Komen and the Metastatic Community

Komen is nothing more than a glorified event planner, hosting races and events, raising lots of money. Good times! Despite its slogan, “For the cure,” very little of that money is allocated toward research.

Beth Caldwell, who writes the Cult of Perfect Motherhood blog, just came back from the San Antonio Breast Cancer Symposium where she met with a representative from Komen to discuss this very issue. She posted this on Facebook:

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.

[Reprinted with permission.]

Are you as outraged as I am? This is not an isolated incident. Komen sees metastatic patients as a nuisance. A bunch of loud-mouthed complainers who don’t pull their weight. Like problem step-children with too much attitude. Much better to cater to happy survivors who look pretty and run races.

How did Komen stray from its original mission of fighting for a cure in honor of its namesake? If Komen had any heart and truly wanted to fund a cure, it would have the backing of the metastatic community. Like any corporation, it has to win its donor’s time and money by the way it chooses to allocate funds. It doesn’t work the other way around. Not to mention that many Stage 4 patients are too ill to raise funds and run races. It’s all they can do to raise and run their own families.

I am not metastatic. I have been in the NED zone for five years after being diagnosed at Stage IIB, but I too am a big-mouthed complainer. Frankly, I’m appalled because I care about those who have been diagnosed with a disease that will ultimately prove fatal. It’s highly disturbing when I see the increase in young women with metastatic breast cancer. I want to cry and scream every time I see “another one bite the dust” and leave small children behind to grow up without a mother. It’s the 21st Century’s consumption. Something is terribly wrong and I wish to God that somebody would figure out why and fix it.

It is estimated that 30% of those in remission after early-stage cancer will go on to be metastatic. That includes a portion of those with jubilant smiles who run victory races. We have not won the war on cancer. Not in the slightest. We so desperately need more dollars allocated toward research, not more awareness marketing that brings in more money for awareness marketing that brings in more money.

Personally, I’ve never been a party animal and don’t feel a need to participate in survivor fests. I would rather celebrate that I’m still here and make my life matter by advocating for research toward a cure.  I wouldn’t give a dime to Komen let alone run its races. It’s nothing more than a big celebratory party where you have to pay for your own dinner.

Enough about Komen. To hell with them.No Komen

In my opinion, the best use of your donated money falls into two categories: 1) organizations that help people pay for cancer treatment they cannot afford; and 2) those that raise money for research toward a cure. The first helps people in the present; the other looks out for the future of us all. Of course, any non-profit organization needs to be researched to ensure it’s worthy of your hard-earned money. All non-profits have administrative expenses and salaries to pay. That’s reasonable and their staff shouldn’t live like paupers, but their executive officers don’t need salaries over a half-million dollars a year either. Not to mention names.

Two worthy organizations committed to research are Metavivor and Breast Cancer Research Foundation (BCRF), specifically its Founders Fund.

Awareness isn’t a bad thing. Many of us cringe at the word because we’re over-saturated by Pink, but we can jump on that bandwagon too. Komen is a name people know and it never occurs to some to give elsewhere. It’s up to us to steer them in another direction. Create awareness. If we all do our part to educate others about alternative organizations that spend our money far more responsibly, together we can make a difference. For the cure!

Comments

  1. Beth Caldwell says:

    Thank you, my friend. It means so much to the metastatic community when early staggers like yourself stick up for us.

  2. Thank you for posting…… This is outrageous.

  3. Great article….very timely & on target! From a Stage 4 ‘metster’.

  4. Love the idea of “Research 4 the Cure” message versus “Race for the Cure.”

    Mr. Brown practically asked Beth and Kelly to “pay to play” or form some sort of lobbying group to raise money for Komen, which is a disgusting comment. When people “Race for a Cure” they actually think their money GOES TO RESEARCH, when less than 10% actually does (see next paragraph for explanation). I used to think that too.

