The Need for More Minorities in Lupus Clinical Trials and Research
Hetlena Johnson, 48, is a lupus patient advocate living in Columbia, South Carolina. She has participated in more than five clinical trials and many studies to help advance lupus research.
But as a Black woman, she’s in a small group of diverse patients with lupus who have answered the call. When diagnosed in her late teens, doctors told Johnson that she may only have 3 more years to live.
“Well, I’ve certainly come a long way,” she says. “My family supported me to make sure I could live successfully with this disease.”
Today, Johnson uses her success with lupus to give back by joining more trials and encouraging others of color to do the same.
What Lupus Trials Are Missing
Clinical trials help doctors know if new medicines can safely help your lupus symptoms get better and should be tested on people similar to those who have lupus. Yet Black women only represent 14% of trial participants even though they make up 43% of lupus cases in the U.S.
New lupus therapies can be safer if the medicines are tested on people similar to those living with lupus.
“Ultimately, it’s how we find a cure,” says Jessica Williams, MD, a rheumatologist and assistant professor of medicine at Washington University school of medicine and acting board member of the Lupus Foundation of America.
Williams explains that there may not be a cure for lupus, but researchers want all patients to have access to cutting-edge treatments.
“We also want the trial participants to match the population of people who have the condition,” says Williams.
It is only by testing these new treatments on people in clinical trials that many lives may be changed for the better. Because Black and Hispanic women get lupus two to three times more often, testing newer medicines on different groups of people is very important.
“These trials allow us to learn how these drugs show up differently in different people,” says Joy Buie, who serves as the vice president of research at the Lupus Foundation of America.
The Challenge Ahead
Lupus is a complex condition that can affect people very differently. For some, it causes heart or kidney problems. For others, it can lead to changes in the skin and joints. Or it can be a combination of all these things.
One challenge is a poorer prognosis for lupus in communities of color.
Death is four to six times higher in Hispanic and Asian American women with lupus. And African American patients are nine times more likely to develop kidney disease and need dialysis.
Considering a Lupus Clinical Trial?
Many people of color who have lupus face both internal and external barriers. This can make it difficult to consider going from a patient to a clinical trial participant.
Here are some things to consider when joining a clinical trial:
Where to find clinical trials. It’s a simple yet important question: How can you join a clinical trial if you aren’t asked?
Buie explains that there are many ways you can find out about clinical trials on your own, or your doctor might be able to tell you about one.
“The cancer community has made great strides with this,” remarks Buie. “They have several recruitment campaigns and dedicated resources to patient support and peer-to-peer support for people of color going through clinical trials.”
If you’re interested in joining a trial, ask your doctor, or look at trusted sites like the Lupus Foundation of America, the Lupus Research Alliance, or clinicaltrials.gov for current lupus trials.
Your level of care. Some patients might worry that joining in a trial will weaken their lupus treatment or that their lupus will "take a hit."
“I tell people, if anything, you get more attention when you’re in a clinical trial,” says Johnson. “You won’t be asked to stop your treatment, but you will have a lot more time with doctors than you normally do!”
Life’s challenges. After joining a clinical trial, it can be tough to get to the clinic for your treatments when you:
- Work full-time
- Have more than one job
- Take care of children or dependents
- Live far away from the test center
Many times, some of the key barriers for not raising your hand and joining a clinical trial may be because you're working multiple jobs or taking care of others.
“We’ve learned a lot about lupus through research over the past 10 years,” explains Buie. “We’ve learned that there is no one gene that causes lupus and that environmental factors like stress, which happens to often be high in minority groups, can impact lupus,” explains Buie.
Several organizations and drug companies are making strides to remove these barriers by operating clinical sites that are closer to patients' neighborhoods. Some trials may also offer money to help with the cost of transportation, gas, or childcare.
History of mistrust. We all have different belief systems and cultures. If your beliefs include mistrust for medical research, you may feel hesitant or uneasy about joining a clinical trial.
“It’s important for people running clinical trials to be inviting and to have some cultural humility or alignment,” says Williams.
