Greetings,
From time to time, we see posts regarding a product or an event for a variety of organizations and individuals. We often get mixed responses about these posts, both publicly and privately.
There is an existing rule that bans all marketing and solicitation. The text is here:
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No marketing or solicitation
You may not use Inspire for any form of marketing or solicitation. Ultimately moderators are the judges of what constitutes marketing or solicitation. Like other things, we know it when we see it. Specific examples include, but are not limited to: promoting a product, service, company, person, miracle cure, Web site or online support group; soliciting donations for charitable causes or yourself; presenting your resume and/or asking for work; selling Viagra (we have plenty, thanks).
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Up until now, our criteria for including or excluding a post has been a bit subjective, and not consistent with this rule. As long as the post is from someone or some entity that LCA knows and collaborates with and it is lung cancer specific, we felt comfortable keeping it. Sometimes community members agree with us, and sometimes they don’t.
We never take these decisions lightly. But as a result of strong feedback we’ve gotten over time and comments regarding recent posts advertising for products and events, we have made the decision that we will no longer be allowing any post that advertises a product or event, regardless of who it’s coming from. This includes us at LCA.
We at LCA are in full support of all event and product posts that have been on the community in the past. We also want to be sure everyone has easy access to a place to promote and learn about events being sponsored by all lung cancer organizations, not just LCA. LCA has always had a place on our organization website where events are constantly being posted, for ALL lung cancer organizations. If you have an event that you would like to advertise or if you would like to find an event, please click on the following link: http://www.lungcanceralliance.org/news/events.html . We will also have this link permanently on the right side of this page.
All event and product posts prior to now will be maintained on the community. However, in the future, posts on the community related to products, events and fundraising will be deleted. We understand that many members will be disappointed by this decision, but having weighed the feedback that we have received, we feel this is the best option for us at this time.
Thank you for understanding.
Amy
LCA
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New Decision regarding posting events and products
Explore topics in this discussion:
51 replies
- Oldest first
- Newest first
- By amymaura
- Posted March 26, 2009 at 11:26 am
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Betsy,
You are right, there is a difference between soliciting and advocacy, but it can be a fine line. Any one of our lung cancer organizations could host an advocacy event, but the end goal involves raising funds for our organization. Even if the raising of funds is to do advocacy, it's still fundraising.
All events should be sent to the link provided.
Amy
LCA
- By Christine_D
- Posted March 26, 2009 at 11:31 am
- Report post
My final words on this.. I am so sad that this wonderful awareness campaign by the "nail polish company" is being dealt such a huge slap in the face. Yes they will profit from sales of said product but, and this is huge... THEY ARE UNDERTAKING A HUGE FINANCIAL COMMITMENT TO LUNG CANCER BY PURCHASING FULL PAGE ADVERTISING PROMOTING LUNG CANCER AWARENESS...
Geesh, shame on them for getting involved.
- By amymaura
- Posted March 26, 2009 at 11:32 am
- Report post
Kathy,
Mentioning or recommending a product that has been helpful to you or someone you know is still allowed. I would encourage people to not include links to how to buy. That's when it gets shady. If we allow you to link to a product site for a cream that worked for you, then we would have to allow for someone to link to a site that advertises hemp oil (true story) for treatment of lung cancer. We want to avoid all vague areas and this is the easiest way to do it. If people want to find the product website themselves, no one will stop them.
If a product website is posted, we will not delete the post, but we will email you and ask for you to remove the link.
Hope that makes sense.
Amy
LCA
- By amymaura
- Posted March 26, 2009 at 11:35 am
- Report post
And also to be clear, this is not all about the nail polish campaign. We have received feedback regarding a number of postings about products and events over time. It is a topic that comes up frequently, and we needed to make a decision. It was a long time coming.
Amy
LCA
- By bayrealtor
- Posted March 26, 2009 at 11:59 am
- Report post
Hello Amy,
I feel much better about this now that I understand.
This site is so important to all of us and it really is a second family. As once said by another member:
"We are all members of this exclusive club that none of us wanted to join."
BUT....now that we are here, well........
you know what they say "When given lemons........."
and that is exactly what I feel we do for each other here.
Most of us will never meet each other in person but I can tell you we have strong bonds between us.
"Time to wake up "sleeping beauty" and give her a Tarceva pill." God, I love her so much.......
Love and God Bless to all!
Bill & Cathy
- By patriciad
- Posted March 26, 2009 at 12:51 pm
- Report post
WOW! I really don't know what to say. I am a firm beIiever in the science of medicine. It is nothing short of miraculous in how far we have come in research and treatment for not only cancer, but a host of other diseases as well. This message board has given be a crash course in lung cancer and not only what to expect but how to cope with all the side effects that go with aggressive treatment.