    Regarding Komen – they are like a large battle ship – it takes a long time for them to reset their course and go in the right direction. I believe they are attempting to do so through their partnership with the Metastatic Breast Cancer Alliance and now when you donate directly to Komen HQ on their website, you can check off that you want the money targeted for metastatic research. I have no idea how this is tracked through to actual research, though. When you donate to a local affiliate like Race for the Cure events, they keep most of the money with less than 1/2 going to HQ, and that money is again split into various “mission-based” programs, which includes supporting educational seminars and travel grants for those with metastatic disease (they did this for the LBBC Philadelphia and MBCN Boston mets conferences this year and was a major sponsor of the mets conference in Los Angeles).

    I know these are small steps. I do believe that over time, the organization will change their course. However, that does little for those of us with the disease today and those who are running out of treatment options. I’ve been living with stage IV BC for 17 years and have no idea why I’m alive while millions have died. We have lost far too many from this disease.

    I have been a consumer reviewer for Komen research grants for a few years, although I am not a “member” of the organization, and have pushed for more metastatic research. I will continue to do so from that angle. Komen is a “fundraising monster” and will likely continue to be in the foreseeable future. If we can get more of the share of their proceeds, we will be much further ahead in helping those living with mets. I do understand that groups like Metavivor & BCRF are much better organizations right now for donations to ensure the funds are spent on the research important to those living with metastatic disease.

    Thank you for your post and for enlightening readers on making good donation decisions. Outrage is a good thing.

    • Sandra, I love your comment! You have educated me as to some of the particulars of how Komen works. I have noted some change more recently in a good direction, i.e., the I Am Susan campaign. I’d like to think it’s a step in the right direction. Your analogy of the battle ship taking a long time to reset its course is apropos, but I am heartened that people like you work to influence them, especially since they are a fundraising monster, as you so aptly put it. Thank you so much for visiting my blog. I loved hearing from you.

  5. Well said. We don’t need Komen and I am glad. I am metastatic and seek research dollars where they will truly make a difference.

  6. nancyspoint says:

    Hi Eileen,
    I love this post. It’s so perfect. I was appalled by that discussion Beth had with Komen’s rep as well. I just don’t get that organization at all. Thank you for this spot on and important post. xo

    • Nancy, thank you for sharing my post as you’ve done. Always appreciate your supportive nature and the energy you put into the breast cancer community.

  7. Getting the word out about this is so important. Glad you’re sharing Beth’s story!!

  8. Love this. Spot on to the point. I just don’t get Komen. Help folks with mets, everyone benefits. Ignore folks with mets, breast cancer stays scary and deadly. Could that be the rationale? Ugh, sure hope not.

  9. The Accidental Amazon says:

    Amen, Eileen. I was appalled when I read Beth’s post on Facebook, appalled but sadly not surprised. They have been tone deaf virtually since their inception. And they are continuing the tradition. I’ve been railing against them for years. To Komen, breast cancer is nothing but a brand that has become their cash cow. Kathi

  10. Thank you! We need a cure, not awareness. I was recently diagnosed with brain mets.

    I can tell you, my family and everyone around me is more aware than we ever wanted to be. They want me to live – for my daughter that will turn 7 on Thursday. For my husband and my sister. And to be honest: I would not mind at all to amble around here for another couple of years either…

    • Annette, I also wouldn’t mind you ambling around another couple of decades. I’m so sorry for the recent mets diagnosis. I don’t pretend to know how you feel, but I imagine it’s godawful and my heart hurts for you. I send you so much love and many hugs.

  11. Powell’s reaction is very upsetting, discouraging and disappointing. This suggests that Komen really doesn’t care about how many people die from metastatic breast cancer. Their organization is a fantasy world and many people are hypnotized by it. How can anyone support them? I am making sure to spread the word about which organizations to support. Everyone should read this post. Thank you for writing about this important topic that affects all of us regardless of our cancer stage.

    • Rebecca, you’re right. Komen is a fantasy world. It’s the Disneyland of cancer with all its frills, fun and charm, but totally lacking in reality. I wish their collective conscience would wake up.

