Recognizing Research Professionals Who Participated in COVID-19 Trials
Democratizing Clinical Research
Scaling access and inclusion to clinical research is key to finding medications, therapies & treatments that work for all. Industry professionals discuss barriers to clinical trial participation and ways to address them.
About the Panelists
Moderator
Scott Schliebner,
SVP Scientific Affairs,
PRA Health Sciences
Panelist
Teneasha Washington,
PhD, MPH
Assistant Professor,
University of Alabama at Birmingham
School of Public Health
Department of Public Health
Panelist
Veer Mehta,
Founder & CEO,
Halo Health Systems
Panelist
Jennifer Fields, MPH
President,
The Hills Tandem
Straight Talk About Cancer, COVID-19 & Long-Hauler Syndrome
Medical professionals discuss COVID-19 and oncology research and COVID-19 survivors who are experiencing the long-hauler syndrome share their stories.
Medical Hero Story: Shanelle Gabriel, Lupus Advocate
When Gabriel was in college, she always felt tired and would wake up feeling stiff. She dismissed it as general soreness from working out with her dance team.
The Brooklyn-native Gabriel, then 21, went to her doctor, who told her she probably had sinus problems and encouraged her to take allergy medicine.
Diagnosis
A turning point came a month later when she noticed patches of hair missing. She went to a different doctor who asked her a series of questions, including about how tired she was and whether her hands changed colors when they got cold. After testing, Gabriel was diagnosed with lupus, an autoimmune disease.
At the time, there weren’t medications specifically designed to treat lupus. Instead, doctors had a blanket approach and prescribed a variety of medicines, including steroids, to treat symptoms, but nothing was specific to the illness.
“Nobody knew how much pain I was in,” said Gabriel, now 36, who describes lupus as, “a hidden disease.”
Many of the medicines had side effects, including increased risk for liver and kidney problems, as well as cataracts and glaucoma.
She still had flare ups that sent her to the hospital, including an inflammation of the membrane around her heart. It was so bad, she had to leave an internship and quit the dance team.
After graduating, Gabriel toured the country as a poet and singer. While in Montana for a performance, she suffered an episode that caused her to be hospitalized due to a lupus-related condition that causes blood clots.”
Clinical trials
When her doctor suggested trying a clinical trial for a new lupus treatment, Gabriel, who’s African American, balked. She was worried because, historically, people of color have been taken advantage of during medical trials.
She later found out the trial was a success and her doctor prescribed the approved drug. The treatment worked but it was demanding, as Gabriel needed to take a full day off from work to receive IV therapy.
Next, Gabriel decided to participate in the next clinical trial, which tested that approved medicine as a self-administered, weekly therapy.
For Gabriel, this drug helped make her symptoms more manageable allowing her to discontinue her use of steroids.
Stigma
While Gabriel was initially nervous about clinical trials, she’s glad she talked with her doctor and other medical professionals, and realized that clinical trials are essential for finding new therapies and cures.
“Due to a lack of participation by women of color in a lot of these trials, (researchers) were not able to actually track if it worked for us,” she said. “There’s only one way to find out if it works; somebody has to do it.
“I just felt like, ‘You know what? I’m fine with that, because there could be a really great benefit from it.’ And I did end up benefiting from it.”
Gabriel is on the patient advisory boards for The Center for Information and Study on Clinical Research Participation, a non-profit dedicated to educating and engaging the public and patients about clinical research.
She encourages patients with lupus and other diseases to consider clinical trials, which have many safeguards to minimize danger for participants. She recommends doing your own research, asking questions, and talking to your doctor about clinical trials.
She’s sharing her story and hopes to inspire others.
“It’s becoming a community of people that are advocating and I think there is hope for a cure,” Gabriel said.
Featured in the June 2020 Clinical Trials Supplement, USA Today
To search for medical conditions in a specific location visit our Search Clinical Trials page.
To stay informed about clinical trials, visit our Resources page.
Postpartum Depression (PPD) & Clinical Trials Part 1
Part 1 of a 2-part series. Medical professionals and patient advocates discuss their experiences with postpartum depression, one of the most common medical complications during and after pregnancy.
