Komen is not coming to save us

So, San Antonio. That was a hell of a week. By now, you may have heard that Dr. Kelly Shanahan (a fellow metster and a seriously smart woman) and I had an interesting conversation with a scientific advisor for Komen, Powel Brown. I wrote a Facebook post about it on my personal wall, and made it public. Here’s what I wrote:

This week, Kelly Shanahan and I had a conversation with Powell Brown, a member of the scientific advisory board for Komen. We explained to him that the metastatic community is largely dissatisfied with the small percentage of funding that Komen spends on research, since research is the only thing that will save our lives. I told him that they need to change their split between the national and the locals so that more money is available for research. His response was that he doesn’t believe Komen will change that ratio, and that Komen would not begin funding more research until the metastatic community gets behind Komen. He said that if we want Komen to spend more on research, we should participate in their fundraising efforts. He said that more fundraising would mean more money available for research. I told him there was no way that our community could get behind an organization that chooses to spend its money on things other than saving our lives, especially given that there are other organizations that spend a much larger proportion of their funding on research, including BCRF, which now outstrips Komen in dollars spent annually on research. His response was that if that’s how we feel, we should just support BCRF instead. And he walked away.

This is what a national leader for Komen feels about the metastatic patient. We are disposable because we don’t fundraise for them. Do not let them fool you into believing they care about us. Our lives don’t matter to them. And that’s why Komen is irrelevant to us. We must and will save our own lives.

Upon reading this, I think I broke the metster portion of the Internet, since the post was shared over 1000 times and the awesome Eileen aka Woman in the Hat also wrote about it on her blog, for which I am super grateful. I got a lot of people saying how brave I was to share this conversation, to expose what a national advisor to Komen actually thinks about us and our disease. But you know what? When you’re dying, when your friends are dying, I mean, what do I have to lose? What’s Komen gonna do to me that cancer already isn’t? Brave is when you’re scared and you do it anyway–but I’m not afraid of Komen, so it’s not actually bravery. It’s just giving no fucks, combined with a whole lotta anger.

One of my friends emailed Komen CEO Judy Salerno about this. And this was her response.

I appreciate the opportunity to address some of the issues you raised in your email to us this weekend. I’m not sure there’s an answer that will satisfy everyone, but this is important to me and I hope we can have additional conversations. 

This starts with an explanation from me about why we do what we do. I promise to be very candid, as you’ve been with us. 

As I write this, I’m thinking about the people I knew who have died of metastatic disease just this past year. One was our Komen Ozark executive director, another was a longtime Komen patient advocate, and another was a dear friend of mine who died last month. There are others, of course, but I mention this so that you know that this is personal to me, as it is to everyone at Komen.

I’ll start with our approach to research. Jill, as you know, we’d like to fund everything that needs to be funded, but the reality is that this disease is complex, its impact is huge, and our resources are finite. Finding cures requires a comprehensive understanding of how breast cancer starts, how and why it spreads, why it affects some women differently than others, and how to better treat it or prevent it.

This is why we at Komen fund along the entire research spectrum, because there are many issues to understand and solve, and what we learn in one area may lead to answers in another area. Some of our research projects – in biology and causation, for example – are not specifically labeled as metastatic research but could have applicability to metastatic disease. That said, we’ve devoted half of our new research funding specifically to metastatic disease in 2015 because it is a priority for us.  

Finding cures through research is, and always has been, at the core of our mission. But we also know that too many people die of breast cancer because they can’t access high-quality healthcare. For that reason, a significant portion of our mission spend is directed to programs in thousands of communities that pay for things like insurance co-pays, diagnostic tests, patient navigators, and other medical expenses, as well as what we call treatment support: transportation, childcare, emergency living expenses, and other things that often stand between patients and their medical care. A list of what we and our Affiliates fund in the community is available here.

Some mistakenly label the community health aspects of our work as “awareness.” It is, in reality, the in-the-trenches work that must be done to help women and men who face breast cancer today, at all stages of the disease. Komen is the only breast cancer organization that funds this kind of large-scale community health work along with a large research program. We do this because it also contributes to saving lives. 

