Interest in clinical trials is high among members of the LGBTQ community and people of color, though participation rates are "alarmingly low," according to a survey from the PAN Foundation that was released last week.
Universities, medical researchers, and pharmaceutical companies hold clinical trials to test new treatments, including for HIV/AIDS drugs. Generally, thousands of people are recruited for these trials.
The Opening Doors to Clinical Trials Survey found 86% of LGBTQs and 83% of non-whites had a somewhat or extremely positive perception of clinical trials, and 61% of all respondents said they were very or somewhat interested in participating in one. Sixty-five percent of LGBTQIA+ respondents, and 58% of people of color, expressed interest in participation.
However, the No. 1 resource for those who've sought out information about clinical trials was their own online research (45%), as only 22% of people of color and 20% of LGBTQ respondents talked to their health care providers about the possibility of participating in a clinical trial.
"I wouldn't say there's any one gatekeeper," Amy Niles, a straight ally who is the chief mission officer of the PAN Foundation, told the Bay Area Reporter in a phone interview, adding that there are many reasons why someone might not be included in a clinical trial.
Barriers to access include lack of awareness a trial is taking place, lack of communication from a health care provider, lack of trust in health professionals, and trial requirements, Niles said.
The PAN Foundation, based in Washington, D.C., is a leading charitable foundation and health care advocacy organization, according to its website.
As the B.A.R. previously reported, companies are working on lifting outdated restrictions keeping HIV-positive individuals out of clinical trials. But "it's not just conditions" that keep people out of these trials, Niles said.
Take the case of Tony Newberne, a Black gay man who told the B.A.R. that he wants to participate in clinical trials but was ineligible for two that were initially suggested to him.
"The first was in 2013 when I was first diagnosed with multiple melanoma. My oncologist said there was a clinical trial but he'd prescribed me too much dexamethasone," he recalled. "The second time was recent, March or April of this year. There was a clinical trial and it was phase three and my doctor said 'I think you would be great.'"
Gilead Sciences Inc., which has a lot of clinical trials, outlined the process. Clinical trials are conducted in four phases: safety and dosage; effectiveness and side effects; effectiveness and adverse reactions; and safety and effectiveness. Once a phase three trial is completed the treatment may be approved by regulatory agencies. Phase four trials continue after a treatment is approved.
Newberne said the recent trial he was interested in was one related to CAR T-cell therapy, a cancer treatment that uses genetically-modified immune system cells to kill cancer cells. Newberne couldn't participate because of the regimen of days he was on and off treatment.
"I'm gay and Black, so I'm part of that population that has been underrepresented," he said. "But, again, I have a strong intention to participate and I just want to be allowed to be."
To help overcome these obstacles, Niles told the B.A.R. that the PAN Foundation has launched a ComPANion Access Navigator as part of its Opening Doors to Clinical Trials national initiative. The foundation hopes the navigator will be less cumbersome than clinicaltrials.gov in linking patients with trials they may want to participate in.
Its survey found that communication and information may be the biggest barriers to people participating in clinical trials. In the survey, 43% of people of color stated that no one ever asked them to participate in a clinical trial. That figure was 53% for LGBTQIA+ respondents, according to the survey.
Clinicaltrials.gov didn't return a request for comment for this report.
"Unless we have trials that are truly diverse we won't know which trials will work," Niles said.
Newberne said that he has hope the foundation will help.
"The PAN Foundation is absolutely excellent and I say that because when I met the PAN Foundation two years ago, as well as Kevin [Hagan], the CEO ... I had never been part of a foundation where from the moment I began it felt like they were family," he said.
The PAN Foundation survey was conducted online by the Harris Poll. It was completed by 4,492 people aged 18 and older who reside in the United States from July 1-19, in English and Spanish. The confidence interval was 95%.
LGBTQ Agenda is an online column that appears weekly. Got a tip on queer news? Contact John Ferrannini at [email protected]
Updated, 10/15/24: This article has corrected the location of the PAN Foundation - it's based in Washington, D.C.
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