Webinar below.
Read the article brief here.
About the Panelists
Moderator
Kim Edwards,
Senior Manager, Health Communication Services, CISCRP
Panelist
Dr. Constance Guille,
Founder & Director,
Women’s Reproductive Behavioral Health Program, MUSC,
Assoc. Professor,
MUSC
Panelist
Dr. Jason James,
OB/GYN
Panelist
Heather Dopp,
Mom Ambassador,
2020 Mom
Speak Smart About Clinical Trials
If you join a clinical trial, you may want to share the news. But words are powerful, and can impact the study. This interactive infographic shares information and videos about clinical research and how to best communicate about it. Access it here.
Pediatric Perceptions & Insights on Clinical Trial Participation
In this November 2020 podcast, the results of a survey of 500 parents and children in the United States, conducted by CISCRP and commissioned by Parexel, are discussed. Key findings include determinants, motivations, barriers to clinical trial participation and issues surrounding diversity in clinical research. Annick de Bruin, Senior Director, Research Services, CISCRP, moderates.
CISCRP’s Patient Diversity Media Campaign Cited in ISMPP Article
The campaign is in English and Spanish.
CISCRP’s educational Patient Diversity Media Campaign was recently cited in an article in The MAP Newsletter, titled “Equity, Diversity, and Inclusion: Defining a Roadmap for Our Profession”.
Authored by Catherine Skobe, MPH, Pfizer, Angela Sykes, MA, MPhil, Pfizer, and Chris Winchester, DPhil, Oxford PharmaGenesis, the article discusses the importance of improving the outcomes for diverse populations in healthcare, building trust with patient and caregiver audiences, communicating scientific research clearly and making information accessible to all. Pfizer and Oxford Phamagenesis were among a number of companies that recently supported CISCRP’s Patient Diversity Media Campaign.
The MAP is a publication of ISMPP (International Society for Medical Publication Professionals).
CISCRP’s Journey to Better Health Project Honored with Citeline Awards “Medidata Clinical Parntership of the Year”
Award is Shared with Janssen, MedEvoke and Peer Plus
CISCRP is excited to share the Citeline Awards Medidata Clinical Partnership of the Year Award with Janssen, MedEvoke and Peer Plus for the Journey to Better Health, a mobile healthcare exhibit about clinical research that travelled to diverse communities across the United States. This innovative educational and recreational vehicle, equipped with interactive tools, healthcare information and relevant resources and data was staffed by knowledgeable experts and multi-lingual, CISCRP clinical research Ambassadors.
A variety of stations housed in the exhibit focused on:
- Study volunteers and their experiences
- Resources and take-aways for individuals interested in clinical research participation
- Questions about eligibility criteria and the informed consent process in order for individuals to make informed decisions about clinical research participation
- Potential risks and benefits
Stops included public schools, museums, libraries, community and senior centers, places of worship and free public health expos in Atlanta, Charlotte, Chicago, New York City, Newark and Long Island.
To view a video about the Journey to Better Health exhibit, click here. For additional educational resources about clinical research participation, visit CISCRP’s Education Center.
Medical Hero Story: Juana Espino, Motherhood & Cervical Cancer
Written by Melissa E. Daley, Communications & Marketing Manager | mdaley@ciscrp.org
Juana Espino, her husband and two children were all looking forward to the birth of her third child. Two weeks before her delivery date, Juana started spotting blood. Juana immediately made an appointment with her obstetrician. During the exam, the physician located a mass near her cervix and recommended a biopsy, after the baby’s birth. Juana’s c-section went well and her new daughter was healthy.
But Juana was not.
The results of the biopsy indicated that she had Stage 4 cervical cancer.
“From there, it was just a rollercoaster, at first,” recalled Juana. “I didn’t have health insurance. You always have a pap smear at the beginning of your pregnancy, and mine was normal. The cancer had really grown while I was pregnant, and the doctor was worried about it metastasizing.”
