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Running For More…

The personal blog and website of Kristen Cincotta

Posts Tagged ‘In the News’

#NHBPM Post 2: Where Do the Candidates Stand on Health, Science, and Research Issues?

Sunday, November 4th, 2012

Note: This post is a part of WeGo Health‘s National Health Blog Post Month: 30 posts in 30 days challenge. The prompt for Day 2 that I’m responding to is “Find a quote and use it for inspiration”. To see the rest of my #NHBPM posts, please click on the image at the bottom of this post.

“Whenever the people are well-informed, they can be trusted with their own government.” ~ Thomas Jefferson

Unless you live under a rock, you know that this coming Tuesday is Election Day here in the United States. While many people have already early or absentee voted, the bulk of Americans (including me) will be going to the polls to cast our votes for the next President of the United States, for our members of the House of Representatives, and for other elected officials at all levels of government. As a research scientist who has been funded by a federal grant from NIH, the platforms of our candidates on research investments and regulation are incredibly important to me. The US government is far and away the largest investor in science and health research in the country. As both advocates for and beneficiaries of this life changing (and economically stimulating!) research, I think it is important that everyone going to the polls takes a moment to understand where their chosen candidates stand on issues pertaining to science, health, and technology.

To help everyone be as informed voters as possible on the candidates’ positions on these issues, I’ve compiled a series of resources and reviews that I think present the candidates’ policies and positions as fairly as possible. If you feel that I’ve linked to a particularly biased source, please let me know in the comments. While I definitely have my own personal preferences for how this election will turn out, it is not my goal here to sway anyone’s vote towards or against a specific candidate. Rather, I just wanted to point out some solid resources for those looking to better understand the candidates’ positions before voting on Tuesday.

ScienceDebate.org

Science Debate is an initiative that was started a year ahead of the 2008 election by six concerned citizens (two screenwriters, a physicist, a marine biologist, a philosopher, and a science journalist) in order to help bring science and technology issues to the forefront of the political debate. As they note on their website, within weeks of its founding, the Science Debate initiative had been endorsed by more than 38,000 scientists (including me!), engineers, and other concerned Americans, including every major American science organization, dozens of Nobel laureates, elected officials, business leaders, and the presidents of over 100 major American universities.  Their “call to arms”, as it were, states:

“Given the many urgent scientific and technological challenges facing America and the rest of the world, the increasing need for accurate scientific information in political decision making, and the vital role scientific innovation plays in spurring economic growth and competitiveness, we call for public debates in which the US presidential and congressional candidates share their views on the issues of the environment, health, and medicine, and science and technology policy.”

While the movement has yet to persuade the candidates for President to take part in a physical debate on these issues, it has been successful at pushing the candidates to more clearly define their positions on science, technology, and research. Starting last year, the folks at Science Debate began crowd sourcing a collection of important science questions that scientists, engineers, and concerned citizens wanted to hear the candidates answer. Together with their partner organizations (you can find the list of these organizations on their website), Science Debate culled the list to 14 critical questions, which were then presented to President Obama and Governor Romney. A subset of 8 questions were also presented to 33 members of Congress who serve in leadership positions on committees or subcommittees dealing with science issues. The answers from both Obama and Romney can be found here and the list of Congress members who were surveyed along with links to their responses can be found here.

The questions that were asked cover a wide range of topics and include: Innovation and the Economy, Climate Change, Research and the Future, Pandemics and Biosecurity, Education, Energy, Food Safety, Water Safety and Availability, Internet Regulations, Ocean Health, Science in Public Policy, The Future of Our Space Program, Protection of Critical Natural Resources, and Vaccinations and Public Health. The responses from each candidate are presented side by side, making it easy to compare and contrast between their positions on these issues.

For more information, please visit the Science Debate website here. You can also find Science Debate on Facebook here.

AAAS.org and Science Magazine’s Review of the Republican and Democratic Party Platforms on Science

Following the completion of both the Republican and Democratic conventions in September, Science magazine, the primary publication of the American Association for the Advancement of Science (AAAS) and one of the pre-eminent science journals in the world, published this editorial reviewing the platforms of both the Republican and Democratic parties on issues relating to science, technology, and the environment. The article touches on the parties’ overall stance on research funding, as well as their positions on funding for embyronic stem cell research, climate change, the future of our space program, energy policy, immigrant scientists, the role of “politicized” science, and actual budgets for this work proposed by each party. I felt that this piece was both comprehensive and fair in its assessment of each party’s platform. Please note that while this article is free to read, you may need to register with the AAAS website in order to view it.

The same author also wrote this editorial for the ScienceInsider section of the AAAS website on Paul Ryan’s record on science and government following his selection as Mitt Romney’s running mate in August. This analysis focused heavily on the funding allotted for various science agencies and initiatives in the budgets that Congressman Ryan has proposed over the years in his position as the Chairman of the House Budget Committee. To my knowledge, this article does not require registration to view.

You can read more about AAAS on their website, here, and you can find the website for Science magazine here. You can follow AAAS on Twitter, here, while the Twitter feed for Science magazine is here.

Research!America’s Your Candidates – Your Health Initiative

Research!America is the nation’s largest not-for-profit public education and advocacy alliance committed to making research to improve health a higher national priority. Research!America recently completed some polling that showed that (to quote from their website) “while Americans consistently describe medical, health, and scientific research as important, just 8% of people say they are very well informed about their elected officials positions on these issues”. To help address this shortfall and to aggregate presidential and congressional candidates positions in one place for easy access, they launched the Your Candidates – Your Health questionnaire and website in 2006. In a similar vein to ScienceDebate.org, Research!America sent a letter explaining the initiative and a 13 question survey to every candidate for President or Congress who appears on the ballot this November. All of the responses that they’ve received to date have been published on their website unedited, where they are easily searchable by state, zip code, or name.

Questions in the Your Candidates – Your Health survey touch on: the role of health research investments in rising healthcare costs, investment in research and innovation as a job creation strategy, STEM (science, technology, engineering, and math) education, military investments in research, the budgets for science and technology agencies including the CDC, AHRQ, and the FDA, research and technology tax credits, the role of the government in prevention research, federal funding of embyronic stem research, and whether or not candidates have a science advisor.

It should be noted that Governor Romney chose not to answer each question individually, and instead released a statement summarizing his position on many of these issues, which can be found here. President Obama’s responses can be found here. You can find the responses of the candidates for congressional seats by searching here.

Starting in 2006, Research!America has also been collecting and posting the responses of the sitting members of Congress to these types of questions, on their Your Congress – Your Health website. It is worth noting the questions on the survey have changed over the years and some of the responses on the Your Congress – Your Health page are in response to questions that are no longer a part of the survey. For reference, you can find Congressman Ryan’s answers (submitted in June 2007) here. President Obama’s answers from when he was in the Senate (submitted in July 2007) can be found here. Vice President Biden did not respond the survey while he was still serving in the Senate.

You can find more information about Research!America on their website, here. You can follow Research!America on Facebook, here, and on Twitter, here.

CancerVotes.org

In recognition of the fact that cancer will kill more than half a million people in the United States this year alone, CancerVotes was started by the American Cancer Society’s Cancer Advocacy Network (ACS CAN) to help educate both the public and the candidates about the actions that lawmakers should take to make fighting cancer a national priority. As Chris Hansen, the president of ACS CAN, puts it:

“While we have made great progress against cancer, the disease continues to kill 1,500 people a day in this country. Lawmakers have the power to make decisions that directly impact the lives of cancer patients and their families, which is why it is important that the public understands where candidates for every office stand on issues critical to fighting and preventing this disease.”

As part of their work, CancerVotes presented Governor Romney and President Obama with four questions addressing the most pressing issues for cancer patients and their families prior to the first televised presidential debate. The candidates’ answers to these questions were then posted on the CancerVotes website, and can be viewed here under the title “US President Voter Guide”. The four topics covered in this guide are: the role of the government in leading the fight against cancer, cancer prevention, access to care, and protecting citizens from the dangers of tobacco consumption. The answers from each candidate are again presented side by side for easy comparison.