I agree that we shouldn't be out htere trying to profit on "snake oil " cures but at the same time I don't have time to research all of the current treatments out there. I read the posts every day and weed through the stuff that applies to me and my husband. Some people, I have found, have taken a totally alternative approach to this cancer, some completely medical and some a combo of he two. I for one am willing to try anything that will do no harm. My husband is stage IV but a very advanced stage IV. I have chosen to try some of the suggestions on this board and if in doing so he is more comfortable, so be it. I have only been a member for a few months but most of the advice here has been very helpful. I think that some of our posters may be very enthusiastic in proposing a suggestion but that is because they have gone through so much and have hit upon something that has finally worked for them. I would rather try something that someone here can attest to than randomly trying stuff that is just floating around out there on the internet. We don't really have time on our side, so I am willing to go with the suggestions of some posters. Then again, if it looks like "snake oil" I think I am smart enough to pass on that.
Pat
- By mitziger
- Posted March 26, 2009 at 1:27 pm
- Report post
I was just wondering if what I posted was wrong, it said I was going to try a product that is supposed to make your hair grow in healthier and faster and remove toxins from the chemo. I believe I probably did list the site but I sure have nothing to do with the sale of the product. I thought it would be fabulous if it worked for people and I was going to try it, nothing is worse (almost) than losing your hair) especially for a woman. Sorry if I did wrong by that post, but I was wanting to help others as I have always tried to do. I hope we can all continue to get helpful information to help in our journey down this road as we are all in this together and needing all the info we can get. There are too many sensible people in here that they are going to believe some of these cures.. Thank you for listening.
- By amymaura
- Posted March 26, 2009 at 2:12 pm
- Report post
Hi mitziger,
It is absolutely fine to list a product that worked for you, and you can name the product. Did the product work for your hair? Don't worry about it if you listed the site before. From here on out, we'd like to avoid posting the site where someone can buy a product though. But if you write and say that a specific product worked for you, that's fine. I've done it in plenty of posts too. For example, just recently someone posted about scalp sores from Tarceva and I posted about two shampoos and foams that had come recommended by a nurse that they might try.
Keep up the information exchange!
Amy
- By mitziger
- Posted March 26, 2009 at 2:24 pm
- Report post
I cannot say yet whether it will work or not, since I only received it Tuesday, hair was thinning before all this came up. I am hoping for a full head of hair, it is looking good but you only use this 3 times a week. Suppose to remove toxins from the chemo, make it grow faster and be healthier. I will try their shampoo also and I will let people know, it promises a lot also and I do not think this is a gimmick of any kind. They say they are the finest, safest products for hair and skin that you can buy and work better than any human hair salon products so we will see and I will be sure and post and let people know it it does the job...
Thanks for listening.......
- By jmichelle
- Posted March 26, 2009 at 2:35 pm
- Report post
Hi Amy,
I have a question regarding this policy and hope I'm not being repetitive. I scanned the replies and didn't see what I was looking for specifically.
I originally made a post regarding the OPI nail polish ad campaign. I was not asking people to buy the polish or anything like that. I just happened upon the ad.. noticed it was about lung cancer awareness... got excited and wanted to share the good news with everyone here. Are you saying THAT is not allowed either? I just want to be clear on this. I see no harm in making people aware of companies that support our cause... that's all I was trying to do in my specific post.
Thanks,
Jodi
- By MarionW
- Posted March 26, 2009 at 3:25 pm
- Report post
I just want to thank you all for the work you do to provide this site to us. when I was diagnosed, I had no where to go for support. This site has helped me and I have tried to post when I think i might have some useful experience and hope to share.
Thank-you for being concerned about what is posted here. You can never win in these things and please everyone. I trust you all to be be caring and diligent in ensuring the value of the site is preserved.
Thankyou again for all you do.
- By jazzbo
- Posted March 26, 2009 at 4:31 pm
- Report post
Hey , you know every once and awhile we all need to get our blood pressure up. I truly believe it invigorates us and keeps us on our toes. Information is great thing to have and its a great asset also. The policies are here tohelp us not to limit us. I think we can get used to not using links and as Amy says if someone wants to post about something great just don't put the link. As far as mentioning that you were o are involved in a program, Great. Mention it and that is that. If we want to know more we have to go to the LCA website and post it under events and find it. No big earth shattering idea. Maybe by doing that you might get more people to see it. I know when I first came on here I was on the LCA site and followed a link to here. Enough said by me unless my blood pressure goes up again. I make no promises. lol- John
- By amymaura
- Posted March 26, 2009 at 4:52 pm
- Report post
Hi Jodi,
I looked back at your post. You did not tell anyone to buy the OPI polish and you did not include a product website. That is absolutely not a problem.
