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Real People, Real Stories

TLF_Clinical Trials_RPRS Graphic_LaTisha Weaver

LaTisha Weaver is a Clinical Budget and Contract Negotiator with a game plan

Author: Katherine Cornish

Looking forward in life, she’s started her own consulting business to support contract negotiation needs for clinical research with the goal to complete an ongoing nursing degree and become a clinical site owner in the near future. In her current role, she works with clinical trial sites such as hospitals and universities as a clinical trial is getting started to make sure that all parties agree on the details in the clinical trial agreements or “CTAs” that guide the trial site in their operation of the trial procedures. She also makes sure that all parties have the current protocol, the correct budget templates, and other key trial documents such as a letter of intent or a letter of indemnity.  

Like many people in their current positions, LaTisha moved in to her analyst role after life threw her a 180. As a parent, she had been laid off from her previous role and was able to get a new position with a central laboratory organization that provides lab services for clinical trials. “I was really good with Excel and numbers so I dove in,” she says. “I was able to get an understanding of what a clinical trial is after being there for a little while.” Over time, LaTisha had the opportunity to work with more and more clinical trial documents and to continue expanding her understanding of all of the processes that happen behind-the-scenes to make a clinical trial work. “The work orders for budgeting, the CTA for the scope of work… it was very intriguing,” shares LaTisha. After gaining oncology experience at Wilmot Cancer Center and Tufts Medical Center, she decided to take a big leap into building herself a foundation for a new future role as a site owner by becoming a licensed practical nurse (LPN). 

“You suffer through imposter syndrome and you have to learn to stop fighting with yourself and actually trust yourself and your instinct,”

While juggling her new responsibilities, she’s found strength and support in clinical research advocacy and through her wonderful colleagues at Black Women In Clinical Research. “You suffer through imposter syndrome and you have to learn to stop fighting with yourself and actually trust yourself and your instinct,” says LaTisha. “I don’t need the nursing degree [to become a site owner], but I fight daily to be able to sit at tables with highly distinguished professionals, people having their PhDs and physicians. Whether it’s traditional or not traditional, I sit at the table with them.” 

When asked about the drive to switch roles, LaTisha talks about wanting to make more of an impact and her passion for community engagement and education. “I want to first educate you on what’s going on. I want you to further understand the [condition] that you have and that you have options, options that other people haven’t already told you about… how a clinical trial may work for you,” she shares. She hones in on the importance of providing education to people in the communities – education about health conditions and about treatment options, not just about current trial opportunities. Empowering the community to feel confident in their understanding of their health condition and their options is important. Empowering someone to make informed decisions about their healthcare is what LaTisha aims for, and hopefully some of those decisions involve clinical trials. “People might have a feeling of not being heard,” she says, “I want to hear everything…. I want them to feel comfortable. I want them to know that we are here and that every voice will be heard.” Highlighting the need to get information into the community, “at the end of the day, it’s all about changing lives,” she says, “there are patients that can benefit from these studies.” 

LaTisha brings her clinical trial knowledge and healthcare understanding with her and shares it wherever she goes. As an active advocate engaged in her church community, she talks about supporting her fellow parishioners through their healthcare needs: “being a member in the church who has gone to doctor visits with people or being that church sister that they call when they want to talk because a physician didn’t have proper bedside manner or because they’re not understanding what their drug or treatment is,” she shares. Advocating for clinical research is a balance of taking in the concerns of the community, empowering others through education, and amplifying this process wherever possible. Transitioning into a site owner role will be an effective way to continue bringing this brand of active, engaged support into the community on an even greater level. 

TLF_Clinical Trials_RPRS Graphic_Allanda Christenson

Allanda Christenson wants to share just how important the power of advocacy – especially self-advocacy – can be.