You can find more information on ACS CAN on their website, here. You can also follow ACS CAN on Facebook, here, and on Twitter, here. You can also follow CancerVotes on Twitter here.

I hope that everyone finds these resources informative and helpful as you all make your way to the voting booth on Tuesday. You are all going to vote, right?!

 

Susan G. Komen for the Cure – My Thoughts

Saturday, February 25th, 2012

A disclaimer: These thoughts and opinions are my own. This is a contentious subject for many. I have attempted to include sources for everything that I claim. Please be respectful in the comments!

Introduction

It has now been over three weeks since Susan G. Komen for the Cure first made headlines when it was announced that they would no longer be funding Community Access grants to Planned Parenthood. Over the interceding weeks, there have been a number of developments, including a reversal of that original decision and the subsequent resignation of Karen Handel, Komen’s Vice President of Public Affairs and former GOP candidate for the governor of Georgia. Over time, this story has fallen out of the headlines, with political debates over birth control, Whitney Houston and who knows what else taking center stage. This week, Komen quietly began sending out surveys to their longtime supporters regarding their management of this crisis and how they should move forward from here. I did not receive this survey, although a number of my close friends did. Many of them had a very difficult time completing that survey. They wanted to answer truthfully, but in reality, their feelings on continuing to support Komen going forward were very mixed and unclear. In discussions with those friends and others in the Breast Cancer 3 Day community this week it became obvious to me that while this debate has largely fallen off the radar of the mainstream media, our community of activists, advocates, and fundraisers is still very shaken. Therefore, I wanted to take some time to share my thoughts on this incredibly complex debate and where I stand as far as continuing to support Komen going forward at this time. This post is going to be long and possibly jumbled. I have a lot that I want to say and on many of these points, I remain just as conflicted as everyone else. This is my best attempt to honestly and objectively sort through those conflicted feelings.

A Few Words Regarding Non-Profit Organizations

Because my consideration of the ongoing debate has essentially evolved into my personal evaluation of Susan G. Komen for the Cure as a not for profit public health organization, it has been helpful for me to establish for myself why it is that I chose to support the organizations that I do and the principles that I expect those organizations to follow. This seems to be as good a place as any to start this discussion.

  1. I do not feel that the leaders of a given organization must share my political, religious, or personal beliefs on every single issue in order for us to work together for a cause that we both believe in. This is true of any future employer that I may be privileged to work for and this is true of any not for profit agency that I choose to support. If we are both dedicated to the same cause and share the same principles specifically regarding that cause, then I have no hesitation in working together.
  2. With the magnitude and scope of the challenges facing us today, we cannot expect one organization to do everything by themselves. Even within a cause that sounds focused, like “eradicating breast cancer”, there is still no possible way that one organization can fight that fight on every single front. Organizations have limited resources and must make decisions about how to best allocate those resources towards the mission that they have established for themselves. It is their prerogative to make those decisions how they see fit. It is our prerogative to support those organizations that make the decisions that are the closest to how we would make those same decisions, if we were in a position to do so.
  3. Related to the previous point, I feel that in most instances, it is somewhat unfair to criticize an organization for the work that it chooses not to do. As I said above, all organizations must make choices. If those choices are made in good faith in a way that that organization believes will best allow them to achieve the mission they have established from themselves, it is unfair to be upset at an organization for not doing something we think that they should. There are thousands and thousands of not for profit organizations doing good work towards a plethora of causes. Find the one that is doing the work that you think most needs to be done and put your support behind them rather than wasting time criticizing an organization that is doing alternative good work.

The Issue That Lit the Fire: Should Susan G. Komen for the Cure be Funding Planned Parenthood?

I will state up front that I consider myself to be a very liberal Democrat and that I believe in the work that Planned Parenthood does. I have never had an issue with Susan G. Komen granting money to Planned Parenthood for breast health services and was disappointed to read that they had reversed their position, especially in light of Ambassador Brinker’s strong defense of Komen’s support of Planned Parenthood in her memoir, Promise Me. In many communities, the only option that many women have for any kind of affordable health services is through Planned Parenthood. Many, many women only get breast exams when they go in for their annual exams in order to maintain a prescription for birth control. Because Planned Parenthood is such an important source of birth control and other family planning education for so many women, they end up performing a large number of breast exams as part of their everyday services. Having an organization like Komen supplementing their funding so that they can continue to provide these services is often critical to keeping their doors open in more rural, poor communities.

I was particularly troubled that based on the statements that were released by a number of Komen’s 120 community affiliates (including by both the Atlanta and CNY affiliates), this decision was made by solely by the Susan G. Komen central offices (herein Komen National), with no consultation from the affiliates. The local affiliates of Komen for the Cure are their own corporate entities that are distinct from Komen National. They are only tied together via their affiliate contracts (which, admittedly, I have not personally read). My understanding, though, is that in exchange for the use of the Susan G. Komen name and logo, the affiliates return 25% of the money that they raise locally to Komen National to fund education and research programs (not overhead or corporate salaries, per my local Atlanta affiliate representatives that I talked to). No money actually flows from Komen National to the affiliates. The remaining 75% of the money that is raised by the local affiliates through Race for the Cure and other fundraising events stays within those local communities. It is the affiliates that individually review and choose to reward every single community grant that is awarded by Komen. It really bothered me, then, that Komen National was making this important declaration of how those monies could be allocated without consulting the very people 1, who had actually raised those funds and 2, who best understood what was needed in their individual communities. To me, this represents a strong disconnect between the work being done by the Komen affiliates and the central Komen National offices.

Thankfully, the fallout of this decision on Planned Parenthood appears to be minimal. If anything, they may be stronger now than they were before, having seen an enormous uptick in direct donations following Komen’s decision. Likewise, before I even knew any of this was happening (as I was blissfully hanging out on a cruise ship in the Caribbean at the time), SGK International had also reversed its position, stating that Planned Parenthood’s eligibility to apply for future funding had been restored.

(As a side note, many in the media have claimed that there is some conspiracy in the way Komen’s reversal statement was worded. “Aha! But they haven’t actually committed to funding Planned Parenthood in the future! They only said that Planned Parenthood is eligible to apply again!” I see no such conspiracy in Komen’s statement. Community grants made by Komen affiliates are only approved for one year at a time. To my knowledge, no currently funded grant to Planned Parenthood was defunded. Committing to funding more grants for Planned Parenthood in future years is contrary to their granting model. No organization is guaranteed renewal of their community grants, nor should they be. That goes for Planned Parenthood too.)

Ultimately, this should have been the end of this debate. However, the conflicting reasons that Komen gave for changing their granting policies (which I discuss below) opened the floodgates for much more detailed scrutiny of Komen’s finances and business practices. And that, my friends, is where things get messy and where I get conflicted.

Truthfully, I haven’t invested all of this time into supporting and advocating for Susan G. Komen because of their community outreach work. I think it’s wonderful that are doing that important work, I really do. But I have supported them all of these years because of the education and awareness work that they do and most importantly, for the vast amounts of money that they have raised and invested in breast cancer research. I’m a scientist and I believe in science. Komen is the largest funder of breast cancer research outside of NIH and the federal government. That’s why I support Komen and that’s why I ask others to support them as well on my behalf. Period. While it was troubling, I didn’t initially see how this firestorm over Komen’s community grants criteria should affect my support for their work raising money for breast cancer research. Alas, further research into the motivations behind the Planned Parenthood decision has revealed that those same troubling motivations may be affecting their decisions regarding their greater business practices. And I fear that the scientific research grants that I was so proud to be helping to fund may be hurting as a result.

Susan G. Komen is NOT a Women’s Health Organization – STOP Saying That Is!