Finally, Powel Brown is an esteemed scientist and a member of our Scientific Advisory Board, which serves as an advisory body to Komen on research and cancer science, but does not advise on our organizational or operational priorities. He was not speaking for the Komen organization, but he is correct that our ability to fund research – or any of our work – depends on the amount of money we’re able to raise every year through our donations and fundraising events. This year, we’ve begun a new donation program which gives donors the ability to fund metastatic research directly. We encourage those who are interested in supporting metastatic research to help us fund those projects through this directed donation program.

We also want to keep the conversation going, through the many venues we have to engage – the Metastatic Breast Cancer Alliance that we helped to found, with metastatic patients directly, and by exploring joint funding of metastatic research with other cancer organizations. 

Like cancer itself, these issues are complex and not easily resolved. There are areas where we may not always agree, but I want you to know I am listening. More importantly, I have identified metastatic disease as a Komen priority, meaning continued investment in metastatic research and help for metastatic patients. Our common enemy is this terrible disease. 


Judith A. Salerno, M.D., M.S.

President and CEO

Susan G. Komen

OK, so, there’s a lot to unpack there. Let me start at the beginning.

Saying “I have friends who died of breast cancer so this is personal to me” is the equivalent of a white person saying “I have a black friend so I’m not racist.” Excuse me while I roll my eyes and thank you for deigning to be friends with the likes of us. If it’s so personal, why is Komen spending so little on research, which is the only thing that will save our lives? Actions show what’s really in your heart, not words. Not platitudes about how much you care and how you’re listening can substitute for concrete actions to support our community.

Then there’s the accusation that we’re criticizing Komen for spending money on direct patient support because we conflate it with awareness. NO. The metastatic community is not stupid. We know that direct patient support is important, and we know that it is not awareness. Please don’t insult our intelligence. What we’re criticizing is the amount Komen spends on what it calls “education.” Here’s a screenshot of the most recent audited financial report from Komen–from their website, so this is THEIR data.

See where it says “Public Health Education”? See the total in that column? Yeah, it says $122,540,737. See what it says for “Research”? $43,396,973. Those numbers are the opposite of what I believe they should be. But the problem is, see where it says “Marketing and communication” in the column on the left? See what that total is for “Public Health Education?” $41,873,249. Of their public health education budget, nearly $42 million of it was literally spent on advertising. Nearly as much as their entire research budget. See, with “education,” you can count your marketing expenses as a program expense by putting something educational on your marketing materials, and then it looks like you’re spending a bigger proportion of your budget on the mission and less on administrative expenses. Can’t really do that with research.

So no, I’m not complaining about the $13 million they spent on “treatment services.” I’m complaining about them spending almost 10 times that much on awareness, a third of which is actually marketing.

Then there’s the part about how Dr. Brown doesn’t speak for them. OK. Then maybe don’t put him in front of the Komen booth at the largest breast cancer symposium in the world and let him talk to people? Maybe don’t put him on your scientific advisory committee?  

My favorite part, though, is that after saying Dr. Brown doesn’t speak for them, she confirms the core of the offensiveness of his comments: Komen won’t do more research until they get more money. An organization that spent $122 million on awareness can’t be bothered to shift any of that money to the only thing that will save our lives: research. 

And then there’s the standard “We’re listening” stuff. No you’re not. You’re talking. And you don’t even realize that you’re lecturing metastatic patients. We’re dying and you’re telling us we shouldn’t complain that you’re letting us die. See what I mean about “I have friends who died of breast cancer so this is personal for me” being eye-roll-inducing?

And this is why Komen continues its steady decline into irrelevance. It’s living in the past, and this is why we as metastatic patients have to realize that they’re not coming to save us. We’re going to have to save ourselves.

26 thoughts on “Komen is not coming to save us

  1. To be clear I have only read the blog post, not all the comments. It is my opinion that the response from Judith Salerno has a lot of “wins” for the bc mets community. I suggest we start to listen very carefully to what is being said. They are changing their priorities. So we can either keep calling them out forever, or we can cautiously support them as they make changes in the direction we have demanded. Parsing every single message and tearing it apart, does not seem helpful to me. She clearly said in respectful language that Powell Brown is not a decision maker re organizational priorities and that he spoke out of turn….ummmm do you really think he has not been chastised privately for this incident which has gone viral in social media??? Why was he at Komen booth? Probably to answer scientific questions. He should not have engaged when questions outside of his area of responsibility came up. If Komen can never satisfy us then so be it. Let’s not keep expending energy hitting our heads against a brick wall. But I don’t think this is the case. I’d like to see some support and encouragement when we hear things that sound like changes are being made in the direction we have demanded (yes we have been that strident)….at the risk of pissing off everyone who likes to beat up on Komen. Please know I’m as frustrated as the next person that we don’t have a cure after all this time and expenditure.