  12. Sheri Begolka says:

    Thank you! Koen has made a party out of cancer….yeah let’s wear pink and fight for a cure!!! Really?? Been saying that for YEARS…. I am a survivor and cancer is not a parade.

    • Sheri, I’m with you. I remember being turned off to the party atmosphere of the pinksters early on in treatment. It’s so insensitive and exclusive of those who are Stage 4, not to mention delusional.

  13. Thank you for this very important information. I totally agree with you except that there are many nonprofit organizations, like Pink-Link and Beyond Boobs that help support survivors while going through their treatment. You left those off your list.

    • Yes, there are so many good nonprofits. There wasn’t space enough to put down the many organizations worthy of our donations, so I chose two that are specifically for metastatic research since that was the issue addressed by Beth to Dr. Brown. I’m thinking about creating a page on my blog with links to websites of reputable cancer nonprofits. I will be sure to include Pink-Link and Beyond Boobs. Thank you for letting me know they exist.

  14. Komen are a bunch of idiots. I don’t get involved with them any more.

  15. At STAGE IV LIFE Metastatic Breast Cancer Foundation, we try to help those fighting MBC now, and fund research for the future. We have a somewhat slow response time, as we are also fighting MBC, but do our best. I think if Komen doesn’t want to help MBC patients, that is their choice and the reason so many new organizations are popping up. We’ll just do it ourselves.

    • I’m so happy to hear from you. I’m always glad to learn of those who work so hard to make a difference. See – you have educated me! I’ll be sure to check out your website. My best to you, both in your work and health.

  16. Thank you for this post, Eileen. I really like your conclusion. Many people want to donate money for research but unfortunately most organizations that truly have that focus are not household names. I agree–we need to get the word out!

    • Thank you, Lisa. I didn’t want to just rant and get people riled up. We’re already riled but we’re also empowered in that there are things we can do that over time will make a difference.

  17. I have Stage IV BC and advanced ovarian cancer. There is more than enough “awareness” out there regarding BC. Whenever I talk to anyone about OC they are woefully unaware and ask me why we only hear about BC. I always say BC has a good PR team. Research and helping to pay for treatment is where our money should be going for BC, OC, and indeed all cancers.

    • Teresa, I agree that breast cancer is top heavy in PR while most other cancers become dwarfed under the onslaught of pink. Gilda Radner had ovarian cancer and I remember her celebrity bringing some spotlight to OC, but that was roughly 25 years ago. I’m really sorry for all you’re dealing with. Please feel the hugs I send you.

  18. I, too, was appalled to read Beth’s experience with Powell Brown. I actually can’t believe the things he said to her face. The leader of a breast cancer organization? That stage IV women should be there for THEM???!!!! I was sickened by this. It just goes to show that they are not in it for the cure or even for the women who run their races. They are in it for the money. Just another person making money off of breast cancer. It makes me sick.

    Thank you for writing this thought provoking piece. I’m also stage IIB. I’m not even a year out from chemo but I’m always in fear of recurrence. I’m frightened that if it does happen, that not enough people with power and money care to help me. That’s terrifying.

    • Carrie, one day at a time. None of us evades the fear of recurrence, but fortunately there’s a whopping 70% who never have a recurrence. Chances are you’re included. xo

  19. Elizabeth J. says:

    Thank you. You have said so well what so many of us feel about this issue.
    Personally, between fatigue caused by continuing metastatic treatment and neuropathy from the original chemo, I could not do races if I wanted to. I get a little tired of people expecting me to. I focus my limited energy on my family and some non-cancer related volunteer work that I truly love.
    We do, however, need to get the word out about research focused organizations. Too many people only know the flashier groups like Komen.

    • Elizabeth, when your resources are low, you have to pick and choose your priorities. You’ve chosen well. Charitable organizations are there to serve the community and special interest groups they represent. Dr. Brown should be ashamed of himself for speaking such words.