Author: Katherine Cornish

Allanda starts off by sharing about her initial breast cancer experience. “I was diagnosed in August of 2021 with hormone-positive, HER2-negative breast cancer. I did all of the standard treatments but I was not informed about any clinical trials,” she says. “It was because of Tigerlily and other survivor groups that I even learned that clinical trials were an option for me…. I’m so grateful that I am a part of this community and that I got connected with these organizations to get this knowledge because I wouldn’t have otherwise.” While she had an excellent care team at Fred Hutchinson Cancer Center, she didn’t get any input when she had asked about clinical trial participation opportunities. Not one to wait for someone else to decide whether or not to share information, Allanda took charge. “I actually went searching for trials on my own,” she shares, “and I continue to.” Her search led her to the Eileen McGeever Breast Cancer Survivorship Program at University of Southern California’s Norris Comprehensive Cancer Center.  

“It was because of Tigerlily and other survivor groups that I even learned that clinical trials were an option for me…”

While we often think about clinical trials as a way to compare whether a potential new treatment is as good or better than other current treatments, there are a lot of other types of clinical trials available. The trial that Allanda is participating in is an observational study in which participants contribute to breast cancer research by sharing information about their experience as a cancer survivor and by providing occasional blood samples at a nearby laboratory location. The participant data that is gathered will help researchers understand the impact of stress, behavior, social factors, and diet on recurrence, and tracking and treating minimal residual disease. Participants can be located all over the U.S. and receive all of their materials by mail, which makes it an easy process. This study remains ongoing with a goal to enroll 1,000 women who have completed breast cancer treatment; for more information on participation, click here. 

Allanda highlights the importance of a strong and approachable study team, even in an observational trial like this one. “The study coordinators get you all set up with the paperwork…. The information was pretty clear about how you qualify, what you’re going to be doing, your rights, if they find something, everything you need to know. And if you have questions, there’s somebody that you can reach out to,” Allanda notes. As she shares, the study team is there to be a helpful resource throughout the whole study. Participants are encouraged to ask questions at any point, not just at the beginning when the study is being discussed for the first time. “The study coordinators, they’re there for you every step of the way for any questions or concerns. There’s a lot of educational material that you can talk about with the coordinator so you’ll understand your part.”  

When asked about what kind of insights she would share with other advocates, Allanda encourages others to get engaged and be an active participant in their healthcare decisions and to consider clinical trial participation. “We cannot make progress in the breast cancer realm or any other disease without research, without science, without people willing to say, ‘you know what? I’m in this fight.’” As a strong proponent for making sure that future generations have the benefits of more precise treatment options, she further remarks, “I just want to encourage everyone out there to get involved for the sake of everyone coming after us…. Let’s move the needle, and we can’t do that without participating in science and research.” 

Engagement and education to drive understanding of all of one’s healthcare options shouldn’t just be propelled on the patient side though; it should come from all areas of the healthcare team and healthcare system. Allanda highlights the importance of an established support network within the care team: “A patient should be assigned a patient navigator or a social worker, someone that the patient can build a relationship with. Someone that can help guide patients and their families from A to Z.” Putting the ‘care’ in the healthcare team is important, she observes. “I did most of my journey myself. My family works, my mom still works. I don’t have children or a spouse,” shares Allanda. Going through major health conditions and treatment decisions is always easier with a strong support network that can help act as a sounding board while thinking through the options and to provide any information that might be needed to fill in educational gaps. 

“I think more outreach, more education,” is the key to driving awareness, Allanda explains, “we need everybody up in this thing. Like what Tigerlily is doing, but even more organizations. Different organizations can let different people see themselves [in clinical research].” Allanda continues to talk about getting the message out and hopes to get digital and audio personalities on board: “I would love to see Black media, Black podcasters focus on important things like clinical trials and prostate health and voting,” she starts. “It’s going to take a lot of different kinds of approaches to start moving the needle. Get the message out there.” 

Allanda calls out the statistics around breast cancer as an impetus for change. “Black women are more likely to have aggressive and advanced stage breast cancer, and black women have the highest mortality rate of any U.S. racial or ethnic group. We have to improve these numbers, and the only way we can do that is to increase clinical trial participation and advocate for research funding.” She encourages everyone to put aside their perceptions and fears and to get involved in advocacy. “I was thinking well, I don’t have any special skills or training and my public speaking isn’t perfect. You know, those seeds of doubt that can be there? But just come as you are. Share your story. You can be your own advocate.”  