    1. I hear what you’re saying. We do need some good cops to help us keep Komen move in the right direction. But I believe the glacial pace of change by Komen requires us to keep being strident with them. We’ve waited long enough.

  2. I manage a grant program at our community not-for-profit hospital. Up until recently, our local Komen affiliate provided us $200K grants annually for over 10 years, which enabled us to consistently provide free mammograms, breast ultrasounds, breast biopsies and more to the many low-income, uninsured residents of our county. In fact, Komen started the Breast Health Grant Support Program at our hospital, funding not only screening and diagnostics for patients, but paying the salary of this hospital’s first Breast Health Navigator.

    As the ‘Bash Komen’ bandwagon has grown and financial support for Komen has decreased, our local affiliate is no longer able to fund our program. That means countless women who lack health insurance and the ability to pay for mammograms (let alone biopsies) will now go without. How many of them will one day end up in our ER with breast cancer tumors that have become metastatic? Too many. It’s too bad that in advocating for attention to metastatic breast cancer, you have to bring down an organization that helps ensure that medically underserved women have access to the tests they need to catch breast cancer before it becomes metastatic. I often wonder how many of Komen’s critics are among this country’s vast uninsured, low-income population. I suspect that almost none and I can assure you that the women served by Komen in our community do not have time or access to these discussions. Their voices are missing.

    1. Michelle, I agree that access to healthcare is important work for Komen. So why are they spending nearly 10 times as much on “education” as they are on treatment? Why should we support an organization that is wasting its money instead of spending it on what really matters, like your program?

      1. I cannot remotely speak to everything Komen does – right or wrong. There is a vast difference between the national organization and the local affiliates and yet I never see that distinction explained in the critiques of Komen.

        All of the Komen funding we have ever received comes from our regional affiliate. Our affiliate covers 5 counties in Florida. Florida, where Medicaid expansion was turned down and where there is still a vast population of people without health insurance. I know that the affiliates have to hand off a percentage of the funds raised through regional races to the national org and they likely have no or little say in how that $$ is used by the national org, but the majority of the funds raised in our region stay in our region. None of it is used for education or awareness. All of it goes to direct patient care.

        None of the recipients of free breast screening and diagnostics paid for by Komen at our community hospital ever even know that it is Komen paying for their breast care, but I would hazard to guess that if they knew, they would strongly disagree with your assessment that Komen is “wasting its money.” Komen has never asked us to broadcast their role in funding direct patient care for women in our community as they do not want the money or our time spent on PR. We have zero literature from Komen either marketing or educational in nature. When I first came into this position, it was Komen paying my fulltime salary and benefits, as they wanted to ensure there was a fulltime individual at our community hospital dedicated to helping women-in-need in our community access the breast care they need.

        Our Komen affiliate also uses their funding to conduct community assessments to determine in each of our FL counties where the greatest percentage of specific socio-demographic groups known to have later-stage diagnoses and poorer breast cancer outcomes are concentrated. We are then encouraged to target those areas in efforts to bring women in for free breast health screening and diagnostics. Neither our hospital, city, county nor state health dept is conducting that type of research.

        Our Komen affiliate makes the most efficient use of funding by paying for screening and diagnostics and collaborating with the CDC’s Florida Breast and Cervical Cancer Screening Program for breast cancer treatment. Through the FBCCP, a woman diagnosed with breast cancer in the state of Florida automatically obtains Medicaid. That is HUGE because a woman diagnosed with breast cancer in the state of Florida who applies for Medicaid on her own will not get Medicaid unless she is stage IV and already on disability. Thanks to Komen’s collaboration with FBCCP, Komen can concentrate their funding on the screening/diagnostics, fund positions such as mine at community hospitals, and ensure that this population of women obtains Medicaid in the event of a breast cancer diagnosis.