Many organizations are working to promote today’s ethical guidelines that keep people of color safe when taking part in clinical trials. If you have questions or have worries, write them down and talk to your doctor about them.
Your doctor can help you understand more about the trial and point you in the right direction to get answers.
Shared Solutions: How Can Doctors Help?
Doctors and other health care professionals are working together to increase the diversity in clinical trials.
The Lupus Research Alliance has a program to increase the number of minority scientists in research through grant funding and mentoring. The funding may help many people feel more confident joining clinical trials when the researcher leading the trial looks more like them.
“Providers have a huge opportunity to expose patients of color to clinical trials,” says Buie. Efforts are underway to support doctors as they work to educate patients about clinical trials.
Just ask them. Many trial participants hear through their social networks and word-of-mouth.
“The No. 1 reason most people haven’t participated in a study is because they haven’t been asked,” explains Buie. “We need to make sure that everyone eligible is invited.”
Ban biases. Doctors and researchers may have implicit bias or beliefs that they are not aware of that can change how they interact with patients.
Implicit bias can lower the care certain patients get and can become a barrier to increasing diversity in lupus trials. Some studies revealed that certain doctors perceived Black patients or other ethnic groups as “less than willing” or “resistant” to cooperate during clinical trials.
Another barrier that may present as a bias is language. Some doctors may hesitate to recruit diverse patients due to language barriers.
If you feel that you are not being heard or that implicit bias is playing a role in your care, speak up. Talk with your doctor about your concerns and self-advocate. It’s a great way to make sure you get the best lupus care for yourself.
Pave the way. Joining a clinical trial can be scary if you’ve never done it. You may have unanswered questions such as:
- What are the rules?
- Can you drop out if you want to or need to?
- Will you be able to ask questions along the way?
In addition to these questions, you may also have practical challenges like transportation or language barriers that add extra layers to the issue.
Write your questions down and talk with your doctor to get more information.
“It can be very scary for people going through the process of a trial for the first time, and we in the field need to make sure what’s foreign to them isn’t so intimidating,” explains Williams.
Joining a Trial: Clinical Improvements
Once a person of color has joined a trial, the work of inclusion doesn’t stop there. It’s the reason Johnson has worked diligently as a volunteer for the Patient Advocate for Lupus Studies (PALS) program.
The goals of the PALS program is to:
Increase awareness. Be aware that lupus research needs more diverse participants for clinical trials. And ask questions to learn about the trial’s risks and benefits if you decide to join.
Increase participation. The more lupus patients that participate in clinical trials, the better the research will be to improve your lupus treatments and help everyone living with lupus.
Increase diversity. Clinical trials test if a medicine safely helps improve your lupus symptoms. Lupus clinical trials should should include different types of lupus participants.
“I hear people say all the time, ‘I want to do it, I just can’t,'” Johnson says. “We try to show people how they can.”
You just might be the next piece of the puzzle toward a brighter future for those living with lupus.
Show Sources
Photo Credit: DigitalVision/Getty Images
SOURCES:
Hetlena Johnson, 48, patient lupus advocate; instructional designer, Columbia, SC.
American Cancer Society: “Types and Phases of Clinical Trials.”
Joy Buie, PhD, registered nurse; vice president of research, Lupus Foundation of America, Charleston, SC.
Jessica Williams, MD, MPH, rheumatologist; assistant professor of medicine, Washington University school of medicine, St. Louis, MI; board member, Lupus Foundation of America.
Lupus Foundation of America: “Advancing Health Equity in Lupus,” “Lupus Clinical Trials: Increasing Diversity.”
National Public Radio (NPR): “Troubling History in Medical Research Still Fresh for Black Americans.”
Harvard School of Medicine: “Embracing Diversity: The Imperative for Inclusive Clinical Trials.
Lupus Research Alliance: “Bolstering Diversity to Accelerate Research and Systemic Change,” “Patient Advocates for Lupus Studies (PALS) Program.”