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Shakisha Davis

Shakisha Davis is an active Tigerlily Foundation ANGEL Advocate that wants to highlight her experiences with the power of advocacy – especially when it comes to advocating for one’s own health. As a clinical trial participant in multiple studies, she’s had a variety of different experiences. Shakisha credits Tigerlily’s clinical trial education during the ANGEL Advocate training with making her feel confident about her understanding of clinical trials and her comfort level around trial participation.

Author: Katherine Cornish

The first trial Shakisha participated in started off smoothly – she highlights her study healthcare team members as being knowledgeable and helpful in getting her set up as a study participant. “I had a really good nurse navigator, I had a really good team,” she notes. The trial option was initially presented to her by her doctor as a different approach to radiation treatment, one that was more precise and more targeted, which sounded like a great opportunity that wouldn’t require much burden beyond her standard treatment plan. “It wasn’t going to be anything extra,” she says, “I didn’t have to do much, it was just about the way the radiation was administered, that was the only difference. I thought, ‘yeah, I could do this.’” 

“It was going fine, it was all good. And then it wasn’t.”

Shakisha Davis, Tigerlily Foundation ANGEL Advocate

With only three of the 36 radiation treatments in the study remaining, Shakisha began experiencing some discomfort. Throughout a day, it started off as an itching sensation, but by the end, grew into a seriously uncomfortable situation. She was losing her skin in the areas that were irradiated, right around the band of her bra, all of the way around the front and back. “My skin came off. It was burning. I could barely put on a shirt,” she says. She relayed her concerns about these serious side effects to her study team, but they continued to ask her to complete her series of treatments. “It was one of the only times I felt like a number,” she relayed, “they seemed more focused on getting me through the treatments than how I was actually doing… it was like they forgot about me as the patient.” With only three treatments remaining and the study team being so persistent, she thought “maybe I can do it, I can just finish the study, it’s only three more treatments.” But after seeing the burning and skin loss worsen after another treatment, Shakisha needed to advocate for herself and her own well-being. “I stopped just before the end. That was the best decision I could have made for myself, that was me advocating for myself.” As a trial participant, it’s important to remember that participation is entirely voluntary. And as a patient, there’s nobody that knows your experiences better than yourself, so it’s up to you – as a patient and as a participant – to make the choices that are the best for you.

After learning more about clinical trials through Tigerlily, Shakisha is an active supporter of clinical trial participation even in spite of her initial experience. “I know I made the right decision, but now I fully grasp how important it is to finish a trial. I do wish I could have finished those last two radiation treatments because my information could have been used for a greater cause,” she shares. While Shakisha still prioritizes self-advocacy, she has a better understanding of the needs of clinical research. Highlighting how learning more has helped her to move forward, she says “now I’ve begun to understand what the study team was doing, they knew that my information could help a lot of people. I think they just lost sight of things in the moment, but I understand why they wanted me to still finish the treatments.” “If I were offered a trial today, I would definitely consider it,” she says.

“I’m big on helping the next person. If it can help my family, my friends, or even people I don’t know, I’m all for it,” Shakisha says. She understands how important it is to participate in clinical research in order to design better treatments, understand medical conditions more deeply, and to help build a better future of healthcare for coming generations. She considers trial participation as “doing her part” for the future. Sharing her story “gives me purpose, it gives me a purpose to that pain, even those unpleasant parts,” she says. Shakisha encourages others to learn more and think about trial participation too.

“Do your research, learn about it. Clinical trials are not just a way to do tests on someone, it’s how they learn more about medicine. Know that it serves a greater purpose and that you’re a part of that impact, you helped bring forth new discoveries.”

TLF_Clinical Trials_RPRS Graphic_Dr. Negrin

Dr. Lovie Negrin, APRN, FNP-C, AG ACNP

In her daily efforts, Dr. Negrin is a double board-certified clinical research nurse practitioner working in both acute care and family medicine. Having seen low participation from racial and ethnic minority communities compiled with a lack of diverse representation in medical staff overseeing clinical research efforts, she switched gears from an academic/institutional environment to open a community-focused clinical research site called Randomize Now.