Please pardon me this brief interlude, if you will, relating to many of the articles that I’ve read discussing Susan G. Komen’s responsibility to women as a women’s health organization. I want to scream this from the top of every mountain and tattoo it on my forehead: SUSAN G. KOMEN FOR THE CURE IS NOT A WOMEN’S HEALTH ORGANIZATION. Yes, breast cancer affects breasts which happen be a body part found on women. Yes, 1 in 8 women will be touched by breast cancer. But do you know who else has breast tissue that can develop breast cancer? MEN. Trust me, I’ve met them. Per the Komen website, 2190 MEN will get breast cancer this year and more than 400 of them will die from it. That means that one in every five men who are diagnosed with breast cancer will die from the disease. You know why that percentage is so high? Because most men don’t have a clue that they can get breast cancer too, which means that they are often diagnosed at much later stages of the disease. Moreover, many men are so ashamed that they have a “women’s” disease that they won’t even get the proper treatments for it. This is UNACCEPTABLE. Breast cancer is a disease that can strike anyone, any time, any where. As a breast cancer advocacy organization, Susan G. Komen’s responsibility is to promoting the best public health knowledge and treatment available, regardless of whether that knowledge or treatment applies to men or women. Susan G. Komen shouldn’t have continued funding Planned Parenthood because they have an obligation to women. They should have continued funding Planned Parenthood because Planned Parenthood is doing good work. Period.

So Why Did Susan G. Komen Try To Stop Funding Planned Parenthood?

Well, that appears to depend on who you ask and on which sources you read. I don’t think I’ve read a single unbiased report about the real motivations behind Komen’s decision, but I have read pieces that were written from just about every side of this issue imaginable. As best as I can establish, it has been reported that Komen’s decision was based on either:

  1. A legitimate desire on the part of the organization to separate themselves from potentially contentious political issues such as abortion, especially in light of the negative press their ongoing collaboration with Planned Parenthood was generating. As such, a new rule was put in place to help them identify which organizations might be politically “trouble”. This rule established that no organization currently under federal investigation for mismanagement of funds or criminal wrong doing was eligible to receive community or research grants. This is essentially the rationale provided by Susan G. Komen’s own statements and representatives.
  2. A vast right wing conspiracy spearheaded by a GOP nutjob to secretly but explicitly screw over Planned Parenthood in the name of Pro-Lifers everywhere. This is what every liberal media piece seems to want to be true.
  3. A genuine change of community granting principles with the end goal being more direct accountability of the success of those grants. As a result, funds are being redirected from so called “pass through” organizations like Planned Parenthood (who only recommend women for further screening and treatment rather than providing it themselves) and to organizations that directly provide mammography and treatment services to women. Strangely, this is the reasoning that Ambassador Brinker made in her YouTube statement and in her interview with Andrea Mitchell.

To me, my best guess is that the real reason is somewhere hiding in the middle of all that. Were the ongoing grants to Planned Parenthood causing Komen headaches? Yes, definitely. While I haven’t experienced it directly, many of my fellow 3 Day walkers and Race for the Cure runners have been told explicitly by friends and family that they will not donate to an organization that supports Planned Parenthood. Komen also lost a number of corporate sponsors, like Curves Fitness, due to their ongoing support of Planned Parenthood. Moreover, it has been widely reported that many of the members of Komen’s corporate board of directors and major donors are conservatives who believed that abortion should be illegal. It is not a stretch to believe that Komen was looking for a reason to cut ties with Planned Parenthood. Abortion, and by extension, abortion providers like Planned Parenthood are lightening rods for controversy. I think it’s valid that Komen wanted to distance themselves not just from Planned Parenthood but from any organization that is likely to bring unneeded controversy into the cause of breast cancer advocacy, a cause that has plenty of its own controversy already.

Moreover, I do think that Karen Handel played a huge role in magnifying the controversy and coming up with the reasoning that was given for cutting ties with Planned Parenthood. I live in Georgia and am very familiar with Handel’s politics and positions. She and I don’t agree on much, that’s for sure. However, I will give her the extreme benefit of the doubt that she did not take a job at Komen specifically to screw over Planned Parenthood. My guess is that this is an issue that Komen was already debating and because it is a cause that is important to her, Handel jumped on it. I have read reports that she trumped up the relatively moderate baseline level of negative feedback that Komen was getting on this issue and that she personally helped draft a rule that would specifically exclude Planned Parenthood. Unfortunately, the rule that Handel and others came up with doesn’t really hold water, for two reasons:

  1. Susan G. Komen is currently funding $7.5 million dollars of breast cancer research at Penn State. Penn State, like Planned Parenthood, is currently under federal investigation for the mismanagement of the Jerry Sandusky scandal. As such, Penn State should likewise be excluded from receiving Komen grants, even under the newly modified rule that allows funding to Planned Parenthood (I think). That does not appear to be the case.
  2. Susan G. Komen is also still doing business with Bank of America. In fact, Bank of America is one of the largest corporate sponsors of Susan G. Komen. Bank of America also under investigation in a number of local, state, and federal courts for their role in the mortgage crisis, among other things. Which means Komen feels comfortable doing business with organizations that are under investigation when it benefits them but not when it causes harm to their brand?

So, yeah. The new rule appears to have crafted specifically to block funds to Planned Parenthood without a lot of consideration about how else it would applied.

Now, what about the reason Ambassador Brinker has given? Well, to me, that reason seems valid. Komen wants to be able to quantify the true impact of their dollar. It’s easier to do that if you’re directly funding screening, not recommendations. The question is, if that was the real reason for cutting funding to Planned Parenthood, why wasn’t it the only reason given? This is per conjecture on my part, but my guess is this is the reasoning Ambassador Brinker WANTED to give for the funding change all along, but that the rest of the board didn’t feel that it was the best way to structure their message. They should have listened to Nancy, I’m afraid. Instead, it just all goes to emphasize one very important thing about Susan G. Komen: they are no longer making decisions about how to best fight breast cancer based solely on what is best for the fight against breast cancer. Social politics and brand management seems to be growing in importance in the world of Susan G. Komen for the Cure. And that extends to more than just their community grant making policies.

The Work That Komen Chooses Not To Do May Be More Important Than The Work They Choose To Do

Yes, I know I said right at the top that in most instances, we should not criticize an organization for the work they don’t do because all organizations must make decisions about how to best allocate their resources. However, I also qualified that statement by saying that this only applied when “those choices are made in good faith in a way that that organization believes will best allow them to achieve the mission they have established from themselves.” From what I’ve read, I’m not sure that Komen National is making their business decisions in good faith at this time. The changing explanations regarding the Planned Parenthood grants suggests this is the case. I have a few other examples as well that have led me to question Komen’s motivations and I’m going to work through each of them here.

1. Susan G. Komen funding for breast cancer research has fallen to just 15% of their overall budget, down from 29% of their budget as recently as 2008. Meanwhile, more than 18% of their budget covers fundraising and administration.

As I said above, I have chosen to devote my time to Susan G. Komen because they are largest funder of breast cancer research outside of the federal government. And make no mistake, that 15% of their budget accounts for $63 million dollars of research funding this year alone that we otherwise would not have. I also fully acknowledge that Komen National is choosing to fight breast cancer on multiple fronts, with 43% of their annual budget in 2011 going towards education, 12% to screening and 5% to treatment. As such, the funding pie must be cut up into multiple slices. However, it is troubling to me that during a period when the annual revenue that Komen collects has increased from $100 million to close to $420 million, the relative amount allocated to research has gotten chopped in half. Education and screening are important and I will not deny that. But those programs will not find a cure for breast cancer. Only research will do that. And as another writer pointed out (and frustratingly I can’t find the link where I read this), how can an organization continue to brand itself as being “for the cure” when they are devoting less and less resources to the one area that could actually find said cure?

Frankly, these numbers were eye-opening to me as a scientist and a representative of Susan G. Komen. They also pissed me the hell off.

2. The research that Susan G. Komen is funding is only focused on screening technology and treatments, not prevention.

I’ve read this in a number of places (most clearly in this article by Dr. Susan Love) and I both find it troubling and I also don’t care. Truthfully. From what I have read, and this is an area I’m admittedly still actively reading and learning more about, it does appear that when it comes to setting funding priorities, Komen does value work on treatment and screening above prevention and the basic science of cancer. I am not going to get into the pros and cons of each type of research here. I intend to cover it more in much more depth in future blog posts because it’s both fascinating to consider and also really important. But it’s a bit beyond the scope of this already very long post. However, I do want to talk about the alleged motivations that appear to be behind Komen’s funding priorities.

