Tag Archives: CDMRP

The heart of advocacy: AACR Scientist↔Survivor Program

An advocate is someone who takes a public position on a cause or policy. My initial steps into lung cancer advocacy were as a spokesperson–I shared my story with the goal of spreading awareness (even a young, never smoker such as myself could get lung cancer) but also hope–although given a dire prognosis I was alive, thanks to an experimental therapy.

However, I was soon itching to do more and became a peer reviewer for the CDMRP—Congressionally Directed Medical Research Programs. My background as an artist did little to prepare me for the rigor of scientific proposals, but I found that I really enjoyed the intellectual challenge.

I owed a lot to medical research and as a participant in three phase I clinical trials, I had some hands-on experience (fieldwork, if you will). It became clear that medical research was the aspect of advocacy that I was most interested in focusing on. When I heard about the AACR Scientist↔Survivor Program I knew it was the perfect fit for me.

The program coincides with the Annual Meeting for the American Association for Cancer Research and this year it was held in New Orleans. As anticipated, I refined my understanding of the basic biology of cancer (particularly a wonderful Mini Med School presented by Dr. Carolyn Compton on our first day) and also had the opportunity to sit in on not only plenary sessions but smaller presentations around topics including precision medicine and genomics. We attended a policy overview and a special session with the FDA, led by Dr. Richard Pazdur, who lost his wife to ovarian cancer (and also learned a lot about the drug regulatory process from a different perspective, that of the patient). Dr. Pazdur said something during this session that I found very impactful: ‘Patients aren’t for clinical trials. Clinical trials are for patients.’

Being at Dr. Jean Cui’s (she developed crizotinib) poster session and having her greet me as if she were expecting me for tea was pretty darn special. And I even had an out of body experience when I saw my lungs on the big screen during one of the plenaries (the presenter was Dr. Jeffrey Engleman and the topic was resistance to therapy, for which I am a poster child).

C'est moi.

C’est moi.

The single most significant thing I learned from my experience can be found in this statement from the AACR SSP online site:

The AACR Scientist↔Survivor Program is designed to build enduring partnerships among the leaders of the scientific, cancer survivor, and patient advocacy communities worldwide.

The word partnership. Far too often Patient as Partner–a term bandied about in medical circles now–is mere rhetoric. Western medicine is still in the process of transitioning from a very paternalistic practice to one in which the patient is in fact viewed as a partner in his or her own care. The AACR SSP program is trying to push that needle forward by empowering patients/advocates with true knowledge and understanding. It is an incredibly respectful viewpoint, and I am so grateful to Dr. Anna Barker for creating and sustaining this unique program. I encourage anyone who is interested in sharpening their advocacy skills to apply.

As for me? I came away committed to not just medical research, but the patient voice, and particularly that of patients with advanced, or metastatic disease. I’ve already had several opportunities to champion that cause, including a seat on a panel (Stakeholder Panel Discussion: What are the challenges and opportunities for research and delivery of care across the cancer journey?) at the American Cancer Society’s New England Cancer Center Leadership Roundtable this past Monday. At the conclusion of the meeting participants were queried as to the greatest takeaway from the day. And the unanimous response? The patient voice.

Dear Pharma;

For all but one of the past seven years I have served as a peer reviewer for the CDMRP. It is perhaps the toughest form of advocacy that I have undertaken but also one of the most rewarding. I never got around to mentioning it (oh, I am so behind!) but last summer I was featured as a consumer reviewer on the CDMRP site. I was honored as I am to simply serve as a peer reviewer and I encourage any of you who are interested to apply.

My featured story gives a shout-out to medical research and segues nicely into the next part of my post, which offers a slightly more critical view of clinical trials.

The thing is, I ❤ clinical trials 100%: I absolutely would not be alive today had I not had the opportunity to enroll in a clinical trial back in 2008. Because of how far down the treatment pike I have come, clinical trials are my next best hope and I am keeping my fingers crossed that when the time comes, there will be yet another in which I can enroll.

Unfortunately, clinical trials have a bit of an image problem, as many people consider them risky and a choice only for desperate people—something I can’t really argue with. When I enrolled in my first clinical trial it was a different time; one with absolutely zero expectation of success (and yet a wild fleeting hope, which was the motivation behind my decision to enroll). However, with the advent of targeted therapies as well as a sudden wealth of experimental therapies to treat NSCLC, more and more people are enrolling in not just one, but several clinical trials.

The previous paradigm was one which assumed that participants in trials were likely on their last leg. Issues relating to quality of life were simply not considered. I’ve now spent almost a tenth of my life enrolled in a clinical trial and last summer, after Stanford came out with a report about the cellular damage exacted from each CT scan, I sat down and counted how many scans I’d had. And I was shocked.

Since then I’ve been trying to find a sympathetic ear. At the end of our first day of CDMRP peer reviews this year, I chatted up the right person in the lounge. They connected me with someone from the pharmaceutical company who is the sponsor of my trial and I sent them this email. I’m sharing it with you now because a member of my blogging community recently asked the question online as to whether or not it was better to stay in a trial or to switch to prescription once a therapy has gained FDA approval. It was my viewpoint that if it meant a decrease in scans, I would switch to prescription.

