It’s Time To Fix The Lack of Diversity in Cancer Clinical Trials

clinical trial

Stand Up To Cancer’s new initiative aims to increase minority representation in these potentially life-saving trials

As we continue conversations around systemic racism, we wanted to highlight a critical disparity: For decades, there has been an alarming lack of diversity in cancer clinical trials. Stand Up To Cancer’s new Health Equity Initiative aims to reduce these disparities — by increasing minority representation in these potentially life-saving trials. Dr. Karen Winkfield, a member of the Health Equity Committee, spoke with Wake-Up Call about the important initiative — as well as the disparities exacerbated by the Covid-19 crisis.

Wake-Up Call: What exactly is the Health Equity Initiative — and why is it so significant, in terms of cancer care?

Dr. Karen Winkfield: As you know, Stand Up To Cancer has been such an amazing advocate for really trying to move the needle forward with respect to cancer therapeutics. They do that by providing funds to researchers to develop these amazing research projects that oftentimes will go into clinical trials — and some of which will actually then move on to have drugs that obtain FDA approval and can then be used in the clinic.

Part of the challenge is that for most clinical trials around the country — particularly cancer trials — participation is not very diverse. We know that the majority of individuals who are enrolled in cancer clinical trials happened to be white. So there are issues that come up potentially: How broadly applicable is this new drug or this new therapeutic that’s been developed? How do we know that it actually is going to work the same in different populations?

In fact, we know that there are some populations where different medications, different drugs, different therapeutics will work differently. It was really important to Stand Up To Cancer to try to address this issue. So they developed the Health Equity Committee, and I’m a member. We have incredible participants from all over the country who are really focused on improving health equity in our country. One way to do that is to try to improve access to clinical trials for diverse populations.

So this new initiative is really around tasking these amazing and collaborative researchers with saying, “We want each of these teams to make sure that, when they open up their clinical trials, they have the intention to ensure that there’s diverse participation.” That actually does require some thought — because as you can tell, this is a national issue. So it requires these bright minds to ask, “How can we ensure that we have African Americans who are able to participate, or Hispanics that are able to participate, or American Indians or Asians, to ensure that there is diverse participation from a broad breadth of individuals who are able to participate?”

Beyond clinical trials, where else have you seen racial inequality among cancer patients and treatment?

That’s a big question. There are health inequities across the board when it comes to cancer. Just the same way that if you look at any disease — whether it’s hypertension, any cardiovascular disease, HIV AIDS, infant mortality — Black individuals have the worst outcomes across the board. Black people have the highest incidence of the top four cancers: Lung cancer, colorectal cancer, prostate cancer, and then female breast women — Back women have the same incidents as white women with that, but they have higher mortality.

So it’s not just the outcomes. It’s actually the number of new cases is higher. Back men, in particular, are dying of prostate cancer at a rate that’s almost two and a half times higher than white men. There are issues with respect to disparities across the board, not just with respect to treatment.

There are also increased risk factors to develop cancer. Obesity, for instance, has a higher predisposition in African Americans. We know that obesity is now the number two modifiable risk factor for cancer, very closely getting ready to outpace tobacco. But if we are not preventing cancer by reducing the risk, then that’s problematic. So there’s, there’s disparities with respect to risk factors.

There’s also disparities with respect to screening. We know that African Americans don’t get screened for cancers at the same rates. Some of that’s related to insurance; some of it’s related to not being able to get time off from work so that they can get screened. There are also disparities with respect to diagnosis.

Similarly, Covid-19 has disproportionately affected Black Americans as well. How is the virus exacerbating these disparities?

It’s highlighting some of the deficits in the health care system. Part of the challenge with the way that the American health care system is set up is that insurance is tied to your job. What we find is that Black people oftentimes have jobs where they may be working part time, because employers are able to do that. So that’s why oftentimes you’ll have African Americans who are working two and three jobs, so that they can provide for their families, but there may not be insurance that’s tied with that number one.

But we also find that with Covid-19, many of the frontline workers — whether it be bus drivers or individuals who are working at stores — are at higher risk, because they’re at work all the time. They’re front facing and can’t work from home. So their exposure risk is higher.

You have this issue with Covid, with them having higher exposure — but yet them not having the insurance. So if they get sick, they may not be able to get the care that they need, or may not be able to go and get tested. Covid-19 is really just highlighting not only gaps in care, but also access to care. We’ve also heard stories of African Americans going in with symptoms and then being turned away in the emergency room.

Beyond increasing diversity in clinical trials, what can the healthcare community do to address racial inequity right now?

The barriers to health care are really rooted in systemic racism — and people don’t like to use that word. They don’t want to talk about it, but it’s really important to articulate it. So then we can say, “Well, what is the root cause? And how do we then address that?”

One of the things that I’ve been encouraging people to do is actually inform themselves. These health disparities are not new. People have been documenting the issues in our health care system, specifically relevant to African Americans, for decades, if not centuries. These are not new problems. So it’s about educating yourself, but then also being introspective about where you are as an individual and what benefits you may have had because of systemic racism.

This post has been updated.

This interview has been edited and condensed.

This originally appeared on Medium.