If you hadn’t heard already, October is National Breast Cancer Awareness Month. And if you didn’t already know that, one might wonder where you’ve been for the past 30 years. Since its launch in 1985 as an annual month-long campaign — originated by pharmaceutical company Imperial Chemical Industries (now part of AstraZeneca, producer of several anti-breast cancer drugs) — NBCAM has become an international event and to some, an annual frustration.

Think Before You Pink, a project of Breast Cancer Action, a breast cancer advocacy nonprofit, details the history of how NBCAM activities began and how the color pink and the pink ribbon came to symbolize all things breast cancer. Initially, the focus of the movement, which was launched in grassroots fashion by Charlotte Haley — a 68-year-old with several family members who’d battled breast cancer — was on attracting more funding for breast cancer research and prevention. In 1990 she began making peach-colored ribbons by hand and attaching them to postcards she’d hand out in the community and mail to prominent women. The cards read: “The National Cancer Institute annual budget is $1.8 billion, only 5 percent goes for cancer prevention. Help us wake up our legislators and America by wearing this ribbon.”

[See: What Not to Say to a Breast Cancer Patient.]

Alexandra Penney, then-editor-in-chief at SELF magazine, caught wind of Haley’s efforts in early 1992 and tried to convince Haley to collaborate with the publication on its second annual Breast Cancer Awareness Month issue, backed by Estée Lauder cosmetics. Estée Lauder’s senior corporate vice president, Evelyn Lauder, was a breast cancer survivor who also founded the Breast Cancer Research Foundation in 1993. The cosmetics company wanted to adopt and promote Haley’s peach ribbons to aid in the fight against breast cancer, and SELF wanted the ribbons to feature heavily in the magazine. But Haley refused to work with either, saying they were too commercial. To get around potential legal issues with using the peach-colored ribbon, the magazine turned the ribbon pink. Subsequently, Estée Lauder distributed millions of ribbons via cosmetics counters around the country, and the branding of breast cancer as a pink disease was complete.

Over time, the annual campaign has gathered steam to reach where we are today: The NFL paints parts of football fields pink and players wear pink socks during every game in October; the Automobile Association of America wraps its October newsletter in pink paper; you can “shop for the cure” by buying pink products and items labeled with a pink ribbon; and scores of other entities “go pink” in support of breast cancer awareness. In this more-is-always-better culture, it shouldn’t be surprising that virtually everyone has jumped on board the pink train. And that’s a good thing, because the more people know about breast cancer, the better their chances of avoiding or surviving it, right?

Well, according to some breast cancer survivors, not necessarily.

Nancy Stordahl is the Wisconsin-based award-winning blogger and author behind Nancy’s Point, “a blog about breast cancer and loss.” Stordahl is herself a breast cancer survivor — she was diagnosed in 2010 with stage 2b breast cancer and learned that she had the BRCA2 gene mutation. Her mother had died of metastatic breast cancer in 2008, so Stordahl underwent a double mastectomy and chemotherapy to treat her disease.

Stordahl has written extensively about how “pinktober” normalizes a wretched disease that is anything but normal. She says she thinks the efforts to raise awareness have gone too far. “I think we’ve kind of desensitized the public somewhat. We’ve gone overboard with the awareness. Most people in this part of the world are very much aware of breast cancer,” she says. And when campaigns are designed to take a light-hearted or more fun approach to discussing the disease, that really rubs Stordahl and some other survivors the wrong way. “With a lot of these campaigns, their excuse is, ‘we want to lighten it up. We want to make it more fun. We can get serious later, but we want to bring it to the younger crowd by making it lighter.’ Which to me is total BS. Saving the hooters, saving the ta-tas, all the crazy food that’s made in the shape of breasts … it’s just very trivializing and unacceptable as far as I’m concerned. It’s demeaning, and it’s objectifying women. You’d think in 2017 we’d be way past that, but we’re not.”

[See: 7 Innovations in Cancer Therapy.]

In addition to concerns about objectifying women and sexualizing breast cancer while also trying to make it into some kind of party-hearty pink sorority, Stordahl says “the messaging is incomplete.” Not only does the pink branding exclude men who get breast cancer, most of these campaigns focus on screening and risk reduction, meaning that awareness of stage 4 metastatic breast cancer is often overlooked. Stordahl says many stage 4 patients say they feel left out, especially in October. “I’d like to see the focus be more on the people who are in real need,” she says. “Everyone is aware, now we need to work on finding less harsh treatments and supporting the people who have metastatic disease as well as working to prevent new cases.”

