In a third-grade classroom exercise, Patrick Kelly wrote that he wanted to become a scientist when he grew up. With that interest came an attention to the people that science can help. "I've just always been super-curious about human nature, our interactions with one another," he said.
In college, Kelly pivoted to public health, which is no doubt a science deeply interested in the interactions people have with one another. After working in a series of labs in Philadelphia, Kelly joined the Brown University School of Public Health as a doctoral student, where he researches how social and structural influences, like laws, affect people's medical decision-making, with a focus on people who use drugs, LGBTQ communities, and the intersection between the two. "So all things from stigma to sociopolitical climate," he explained. "How people navigate the healthcare environment and how we're able to provide healthcare resources to people."
Kelly had applied for a competitive grant from the National Institutes of Health to externally fund his doctoral research. The grant, called the F31 Diversity Predoctoral Fellowship, is intended to help launch the careers of early scientists. There are two pathways students can take, either applying to the regular F31 or the Diversity F31, which supports PhD students from underrepresented backgrounds in science. As a student from a socioeconomically disadvantaged background, Kelly qualified for the Diversity F31.
On April 21, the NIH announced it would no longer fund any program or research at an institution that has DEI programs or boycotts Israeli companies, using research funding as political leverage. Under these new rules, the NIH can terminate any existing financial assistance for grantees that violate these terms. In May, Kelly and other Diversity F31 recipients learned their fellowship was terminated, stripping funding from a community exclusively comprised of underrepresented students in science.
I spoke with Kelly about his research improving the health of people who use drugs, the power of healthcare shaped by collaboration with communities, and how the new administration's cuts threaten people impacted by the opioid crisis.
This interview has been edited and condensed for clarity.
Can you tell me a little bit about your path towards working in public health?
I started out as a cellular [and] molecular neuroscience major. The spring semester of my sophomore year—this was actually after the 2016 election—I was feeling like I wanted to be more engaged and I wanted to do something that would afford me the opportunity to get out of the organic chemistry lab [or] the microbio lab. I liked those hard sciences, but I felt almost a call to action, where I wanted to be responsive to this feeling that I was having that I needed to get involved. I needed to be with community, be with folks that needed support. Ultimately, that led to me changing my major to public health.
We take public health for granted, even though it's infused into so much of our life. I never really even had a word to understand all these systems that were around us, until [a guidance counselor] put that on my radar. I looked at the courses, and it just was absolutely what I was looking for. There was a class on U.S. health policy. There was coursework on infectious disease and the control of the spread of infectious disease, substance use in the 21st century ... It feels super relevant and timely, and it's really speaking to me in a way that the hard sciences weren't.
I got started in [the] Health Disparities Research Lab at Temple [University], which was focused primarily on disparities in access to kidney transplant. I was working with really rich qualitative data with folks, primarily Latina women, who were sharing their thoughts and perceptions around registering to be an organ donor, a living kidney donor, and it just was really kind of eye-opening. ...That lab in particular does a lot of community-based, participatory research. ... It felt so rewarding to co-create something with community that felt like it was in support of a larger purpose—in that case, trying to increase the number of registered organ donors.
I joined the Temple University Risk Communication Lab, where I started to be exposed to how we can use commercial marketing techniques to promote the uptake of health protective behaviors or biomedical interventions. A classic example is the use of pre-exposure prophylaxis, or PrEP, to reduce the chance of new HIV infection.
There was a particular project that I worked on ... where I continued to encounter folks who would share with me that they were excluded from the healthcare system ... because of the severe stigma that they had faced when they went to access care. A classic example are people who use drugs, who are encountered with hostility going to the emergency department. Another classic example are trans folks who articulate a very clear need and desire, for some folks, who desire medical transition—not all trans people do, of course—but who face such barriers to getting that care and constantly [have] to advocate for themselves to access this care. Through a series of conversations with folks in the community, I came to see how folks were practicing extra-medical care to meet their medical needs.
Because it's not a familiar term for most people, can you explain what [extra-medical care] means and perhaps give some examples of what that looks like?
It's [makeshift medicine], essentially practices or resources—ways in which folks can collectivize to meet their healthcare needs outside of the formalized medical system.
