, to encourage them and push them, to get them thinking about what is and what might be. Who knows where this will lead them? They are here to change lives, yes, but in being here, we are each changed as well.

Real Life Happens Too

23 Nov 2016 8 Comments

by Lori in Breast Cancer

The stress, anxiety, fear and weight of living with metastatic breast cancer is a constant in my life. It wakes with me each morning, it is the thought I fight off each night as I fall asleep. My life certainly doesn’t revolve around it, but it is certainly a constant. 

It also becomes my default for all problems medical. So a few months ago, when I started having persistent abdominal pain, and my tumor marker showed the likelihood of more cancer, I put it all together and wrote off the increasing pain to the increasing cancer. Mind you, I connected all those dots without the help of my doctor. 

Last Friday, I finally had the CT scan that confirmed more cancer. *SIGH* Eventualy that will mean a new therapy – one more off the list of potential life-extending options. 

But first, a detour….

The CT contrast usually leaves me pretty sick, so I wasn’t shocked when I felt horrible on Friday evening and Saturday morning. Over the course of the day Saturday the pain got pretty bad, definitely in new territory. Except with the months of escalating pain, I wrote it off as more of the same. When my friend Andrea came over to be with me, she pushed me to consider the emergency room, but I was adamant that my fever wasn’t yet high enough to call the doctor. 

Sunday brought more of the same, and AnneMarie and Andrea teamed up against me. I called the on-call oncologist and was directed to the ER. 

By 1:00 AM I was in surgery for a burst appendix, which in retrospect was probably the reason for the pain and all the stomach upset. 

My recovery has been complicated by my being on blood thinners, a drain that didn’t work right and what we think is another abscess around my appendix – or where is once was and might still be. (I guess it’s hard to say.)

As of now, I’m waiting on the CT results from the third scan in six days. I’ve given in to the need for morphine and so hopefully this post makes sense. I will probably, hopefully, have something to drain that will relieve my pain. One of life’s reminders that MBC doesn’t protect us from life’s other garbage…

NOT SO FAST: California Prop 61: “The California Drug Price Relief Act”

04 Nov 2016 3 Comments

by Lori in Breast Cancer

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photo credit: Huffington Post

SUMMARY: In my words: In most cases where the State of California negotiations the cost of prescription drugs, Prop 61 mandates that the state pay no more than the US Department of Veterans Affairs – and the VA negotiates one of the best deals around.

THE ISSUE: Anyone with a serious disease, including but not limited to cancer, is probably all too familiar with extraordinary, and rising, drug prices. Anyone who pays attention to the news has heard about the “gouging” of those who need Epi pens (Mylan) or Daraprim (Valeant), with over-the-top increases for life-saving and life-sustaining medications. (more here) As someone who is still alive and writing thanks to the pharmaceutical industry, this is sickening. To price medications out of the reach of those who needs them most is heartbreaking. And while I appreciate that we live in a society that thrives on capitalism, I think medications need to be looked at through a different, public-good lens. Frankly, I understand the drive to legislate change. I just don’t think Prop 61 helps us.

WHO DOES THIS IMPACT? This proposition will primarily affect those citizens who receive their prescriptions through a state program, such as certain MediCal benefits, those treated in the state’s AIDS Drug Assistance Program, and prisoners. Yet California already gets a significant discount when our major state programs purchase drugs. Generally, the VA pays 42% of market value, whereas California pays about 51%. Would more be better? Yes! when the state coffers are full, we all benefit. But don’t all take the risk…

THE INDUSTRY: Among the most significant spenders on Prop 61 are the pharmaceutical companies. It stands to reason, for many of us, that Pharma is against 61 because it will cut into their profits, and that what’s bad for this industry is good for the little guy. Rational for a “yes” vote? Not exactly….

Sure, Pharma doesn’t want to miss out on any profits.

Sure, they want you to pay as much as they can fetch for their products.

Sure, they give their best prices to large buyers (like the VA), and we as state citizens should leverage our size to demand the best prices.