It has been reported that many of Komen’s board members, including Ambassador Brinker herself, also sit on the boards of other pharmaceutical companies, biotechnology companies and the like potentially creating serious conflicts of interest. This is not a unique situation to Komen National (as evidenced by this similar critique of the American Cancer Society), although it does appear to more common here than on other boards. As a result, many in the media have alleged that Komen National chooses to fund screening and treatments because that is the type of research that benefits the other companies that they work for. Prevention, on the other hand, makes no money for anyone since you can’t make money off a disease that no one is getting anymore. (Just ask the people that make polio meds!) Moreover, I have read assertions that Komen chooses not to delve too deeply into the environmental causes of cancer because the large companies that the board members also work for are ardently opposed to stricter environmental restrictions and laws.

I have no idea how true any of these claims are and seeings as I’m not on the Komen Board of Directors myself, I have no way of finding out. These are certainly damning allegations to make of the organization and an incredibly troubling revelation if it is true. However, I think it’s unfair to draw big red Xs on Komen based on what is so far speculation and gossip. For now, though, this something I am also keeping my eyes on especially with regards to the Komen Advocacy Alliance‘s legislative priorities.

An important point, though, before I move on. At no point in this section have I said that the work that Komen is funding should not be funded. We need to be funding research into every aspect of breast cancer that we can think of. Genetic causes, environmental causes, biological causes, screening, diagnoses, predicting prognoses, treatments, ALL OF IT. Susan G. Komen is choosing to focus their efforts and their money primarily on two specific areas of research: screening and treatment. They cannot single-handedly fund all of the research that is needed on this disease and the work they are funding needs to be done. For me, it comes down to a question of if I believe they are funding the MOST valuable work and if not, is there another organization that is that I would prefer to support instead? That’s a question we all need to answer for ourselves and it’s still an open question for me.

3. Susan G. Komen is no longer funding embryonic stem cell research. Or something like that.

This is a topic that is important to me more for what it says about how Komen makes its funding decisions rather than the issue itself. It is also a topic that has been at the center of boatloads of misinformation. Let me try to walk through what has been reported and importantly, by whom.

In July of 2011, LifeNews.com (a Christian conservative pro-life website) reported that by their estimation, in 2010, Susan G. Komen had funded almost $11 million dollars of research that was taking place at institutions where embryonic stem cell (or ESC) research was also taking place. Not that Komen was directly funding the ESC research itself (which it wasn’t and has never funded, per Komen’s own reporting), but that Komen was funding other research at institutions where totally other researchers studying completely different things were using ESCs. In the fallout from the Planned Parenthood debacle, LifeNews.com reported that in addition to this massive “victory” over Planned Parenthood, the “pro-life” forces at Komen had also driven Komen to quietly change their policy on ESC back in November 2011. In particular, they referenced this particular quote from a statement that Komen no longer has on their website (but which I have a copy of and can share if anyone wants it):

Komen supports research on the isolation, derivation, production, and testing of stem cells that are capable of producing all or almost all of the cell types of the developing body and may result in improved understanding of or treatments for breast cancer, but are derived without creating a human embryo or destroying a human embryo.

Moreover, Lifenews.com (and other outlets that then picked up the story like Care2.com) somehow then claimed that Komen was straight up pulling funding from organizations like Johns Hopkins and the University of Kansas Medical Center because ESC research was being done at those organizations. Ultimately, it was being reported that as much as $12 million dollars in funding was being cut. (Or more accurately, “redistributed” to other researchers, I suppose.)

So, that’s troubling. If the most promising research for curing breast cancer happens to involve ESCs, Komen just isn’t going to fund it? Because of social issues? Or even worse, that if the most promising research for curing breast cancer happens to be taking place at an organization where ESC research is also taking place in a completely different lab then Komen’s not going to fund it either?! That’s not acceptable to me and in my estimation demonstrates that Komen is no longer making funding decisions based solely on what is best for their mission of curing breast cancer. This is, to put it bluntly, my ultimate dealbreaker with Komen.

But… that’s not the end of this debate because that doesn’t seem to actually be true. While the above quoted statement DID appear on Komen’s website in November of 2011, it is not their current stated policy, which was clarified in an updated statement that appeared on their website on February 5th. Rather, they stated emphatically that they had not defunded anyone over the use of ESCs, either by themselves directly or by other researchers at their institutions. They also again emphasized that they have never funded ESC research because it just hasn’t been promising for treating breast cancer. To quote the actual statement directly:

Embryonic stem cells are currently considered to have the most potential for use in the regeneration of diseased or injured tissues. Whether embryonic stem cells will have a role or will be of value in the fight against breast cancer has not been clearly determined. To this point, embryonic stem cell research has not shown promise for application in breast cancer. Contrary to circulating online reports, Komen has not “de-funded” any grantee based on human embryonic stem cell research conducted at their institution. Komen will continue to focus its research efforts on the most promising areas of science which have the greatest potential for breast cancer patients.

Moreover, the ScienceInsider (an online magazine by the American Association for the Advancement of Science or AAAS) reported that minimally, no funding had been pulled from the Komen funded researchers at Johns Hopkins, one of the main organizations mentioned in the various LifeNews.com reports.

Granted, the new statement posted on the Komen website does not state that Komen will fund ESC research in the future if it should prove valuable to do so. I hope that going forward, Komen considers grant applications for scientific funding solely based on their scientific merit regardless of social issues. They should operate as an objective disseminater of donated funds, not letting political pressure affect their decisions.  It is what is right for their cause and for the patients who have pinned their hopes on Komen actually finding a cure. Like I said about the percentage of Komen funds going to research each year, I’m going to be keeping my eye on this issue too.

4. Susan G. Komen is spending too much money on Nancy Brinker’s fancy lifestyle/suing smaller organizations/advertising themselves.

All legitimate complaints relating to Komen National’s business practices. Susan G. Komen claims to spend 83 cents of every dollar on “mission programs”, which includes that rather large 43% of the budget allocated for “education”. At least one analysis of this “education” budget reveals that it includes money allocated for things like postage and shipping, printing, salaries and a whole lot of “other” things. That seems like money that could possibly be better spent. Ambassador Brinker is paid A LOT of money as the CEO of the charitable organization that she founded. It should be noted that this seems to be on par with CEO compensation for other major not for profit agencies, per the quotes from the president of Charity Navigator in this interesting article. She also was apparently reimbursed by Komen for some $150,000 in expenses when she was employed by the Bush Administration, including paying for first class flights. Also falling under this category of potentially wasteful business practices is the huge debate last year around the amount of money Komen was spending suing smaller organizations that were infringing on their copyrights (which my friend Jay did a bang up job of summarizing here and here). Again, that money probably could have been better spent.

The reality is that not for profits that operate on the scale of Komen for the Cure are big businesses. For good or for bad, there are people whose livelihoods depend entirely on these organizations succeeding. There are costs associated with running businesses of this scale. Are Komen’s business practices established by what is best for their brand, their board, or their mission? I think each person has to make that decision for themselves. If you don’t think Komen’s business practices are in line with how you would run this business, then it is your right and responsibility  to find an organization to support that is more in line with your beliefs. All of these little things individually don’t bother me personally. I understand the cost of running a business. Hell, I’m trying to get hired by one of these organizations. But all together, in line with the other points we’ve discussed so far? I have serious concerns. I think Komen’s motivations have shifted a bit and that it would behoove them to re-examine their priorities and recent decisions. I am hopeful that this increased scrutiny on Komen will result in what was once a strong and trustworthy organization returning to former glory. I really am.

My Grave Concern and Where I Go From Here

In the end, whether you continue to support Susan G. Komen for the Cure or not, that is your decision. They are a good organization that is continuing to do good work and that cannot be contested. They are continuing to fund important community support programs. They are continuing to fund research into better treatments and improved screening and diagnostics. Komen has done amazing work at educating the public about breast cancer and they continue to do so. I am proud to support anyone who continues to advocate for them via the Race for the Cure, the Breast Cancer 3 Day or any other activity. In fact, after talking to some representatives from the Atlanta Komen Affiliate, I am proud to stand by them in support of their community outreach and education work. Be on the look out for posts about the upcoming Atlanta Race for the Cure soon!