Author: Katherine Cornish

Randomize Now is a medical research center near Atlanta, GA that specializes in hosting clinical trials that target racial and ethnic groups that are typically underrepresented in research participant populations. At Randomize Now, Dr. Negrin highlights that education, accessibility, and cultural competency are key drivers of their work in increasing clinical trial participation by underrepresented populations. As a site director, she oversees the clinical research staff at the site and supports trials as a sub-investigator or nurse practitioner.  

Sharing her thoughts on representation in clinical research, she notes how important it is for patients to “see someone who looks like them at the bedside.” “There is a lot of fear in the Black community when it comes to clinical research,” she says, “so for them to see someone who looks and sounds like them, who is going to advocate for them, who is going to say ‘these are the things we’ve done to make sure Tuskegee doesn’t happen again’ …that’s what gives me the passion behind what I’m doing.” Acknowledging previous wrongs in scientific research is important, but focusing on how the medical field has corrected the way it operates is most beneficial in helping patients break that barrier of fear. “I try to always take things from the angle of the patient,” she shares. 

“To see an (older) Black man or woman contact me and say ‘I want to know about your initiatives,’ it is just the most satisfying thing… they want to participate, they’re educating their families… it’s so important.”

Dr. Lovie Negrin, APRN, FNP-C, AG ACNP

Through her experience in clinical research, Dr. Negrin calls out that it’s overwhelming to try to solve every barrier for every underserved population and that it often isn’t effective to engage in sweeping attempts that might not be relevant or beneficial for everyone equally. “We’re not the only minority or underserved population,” she notes, “but the Black community is my niche… it’s my area of expertise… we all have to take a small part of this ocean.” Working together with other physicians who are actively engaged with other populations, she underlines the importance of working together to solve these broad challenges bit-by-bit.  

Dr. Negrin highlights the importance of outreach initiatives and community engagement in increasing trial participation by underserved or historically excluded populations. She shares that it’s particularly helpful to have a presence at events where other organizations that provide housing support, financial assistance, insurance services and similar aid mechanisms since these events often bring in a lot of attendees who fall into the category of underserved and underrepresented. Events like these also end up being a great way for her research site to meet and engage with other community organizations, often resulting in additional outreach partnerships and engagement opportunities.  

When asked what she finds most fulfilling about her role, Dr. Negrin highlights how rewarding it is for her to see older adult populations (i.e., over the age of 60 years), especially those in the Black community, ask about participating in clinical research. She also underscores the importance of intersectionality in underrepresented populations and how challenging it often can be to engage these individuals in clinical research. “To see an (older) Black man or woman contact me and say ‘I want to know about your initiatives,’ it is just the most satisfying thing… they want to participate, they’re educating their families… it’s so important,” she says.

TLF_Clinical Trials_RPRS Graphic_Syreeta Coleman

Syreeta Coleman

Syreeta Coleman, Tigerlily Foundation ANGEL advocate and clinical trial participant, has a message for our newsletter readers: “If you want to be part of the solution, get out there!”

Author: Katherine Cornish

 

Syreeta, who has worked in the healthcare industry for over 20 years supporting insurance processing and data analytics, has participated in several clinical trials. While she’s participated in women’s health studies in the past, Syreeta is currently enrolled in a breast cancer clinical trial. She notes that as part of the study, she gets to continue being on the same treatment that she was on prior to enrolling in the trial, so there aren’t any major changes to her life as a result of new treatment side effects. Syreeta also highlights that receiving extra care and additional testing or imaging opportunities is her favorite perk of trial participation – she’s been able to have more scans done as part of the trial assessments than she would have had without participation. Having a strong understanding of insurance processing, co-pays, and hospital processes, Syreeta shares how important the access to high-touch care can be for trial participants: “I was glad to be able to get a more thorough workup. Insurance doesn’t want to cover our PET scans – most survivors that I know have not had a PET scan because they can’t afford it. But this trial allowed me to get a PET scan. And I get assessment on all of my biomarkers every other month. That’s a big plus for me.”  

