The healthcare industry has made tremendous strides in recognizing health equity over the past two years. But there is still much work to be achieved. The COVID-19 pandemic spotlighted how diseases and access impact communities and trust differently in the U.S. Private and nonprofit organizations are partnering together to tackle these inequities and biases head on to help drive positive change in healthcare.
For IPG Health, nothing is more important than health. Which is why the healthcare marketing network is harnessing creativity, technology and data to inspire behaviors that fuel better health. That starts with a commitment to diversity, equity and inclusion through clinical trial representation in partnership with Touch, The Black Breast Cancer Alliance anti-discriminatory healthcare policies with FCB Health New York, an IPG Health company and the Gay Men’s Health Crisis (GMHC).
Ending breast cancer disparities
Breast cancer is the most common cancer diagnosed among women in the U.S. and the second-leading cause of death among women after lung cancer. It turns out this disease does not affect women evenly.
Though incidence rates are about the same, Black women diagnosed with breast cancer die at a 41% higher rate than white women, and have a 39% higher recurrence rate. Since 1990, breast cancer deaths have decreased by 40% in white women, but only 26% in Black women.
Those statistics didn’t sit well with Ricki Fairley, an 11-year survivor of breast cancer and CEO of Touch, The Black Breast Cancer Alliance. While social determinants are a factor in disease, they do not tell the full story. The truth is, she explained, “the science isn’t working for us, as the drugs were never tested on our bodies.”
This inequality in access is leading to devastating health outcomes for Black women. Black women represented only 3% of clinical trial participants for breast cancer drugs approved from 2008 to 2018. Yet, Black women under 30 are 38% more likely to be diagnosed with breast cancer and 2.6 times more likely to die of the disease than white women in the same age group. Triple-negative breast cancers, which Fairley had, are more aggressive and difficult to treat than other breast cancer subtypes. About 21% of breast cancers diagnosed in Black women are triple negative, compared with just 10% in white women.
What the data shows is that a Black woman’s breast cancer cell looks different from a white one. “It’s a different disease,” she said. “It deserves different treatment.”
As a marketing professional, Fairley wanted to understand why Black women were not participating in clinical trials and, as a result, missing out on newly emerging and often life-extending treatments. There is clearly a longstanding issue of trust that extends to doctors, researchers, pharma and scientists. Black women do, however, trust their Breasties, other Black women who have experienced breast cancer firsthand.
Fairley also found that Black women are not being invited to participate in clinical trials by their doctors. Even if they were, there was a significant amount of misinformation about how trials work or what standard of care means that needed to be clarified within the community. “We learned that there is this fear of the unknown,” she said.
The first step in trying to diversify clinical trials was to ensure that Breasties and Black women diagnosed with breast cancer are better informed. Those trusted messengers are critical in order to build trust as well as dispel fears and widespread misconceptions.
The When We Tri(al) campaign launched in February 2022 as a call-to-action for Black women to participate in clinical trials and improve the odds for themselves and other Black women. On the site, patients can find “women who look like them, who have a similar story, who understand what a clinical trial is and how important it is to do,” Fairley said. In addition, awareness ads on hip-hop stations on iHeartRadio and Radio One targeted women in 10 urban markets.
In May 2022, When We Tri(al) hit the road “to be in front of Black women where they live, work, play, pray and slay,” Fairley explained. Instead of participating in health-related events, they opted to go into local communities and meet women at events such as hair shows and music festivals. To date, Touch has signed up 5,000 women on clinical trial portals. The reason it’s working is that “they trust the breast cancer survivors that look like them,” she said.
Fairley knows she can’t win the battle alone. That’s why she and other health activists have formed the Black Breast Cancer Alliance. “The only way I’m going to be able to scale When We Tri(al) is to partner with other organizations,” she said.
For example, at the San Antonio Breast Cancer Conference, Fairley assembled various leaders from local community-based organizations including the Urban League, NAACP, sororities, churches, hospitals and more to talk about the disease, come up with ways to reach more people and take action. “That’s where the rubber meets the road,” she said. Now, when patients call their pastor to pray for them, for example, they can also access information on clinical trials.
In addition, Touch is working with pharma partners to produce more effective materials. “Until you realize that what you’re doing and have been doing to recruit patients is wrong, you’re not going to get anywhere,” she said. It’s important for them to “do it differently and think about it differently.”