THE PROBLEM: This mandate prevents the state from buying drugs above VA prices. If it passes, one of three things happen:

  • Pharmaceutical companies respect the will of the people and offers the same or better pricing to the state as is currently received by the VA.
  • Pharmaceutical companies agree to negotiations with California at VA rates – and hikes those rates so that they don’t lose money.
  • Pharmaceutical companies will refuse to lower prices and California will be prohibited from purchasing drugs – patients will have to go without.

Option 1 is obviously ideal – and would be a significant step in lowering drug prices. Still, it won’t pertain to most of us since we do not utilize these California programs.

Option 2 will probably have little fiscal impact on the state, and on plan participants, but could potentially have a significantly negative effect on the VA.

Option 3 will probably have no fiscal impact on California, but here’s the real danger! – It could have a devastating, theoretically fatal, impact on patients.

MY RESPONSE: I will be voting NO on Prop 61.

your-vote-your-voice1

photo credit: danielhite.wordpress.com

Prop 61 will appear on your ballot as: State Prescription Drug Purchases. Pricing Standards. Initiative Statute.

And please, whatever and whoever you vote for…        Own this one! VOTE!

P.S. I’m aware that Bernie Sanders is promoting YES on 61. I like Bernie. I’m VOTING NO.

P.P.S. The full text of Prop 61 can be found here. Scroll down to page 154 of the document, which begins on page 118.

I Haven’t Time

26 Sep 2016 8 Comments

by Lori in Breast Cancer

antipinkribbonI know, I know…I’ve been quiet again. Here’s the thing – when I’m quiet it’s almost always good news. I’m feeling well, and my treatments are manageable and my tumor markers seem to be dropping. I’m engaged in family, advocacy and real life. I just finished watching the presidential debates, and tonight my concern for our country rises above my concern for breast cancer. Right now I’m juggling @CancerBase – the global, real-time cancer map, the MBC Collateral Damage study with the Dr Susan Love Research Foundation, #BCSM, and serving as vice chair of the California Breast Cancer Research Program. All exceedingly exciting opportunity that keep me out of trouble… I LOVE what I’m doing!

Typically this time of year engulfs me. I can hardly come up for air amidst the insane pink marketing. But this time around, I honestly don’t care. I don’t have time to indulge corporate marketing in a debate about the scant funding that pink marketing offers, let alone how MBC patients are left in the dust. Does this matter? YES. But I can’t care about those who are leveraging pink to line their pockets. I’m never going to beat Madison Avenue. Hopefully, someday, they will figure out they are not on the side of right.

Is this all ok? NO

Is it shameful? YES

But for me, there’s real work to be done.  Critical, life-changing, life-affirming, life-saving work to be done. PinktTober isn’t my issue these days. Family, advocacy and living are. So please excuse me if PinkTober doesn’t speak to me. I can’t continue to be outraged.  Understand if I bow out of the hostility, anger and resentment that others harbor for Breast Cancer Awress month. I’m too busy. I haven’t time…

 

Today on the Map

30 Jun 2016 3 Comments

by Lori in Breast Cancer

Screen Shot 2016-06-30 at 11.35.24 AM

I’m still trying to catch my breath from yesterday, but I woke up this morning to an increasingly populated Global, Real-time Cancer Map! If you haven’t already, please check us out at CancerBase. We welcome ALL cancer patients – and type, any where. Want to know more about why this is a game-changer? Check out: CancerBase: Your Base for Understanding Cancer

Please spread the word!

CancerBase: Your Base for Understanding Cancer

29 Jun 2016 6 Comments

by Lori in Breast Cancer

CancerBase Logo

This is happening NOW. RIGHT NOW!

Join me on the cutting edge of cancer knowledge – accumulating what patients know! I’ve ranted and raved countless times about the lack of cancer patient data. I’ve talked about how little we actually know, and the many obstacles to knowing more. More often than not, I refrain from sharing my frustration – and more than that, how deeply it scares me to know so little. Today, all that changes.