Syreeta’s physician reached out to her about the trial, knowing that she had an interest in participating in a study if the right one was available. While she acknowledges that not all people are asked and might need to do the asking themselves, she points out that physicians might not ask about trial participation because there simply aren’t any trials nearby that are currently enrolling or that their patient might qualify for. However, it’s up to the patient themselves to make sure that their physician knows they’re interested, even if there aren’t any ongoing trials at the moment. And if the patient doesn’t feel like the physician is listening, “you can always leave. If your doctor isn’t working for you, find a new doctor. That’s okay,” says Syreeta. And she highlights this in regards to trial participation as well. “If you’re in a clinical trial, you don’t have to stay there if it’s not beneficial for you and your life. Life happens, things change. But you won’t know until you take the chance. And that’s what we need to do, is to take the chance,” she says. 

“If you’re led to it, then follow through. You had the idea of it (participating), so do it. The idea of it can turn into you doing it, and that can help the next person and those that come after you.”  

Syreeta Coleman

She highlights being surrounded by healthcare colleagues as a big driver in making her feel comfortable and empowered in talking about and participating in clinical research. “Clinical trials might sound intimidating, but it’s just another way of saying research,” she says. “Everyone knows what research is, it’s just finding the answer to a question or finding the solution to a problem. You go on Google and look things up, that’s doing research.” Acknowledging the lack of representation in trials, Syreeta shares that she “wants to be the face of clinical research, the face that isn’t currently represented… there’s just not enough African American women or men that sign up for clinical trials because they’re afraid of the ‘what ifs’, but we won’t know if we don’t try it.” The fear of the unknown or lack of awareness on how clinical trials work is a big barrier to participation, Syreeta highlights, especially when patients don’t feel like anyone in clinical research looks like them — that’s what she wants to change. She highlights this as a driving factor for her in the way she advocates for others to think about clinical trial participation. “If  

you see a familiar face, you might think ‘oh, well she did it so I could do it too.’ We’re never going to be able to conquer anything if we just sit here. We have to get up, we have to do it.”  

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Christina Mackey, Keisha Stephney, and Faridah Thomas

Real Stories: Insights from Clinical Trial Participants

Author: Katherine Cornish

Tigerlily Foundation has partnered with GSK on the My Living Legacy campaign. This campaign drives awareness and education on clinical trials for communities across the U.S. and aims to normalize conversations about clinical trial participation for communities that are often under-represented in clinical trials. Through this campaign, we’ve highlighted the clinical trial participation stories of three of Tigerlily’s ANGEL advocates: Christina Mackey, Keisha Stephney, and Faridah Thomas. Read through the links below to learn more about each of their stories!  

Christina Mackey, a Houston, TX mother of two, was diagnosed with stage 3 triple-negative breast cancer at 33 years old after finding a lump in her breast and undergoing her very first mammogram. After many rounds of chemotherapy, her doctors at MD Anderson suggested that she participate in a clinical trial. After signing up and receiving treatment on the study, Christina’s cancer shrank by 97%. Christina notes that the clinical trial she participated in “saved her life” and finds sharing her experience and reaching others about clinical trials is “life-preserving work.” Learn more about Christina’s story in the article below:  

Black mom, 33, was diagnosed with aggressive breast cancer. A clinical trial ‘saved her life’  

At age 51, Bay Area resident Keisha Stephney was diagnosed with triple-negative breast cancer after her mammogram was delayed due to COVID-19. More than two years and 41 rounds of chemotherapy later, Keisha is still battling against breast cancer. She joined a clinical trial to find answers and wants to encourage more Black women to get involved in clinical research in order to make a difference in future treatments and patient outcomes. To read more about Keisha’s experience, read the story below: 

My Living Legacy: Bridging the Gap in Clinical Trial Representation  

Just after her 40th birthday, Atlanta local Faridah Thomas learned she had triple-negative breast cancer. But instead of starting immediate treatment, it took her months to find a doctor she felt took her experience as a Black woman into account when developing a treatment plan. Even after finding the right doctor, clinical trials for breast cancer were never offered as an option. Faridah later participated in a clinical trial for a different condition and now spend time actively sharing about her experiences as a trial participant to encourage others to take charge of their health and consider joining a clinical trial. You can learn more about Faridah’s experiences as a clinical trial participant below:  