  20. Kelly Shanahan says:

    Thank you Eileen. As others have said, it really means a lot when early stages like you “get it”. We need you and others like you to continue to support us and our mission to expand metastatic research

  21. Interesting because if you really look into what Komen does, it educates for early detection which is what saves lives. From 1989 to 2012, breast cancer mortality in the U.S. decreased by 36 percent due to early detection and effective treatment. They don’t throw parties, they provide education and do outreach. They also fund mammograms for those who cant afford it, and provide assistance to those diagnosed after the mammogram. Most of you are in hospitals that receive tens of thousands of dollars from Komen to do research… you want someone to hate, as a Stage 3 survivor myself I understand… stop hating on the organization that does so much just because it can’t mainly focus on Stage IV. You go to conferences and get discounted rates, or scholarships because of Komen, no one complains then… most, if not all of the research out there has been because of Komen funds. Its fantastic that BCRF give so much to research especially since that is their whole mission. Komen is out to stop breast cancer before it starts.

    • Joyce – Thank you for bringing up the other work Komen does for the community. I think what the real issue here is that Komen says they are “For the Cure” and we “Run for the Cure” but the vast majority of the funds don’t go towards any scientific research.

      Komen’s current mission statement is “At Susan G. Komen, our mission is to save lives and end breast cancer forever by empowering others, ensuring quality care for all and energizing science to find the cures.” The focus of their money has been on quality care and education, and not research.

      So things like free mammograms are highly funded even with the Affordable Health Care Act (although far from perfect) that has given coverage to those who didn’t have it before.

      When the metastatic breast cancer community and others are at events like “Race for the Cure” we assume our donations are going exclusively for research, which they are not. So we feel duped and are angry.

      Komen needs to reread their mission statement and make their dollars go towards research. That will be difficult because many non-research programs depend on Komen funds for their existence.

      • Where are mammograms highly funded other than Komen? And what about treatment? Are those the non-research items you are talking about? 25% goes to research and the other 75% stays locally to go to hospitals and other cancer organizations to help facilitate treatment and to education and outreach. The Affordable Care Act is so flawed and people are not as educated as you think in this world. Just people for profits use the pink ribbon all over things doesn’t mean people are aware, it is one of the biggest misconceptions out there. If people actually looked at what the affiliates did, educated themselves, they would see how incorrect they are about Komen. It’s quite sad.

        • Joyce, I see you and Sandra had a meaningful back-and-forth. All that I’d add is I am aware of Komen’s financial assistance to needy people, such as grants to cover co-pays, medications, etc. In and of itself, that’s a wonderful thing. There’s too many complex issues that can’t be consolidated into a comment section, but I think Sandra handled it quite succinctly, and you’ve raised some valid points as well.

          Other than that, and speaking for myself, I don’t write these things because I want someone to hate. I write them because I love and care about people, especially when I see so many living with a death sentence. I think Komen has the power and resources to do so much more. Anyhow, thank you for your thoughtful input.

  22. Great post! I’m an almost-8 year survivor and diagnosed Stage 2B as well. I’ve always declined to participate and support Komen because I felt the missing narrative was that people still die from the disease, even after timely diagnosis and initial treatment. I know three people who died in 2015, and a fourth woman has been dealing with her metastatic diagnosis for almost a year now. I’m bothered that doctors and the most prominent breast cancer foundations do not address lifestyle changes that can be complementary in increasing survival rates.

    Typically, treatment is supposed to get you to a 5-10 year survival rate. My oncologist wanted to prescribe Femara for five years; and I declined. In my sixth year, she said that they’ve found the drug regimen to be effective for 10 years, and I still declined. I accepted her offer for follow-up appointments through the 10 year mark, though. My question has always been what happens after 5 years, 10 years? Basically, I’m on my own, anyway.

    Does anyone know which organizations take a more holistic approach? I will certainly check out BCRF.