That being said, as outlined in detail above, I am no longer convinced that Susan G. Komen for the Cure at the national level is the breast cancer advocacy organization that best reflects my personal beliefs for how to most effectively (and quickly) eradicate breast cancer once and for all. As such, I am strongly reconsidering if I want to continue advocating on their behalf. I have too many reservations about their business practices and funding decisions to ask others to donate to their organization in my name at this time. I think Komen is about to undergo some major internal renovations. I am hopeful that these changes will be for the better and that I can again stand with Komen in the future.

I am currently researching other breast cancer (and general cancer) organizations and will post again in the future about what I find. It would be unfair to put Komen through this level of scrutiny without doing the same to other breast cancer organizations that I am considering supporting instead. In the end, I may find that Komen is still the organization that is doing the most effective work against breast cancer. They may not be. I owe it to myself and those who have donated to me in the past (and hopefully in the future) to do that research.

Ultimately, my greatest fear is that the growing backlash against Komen is going to translate into millions of dollars that are lost from a cause that can’t afford to lose money or support. The one thing that Komen does better than anyone else is make it easy for regular people to get involved. Whether you want to run a marathon, walk 60 miles, run a 5K or just buy something pink, Komen has a way for you to contribute. If you want to raise $2300 or just $23 dollars, Komen makes fundraising on their behalf easy. Frustratingly, other organizations make it a lot harder, especially if, like me, you feel you can have more of an impact rallying others rather than writing a check. Please, if you have given up on Komen, don’t give up on this fight. Do your research and figure out how you can stay involved through other organizations, even if it’s hard to do. Keep checking back here as I’m planning to highlight other ways to get involved in the fight against breast cancer, just as I have always done. Whatever you do, STAY IN THIS FIGHT. People like my mom need you.

“Cancer doesn’t have a political affiliation, and is purely pro-death. Therefore I will remain steadfastly pro-cure.” ~ Julie Brock

Dr. Cincotta is back in the house!

Friday, February 10th, 2012

Phew. It’s been a long time since I’ve made it over to this part of the internet!

As you probably know, the reason for my extended absence was an important one: I was finishing my PhD in Neuroscience. As noted on this blog, I really locked things down and got focused in July 2011. From then on, my days, nights and weekends were filled almost entirely with reading, writing, editing, writing, analyzing, and yet more writing. In mid-October, I locked down my defense date and things got even more intense as I was working under a non-negotiable deadline. I even skipped out on almost the entire Atlanta 3 Day, which was a heart-wrenching sacrifice to make. I have never worked harder on any one thing in my life than I worked on my dissertation during that time. It was stressful and ugly, but I got through it and thankfully, my husband didn’t disown me in the process. On November 15th, at around 2am, I was finally able to tweet the words I’ve been wanting to tweet since before Twitter was a thing:

Guys. I just finished my dissertation. Whoa.

When I wrote that, I had just sent out my finished dissertation to my thesis committee members. They had two weeks to review it, and on November 28th, I received five provisional approvals of my dissertation. A whirlwind of intense nerves and preparation then followed and on December 15th, I stood up in front of my friends, family, colleagues, and thesis committee and successfully defended nine and a half years of graduate school work. The whole process was a whirlwind and it took a while before it actually felt real. Truthfully, it still doesn’t feel real, even this many weeks later.

I took a brief writing hiatus to cheer on Team Twitter ATL at the 3 Day back in October

I knew that when I finished my dissertation and my defense, it would take me a little while to “recover”. It was a prolonged period of intense stress and it definitely took both a mental and physical toll on me. I thought that after two weeks of down time, I would pop back up, ready to jump into my old life again. That definitely hasn’t been the case. Over the weeks since my defense, I’ve been making a concerted to listen to what my mind and body needs and to just take it easy. I have been trying to restore my running and exercise routines (including racing for the first time since July on New Year’s Day!) and I’ve been taking care of some lingering health issues that cropped up while I was writing as well. I celebrated my success with friends and traveled to DC in mid-January for a dear friend’s baby shower. I even took a 10 day long trip with my mom that started with a day at the Wizarding World of Harry Potter and involved a week long cruise around the western Bahamas. It was low key, relaxing and just what I needed. In short, I’ve been decompressing. It turns out, I desperately needed it, much more so than I initially thought.

At the Atlanta Track Club Resolution Run on New Years Day with Julie (left) and celebrating with some Atlanta “ex-pats” up in DC (right)

2011 was one of the hardest years of my life. In order to finally accomplish a serious career goal that has been hanging over my head for almost a decade, I had to shut down just about everything else in my life that brought me joy, happiness and fulfillment. As I was toiling over my computer and my stacks of papers last fall, I made a very important promise to myself: in 2012 and beyond, I am following my heart. It’s time to rebuild my life. It’s time to rebuild my friendships that have been languishing. It’s time to do myself a solid and focus on my health and fitness. It’s time to rediscover all of the things that I love about living in Atlanta. It’s time to restart old hobbies (like blogging!), pursue new interests and have fun. And most importantly at this juncture, it’s time to find work and a career that is fulfilling, challenging and meaningful to me. I fell out of love with lab research a very long time ago and without passion for that work, it became tortuous to put in the long hours that being a successful scientist requires. I’m ready for new challenges and I’m ready to fall in love with my work again.

Floating in a tube down the White River in Jamaica (left) and Mom hanging with the dolphins in Cozumel, Mexico (right)

Now that I’m feeling more like my old self again, I am starting to look at the big picture and make some decisions. Because my defense was so late in the fall, I missed the deadline for processing the paperwork for a Fall 2011 graduation. As such, I am technically still enrolled at Emory University through the end of the Spring 2012 semester, at which time my degree will be conferred. While I would have loved to have left all of that behind in 2011, this gives me some time to wrap up some loose ends around my lab. I am still revising my final manuscript, which will hopefully be published next summer. I am also jumping into my job search with both feet. I am pursuing job opportunities in the Atlanta area that will allow me to work at the intersection of science, communications, and advocacy. I am also looking to strengthen my background in public health and political advocacy through volunteer work and training with a number of biomedical health not-for-profit agencies. While I am going to be somewhat cautious in what I publicize about this process (especially on the job search front), I am anticipating sharing some my volunteer and training experiences with all of you in case you are likewise interested in pursuing more formal involvement in the not-for-profit area beyond the Race for the Cure/Relay for Life type activities. It’s going to be a little slow as I feel out the direction that I want this blog to move in (while respecting my hopefully future employers right to privacy), but rest assured, I have no plans of closing it down any time soon.

Relaxing on the boat with margaritas!

Finally, I would be remiss if I closed this “I’m back!” entry without acknowledging the recent events surrounding Susan G. Komen for the Cure. When all of the news was breaking about SGK, I was blissfully reading books by the pool on a boat in the Caribbean, floating down a river in Jamaica, snorkeling in Grand Cayman, and swimming with dolphins in Mexico. As such, I missed the outpouring of news, misinformation and immediate emotional reactions, which I’m seeing as a fortunate happenstance. I have been collecting and reading a wide array of news articles, blog posts, and interviews on the events of the last week or so and have been able to take it in with an open mind, untainted by the interpretations and reactions of my friends and family. I was even lucky enough to be able to meet with some representatives of the Komen Atlanta affiliate in person, as we had a pre-arranged meeting set up before I left to discuss volunteer opportunities. In order to make sure that my ultimate actions are reflective of my personal feelings (and not just a reaction to what others are doing/saying), I have purposefully stayed away from Facebook and Twitter this past week while I work through the material I gathered. I am still processing all of this information and will have a post up sometime over the weekend summarizing my thoughts and how these events will color my involvement in SGK in the future. I have found the entire debate to be fascinating and it has resulted in some serious soul searching on my part. Rest assured that any decision that I make moving forward will be well considered and well informed.