Conyers breast cancer survivor encourages Black women to ask about cancer research studies 

Author: Katherine Cornish

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Beatrice Doe

Real Stories: Insights from Clinical Researchers

Beatrice Doe, Clinical ResearcHER and Project Specialist
Author: Katherine Cornish

Beatrice Doe is currently a Project Specialist who supports clinical trials for a Contract Research Organization (CRO). CROs are often the partners to pharma companies when it comes to running the clinical trials – team members on the CRO side like Beatrice make sure all of the data is accurate and complete, they make sure the site team members like the nurses and doctors are following all of the right steps, and they tackle a lot of the administrative and process work that keeps a clinical trial up and running smoothly.

Prior to her role as a project specialist, she worked as a clinical research coordinator (CRC) at a pediatric institute. While a CRC, Beatrice was able to support a variety of different clinical trials, including cardiology studies and COVID-19 studies. As part of her duties, she spent a lot of time reviewing patient charts to identify potential patients who would be eligible to benefit from joining a clinical trial based on their medical conditions. Working on patient recruitment, Beatrice had the chance to reach out to families and introduce them to clinical research, sharing information about clinical trials and specific studies that she felt that someone would be able to participate in. As a CRC, Beatrice notes that her favorite aspect of the role was to “make sure that our patients were receiving the best care,” whether this was through face-to-face contact, phone calls, or even check-in text messages. Highlighting how important the personal touch was, she mentioned how much patients “appreciated that our site was really focused on them.”

When asked about what she finds the most fulfilling about her current and previous roles in clinical research, Beatrice highlights her time working on patient recruitment efforts. “I enjoy watching the families light up at the fact that maybe what you (the research team) are doing could help their child or even the general public. They like feeling like they’re making a difference.” In particular, she calls out how important it is to get families comfortable with clinical trial participation – and then how it’s doubly rewarding to be able to help break down their fears and see them excited to participate in a trial. One approach to drive and support trial participation by marginalized populations is to ensure that the patients and the local community are able to connect with and see themselves within the study team. “I enjoy the aspect of seeing people who initially did not want to join a study but then were more open to joining after seeing the study team and realizing there were people that looked like them leading the study,” she mentions.

Beatrice also provides a shout out to patient advocates. “I think the most important thing [in encouraging trial participation from populations that are not well represented in clinical research] is patient advocacy. Patient advocates are very important in the community, they provide information to people about all of their different options they might not have known about. Patient advocates can align with community leaders, churches, and others to really connect and support the communities; they do so much for accessibility to care too.” As a former site study team member, she continues to highlight the importance of study teams getting out there and engaging with the communities they serve. “Being out there, showing our faces, explaining about the services they’re able to provide, explaining clinical trials to everyone” is key in building that connection between communities and clinical research, Beatrice notes. Study team member have the responsibility to “provide the knowledge for people in communities to make their own decisions.” “It’s not about telling them what to do,” she says, “it’s about providing the information and the support and the care.”

Beatrice highlights how important it is to consider participation: “Every person that joins can change the future; maybe it isn’t always your particular situation, but you’re able to help the future population… and that’s a beautiful thing.”

Author: Katherine Cornish

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Jazmin Barnes

Real People: Insights from Clinical Researchers

Author: Katherine Cornish

Jazmin Barnes is a Clinical Research Associate (CRA) that helps support clinical trials in North Carolina and its surrounding regions. As a CRA, she reviews documentation for clinical trials at many different trial sites, which are typically hospitals and academic universities. Jazmin is responsible for making sure that sites and site staff are fully trained and conducting the clinical trial according to the processes and procedures in the study protocol to ensure patient safety at every step. One of the highlights of clinical trial participation, she notes, is that patients receive especially good care from their physicians. Currently, she is supporting pediatric trials which she notes can be both heartbreaking and incredibly rewarding at the same time.  