        I guess my major point would be that “what really matters” to you might differ from “what really matters” to someone in different shoes. My hope would be that in your effort to advocate for changes that matter to you, you bear in mind that Komen’s support matters a whole lot to the many low-income, uninsured women in my community and others who, unlike you, lack a platform, time, and resources to contribute to these discussions.

        1. I’m sorry, did you just call the metastatic community “privileged”? Many metastatic patients are unable to work, are living solely on disability benefits, and let’s not forget that our median lifespan is just 33 months. Many are only able to attend conferences because of generous scholarships; many struggle to choose between medicine and food. Many of us are uninsured or underinsured and must wait 2 years from when we qualify for SSDI to get on Medicare, which doesn’t always cover our treatments. I’d hardly call our community privileged. We’re dying.

          Again, I and the metastatic community are not criticizing Komen’s treatment support. We’re criticizing what they spend on awareness. That your local isn’t spending money on awareness, doesn’t negate the fact that far too much of the national Komen budget goes to awareness, which does not and will not save lives.

          1. No, I did not call “the metastatic community” privileged. My point is that the metastatic community is not homogeneous. I seek to speak on behalf of the ~1,500 women per year in our community who have historically benefited from Komen’s support and for the many women to come who will hopefully have access to the same support.

          2. I apologize that this comment is not in sequential order. I’d like to respond to Michelle’s comment below that she “…seek(s) to speak on behalf of the ~ 1,500 women per year in our community who have historically benefited from Komen’s support…” I believe it’s safe to say that Beth and I seek to speak on behalf of the ~ 40,290 American woman (~ 550,000 women worldwide) who will DIE of metastatic breast cancer this year alone! To blame the “victims” of cancer for their outrage at the lack of advancements over the past 30+ is reprehensible!

            In your previous response you stated “My hope would be that in your effort to advocate for changes that matter to you, you bear in mind that Komen’s support matters a whole lot to the many low-income, uninsured women in my community and others who, unlike you, lack a platform, time, and resources to contribute to these discussions.” First and foremost there is an ABUNDANCE of research that negates that “early detection saves lives”. This is simply a false statement! Regardless of cancer type, stage at diagnosis – 1 in approximately 3 diagnosed with an early stage cancer WILL develop metastatic disease. I am one of those 33%. To attack someone who is furious that she/we are dying within a global cancer pandemic without more research “for the cure” is absolutely deplorable. We need attention brought to a disease that is killing over half a million people a year!! With all my heart I hope you are cancer free, but if you ever have the misfortune of hearing that 2-3 death sentence I’m pretty sure your focus would not be on copays and mammograms but instead, fighting tooth and nail to be heard so you can be their for your children’s first day of school, or first heartbreak. Before you make comments about the metastic community having time, resources and platforms maybe you should do a little more research on who that population is instead of making uneducated comments.

          3. Dear Carey Bell,

            I apologize for upsetting you. I did not blame anyone for anything.

            The “metastatic community” and the women who receive Komen-funded support are not necessarily mutually exclusive, so I guess in representing the 40,290 American women with MBC, you also represent some of our Komen grant recipients because some of our grant recipients are ultimately diagnosed with metastatic breast cancer. Safe to say, they are grateful for Komen-funded assistance with breast screening/diagnostics AND they wish for a cure to their cancer.

            One member of “the metastatic community,” who is also a Komen grant beneficiary, visited me today bearing a holiday gift. She was diagnosed in 2012 (age 42) with breast cancer that had spread to her bones. She was aware of a breast lump for 2 years but did not pursue a mammogram because she feared she would be unable to afford the medical expenses. She was unaware that there was any form of assistance available to her, until Planned Parenthood directed her to our grant program.

            Though diagnosed with MBC and having undergone surgery, chemo and radiation, she went back to work full-time in a Band-Aid factory because she cannot otherwise survive. At my briefest mention of the online debates about the lack of funding for metastatic breast cancer research, she only responded with a gasp that she doesn’t have time to worry about internet. Would she be grateful for a research break-through that will extend or save her life? Absolutely! Would she be grateful for the proven recipe to breast cancer prevention so that her sister and niece (both of whom live with her) are safe from a terrible disease. Absolutely! Is she grateful for the Komen assistance with her mammo, ultrasounds and repeated biopsies? Absolutely!

            As for the medications (products of MBC research) that are currently prescribed to her for their scientifically documented role in reducing the risk of recurrence and extending the lives of MBC patients, she had to discontinue them, knowing she is putting herself at risk. She simply could not manage manual labor with the side effects of the meds.