So that just about sums up the last eight months in the world of Dr. Kristen Walks. With my new degree in hand, and finally free of (most of) the shackles of graduate school, I’m stepping out onto a new path. It’s scary, but exciting to be putting my money where my mouth is and to be finally be chasing some dreams that I’ve had for a long time!

Hanging out in Ocho Rios, Jamaica

In the News: The new mammogram recommendations

Friday, December 11th, 2009

Welcome to the first installment of what will hopefully be a regular installment spotlighting stories relating to breast cancer research. While I claim no expert knowledge regarding breast cancer or oncology, I am a trained biomedical scientist with a passion for research advocacy. As such, I wanted to use my unique point of view to highlight some advancements (or set backs) in breast cancer research over the coming months.

To start, I wanted to focus on the newly released guidelines for mammogram screenings. This story has been playing out in the national media over the last few weeks, and while much of the hype around it has quieted down, I think it is critically important that everyone understands the what the study itself  was designed to address and what the actual findings of the study are.

About the United States Preventative Services Task Force

From the USPSTF webpage:
The U.S. Preventive Services Task Force (USPSTF), first convened by the U.S. Public Health Service in 1984, and since 1998 sponsored by the Agency for Healthcare Research and Quality (AHRQ), is the leading independent panel of private-sector experts in prevention and primary care. The USPSTF conducts rigorous, impartial assessments of the scientific evidence for the effectiveness of a broad range of clinical preventive services, including screening, counseling, and preventive medications. Its recommendations are considered the “gold standard” for clinical preventive services.  The mission of the USPSTF is to evaluate the benefits of individual services based on age, gender, and risk factors for disease; make recommendations about which preventive services should be incorporated routinely into primary medical care and for which populations; and identify a research agenda for clinical preventive care.
It is also important to recognize that (again from the USPSTF website):
“Recommendations issued by the USPSTF are intended for use in the primary care setting. The USPSTF recommendation statements present health care providers with information about the evidence behind each recommendation, allowing clinicians to make informed decisions about implementation.”
That is, the recommendations of the USPSTF are not intended to direct individuals in making decisions about their personal treatments nor are they intended to direct what services should be covered by health insurance plans.  These recommendations are solely to help primary care physicians make more informed decisions when recommending treatments to their patients.

This USPSTF is made up of 17 individuals that are appointed by the head of the Agency of Healthcare Research and Quality (AHRQ) and vetted by Health and Human Services (HHS).  These individuals come from various areas of health care, including doctors, nurses and public health policy.  About half of the members are women and the majority of them come from an academic background.  Of these members, I think it is important to note that there are no oncologists, oncological surgeons, radiologists or Ob/Gyns.  There is one member, Dr. Kimberly Gregory, who is the Director of Maternal-Fetal Medicine and Women’s Health Services Research at Cedars Sinai Medical Center, but otherwise, there are no other experts in women’s health.  In addition to the members of the panel, there are also a number of partners that “contribute their expertise in the peer review of draft USPSTF documents and help disseminate the work of the USPSTF to their members.” (USPSTF website).  While these groups represent a wide swath of the health services industry, it is again worth noting that there are no women’s health, oncology or radiology groups represented.  Because of the potential implications of the findings of the USPSTF on health insurance policies, I also wanted to point out that both the Centers for Medicare and Medicaid as well as AHIP, the association of health insurers ARE USPSTF partners.  That is not to say that insurance companies are behind these findings, but I do think it is important to recognize who is actually involved in this process when thinking about the findings of the Task Force.

More about the USPSTF, including a list of all members and partners can be found at http://www.ahrq.gov/clinic/uspstfab.htm.

About the Screening for Breast Cancer Recommendations and Study

This particular study and the resulting Recommendation Statement were designed to update the original recommendations on breast cancer screening for women of “normal risk” that were released by the USPSTF in 2002.  The USPSTF identified a series of specific areas from the 2002 report that they felt warranted more detailed investigation.  Specifically, the USPSTF felt that the 2002 findings regarding film mammography for women between the ages of 50 and 70 were strongly supported, but that questions still remained for women ages 40-49 and 70+.  In addition, the USPSTF wanted to reexamine the evidence surrounding the efficacy of breast self exams (BSEs) and clinical breast exams (CBEs).  Finally, the USPSTF wanted to begin to examine digital mammography and MRI in lieu of film mammography for women of all ages.   For each screening method that was reviewed, the USPSTF was solely interested in examining the effect of that screening method on the breast cancer mortality rate.  This is an important point that I will be returning to later, so I wanted to make sure to emphasize it here.

After defining these questions, a study was commissioned to address these particular questions.  This study was performed by a group from the Oregon Health & Science University; Veterans Affairs Medical Center; and the Women and Children’s Health Research Center, Providence Health & Services in Portland, Oregon.  For this study, all of the relevant published literature was reviewed and the data from independent studies that met the inclusion criteria of the researchers were pooled together.  A meta-analysis of this data was then performed to best identify the trends across multiple, independent studies.  The results of this study were published in the November 17th edition of Annals of Internal Medicine (vol 151, issue 10).

The members of USPSTF reviewed the findings of the study linked to above  in order to make their recommendations.  After weighing the benefits of the various screening methods for the age groups of interest against the identified harms that are associated with those same methods, the final  recommendations of the USPSTF were released in a Recommendation Statement on the HHS website.  Each recommendation was also graded using this classification system.  Their recommendations, copied from the above linked Recommendation Statement, are as follows:
  • The USPSTF recommends biennial screening mammography for women aged 50 to 74 years.
    Grade: B recommendation.
  • The decision to start regular, biennial screening mammography before the age of 50 years should be an individual one and take patient context into account, including the patient’s values regarding specific benefits and harms.
    Grade: C recommendation.
  • The USPSTF concludes that the current evidence is insufficient to assess the additional benefits and harms of screening mammography in women 75 years or older.
    Grade: I Statement.
  • The USPSTF recommends against teaching breast self-examination (BSE).
    Grade: D recommendation.
  • The USPSTF concludes that the current evidence is insufficient to assess the additional benefits and harms of clinical breast examination (CBE) beyond screening mammography in women 40 years or older.
    Grade: I Statement.
  • The USPSTF concludes that the current evidence is insufficient to assess the additional benefits and harms of either digital mammography or magnetic resonance imaging (MRI) instead of film mammography as screening modalities for breast cancer.
    Grade: I Statement.
A detailed explanation for each recommendation can be found in the Recommendation Statement here: http://www.ahrq.gov/clinic/uspstf09/breastcancer/brcanrs.htm I highly recommend that anyone that is interested in this issue (and if you’re still reading this, I assume that you are) read the Recommendation Statement.  While the study on which these findings were based is fairly dense and written in “science-ese,” I found the Recommendation Statement very straight forward and easy to follow.

Specific Points of Discussion

1. The Cost/Benefit Question

The type of study on which the USPSTF based their recommendations is what is known as “comparative effectiveness research” or CER.  This type of research is focused on evaluating whether the benefits of a specific type of disease screening or treatment justify the costs of doing that screening or treatment in the first place.  CER has been pretty controversial over the years, in part because the relative values of both the benefits and the harms are highly subjective to the reviewer.  Personally, after reading this study, I found myself in strong disagreement with USPSTF almost entirely because I feel that they undervalued the advantages to breast cancer screening while simultaneously overvaluing the “harms” of screening.

So what are the advantages to breast cancer screening?  According to the USPSTF, the only advantage of breast cancer screening worth considering is a decrease in breast cancer mortality.  That is, saving lives that would otherwise be lost to breast cancer.  And the screening study did find that screening saves lives, stating that

“Our meta-analysis of mammography screening trials indicates breast cancer mortality benefit for all age groups from 39-69 years, with insufficient data for older women.”    (my own emphasis added)

It is not under debate that breast cancer screening, and specifically mammography saves lives.  The question then is at what age does number of lives saved outweigh the risks associated with screening.  But before we get into the specifics of that, I wanted to take a minute to talk about the additional advantages to mammography and breast cancer screening in general that the USPSTF failed to consider.  Mammograms have been shown to extend one’s life span when battling breast cancer, something that I personally value very highly.  In addition, when cancers are caught at earlier stages, the treatments required are much less invasive, take less time and are more affordable than treating a later stage cancer.  Without considering any of these very tangible advantages to mammography, I think this study falls incredibly short.