Fairley is forging ahead with increasing racial diversity in clinical trials through these collaborative efforts.
Her goal is to have participation “commensurate with the burden of disease,” she said, and ultimately, to put an end to this horrible disease.
Advancing LGBTQ+ equality
Health equity goes beyond equal access. It also requires addressing structural and historical biases that permeate the system. For nearly 40 years, gay and bisexual men have been banned from donating blood in the U.S. based on fear and misconceptions of AIDS and HIV. The Blood Equality initiative in partnership with FCB Health New York, an IPG Health company and GMHC is fighting to eliminate all discriminatory restrictions.
After participating in a company blood drive, Mike Devlin, executive creative director of FCB Health New York, asked one of his coworkers why he chose to leave without donating. The answer surprised him. His colleague wasn’t allowed to donate blood because he was gay. At that time, the complete Food and Drug Administration (FDA) ban implemented at the height of the AIDS crisis was still in effect.
“It struck home to one of our own,” he said. They set out to shine a light on the inequality and the bias and committed to fight in a pro-bono capacity until the ban was lifted.
In December 2015, the FDA revised the lifetime ban, allowing gay and bisexual men to donate blood on the condition that they have not engaged in any sexual activity with other men for one year. During the COVID-19 pandemic, the FDA revised the policy again to allow gay and bisexual men to donate blood if they had been celibate for the three months.
“The science doesn’t support the ban,” Devlin said. “Our goal is to have the questionnaire remove the stigmatized questions.” Because the three-month deferral applies solely to gay and bisexual men and is not based on risk factors, it reinforces negative stereotypes and the false perception that heterosexual people are at low risk for HIV infection.
The creative team wondered how this law compared to other antiquated ones in the U.S. The current Dumb Law Paradox campaign juxtaposes the ignorance and absurdity behind these outdated rules. For example, “bingo sessions longer than five hours are against the law” and “to buy junk from a drunk is a criminal offense” and “a frog which died competing in a frog-jumping contest can not be eaten.” Equally ridiculous is the fact that “gay men must remain celibate to be considered safe enough to donate blood.” To spread the word, FCB Health New York and GMHC have pushed out content online and on social media and relied on donated media.
“It’s a seminal campaign because it represents everything that the community is trying to fight against,” explained Devlin. GMHC recognizes “this is a priority because if discrimination exists here, the ripple effects are profound,” he added. “This is part of a bigger thing for the community to achieve something very simple, which is equality.”
From the outset, a key performance indicator for FCB Health New York was to engage the FDA. It challenged the FDA to join a medical advisory panel so it could hear directly what needed to be done to eliminate this policy. That KPI was met within the first year of the campaign.
The end goal is “that every single pint of blood gets treated the exact same.” In order to do that, the conversation must be about “science, not stigma.”
Donations at the American Red Cross plummeted during the COVID-19 pandemic and it’s facing the worst blood shortage in over a decade. The elimination of the outdated and discriminatory FDA policy would result in more than 600,000 pints of blood — blood that could help save the lives of 1.8 million people every year, according to the Williams Institute.
Every sample of blood is screened using two different tests to ensure it is safe. According to the American Red Cross, tests now allow for detection of HIV within seven to 10 days of infection, eliminating the need for any three-month deferral. The risk of HIV infection from a blood transfusion is low at one in 1.47 million, according to FDA estimates.
To highlight these facts, the Blood Equality initiative has organized several community events and public discussions at the University of Alabama at Birmingham, American University, City Hall and the High Line in New York City, among other sites. Its medical advisory board continues to push the FDA to make blood donation a more inclusive process and screen potential donors instead for high-risk behavior, regardless of sexual orientation, and to subject only those determined to be at high risk to deferral periods.
For those in the throes of the work for years, the finish line is still farther ahead. “We seem to be inching our way away from this discrimination,” Devlin said. The hope is that the FDA’s Advance Study that assesses the safety of using a questionnaire based on individual risk will provide a “more scientific basis to change the policy.”
It’s a significant step in the right direction and toward creating a more inclusive health community. “The question is a symbol of the more deeply rooted discrimination that gay blood is dirty, that gay men and bisexual men are more likely to spread disease, which is not true,” Devlin concluded. “We’re fighting against the reason the questions exist more than the questionnaire itself.”