The Metastatic Breast Cancer Network reports that more than 40,000 people die of metastatic breast cancer every year, and between 6 and 10 percent of new breast cancer cases are diagnosed at stage 4, the most advanced and fatal stage. That equated to roughly 13,776 to 22,096 cases in 2012, the MBCN reports. However, “statistics are only gathered for initial diagnosis of stage 4 metastatic disease,” so it’s unclear exactly how many people who had initially survived breast cancer that was diagnosed at an earlier stage now have a recurrence of stage 4 cancer. The MBCN estimates that between 20 and 30 percent of all existing breast cancer cases are stage 4 recurrences. With those figures in mind, Stordahl says, “some things shouldn’t be lightened up, and breast cancer is one of those things.”

But there is hope that the dynamic will shift. Stordahl says since she started blogging in 2010, she has seen some progress. “I think I see a little less pink-shenanigan nonsense,” she says. And actress Eva Longoria recently made headlines with her newly-launched “Kiss This 4 MBC” campaign backed by pharmaceutical company Novartis. That campaign is aimed at raising awareness and support for the metastatic breast cancer community. The objective is reportedly to donate $200,000 for MBC research via social media. Novartis announced that for every social media post using the hashtag #KissThis4MBC, it would donate $10 to the Metastatic Breast Cancer Network and METAvivor, two patient-led advocacy organizations. The campaign also encourages direct donations to these two organizations.

For its part, the Susan G. Komen organization, which is the largest breast cancer-related charity in the country and a source of much pink cause-marketing in the month of October, has consistently said that raising awareness is always a good thing. In 2013, Lynn Edrman, then vice president of community health at Komen, was quoted in the New York Times Magazine as saying, “nearly 40,000 women and 400 men die every year of breast cancer. Until that number dissipates, we don’t think there’s enough pink.” This sentiment echoed one made by another former Komen employee, Katrina McGhee, who’d been the executive vice president and chief marketing officer for the Komen organization between 2006 and 2012. McGee told NPR’s Jacki Lyden in 2010 that “until we get to a point where less women are dying, we will never have enough pink. And as long as there are still myths and misperceptions in the market, we need Breast Cancer Awareness Month.” According to the company’s 2015-2016 annual report, in fiscal year 2016, “nearly 40 percent of our research grants focused on metastatic breast cancer.”

When asked whether he thinks the pinking of October is trivializing breast cancer, Dr. Sagar Sardesai, assistant professor of medicine at the Stephanie Spielman Comprehensive Breast Cancer at the Wexner Medical Center of Ohio State University, says, “That’s a good question and a tough one to answer.” Speaking thoughtfully, he adds, “I think neither the color nor the ribbon is what is trivializing breast cancer. I think it was started for a good reason. It was started to make awareness for this horrible disease.” He says as a physician treating breast cancer patients, he’s seen too often “how it rips apart families. How it affects women, young women, single mothers. It’s a terrifying disease.” So raising awareness of the reality is a good thing. Urging women to take care of themselves is a good thing.

But, Sardesai says that sometimes the intended effect is not achieved, either through thoughtless marketing or a lack of understanding of the real issues, and he says he’s seen several examples where the disease is being trivialized through misguided awareness campaigns. “It looks like it’s being made fun of when it shouldn’t be, and it can come off as extremely offensive to someone who has gone through those treatments, has lived that life and is living in fear of that disease coming back.”

[See: A Tour of Mammographic Screenings During Your Life.]

He encourages anyone looking to launch a campaign in support of breast cancer research or prevention to take a moment and think about the approach and how it might make survivors feel. “I think it helps to put yourself in [patients’] shoes. When you’re trying to create awareness, ask, ‘is this effective? Is it really addressing the question?'”

And for those campaigns that do miss the mark, Sardesai says, “I don’t think it’s the ribbon and I don’t think it’s the color. Going pink is not what’s trivializing breast cancer. It’s us. It’s people who make bad choices or think that this is OK to do.”

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Does ‘Pinktober’ Risk Trivializing Breast Cancer? originally appeared on usnews.com