Now, what about those negatives?  In this study, the authors conclude that there are five major “harms” to be considered when evaluating the effectiveness of mammography and other screening methods, which I’m going to address one at a time.

1.  Radiation exposure during screening:  This is a very valid concern for many women and a legitimate potential harm of screening, to my mind.   In this study, the authors found that the radiation exposure during mammography is very low.  They felt that the ultimate harm of exposure was unclear but that some women may be at increased risk of developing breast cancer in response to these levels of radiation. The USPSTF noted that “radiation exposure, although a minor concern, is also a consideration.”

2.  Pain during procedures:  A major concern for CER is the level of discomfort and pain caused by the test being evaluated.  If a test is overly painful to the patient, I think that would constitute a legitimate  argument against the widespread use of that test.  The screening study here found that “many women consider mammography painful but don’t consider it a deterrent to further screening.”  Moreover, the USPSTF only mentioned pain as a deterrent to mammography once and concluded that “it had little effect on mammography use.”  As such, for the purposes of this study, the pain of mammograms was not considered a significant harm of mammography.

3.  Anxiety, distress and other psychological responses:  This is the issue where I really begin to disagree with both the authors of the study and especially the USPSTF.  One of the major “harms” that was considered in evaluating mammography effectiveness was that in the event that something was detected on a mammogram that warranted some form of follow-up, the women suffered from anxiety and breast cancer worry.  Personally, I would gladly endure a bought of nerves in order to know for sure what my questionable lump or lesion was.  This is doubly true for BSEs.  If I find something abnormal in my breast, I want to know what it is.  Trying to protect me from being concerned for my own health is a futile exercise.  If I have a bad headache, a strange freckle or a sore leg, I’m worried about what it might be and I highly doubt I’m the only one.  This idea that women are too fragile psychologically to potentially get bad news is ludicrous.  That this was even a concern of the effectiveness study really bothers me.  Interestingly, the actual conclusion of the authors of the study was that “patient adverse experiences like anxiety are common but seem to be transient and do not adversely influence future screening practices.” The USPSTF, on the other hand, seems to consider anxiety and distress to be a much more serious concern and reference it repeatedly.  My personal feeling is that this harm is seriously over-valued by the USPSTF.

4.  False positives/negatives:  The main “harm” here is that too many mammograms produce unclear results, leading to excessive follow up imaging and/or unnecessary biopsies to determine the true nature of the breast abnormality.  While mammograms may result in higher than ideal rates of false positives, the lack of a better test makes this “harm” less of a concern, at least to me.  An imperfect test is better than no test at all.  False negatives, while still more common than would be ideal, are less of a concern in regards to breast cancer screening.  Based on all of this, I consider this harm to be over-valued by the USPSTF as well.

5.  Overtreatment:  Overtreatment is defined as the treatment of a disease that would not become a risk to one’s life during their life expectancy.  This is a major concern of both the study authors and the USPSTF.  Given what is currently known about breast cancer progression, I disagree with the authors and the task force about the current magnitude of this problem, as I will discuss in detail below.  As a result, I consider this harm to also be over-valued by the USPSTF.

In conclusion, I feel the incredibly narrow focus on the effects of breast cancer on mortality rate  to the exclusion of other additional benefits coupled with at least three significantly overvalued risks has seriously distorted the findings of the authors of the study and especially the USPSTF.  Many other individuals may disagree with me.  Unfortunately, that is the nature of CER – it is based on subjective values.

2. High False Positives?

As I mentioned in the previous section, one of the significant limitations of breast cancer screening is the high false positive rate.  This is often the case with tests used to routinely screen otherwise healthy people.  This is especially true for tests that are self-administered, like BSEs.  In the specific case of breast cancer, there are a number of lesions or masses that frequently occur in breast tissue, most of which will turn out to be benign and/or non-cancerous.  However, when you are checking yourself or even on a mammogram, it is impossible to know what those abnormal lumps and bumps really are.  I think there is a common misconception that a mammogram is a diagnostic test.  It is not.  Breast cancer is should never be diagnosed from a screening mammogram.  Instead, a doctor will order additional screening using more specific and/or more advanced techniques or a biopsy in order to properly identify the mass.  Only after the actual cells of the mass are examined can a true diagnosis of breast cancer be given.

In the USPSTF-commissioned study, any time a mass was detected either in BSE or in routine mammography, the screening test was classified as “positive”.  However, as I described above, the masses detected in a large number of “positive mammograms” are found to be benign, non-cancerous  lesions with follow-up imaging or biopsy.  In this study, all of those tests, then, fall under the category of “false positives”.  So you can see now why mammograms and especially BSEs have such a high false positive rate.  In the opinion of the USPSTF, any follow-up test that is administered that doesn’t detect cancer is considered a “wasted” test.  That would be like considering an x-ray that reveals a sprain instead of a fracture a waste, as Nancy Brinker wrote in this wonderful USA Today column.  Why then, does the USPSTF consider any follow up test that doesn’t detect cancer as wasteful??

In an ideal world, the screening test that we use not just for breast cancer, but for any disease, would also be a diagnostic tool, telling us exactly which lumps and bumps are cancer and which aren’t.  But right now, that just isn’t the case.  To my mind, the only time a recommendation against a certain screening test based on a high false positive rate is warranted is if there’s a better test out there.  Right now, that isn’t the case for breast cancer.  Rather than recommending that women forgo the flawed but effective test that we currently have, we should be advocating for better screening methods.  But until we get those tests, having to perform too many “wasteful” follow-up procedures is a small price to pay for saving someone’s life.

3. Overdiagnosis and overtreatment?

Another area of concern for the USPSTF and the authors of the study on which the Task Force’s recommendations are based is overdiagnosis and overtreatment.  Overdiagnosis is defined in the Task Force’s Recommendation Statement as “detection of cancer that would never have become clinically apparent… and it is usually followed by overtreatment.”  In other words, overtreatment is unnecessarily treating a cancer that would not have killed the woman during the normal span of her life.  This is particularly an issue for women ages 75 and up because of their relatively shortened remaining life span.

To better understand why this is an issue, we must think for a moment about the actual biology of cancer.  Oftentimes, the words tumor and cancer are used interchangeably to refer to an abnormal mass of cells that can leave the site of the mass and spread to other parts of the body.  However, they are not exactly the same thing.  A tumor is a mass of cells that may or may not be malignant (multiplying and/or migrating to other parts of the body).  Cancer, on the other hand, refers only to malignant tumors, not benign masses.  While most people believe that all tumors will become cancerous if given enough time, that isn’t usually the case.  In actuality, the nature of a tumor (benign or malignant) is often determined when the cells first become abnormal.  Not all cells undergoing what we commonly think of as “cancerous growth” have the ability to migrate to other parts of the body and establish new tumors.  Many “cancerous cells” are dividing very slowly and are limited to the immediate surrounding tissue.  Now, if one of these slow growing, non-migrating tumors happens to be in or on a critically important organ, they can also wreak havoc on your health without ever becoming “malignant cancer”.  But more often than not, if the cells stay where they are and reproduce relatively slowly, then you could live with that tumor for a very long time without any impact on your day to day life.

The most commonly diagnosed form of breast cancer is what is known as ductal carcinoma in situ or DCIS.  This type of breast tumor is confined to the milk duct within the breast.  By it’s very nature, DCIS is not considered malignant because it is still confined to it’s site of origin.  A diagnosis of DCIS is often at a very early stage and is rarely a precursor for more advanced, invasive breast cancer.  Because of this, some oncologists and breast cancer specialists consider DCIS to be “pre-cancer”, not breast cancer.  Because DCIS is often has a long asymptomatic phase, it is almost always initially detected on a routine screening mammogram.  As a result, with the increase in routine screening, there has been a concomitant increase in the incidence of DCIS without a clear understanding of the long term nature of this type of tumor.  The other primary type of breast cancer is lobular carcinoma in situ or LCIS.  Unlike DCIS, LCIS often leads to an increased risk of developing later, invasive breast cancer.  Whether those tumors themselves become malignant or whether they just signal that other, more aggressive cancer cells may be present in the breast is still up for debate.