A good example is wound care among folks who inject drugs, or even now, the wounds are appearing among folks who don't inject drugs. We often hear from folks that it's much easier to self-treat these wounds than it is to go and get formalized care because of the ways in which they're met with hostility because of their drug use. Another historical example is pumping parties, particularly for trans women in the late 20th century ... There were underground markets where folks could go and see paraprofessionals to have body contouring achieved through injectables, with silicon and different stuff like that. Sometimes, though, these procedures can have unintended harmful consequences. My master's thesis focused on these procedures, and I met with a handful of trans women who were unfortunately disfigured from these procedures and then couldn't find surgeons that would correct what happened to them. They were left with pretty severe dysphoria as a result, which is just so unfortunate when you think about that they received the procedures to address dysphoria that they were experiencing.
These are all instances of community collectivizing to ensure that their healthcare needs can be met under the threat of oppression. And not just the threat, but the actual codified instances of oppression.
I understand that you were working on xylazine. Could you talk about the scope of the doctoral research you are working on that was affected by this grant cancelation?
Xylazine is a veterinary medicine that's a sedative that has been used to adulterate the unregulated fentanyl supply. It is associated with serious health harms to people who are exposed. Most notably, it can cause pretty severe necrotic skin wounds among people who inject drugs, and even among those who are not injecting. These wounds can be quite debilitating, and in some cases have led to amputation, disfigurement, and death.
Xylazine and fentanyl combinations have changed the way that overdose presents. Because xylazine is a sedative, but not an opioid, naloxone isn't effective at reversing the effects of xylazine. What this has meant is that while Narcan should still be used to respond to these overdose events, because it's effective against fentanyl, it's changed the way in which we have to be much more cognizant of respiratory depression and provide rescue breaths and monitoring as folks are sedated from ... the drugs that they use. Xylazine is a good example of how the drug supply changes under our nose.
Unfortunately, the media has sort of sensationalized xylazine as the "zombie drug." People walk around Philadelphia [and are described in the media] as looking like zombies, because they're quite literally sedated. [Xylazine] puts people out of it. What has happened with the emergence of xylazine is that it's infiltrated the drug supply so rapidly, starting primarily in Philadelphia and then up the Northeast Corridor, and now [has made] its way across all of the United States. We don't have good drug surveillance for it. Unfortunately, most of our data about xylazine comes from people who have fatally overdosed.
This leads me to the premise of my dissertation research, which has really two main aims. The first is interviewing providers of care to people who use drugs to understand emergent treatment practices for xylazine, and interviewing folks who use drugs to understand the ways that xylazine is impacting their health, to better understand their healthcare experiences, and the ways that they are collectivizing care to take care of themselves and their friends.
That leads me to the next main focus of the dissertation, which is the fact that there isn't a readily available point-of-care test in hospitals for xylazine. ... These hospitals actually aren't looking for xylazine, because they're just not equipped to test for xylazine in their in-house labs. So what this has meant is ... it's really prohibited us from developing cohort studies upon which to understand the impact of xylazine and to more readily link folks with treatment. So the premise of my dissertation is to use the qualitative data that I've collected and leverage electronic health records and the unstructured sections of the electronic health records, where providers chart how a patient presents, to create what's called an electronic health record phenotype that could, within a reasonable degree of certainty, identify if someone has been exposed to xylazine.
I understand that the new termination date is in August, which would be the end of your first year. How much progress did you make?
I was fortunate to have the support of an internal award at [the Brown University School of Public Health] that provided incentives for the participants in my research, to the folks who I actually interviewed, both the healthcare providers and the people [who use drugs].
[Compensating research participants] was my primary concern. I think about that a lot with just all the other pre-docs who've been affected by this. We make commitments to community, and when they pull funds out from under us, that is not only harmful, but damaging to our profession and dangerous. It's dangerous, especially if you're working with some sort of biomedical intervention.
As the termination came through, I literally was in the middle of data collection. I was like, I'm just going to have to really do my best to try to get this done in year one. ... I wanted to make sure that I showed up and spoke to folks. This is of concern in the community at the syringe services programs. People are seeing the effects of this adulterant on their clients, so they are eager to work with folks who care and want to do something about it. And so are the participants. I can tell you every participant I spoke with when that recorder is off and we're debriefing, they're just like, "Thank you for caring. Thank you for for wanting to do something about this. I'm losing my friends." They're just sitting with so much grief.
When we talk about what does the loss of this grant mean, it's ... invisibilizing populations. It's telling them, we're not going to focus on you anymore. We're not going to uplift your stories. You don't matter. It's really upsetting.
How did you learn about your grant's termination?