    • Kallison – Try the Annie Appleseed Project for a more holistic approach to Breast Cancer treatment and prevention. The founder, Ann Fonfa, refused standard treatment due to her high chemical sensitivity. She practices evidence/based holistic approaches. Her group is holding a conference in FLA next February. Travel scholarships are available on their website annieappleseedproject.org

      • I’ll check out the link, Sandra. Thank you.

      • Sandra, thank you for your input to Kim. I hadn’t heard of the Annie Appleseed Project, but a cursory glance of their website tells me I’m aligned with their approach, especially as I’m highly sensitive to chemicals. Thank you for your excellent responses to the commenters. You’re a gem!

    • Kim, my b.c. was triple negative so there are no maintenance drugs to help me … and in a weird way, I’m glad because this way I wouldn’t have had to say “no” to my oncologist’s prescriptions. I’m also interested in holistic methods because I’m very chemically sensitive. I don’t know how I got through chemo, but that’s another story. There are no guarantees about recurrence, but I treat with a naturopath to cleanse my body from all the poison and damage done by chemo. Some things cannot be changed, but it’s made a difference in my energy levels and qualify of life, even the treatment is not a cure-all, and it’s not. I try to eat healthy and exercise. In other words, I do what’s in my power to support my health and immune system. I will say I’m shocked I haven’t had a recurrence at this point because I’ve had major stressors to deal with during and after chemo. I tell people I’m the poster child that proves negativity and stress don’t kill you. 🙂 In other words, it’s all a mystery. We do the best we can with what we’ve got.

      • Eileen, I changed my diet as well. I follow the blood type diet and started it after surgery and before chemo. I still follow it, but am incorporating some Paleo as well. The other important thing I do is acupuncture twice a month to support my immune system, along with Chinese herbs (mushroom brew) twice a day. I bet charting your own wellness course after treatment makes you feel less powerless about your diagnosis. Stay well!

  23. Eileen,

    I am livid about Powell’s reaction. Thank you for addressing Komen’s greed and lack of caring toward people’s lives. Saving lives is what should matter. And that is done by funding to research. I’m outraged, but so glad you wrote about this. I’m sharing!

    • Beth, it seems this latest hit a nerve in a lot of people. Lots of reaction going on and it’s good! Just wish change could be set in motion as easily and quickly as our nerves!

  24. thank you for posting this and your comments. for some reason i can’t get to the actual blog. like you i don’t have mets. in fact i have never had breast cancer but went through it with a friend who recently passed. i am so angry at how beth and kelly were treated. it’s horrible. i wonder what the actual susan komen would think. i am very glad to see someone who doesn’t have mets getting angry. we need more of us. as they say there but for the grace of go. I also think of mlk or gandhi (can’t remember which) who said as long as one person is not free no one is. that is how i feel about mets. i’m so glad its getting out there. I am proud to call beth caldwell my friend and she is my hero. I don’t think i’ve admired anyone quite so much. For my late friend, for beth, for all with metss and all who may get it it..i fight. metup needs to become a voice to be taken seriously. no more shushing or shaming.

    • Diane, you are obviously a wonderful friend. I’m sure Beth is equally proud of you. Thank you for standing by those who are afflicted with such a rotten disease!

  25. Valerie Mansbridge says:

    I’ve been at all this for 18 years this coming January. I have the BRCA1 gene and breast cancer twice and ovarian cancer. I’m still doing ok. I had NO idea all these years about what I’m reading about the Koman group. I’m sure my many friends and acquaintances don’t know either as they go run and donate money in that direction.
    This word needs to get out in a massive way. I also don’t know what you all are doing to get the word out. I want to only want to donate for people working toward the cause of research and helping women financially during treatment. I am certain most people think they are contributing to all of that by helping the Koman group. What are you doing to get the word out.? I certainly wIll help now that I know it.