            I did not “blame” anyone for anything nor do I seek to advocate for one funding goal OVER another. If that were my intention, I would be 1000% in the Fund Cancer Prevention Research camp, but that too might be at odds with the priorities of someone already battling cancer. In my mind, pointing out the good that Komen dollars do in my community does not negate anyone’s call to prioritize funding for a cure or prevention. Unless we figure out how to prevent it entirely, we need it all.

            What I have done here is detail how Komen funding helps the most vulnerable women in my community and I do so because due to the socioeconomic barriers they face, they DO NOT contribute to debates about Komen or funding priorities. A grant to pay for a mammogram or biopsy for the young or older woman who just found a breast lump may seem trivial to someone fighting metastatic breast cancer, unless you’re among those who learn of their MBC diagnosis by way of a mammogram, US and biopsy paid for by Komen.

            I also did not state that “early detection saves lives.” I’m in no position to make such a statement as I am not a researcher nor statistician. I do know that low-income, uninsured women in our community who are at elevated risk of developing breast cancer due to family history or documented abnormalities such as breast calcifications have historically been able to keep up with their annual and/or biannual tests thanks to Komen funding. Again, that may be funding wrongly directed to some, but it is valuable to others.

            I notice that a previous commentator named Vincent stated “maybe check your privilege, just because it’s not important in your community doesn’t mean it’s not important to a different community.” Perhaps such comments have some feeling so defensive that any and all messages or informational details that are not purely critical of Komen’s failure to fund MBC research are perceived as attacks. From where I sit, assisting women all along the spectrum of breast health care (including MBC patients), there are too many important details lost in a purely 2-sided debate. I’m not trying to take a side. I am trying to contribute a perspective that is consistently missing in discussions of Komen’s funding priorities.

          4. Beth, I just want to say that I mean no disrespect to you or anyone in the MBC community when I detail the valuable support provided by Komen to women in my community. You made it clear that you support the way Komen dollars are being used at my community hospital and that it’s the dollars going to awareness campaigns that you are against. I respect your willingness to engage in discussion on this topic. I am not trying to build support for Komen. I am trying to advocate for the needs of low-income, uninsured women in my community. Komen is definitely not the only large breast cancer org that does not prioritize MBC. We pursue large grants from the likes of Avon Foundation for things like Patient Navigation software, lymphadema sleeves, mammo tech training, breast screenings, and other items and services that do not touch upon MBC or cancer research.

            I’m out with these last words. I sincerely hope I have not offended you or anyone with my effort to make people aware that there are places/contexts in which Komen funding is doing important work. I thank you for allowing me to join the discussion.

  3. I am deeply saddened as I read this article. I am not officially affiliated with Susan G. Komen nor am I or anyone I know ever been affected by breast cancer, but I have volunteered with my local affiliate numerous times. What I understand is that the organization operates on minimal staff in each of their affiliates. These people work tirelessly to put on community events which provide education for women and raise funds for the local programs. While you seem to think that the education they provide is just awareness, I’ve heard about the days where they stand in the grocery store, giving out free t-shirts to women who will “test their knowledge”. You’d be amazed the number of middle aged women you meet in a grocery store mid-day on a Monday who think they can’t get breast cancer because they don’t have a family history. So maybe check your privilege, just because it’s not important in your community doesn’t mean it’s not important to a different community. They also provide viable ways of receiving breast exams as well as raising funds which are made available for research. If you feel that research is the only thing that will save your life then perhaps you ought to get to studying, become a scientist in the field and get to work! Research costs money which from the very nicely organized financial report provided looks like Susan G. Komen is providing a lot of money to. How much money have you donated to research this year? Please let’s look at the good that they do rather than lambasting them for how “you” think they should run their organization. They listen to their donors suggestions so perhaps sending in a donation with your concerns would be appreciated. Thanks for reading.

    1. Yes, I’ll get right on getting an advanced scientific degree and becoming a researcher in the remaining 18 months of my expected life span, and in between chemo treatments, while living with fatigue the likes of which I hope you never know. Perhaps you should check your own privilege.