The incidence of cervical cancer complicating pregnancy is low; only about 1% – 3% of woman diagnosed with cervical cancer are pregnant or postpartum when they are diagnosed. (1)
After discussing several options of treatment, Juana’s obstetrician advised that she meet with Dr. Joseph A. Lucci, a board-certified gynecologic oncologist at The University of Texas Health Science Center at Houston (UT Health). Dr. Lucci was also the Principal Investigator of a clinical trial treating Stage 4 cervical cancer. Juana met with Dr. Lucci and learned more about the course of treatment that the trial would include: a hysterectomy, followed by 6 weeks of chemotherapy and radiation.
“The good thing is, I have a big family,” said Juana. “I talked about it with my husband and my 6 sisters went with me to talk with Dr. Lucci about the clinical trial. I am grateful that I had a big support system. I was truly blessed.”
Since Juana was the mother of a newborn, it was decided to delay chemotherapy and radiation for two months. This lead to another difficult decision.
“Because I was having radiation treatment, we decided that my mother would take care of our baby, to be on the safe side,” Juana recounted. (Patients receiving certain types of radiation treatment are advised to limit or avoid contact with children under the age of 18 and pregnant women. (2) “It was hard, to be honest, but I knew my mother would take good care of her. I did get to see the baby, of course, and when I did, I was really careful. I would dress in layers (because of the radiation) and hold her on a pillow, not directly.”
Juana’s sisters were encouraging when the effects of the radiation treatment became particularly severe during the last part of treatment. “I didn’t feel as sick during chemo as I did during the radiation,” Juana explained. “The radiation was really painful and my sisters kept telling me that I could do it.”
Aileen, Juana’s niece, was also instrumental in supporting her during treatment. “She postponed going to college, to be with me on this journey,” said Juana.
Juana was impressed with the care she received during the clinical trial. “I could call Carole Robazetti (the coordinator) in the middle of the night, and she’d be there. Dr. Lucci was also available at any time to discuss how I was feeling and what was happening,” said Juana. But Juana didn’t discuss one major impact that she experienced, until three years after the trial had concluded.
While participating on a CISCRP Patient Advisory Board, Juana listened to panelists describing the physical and emotional impacts of severe atrophic vaginitis, symptoms that she was experiencing, but never discussed with Dr. Lucci or Carole. (CISCRP Patient Advisory Boards solicit feedback and gather valuable insights directly from patients and their support network on a variety of critical clinical study related areas. Learn more here.
“I was afraid to speak up and after I heard the others share their stories, I decided to talk with Carole. She asked me why I hadn’t said anything before, and I just hadn’t felt comfortable.” Juana was prescribed medication that has improved the condition significantly.
The treatments Juana received in the clinical trial eradicated the cervical cancer. Juana and Carole became friends.
“I really wanted to give back somehow, and Carole told me about WOW, the Women Well Program,” said Juana. WOW was founded in 2018, under the umbrella of the Latattore Foundation and the University of Texas. WOW provides pap smears and mammograms at no cost to low-income/uninsured women through monthly community health fairs. Learn more about WOW at https://latattore.com/wow/.
“Members of the Hispanic community don’t always have health insurance, so WOW is helping to save peoples’ lives. I started as a volunteer and now I’m on staff,” said Juana.
Juana says she would participate in a clinical trial again, and that she would be more open to discussing related impacts. “We need to speak and let people know what’s happening,” Juana said.
When asked if she has any words of advice to individuals considering clinical trial participation, Juana advised the following.
“When you’re deciding about a clinical trial, read everything. Read every detail. Those little details will help you decide if you want to be part of it. And get a second opinion before you make your final decision.”
To search for medical conditions in a specific location visit our Search Clinical Trials page.
To stay informed about clinical trials, visit our Resources page.
Sources:
(1)https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6745864/#:~:text=The%20incidence%20of%20pregnancy%20complicated,the%2012%20months%20after%20delivery
(2) https://www.cancer.net/navigating-cancer-care/how-cancer-treated/radiation-therapy/understanding-radiation-therapy