When discussing how clinical researchers can help encourage the communities they serve to raise their hand for participation, Jazmin notes the importance of having site staff and study teams engage directly in the community to build that foundational relationship of trust. She cautions against transactional relationships and suggests that sites should focus on continuing to establish and maintain long-term partnerships. “All it takes is one person to have a good experience, to say ‘I participated in a clinical trial and I loved it,’ and someone will ask and then more will ask and eventually people will start signing up,” she says. “Speaking with a leader in the community to identify the best way to foster that community relationship” is a key starting point, Jazmin shares. “Finding the right thing to work with the community to make the partnership fun and educational is just the beginning,” she says.

As a CRA, Jazmin shares that the most fulfilling aspect of her role in clinical research is the opportunity to be part of the process in which a new treatment comes to life, saving those that receive it in the future. “Hopefully one day, the drug we’re currently studying will be on the market for someone to get. There are so many diagnoses that we haven’t found a treatment for, so hopefully one of these treatments will be the one that save’s someone’s life,” she says. Jazmin also highlights that “it’s important to have everyone participate because we can’t expect to have a new drug come out that’s going to benefit us if they don’t have our information. Also, the representation – it’s always good to know that your population is included, that Sponsors are looking at everyone as a whole to see how new medicine affects us all, not just one population. We’re all going to need something sometime.”

When thinking about key information to share with potential clinical trial participants, Jazmin wants readers to know that “you’re not a guinea pig, there are thousands of people involved in monitoring trials to make sure they’re safe. And there are so many people in the clinical research community beyond your doctor or care team who are happy to answer any of your questions. If you do decide to participate, know that you’re saving someone else’s life in addition to saving your own. That drug could save your life, your spouse’s life, your grandparent’s life, your child’s life; that’s why it’s important for all of us to show up.”

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Camille Lewis

From Reluctant Participant to Clinical Trial Advocate

Camille Lewis had every reason not to join a clinical trial

Author: Anita Brazill 

She will live to celebrate a milestone birthday this summer. About four years ago, the likelihood of reaching age 50 felt uncertain to Camille Lewis. On a bright spring day, heading into Mother’s Day weekend and a baseball tournament with her younger son Mateo, Camille Lewis was informed by phone, while at work, that she had Breast Cancer. The tumor was malignant and aggressive. Treatment needed to begin immediately to improve her odds of survival. She was stunned and that evening lay sleepless and alone in her bed.

Just a few days later, in a consultation with what Camille now calls her “breast cancer dream team,” she was taken methodically through all that needed to be done in hopes of arresting what she visualized as a slender but wild dandelion weed coursing through her otherwise strong body. Also on that day, as a complicated treatment plan was outlined for her at the Denver breast cancer center, she recalls, right there and then, she was asked to participate in a clinical trial. “Do I have to?” she asked.

The oncologist told Camille that she did not have to participate. But she also believed Camille’s participation in the trial could complement the treatment plan they had just laid out. The team believed she met the criteria for enrollment. That trial, referred to as the I-SPY 2 trial, was going to evaluate clinical opportunities to improve outcomes in high-risk breast cancer patients. It would evaluate new treatments that had potential to shrink the type of tumor that was in her breast, increase chances of survival, and perhaps have fewer side effects than other established treatments.

Still, Camille was not liking the idea. “All I wanted was to get going with my treatment plan,” she says. “The complicated packet of information I was given, which described the trial, looked like a lot of work to go through. I was already overwhelmed and apprehensive.”

Her thoughts were running in many directions; the cancer, the logistics of treatment, money, time off work for treatment, transportation, her mortality, her children. A single parent who had only recently lost her own mother, Camille had practical matters to address in a hurry. She did not believe she could also be available to be in a clinical trial program nor manage the obligations that might come with it. She was unsure she had a support network to do so, even if she would participate, and she had no acquaintance with anyone from her world that had ever been a patient in a clinical trial.

Despite those very reasonable objections, and even with time and resource constraints in her life, Camille told herself she should be open-minded. “If I said NO in that moment when I was asked, I would not have known what I was rejecting,” she said. I needed to educate myself – but reading that huge clinical trial packet wasn’t the best way for me to learn.”  She told her oncologist she would think about it and get back to her soon.