Pretty early on in the administration, I was, like many folks, pretty concerned about the messaging that we were seeing coming out that was essentially making it clear that they were going to be reviewing the scientific portfolio of NIH. To be honest with you, I wasn't quite sure about where my grant would stand. Because on one hand, it was funded through the diversity mechanism, which is intended to diversify the scientific workforce. ... But on the other hand, the content of my grant, the actual science and my training, isn't at all under this umbrella of what they are saying is DEI.
Secretary RFK Jr. has been very vocal about his interest in the opioid crisis and the overdose crisis. He's openly someone in recovery from heroin dependence, and he speaks quite often about how prioritized he would like HHS to be about the opioid crisis, and importantly, medications for opioid use disorder and treatment. ... The specific ways that he articulates that vision might differ from my own views, but I felt as though there was a clear focus on this as a priority for HHS and NIH specifically. I know that it continues to remain a very important priority to the National Institute on Drug Abuse. I also think that it's actually admirable for Secretary RFK Jr. to be open about his history. That is quite powerful to say that someone in recovery can hold an office like that. I think that that there's power in that.
I know for a fact that they eliminated a lot of work that is aligned with what the administration is interested in. ... Clearly, because the entire mechanism is gone, it seems as though it just was kind of a clean-slate sort of approach. Just cancel everything. That was quite shocking to me, and increases the workload, if you're getting rid of things that you actually would otherwise fund.
What has been jeopardized in terms of your status as a student and your affiliation with the university with this grant cancellation?
I've been fortunate that the Brown School of Public Health, Brown University, my faculty advisors, have really stood by me and been supportive. That's just been great, to not only have the emotional support, but the support to logistically think through things. ... This is my first grant as PI, and part of the program, the F31 program, is to help prepare promising scientists for a lifelong career as principal investigators. This is really my first time navigating all of this. And boy, has it been a learning curve, because not a lot of people navigate a termination at all in their careers, let alone for their first grant.
In terms of the direct impact, it's been honestly taking me away from the proposed work. I'm having to spend so much time thinking about a game plan and a lot of waiting for further communications from NIH about what to do, what not to do, what paperwork to fill out and things like that. In terms of the appeal, there isn't much guidance from NIH.
Pre-doctoral students on these fellowships propose pretty large dissertations with the understanding that having this money protects their time, so they can work full-time on it, right? ... So if I suddenly have to think about working in a lab or TA-ing—of course, that's something I'm going to do to have the ability to have a salary, a stipend to live—but it'll be quite challenging to do that and also do a dissertation that I proposed with the then understanding that I'd be able to work on that full time.
Can you talk about what this grant cancellation means for the communities that you're working with?
Over the past year, we've made great progress in reducing the number of fatal overdose deaths. That's just one metric of the harms of the overdose crisis, but it's clearly one that we want to be reducing. We've reduced deaths, provisional data from CDC suggests, by almost 30 percent, which is really remarkable. There's working theories about why that might be, but some of the biggest [factors] is the fact that the work that we've been investing in over the past many, many years, from funding tremendous outreach efforts, from pouring naloxone into communities to expanding the access to naloxone so that it's [available over the counter], to increasing the availability of syringe services programs, to opening overdose prevention centers in New York City. Rhode Island just opened up our first state-sanctioned overdose prevention center. We have made such great progress in trying to actually do something to help people who've been impacted by this crisis.
Now is not the time when we should be scaling back this funding. We need to be doubling down on what we know works. We need to be investing in science that helps us understand what could be improved about what we're doing. We need to be funding our public health infrastructure that we know directly from the community is a life source. It's a life source. So when you hear that kind of success, that is something that is not only what you would want to invest in to preserve the health of a nation, but it's something that you would want to ... champion, and use to say, look at how we've risen to this challenge that we've been facing for decades. Look at what we're doing to continue to move the needle toward recovery from this crisis.
Do you have any fears or concerns for the research landscape of the United States, as these particular grants have been targeted?
When we do away with training programs in the U.S. to invest in [science, we lose] the best and the brightest, who oftentimes, come from communities that have been impacted [by what scientists study]. ... My family has been personally impacted by the opioid crisis, which in part motivates my desire to actually do something about this. There's many people who can say that same thing across all different domains of research. So I just think about what a loss of talent and resources this could mean for our development of a competitive scientific workforce.
I've seen these universities abroad are watching and listening. ... There's lots of talk about the brain drain. But I think that's happening right now, that there are people who are actively trying to think through, Where can I go to have a career? To do the work that is needed, that brings me personal satisfaction? And that doesn't feel like is somehow suddenly compromised and wrapped up in just this complex murkiness of in some cases: Is it legal to be asking these questions anymore? I think about trans health scholars in particular.