      Patient education has done nothing to reduce the death rate from breast cancer in the 30 years of Komen’s existence. But you know what has? New treatments. Know how new treatments happen? Research. Know why the death rate has only declined a small amount in the last 30 years? Lack of research and in particular, lack of research on metastatic disease, which remains terminal with a median lifespan of 33 months from diagnosis.

      I want women to stop dying of breast cancer. I think Komen wants the same. Which is why spending $122 million on something that has not and will not reduce the death rate from breast cancer is mind-boggling to me, and to many of us dying of breast cancer.

      I don’t doubt that the volunteers for local affiliates are good people whose hearts are in the right place. I just wish Komen would put them to work doing something that actually would save lives.

    2. You asked how many of us donated to research this year? Well, i’d like to tell you that I donated to research this year. I donated to Metavivor, where 100 percent of your donations to go researching metastatic disease. They raise money for admin costs by selling merchandise. See more here: http://www.metavivor.org/blog/100-of-donations-to-research-this-is-how-we-do-it/

      Do you honestly think that if we’re not donating money to Komen, that we’re not donating money somewhere else? That’s absurd and thinks highly of Komen.

      So.. did that answer your question?
      Lara recently posted…Pinktober is comingMy Profile

      1. You rock. Donating to Metavivor is awesome and donations to them go SO much further than to other organizations. So, thank you!!!

    3. I’m not trying to be mean. However, I’m a Metastatic breast cancer Stage IV. At this being said, all the 5 yrs I looked to Komen for help. Nothing at all, so Komen hasn’t done nothing for me, but when its that time of the urs race. They ready for my handout. I won’t live Lon enough to see anything change. They sure as hell didn’t care to listen to me. So there isn’t anything they can say or do that will change my mind. The CEO and others sit at their cozy offices n make the $$$ and live it up. Makes more than $225,000.00/yr. Hey I got an idea, how about they start donating part of their salaries. I can assure you, God forbid if any of these ppl get Metastatic breast cancer Stage IV, all hell going to break. You know why? Because being rich n such a high position ain’t, isn’t going to save their life. Now tell me again, why should I continue being there for Komen to give my $$$ to them. Yep I’m mad but I’m more hurt because I thought they somebody. Well how very disheartening, disappointed all of us are. And with every right. Another idea, come live with me for a month, then ppl like Komen can see me for really who I am and what I go thru on a daily basis. Nothing againt you, it’s against komen. They don’t care…..

  4. Agree with Lillie! But for Nancy Brinker’s sister Susan there would be no Susan G. Komen. Their name itself is fraudulent since they don’t fully support research for metastatic cancer!

  5. What I find so bizarre is the fact that Susan Komen died of stage 4 cancer yet the foundation that’s named after her does so little for stage 4 research. How can they sleep at night????

  6. Another great post.
    Reminds me of an article I read once “Lawyer moms are the scariest moms.” Well, maybe lawyer metsers are the scariest metsers. We will read your BS letters and websites and financial statements, and we will eviscerate them. We will hold you to a higher standard than pink pom pommed cheerleaders. This isn’t a fucking pep rally.
    Lisa recently posted…Guest Blog: “Dear Lung Cancer Patient Who Didn’t Smoke”My Profile

  7. They do such a wonderful job of educating that someone fundraising for them me told me they have made such progress that people don’t die from breast cancer anymore. She had never heard the word metastatic.
    Granted, this was not anyone at the top, just a volunteer, but she seemed to reflect much of the attitude of the breast cancer “culture” fostered by Komen. They recognize survivors, they even recognize those who have already died, but we who are in the process of living and dying with breast cancer are invisible to them.

  8. I don’t know – I have been volunteering for Komen for 3 years, specifically for a metastatic conference they sponsor in Los Angeles. It’s this specific affiliate that puts on this free, informational event which started at 40 attendees and has grown to about 300 this last November. I have had heart-to-heart discussions with the Komen staff about how we feel regarding the lack of support for metastatic disease, and they say Komen is listening. It’s mostly because their “Race for the Cure” is not bringing in the funding they had hoped. They know that their mission has lost support. I’m cautiously optimistic – still don’t donate $$$ to them, only my time and only for the metastatic conference – I feel that time will tell. Let’s see if they put their money behind their statements in 2016.

  9. She had gotten greedy…she is not going to find a cure..she won’t get anymore money for her self..stop giving her the money…

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