    • Valerie, Komen does use a percentage of its money to help women who need financial help with treatment. It also contributes toward research, but we take issue with Komen because research is at the rock bottom of its spending priorities. It spends an inordinate amount of money on marketing and awareness. Marketing is the vehicle by which it brings in money, but the way it’s allocated shows, at best, misguided priorities and, at worst, blatant irresponsibility.

      As for what I do to get the word out, it’s always the same for everyone more or less: word of mouth. For me, because I have a blog, I have a platform in which to inform people. Then it comes up in conversations with friends and acquaintances. In that way, we influence people. I also make it a point to take action when alerts go out from groups such as Breast Cancer Action. Everyone plays a small part, but all those small parts add up and make a difference. If you want to see an excellent educational video that you can share with people you know, go to https://www.youtube.com/watch?v=qa4pzXv5QA0&feature=youtu.be

  26. 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.

    • Michelle, I agree that much good has been done by Komen and it’s sad that Komen funding has been cut to good programs such as yours. This is our point exactly. Komen’s spending priorities need adjustment. Awareness is its marketing tool and obviously that brings in money to fund good programs and research, but if you look at the numbers, they’re out of whack. If Komen has been bashed and lost funding, it brought it upon itself.

      And if funding research is so low on Komen’s list of priorities, why oh why is its slogan: For the Cure? Metastatic cancer is the only kind that kills. Roughly 30% of those who have gone through early stage breast cancer will later find themselves metastatic. As for prevention, there’s so much we don’t understand. There are many women who for whatever reason have breast cancer that doesn’t show up on mammograms. If those women are lucky, they find their lumps before they’re metastatic through self-exams, but not everyone has a palpable lump. Funding a cure or ways to keep Stage 4 patients alive longer should be a higher priority as well as programs like yours. Enough with the pink drill bits and all that nonsense.

  27. Greeting from Oregon! I applaud your standing up for what we work for. I am part of a group out of Eugene, Oregon that has created Dive For A Cure (diveforacure.org). We send 100% of monies raised/donated to Oregon Health Sciences University Knight Cancer Institute. We are now their #1 grassroots contributors! We have raised over $500,000 in 7 years. There are organizations that do this from the right place, their hearts, and ask for nothing in return. We are one of those…..we do support you.

    • Char, I’m so happy to learn about Dive For A Cure. Kudos to you for all your hard, selfless work. At some point, I’m going to create a page on my blog with suggested breast cancer organizations for charitable donations. I’ll be sure and include Dive For A Cure. My best to you and everyone who works so hard in Eugene, Oregon.

  28. Dawn in North Carolina says:

    This is a sad state for an organization with such a large voice to not choose to support the one thing that can turn this cancer thing around….research to find an earlier detection test!

    • Dawn, it really is too bad. Komen has turned into a monster marketing machine. I know it does some good, but it has the power to do so much more. Thank you for reading and commenting. My readers’ thoughts are always welcome.

  29. Thank you for telling the truth! As an NED’r I think your voice offers a perspective not often heard over the clamor of those pesky mets’ers. My 30-yr-old daughter didn’t even have two years before Triple Negative stole her beautiful life or she’d be one of the pesky ones applauding this article, so I’ll be her voice as long as I live.

    • Denise, my heart goes out to you. As a mother, I can’t begin to imagine your grief. I’m so sorry for your loss. Triple Negative is the most virulent, aggressive breast cancer. It moves fast. Thank you for being an advocate on behalf of your beautiful daughter and so many like her. xo

  30. you are brave, real and a fierce voice for the mets community. You my friend personify selflessness

  31. Diane, you are too kind. Bu it takes one to know one. You’re made of some good stuff yourself. 🙂

Trackbacks

  1. […] 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 […]

  2. […] Eileen and Beth Caldwell are justifiably outraged by Komen’s attitude toward Stage IV patients. […]

  3. […] to a Stage 4 patient that I messaged her and asked for permission to quote her in a blog post about Komen and the Metastatic Community. Of course she said, “Quote away!” I posted and she wrote in the […]

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