So back to the image problem. Only 3-5% of cancer patients enroll in clinical trials and I believe there is the potential to increase those numbers. And I think it might well start with really recognizing the contribution trial participants make. How about just saying thank you—at the end of every peer review I receive a nice note from the Department of Defense thanking me for my service–that gratitude and recognition never grows old.

Dear Pharma:

Please know that I don’t feel that this is under poor circumstance—I would just like to start some dialogue. When someone is feeling disenfranchised, the first thing they want is to feel heard.

I would love to speak to you on the phone and would also welcome an opportunity to share my perspective with a larger audience. There is a lot of buzz about patients as partners but we can only be a partner if we have an equal voice. I am grateful for and a champion of clinical research (my eighteen year old son had an internship at the Koch Institute this summer, and was engaged in pancreatic cancer research). I am also only too aware that I would not be alive today without clinical trials. However, as this is my third phase I clinical trial, I am in a unique position to offer some observations about how that process can be made better for patients.

A couple of talking points that I would like to discuss:

1. The loss of autonomy. As a patient becomes a participant they lose some control. Per my issue with the number of CT scans I’ve had—even my oncologist was surprised when I told her that I had added them up and that I’d had more than one hundred. Obviously, no one is keeping track of this sort of thing and with patients now going from trial to trial, I feel there should be some guidelines established and I don’t feel those should be guidelines of exclusion (because most of us will do anything to stay alive). Rather, I think that there should be a way to view participants as individuals and not just data. In my case the scans to my abdomen and head are totally uncalled for and expose my already mutable cells to additional radiation. Ideally there would be a way to follow me in a trial but to also take into consideration that I have a lung cancer that has and almost certainly will remain contained to my lungs.

2. Parking. That’s just sort of my bottom line. I was at my PCP’s yesterday (also at MGH—where I get my cancer care) and saw a bulletin board with notices for participation in clinical trials for things other than cancer. The participants would be compensated ($) and given parking vouchers. This always burns me up. Everyone makes money off of my disease but me, and I’m the one who has to have the stupid disease in the first place and I’m supposed to always be in grateful mode. As I tweeted a week ago–‘I ❤ being alive but I want free parking too’. I just don’t buy this inducement stuff. I also tweeted (I’m going all radical on you) in a conversation about patients as stakeholders—‘I don’t just want to be a stakeholder I want to be a stockholder too’. I’m really not kidding—I think it is time to talk about the major contribution early participants in clinical trials make. Another analogy—there would be no horse and pony show without the horses and ponies.

3. The story about my having to pay for Xalkori the second time around. Obviously there was no way for anyone to know I was the 4th person in the world (with NSCLC) to take this drug. But even if they had known, it would not have made a difference. I was able to afford Xalkori by prescription only because I qualified for financial assistance (not an easy process to go through when you are stressed, alone (I had recently separated from my husband) and, to be frank, once again heading down a path where if things don’t change, you will soon be dead. The whole experience kind of dashed any feeling I might have had that as an early participant I was somehow special. In truth, I feel early participants should be accorded the same sort of respect that veterans of the service are. We put our lives on the line, taking risks that many, many people never would. And our sacrifices benefit all.

4. I think it would behoove pharmaceutical companies to develop a patient advisory council. I have served on such a council at MGH for three years now and we have provided feedback on any number of healthcare initiatives.

5. Compliance. According to my nurse, compliance is only 60% in the trial I am currently in. Prescribing oral chemotherapies in a pill bottle just seems crazy to me. A blister pack (with a way to have a calendar printed on it) would be such a simple way to help patients with dosing. As one of those (often) non-compliant patients, I have such a difficult time recalling whether or not I’ve taken my pills and so skip a dose rather than risking double-dosing.

It is my understanding that only 5% of cancer patients enroll in clinical trials. I know little about the regulatory process but I do believe that if participants were treated better (induce us!) those numbers could rise. And I would love to be part of the conversation about how to make some improvements.


Linnea Olson

And more pieces

Look what I found

Look what I found

I am once again a peer reviewer for the CDMRP (Congressionally Directed Medical Research Programs); specifically those pertaining to lung cancer. And yes, this part of the government is apparently still up and running even as ClinicalTrials.gov limps along with partial staff and a disclaimer; (which I swear got a little more upbeat as the week went on) they will update information as best they can. It’s an unnerving time for those of us who rely on clinical trials for survival, and according to this article in WIRED (thanks Janet!), the immediate impact extends beyond enrollment, as research itself is put on hold and sometimes (un)necessarily scuttled.

It is a daunting task, this peer reviewer stuff, and if I ever say yes again, I hope someone who cares will slap me. I say the same thing when I am holding a bag of cheetos—if I reach in one more time, take it from me and slap me. Some time back, Peter slapped me after my first bite. ‘What the hell?’ I asked—I guess the day before I had made my characteristic statement and I suppose he felt it still stood.