Another Opinion Needed

“I reached out to one of the parents on my son Mateo’s baseball team, an OB/GYN physician. “I knew her through the team, so I wanted to hear what she had to say. After that, I also had another separate talk with a member of my new breast cancer care team, who broke down clinical trial participation in everyday language.”  Those two conversations, combined with prayers, brought her to a decision to raise her hand to participate.

Camille says she began to understand that joining a clinical trial meant she would get not only the current and best “standard of care” treatment, but that she would be provided extra clinical attention, including more diagnostics and imaging. Those tests could provide additional insight to her care team as she progressed through treatment. “I decided I had to take every opportunity to save my own life.”

Now, a few months from her 50th birthday, and with her treatment and the clinical trial in the background, Camille is back with new vigor and a lot of verve. Enthusiastic, engaging and endearing, she says, “My paradigm shifted. I learned a lot and I am glad I did. I want to educate other women like me to open themselves up to the possibility of enrolling in clinical trials.”

She pauses, “Let me put it another way; there are many ways to impact and create change in breast cancer care, inequality, and injustice. Tigerlily advocates undeniably have something to offer by being part of important changes. Ignorance will kill us if we refuse to participate in clinical trials.

Research is Formalized Curiosity

“Yes, we have been overlooked historically; yes, there are real reasons to be skeptical; but I know that nothing changes if nothing changes.” She remembered that quote from the spiritual leader Mahatma Gandhi: Be the change you wish to see in the world. And she couples it with another quote by one of her favorite authors, Zora Neale Hurston, who says, Research is formalized curiosity. It is poking and prying with a purpose.

Camille quickly knit herself into the vibrant breast cancer community of survivors and thrivers. Like individual squares in a comforting bed quilt, she is one unique piece of a big and diverse tapestry. It was through her own curiosity that Camille found Tigerlily Foundation. Her cancer care team had advised her to be cautious about online searches for information on breast cancer, knowing it could create additional fears if the information found was not from vetted sources. “What caught my eye was the word tiger,” says Camille. “It’s not what you expect to see when searching breast cancer topics, but it reminded me of the movie Rocky. I related to that movie and to the song, “Eye of the Tiger.” Accidental as that imagery was, Tigerlily Foundation went on to make such a big difference in my life.”

“I just told myself, ‘Nothing changes if nothing changes.’”   Camille Lewis

Tigerlily: “My Brave Space”

“The people at Tigerlily and the education it offered gave me a brave space,” she says. “It was a game-changer for the trajectory of my survivorship plan.” Camille is emphatic about the value of the comprehensive training program she was invited to take. She graduated from the 6-week breast cancer education program and is now one of Tigerlily’s 370 ANGEL Advocates.

Camille will gladly connect with anyone interested, anywhere in the world. She teaches women about breast health, and the importance of accessing health care, and about survivorship. She does that work in-person or online.

Just as she was influenced to consider a clinical trial in 2019, after reaching out and talking to a woman in her community who she trusted, Camille now does the same. “Other women can connect with my story and with me. They trust me.”  It feels so good she says, to know that she has helped Black and Brown women choose to join clinical trials.

 

Don’t Wait to Be Asked About Clinical Trials

One element of the education she reinforces is to teach and motivate BIPOC women to ask which clinical trials may be available to them or to loved ones diagnosed with breast cancer. “Don’t wait to be asked. There is often unconscious bias – they may believe you are not interested, or they may have a bias against even asking BIPOC women. Perhaps some doctors will just plain forget to ask. Whatever the case, it is OUR job to advocate for ourselves. I implore you to ask about clinical trials that might be right for your type of breast cancer – so ASK and keep asking.

“Breast cancer changed my life,” Camille says, “Tigerlily and the ANGEL program helped me embrace a transformation from being a patient in the throes of urgent and complicated decision-making to becoming a purpose-driven and empowered survivor. I wish my mom were here to see me now; she would be happy both to see me on the other side of cancer, and to watch the work I am doing.”