As I hope you are starting realize, the sticky point to all of this is that in the end, we do not know what causes a breast tumor or cancerous breast tissue cells to become invasive and malignant.  Let me say that again – we do not know yet what causes a breast tumor or cancerous breast tissue cells to become malignant.  We don’t know whether cells are destined to be malignant from the moment they become abnormal or if a benign tumor can evolve into a malignant tumor with time.  This is an important point for me because it represents a serious diversion between myself and the USPSTF.  As the USPSTF said in it’s Recommendation Statement:

“Because the likelihood that DCIS will progress to invasive cancer is unknown, surgical removal—with or without adjuvant treatment—may represent overdiagnosis or overtreatment.”

In essence, what the USPSTF is saying is that because we don’t know for sure that DCIS will become a malignant cancer that could kill you, we shouldn’t worry about treating it because we don’t want to expose women to unnecessary surgery or treatments.  While I recognize that only treating the tumors that we know for sure will become life threatening is the ideal, the fact of the matter is that we have no idea of know which tumors those are.  I know that for me, if I had a tumor that even had the slightest chance of becoming life threatening, I would want to treat it as soon as possible, when only a lumpectomy would be required rather than wait and see and ultimately end up having to go through a much more radical mastectomy and intense rounds of chemotherapy and/or radiation.  I suspect that the most women would agree with me, putting us at odds with USPSTF.  Again, while their recommendations are sound based on their values, they are out of line with the values of regular women.

4. So how did they decide to start recommending screening at age 50?

I mentioned at the beginning of this article that one of the primary questions that the USPSTF wanted to address was the effectiveness of breast cancer screening for women ages 40-49.  They felt confident in their previous recommendations for women ages 50-69, but felt that the evidence thus far for women in their 40s was less clear.  To address this question, the authors of the study commissioned by the USPSTF stratified the results of the studies they reviewed in order to compare the effectiveness of breast cancer screening for each group.  The primary results that they reported in the Annals of Internal Medicine were:

That is, for women aged 39-49 years old, mammography screening resulted in a 15% reduction in breast cancer mortality, with screening of 1904 women needed in order to save one life.  Interestingly, for women aged 50-59, mammography screening resulted in a comparable 14% reduction in breast cancer mortality compared to a control group.  Because death from breast cancer is more frequent in this age group, that means that 1339 women need to be screened in order to save one life.  Finally, for women aged 60-69, mammography screening resulted in a 32% reduction in breast cancer mortality and only 377 women needed to be screened in order to save one life.

Based on these results, it is clear that a large jump in the effectiveness of regular mammograms in reducing breast cancer mortality actually occurs at age 60, not at age 50.  In fact, mammograms are just as effective for women in their 40s as for women in their 50s at reducing breast cancer mortality, even though breast cancer in those women occurs less frequently.  Herein is what I consider to be one of the major design flaws of this study.  Just looking at this data, one might logically conclude that the most important age to start mammograms is actually at age 60, not age 40 or 50.  Without a lower age group to compare these results to, I don’t think you can properly assess the effectiveness of mammography for women in their 40s.  Let’s say that for women ages 30-39, regular mammography also results in a 15% reduction in breast cancer mortality and that the number of women that need to be screened to save one life is about 2500.  Those findings probably wouldn’t change your conclusions much: there is a moderate benefit that increases with each decade of life and that the big jump in effectiveness occurs around age 60.  But what if the results for women in their 30s were a little different?  What if for women in their 30s, regular mammography only results in a 5% reduction in breast cancer mortality and that a whopping 5000 women needed to be screened to save one life?  If that were the case, it would be incredibly clear that there is a boost in the effectiveness of mammography at reducing breast cancer mortality around age 40 and again at age 60.  I doubt anyone would look at that data and conclude that it was okay to wait to start screening when a significant effect at age 40 is so obvious.

Now, I don’t know what the numbers look like for women in 30s.  I wish that I did.  But more than that, I wish that the observers knew those numbers.  In order to properly assess the effectiveness of routine mammography for women in their 40s, you can’t just look at the next older group and determine that screening is slightly less effective.  You have to compare to the younger group as well.  As a scientist, I think this is a serious flaw in this study.

We know from the recommendation statement that the USPSTF looked at these results and (I feel, somewhat arbitrarily) decided that the benefits of routine mammography began to outweigh the risks starting at age 50 for most healthy women.  But is that really the right answer?  Personally, I disagree.  In fact, I think the authors of the commissioned study summed up their results the best:

“Our meta-analysis of mammography screening trials indicates breast cancer mortality benefit for all age groups from 39 to 69 years, with insufficient data for older women. …  Mammography screening at any age is a trade off of a continuum of benefits and harms.  The ages at which the trade off becomes acceptable to individuals and society are not clearly resolved by the available evidence.”

To conclude, I think that this was an important study to perform and I hope we continue to assess the effectiveness of our screening techniques well into the future, especially as newer, hopefully better techniques emerge.  But I found that my personal values were out of line with the USPSTF and as such, I do not agree with their ultimate conclusions.  I think the one thing highlighted by this study that we can all agree on is that we need better and more accurate tests, less invasive treatments and a better basic understanding of the nature of breast cancer.  If we can use this report as a call to action to increase breast cancer research, I think we will all be better off.

The Counter Argument

What I have written here is solely my opinions that I formed after reading extensively about breast cancer screening, the USPSTF and the study that was published in the Annals of Internal Medicine.  There are certainly people out there who disagree with me and in the interest of fairness, I wanted to provide links to two articles discussing the argument in support of the findings of the USPSTF.  The first article that I recommend was written by Devra Davis, PhD and can be found here (click for article), at the Huffington Post. Dr. Davis writes very passionately about her own experience with breast cancer screening in the context of the history of mammography.  It is a very interesting article, even if I don’t necessarily agree with her.  The second article that I would recommend was written by Kevin Sack and was published here (click for article), in the Health section of the New York Times.  Mr. Sack focuses on the emerging idea that early detection isn’t always the best and the harsh opposition that that point of view has faced.

Useful Links and Resources

In writing this piece, I used a number of resources and I tried to directly credit those sources where I could.  I repeatedly referenced both the USPSTF Recommendation Statement and the Annals of Internal Medicine study.  The links for those documents are:

The USPSTF Recommendation Statement on Breast Cancer Screening
Screening for Breast Cancer: An Update for the USPSTF, published in the Annals of Internal Medicine

I gathered much of my information on the USPSTF from their personal webpage (click for link) and from this highly informative article in the New York Times.

Following the release of the USPSTF recommendations, almost all of the major cancer groups released formal statements, which I have collected here (click the names for the links):

American Cancer Society
Komen for the Cure
Nancy Brinker, Founder and CEO of Komen for the Cure
National Breast Cancer Foundation
Breast Cancer Network of Strength (formerly Y-Me)
National Cancer Institute
National Breast Cancer Coalition
Stand Up 2 Cancer Coalition

I also want to call attention to the official statement of the Secretary of Health and Human Services, Kathleen Sebelius, which can be found in this article (click for link) on CNN.

While I was preparing this article, Nancy Brinker published an Op Ed in USA Today that I found very interesting.  It can be found here (click for article) if you’d like to read it.

Finally, in learning about breast cancer, I have found Dr. Susan Love’s Breast Book to be a great resource.  I highly recommend it to anyone who wants to learn more about the science of breast cancer and the history of breast cancer screening and treatments.  Dr. Love updates her book every five years, and the fifth edition is due in 2010.

Thank you to anyone who actually made it to the end of this piece! It was really important to me to use this platform to share my thoughts and insights with all of you.  I encourage everyone and anyone to leave me comments letting me know your thoughts as well!