Amy
LCA
- By rmhayes
- Posted March 26, 2009 at 8:38 pm
- Report post
I for one am so glad that it will no longer be permitted for someones cure to be posted on here. I do not like nor do i appreciate some of the "commercials" i have seen lately. I realize though some people do so at the same time i am glad they will have a place to post but not on here. tysvm.
robin
- By rmhayes
- Posted March 26, 2009 at 8:46 pm
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that was one of my main concerns as well: what works for one mght not be right for someone else and should never be taken or used without talking it over with your physician. i didnt find the kind of info marylou was offering bothersome but there seemed to be more and more "commercials" happening on here.
robin
- By rmhayes
- Posted March 26, 2009 at 8:57 pm
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in reply to those that are comparing this site to china and censoring: they are adding a link on the side for those that want to advertise their useful info...but i have found a couple of people who came to this site and having just joined starting advertising for a "cure" no matter what post they were answering to. wasnt just one certain person ive noticed it with a few and i had never seen these same people post before on any subject until they signed up and starting out selling a product. and ive not been here long just every day since august and i never saw them before the advertising post. i found it worrisome to say the least and im sure im not the only one. you have offered valuable information ray and several others but none of the regulars have posted anything but latest news or things like gels for the itch, rash, nausea med. u havent given a link and said u should try this it "cured" so and so....youve given valuable information when you tell what works for you. theres a difference in offering advice and being a part of the community and than joining to act like your part of the community to gain trust and then start telling you about this great cure. believe it or not this has happened. and if ya'll want to try anything when all else fails..i can understand that..thats why they (the modulators) have provided a link just for those who want the advertisement.
robin
robin
- By bayrealtor
- Posted March 27, 2009 at 1:05 am
- Report post
Ahhhhhhhh dear Robin,
Thats me your talking about (China and censoring) and I meant every word. I was of the understanding that we could not talk about our issues such as a rash and how we solved them. Example I used was the tarceva rash. The folks in power here have explained more clear what will and will not be allowed and I am in complete agreement. At the same time.......If I see something I'm not sure about or perhaps dont like I will always want the opportunity to decide for myself instead of having others decide if I can even have access to the information.
Based on the posts above, I think the majority of foks here feel exactly the same way.
Love to you as always....just wanted to give my opinion again as you made it a point in your post.
- By Lee
- Posted March 27, 2009 at 4:46 am
- Report post
It's understandable that people are confused every time one of these new "rules" appears. "Inspire" does not make it easy for you to understand where they are coming from. The information about "inspire" is hidden somewhere on this website but even I can't remember where. I believe it should be prominently displayed; hiding it is much like the behaviour of the people who come here pretending to be like you and me when their true agenda is to sell a product.
1) Inspire is a BUSINESS. Their first priority is profit. I suspect many people do not realize this. I'm constantly seeing posts that lavish praise on Inspire employees for all the good and wonderful work they do for us. Yes they do a good job - that's what they're paid to do.
2) Inspire's clients, both directly and indirectly are pharmaceutical companies. Again, I think this should be prominently displayed but it is not. Once you realize where the money is coming from, the reason behind many of the "rules" becomes apparent.
3) WE are not clients, we are Inspire's "product". However, it is necessary to keep us "happy" because if everyone left the board, Inspire would have no product to sell.
I am pro-business. The thing about 1), 2), 3) that bothers me is Inspire is not upfront about it. Otherwise everyone wins: Inspire makes money, the pharmaceutical & spin off industries make money and we have a fine (and cost-free) meeting place where we can make friends, find support and discuss certain subjects. If you want to discuss "alternative" treatments you would be better served elsewhere. I don't even try to talk about it here. The first response almost seems scripted and is invariably negative. And those who persist are eventually banned from the board. If Inspire made it clear who their clients are, people would understand why only a brief discussion of non-pharmaceutical treatments will be tolerated.
I admit I was somewhat perplexed by the ban on announcing fundraisers on the board. But I note that Amy's last post included a little promo (including a contact name & address!) for the fundraising group they are affilliated with. Perhaps they don't want money siphoned off to other groups.
Lee
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Sorry, this discussion is closed to replies.
For further clarification, does the prohibition against "promoting" or "advertising" a product just mean "selling"? In other words, vendors are not allowed to sell products on this board--?
But is mentioning or recommending a product still allowed? What about mentioning a product and including a web site where it is sold, as long as we are not the one selling it?
Semantics...