Anyway, I feel as if I’m making a small but important contribution, and perhaps in the process I will also expand my own understanding of lung cancer (get smarter). However, the amount of research I need to do just to understand the basic concepts in some of these proposals makes my brain feel like pudding, as well as underscoring the fact that I majored in art, not science.

About that image at the top. I ran into it while doing some of my research—I think I was looking for pie charts with the break-down of genetic mutations in NSCLC. As I scrolled down the page, I started noticing images of my lungs. And a little picture of me….and my grapefruit too.

I don’t know if I can explain how I felt, but it made me kind of weepy. I mean, here I am researching lung cancer and part of what I find is little anonymous pieces of me. More underscoring; I really do have this damned disease—and my connection to the subject I am researching is intensely personal. But then again, not….with 220,000 new cases in the US annually, I’m hardly alone. One piece in a really big puzzle; a puzzle I hope we someday solve.

But not if I don’t get back to work…..


In the army now (fighting lung cancer)

Way back in December, just as the holiday madness got under way, I commenced my second assignment as an online peer reviewer for the Department of Defense Congressionally Directed Medical Research Programs. What’s this mouthful, you might ask?

From the CDMRP press release given to those of us who participated:

“As a lung cancer advocate, I recently had the opportunity to serve as a consumer reviewer evaluating research applications submitted to the Lung Cancer Research Program (LCRP) sponsored by the Department of Defense. As a consumer reviewer, I was a full voting member, along with prominent scientists, as part of an online review process to help determine how the $12.8 million appropriated by Congress for Fiscal Year 2011 will be spent on future lung cancer research.

Consumer reviewers represent the collective view of those living with lung cancer, their family members, and persons at risk for the disease as we evaluate the impact of each application.

You can get more information on the Lung Cancer Research Program, including how to serve as a consumer reviewer, on the (CDMRP) Web site.”

The CDMRP is devoted to medical research and the amount of money dedicated to specific conditions is determined annually by the House and Senate Defense Appropriations Subcommittees. From the CDMRP website:

“The Office of Congressionally Directed Medical Research Programs (CDMRP) is funded through the Department of Defense (DoD), via annual Congressional legislation known as the Defense Appropriations Act. For most programs, the DoD sends a multi-year budget request to Congress in the form of the President’s Budget. However, dollars for the CDMRP are not considered part of the DoD’s core mission, and are therefore not included in the DoD’s requested budget. Rather, the dollars to fund CDMRP are added every year during the budget approval cycle by members of the House or Senate, in response to requests by consumer advocates and disease survivors.”

On the CDMRP site, you can find a bar graph illustrating the history of their allocations. Breast cancer research has been heavily funded since the inception, and there is a reason for this. From a CDMRP publication in 2001:

“The origin of the CDMRP can be traced back to1992 when a congressional appropriation of $25M was made for “army breast cancer research.”  At the same time, the breast cancer consumer community, led by the National Breast Cancer Coalition (NBCC), was raising public and legislator awareness of gaps in breast cancer research and lobbied to increase the Nation’s investment in breast cancer research.  In 1992, the NBCC presented President Clinton with a 2.6 million- signature petition for a comprehensive plan to put an end to breast cancer.  This grassroots movement led to a fiscal year 1993 (FY93) congressional appropriation to the DOD for $210M targeted toward breast cancer research.  The USAMRMC1was assigned responsibility for administering these dollars.  Within the USAMRMC, a new research area directorate, the CDMRP, was established to administer the FY93 Breast Cancer Research Program (BCRP), as well as to manage awards that were supported by the FY92 DOD breast cancer research appropriation.”

In the ensuing years, a staggering 6.978 billion has been appropriated for medical research (FY1992-2012). The Lung Cancer Alliance made it their mission to see that some of that money went to lung cancer. Their lobbying efforts paid off, and in 2008 twenty million dollars was earmarked for lung cancer research for the 2009 fiscal year. Since then, an additional thirty eight million has been secured.  Not bad, and a real victory for lung cancer. However, just for comparison, Breast cancer research received 2.66 billion dollars in appropriations between the fiscal years of 1992 and 2011 and an additional 120 million in 2012. It is definitely a case of the squeaky wheel getting the oil. Time to make some noise of our own. And while you’re at it, consider applying to be a peer reviewer. You might find yourself with a nice note in your inbox:

Dear Ms. Duff:

On behalf of the Department of Defense, U.S. Army Medical Research and Materiel Command, Congressionally Directed Medical Research Programs (CDMRP), I would like to express our sincere gratitude for your exemplary efforts as a consumer reviewer for applications submitted for the fiscal year 2011 Lung Cancer Research Program (LCRP). The continued success of this highly visible and competitive program is dependent on maintaining the highest standards of excellence in scientific peer review. We recognize that you have responded generously with your time and valuable perspective to fulfill the demanding requirements of this peer review process. Feedback from reviewers and program staff alike indicates that this peer review process was a success, and it would not have been possible without your hard work and dedication. Because of your efforts, the LCRP draws that much closer to fulfilling its mission.