If you are connected at all with the world of cancer – patient, caregiver, friend, supporter, physician, researcher – you are probably well-versed in the frustration and anger that results from a lack of information.

  • When you are first diagnosed you want to know who else is living in this new, unwanted club. Who are they? Where are they? How are they doing?
  • When you prepare for surgery you want to know the kinds of outcomes others have had, which procedures are most effective for your kind of cancer.
  • When you make decisions about chemotherapy you want to know what side effects you might expect – and certainly who has benefited in past. And who hasn’t.
  • And let’s be really honest – you want to know how long others are living, and where the longest living patients are, how they are treated, and how much they are just like you.

These are just a handful of the many questions we think about, and not just when we are new to cancer. The pop up when there are changes in what we know, when we see our doctors – and in the middle of the night.

We also know that information does not flow easily or quickly. Each of our doctors, each of our labs, each scan, each report, each test holds information – and unless the information is exceptionally important, it sits in our medical record. That’s it – it just sits there. Not because no one cares, but because until today there was no where else for it to be.

For those dealing with metastatic disease the picture is even more grim – we are generally not even counted, and so all the existing data is culled together from disparate sources, much of it conjecture.

  • What if all of those layers of data could be put together, and put to use?
  • What if you could easily, safely, confidentially share what you know and then learn how it aligns with the experience of others?
  • What if you could ask the questions you want to know, and millions of others could respond?
  • What if information were available 24/7 – as new information becomes available, in the middle of the night, or even at your doctor’s office?
  • What if the collective wisdom and experience of cancer patients from across the globe was at your fingertips?

Enter: CancerBase.

As of today we begin to build just that – the world’s largest database of cancer patients. The objectives of CancerBase are to collect data, share information, ask questions and provoke learning.

CancerBase was built by patients, for patients. It is has an honor to represent the patient voice in the process of developing the community, to ensure our needs are and will be met.

The success of CancerBase starts with us. When you launch CancerBase you will be asked to login then share your answers to just a few questions. As our community grows, there will be more feedback and more questions.

Join for yourself and share with others. Tell your friend. Help your grandparent sign up. Share what you know of those you have lost. Each and every one of us has information. CancerBase means it no longer gets lost, but instead gets elevated, leveraged, in a way that benefits us all.

Join us today!

Like us on FaceBook.

Follow us on Twitter.

And please, if cancer matters to you at all, share this one!

 

Patient Advocate Required

23 May 2016 9 Comments

by Lori in Breast Cancer, Cancer Research Tags: , , ,

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.

 

Hill Day

16 May 2016 6 Comments

by Lori in Breast Cancer, Cancer Research, Take Action Tags: , ,

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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

30 Apr 2016 4 Comments

by Lori in Breast Cancer, Living with Cancer, Research Tags: , , , , , ,

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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!

More

Ohm

25 Apr 2016 12 Comments

by Lori in Breast Cancer, Living with Cancer Tags: , , ,

om_ohm_aum_symbol_square_sticker_3_x_3I’ve long been one to defend the rights of all cancer patients (and everyone, for that matter) to self-identify with whatever language makes sense for them. I certainly won’t judge those who identify as victim or survivor. But I know many, many patients – especially metastatic patients – who loathe the war analogies. Yet I haven’t been able to reject them out of hand. I think, in part, because sometimes this disease does feel like a battle and that I’m fighting for my life and in part because it has become so engrained in our collective psyche that we don’t really have much to replace it with.

But during last night’s restorative yoga class, which I really wanted to skip out on, things started to make sense. Unfortunately it meant my mind was racing throughout the class, but if that leads to clarity, so be it.

I don’t know how cancer came into the studio with me, perhaps the news of a friend starting hospice and another prepared to die. In death language becomes even more important. We risk blaming the patient for not fighting hard enough or losing the battle. I know what I don’t want said about me, but I’m not sure what I do want said.

So in that yoga class…the room is dimly lit, my eyes are closed and hands open, I breathe. Breathing is good… The instructor tells us to surrender our bodies to the earth, allow gravity to pull us down and hold our weight.

Surrender…. More

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