Drs. Edith Perez, MD and Lori Pierce, MD discuss the importance of health equity, and the work SU2C and ASCO are doing to increase diversity in cancer research and treatment.
“Everyone has the right to be healthy and is entitled to high-quality care,” Dr. Lori Pierce, President of the American Society of Clinical Oncology (ASCO), exclaims during SU2C’s most recent Facebook Live event discussing the importance of health equity. “Health equity is a simple concept, but it’s become complicated, and there are barriers that need to be addressed and eliminated.”
During the Facebook Live event, SU2C Health Equity Committee Chair, Dr. Edith Perez, and Dr. Pierce engage in an in-depth discussion on the importance of health equity, and SU2C and ASCO’s commitment to improving access to care and long-term survival rates for underrepresented populations.
Dr. Perez says that now more than ever, we must put words into action when it comes to health equity in both cancer research and treatment. For decades, patients of color have been at an increased risk for certain cancers and carry the highest mortality rates and shortest survival rates for most cancers. Yet, only 4% of clinical trial participants are Black, and 5% are Hispanic according to FDA data.
One way SU2C is committed to improving cancer treatment for underrepresented populations is by bringing together the brightest scientific minds from diverse fields through the new SU2C Health Equity Breakthrough Team. This team will be selected and receive funding in early 2021, and will focus on new approaches to address health disparities in cancer care and prevention, and help increase diversity in clinical trial participation. Additionally, SU2C continues to collaborate with organizations like ASCO, Black Women’s Health Imperative, and Friends of Cancer Research to build awareness about the importance of health equity and diverse clinical trial participation.
As SU2C and ASCO remain committed to prioritizing diversity and inclusion across research and awareness initiatives, we hope to continue these critical conversations to inspire action and ensure that all patients facing cancer benefit equally in both research and treatment.
Watch the Facebook Live discussion addressing health equity in cancer research here.
As a 4th grader, one of Elizabeth Jaffee’s favorite books was the biography of Marie Curie, the legendary Nobel prize winning physicist, chemist and pioneer in the study of radiation. Though it may have been an unusual choice for such a youngster, Jaffee’s childhood fascination with Curie (“she’s probably the mother of radiation oncology”) was a sign of things to come.
“I just loved science,” says Jaffee, “and it got me thinking about how science and medicine have such huge implications in life. I also had an uncle who died of lung cancer, so I became fascinated by cancer. I thought ‘why do people die of cancer, what is this?’”
Those early questions ultimately led Jaffee to get a medical degree from New York Medical College, and a medical residency at Presbyterian-University Hospital in Pittsburgh, PA. Today, Jaffee is one of the top immunologists in the country. She’s the Deputy Director of The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, in addition to being on the scientific advisory council for the Cancer Research Institute, chief medical advisor for the Lustgarten Foundation, and a SU2C Dream Team Leader as well as a member of the SU2C Health Equity Committee
“My whole life, I just wanted to be a doctor,” she says.
Elizabeth’s fascination with immunology was triggered early in her college days in the late 1970s, when virology had first become a hot topic in medical circles. “It was just a fascinating time in biomedical progress,” she remembers, “and it made me realize the immune system is so powerful, and now we’ve got a better understanding of it through understanding virology.”
She adds: “In those days, I first started making the connection that if the immune system can fight infection, why can’t it help fight cancer? That’s when I started getting interested, I was fascinated by the whole field.”
That fascination fuels her through long days in the cancer research buildings at Johns Hopkins, overseeing clinical trials, consulting with patients, and relishing her role as Team Leader for the SU2C-Lustgarten Foundation Pancreatic Cancer Dream Team.
“Working with the Dream Team has been unbelievably wonderful in so many ways,” says Jaffee. “I’ve developed multiple collaborations with some of the smartest people around the country. It’s been a wonderful experience personally, scientifically, and career-wise, and I really thank Stand Up for the whole concept they brought forward. There’s no other mechanism that has the ability to provide this kind of funding to support top-level multi-investigative, multi-level research.”
The current progress being made in cancer research has Jaffee excited and optimistic about the future. “Researchers are on the verge of converting cancers that in the past have not responded to treatment, such as pancreatic or brain cancers, from deadly cancers into chronic diseases,” she says.
“Giving people back their quality of life and longevity of life. That’s huge.”
To nurture her own quality of life, Elizabeth unwinds and rejuvenates by hiking, reading (non-fiction and fiction, especially detective stories) and spending time with her blue-eyes cockapoo, Frank Sinatra (“He’s my buddy.”). She stays in shape with another passion, indoor cycling. “I try to get on my Pelaton every day, it keeps my brain going, you get to think as you’re cycling.”
When Elizabeth White’s mother passed away from ovarian cancer in 2006, it changed the entire course of her young life. Though just a junior in college at the time, Elizabeth dedicated herself to cancer advocacy, and worked for various ovarian cancer associations over the forthcoming years. But in 2017, cancer rocked her life yet again.
White had just become the new executive director of the Michigan Ovarian Cancer Alliance, and she was tasked with promoting the then-new MAGENTA (Making GENetic Testing Accessible) study — a clinical trial conducted by the Ovarian Cancer Dream Team co-funded by the Ovarian Cancer Research Alliance and National Ovarian Cancer Coalition.
When she learned about the ease of this ground-breaking research, Elizabeth knew the time had some to do something that had been in the back of her mind for years: Get genetic testing for cancer risk mutations.
“If it weren’t for the ease of this testing, I probably still wouldn’t have done it,” she says. “I knew the stats, I knew my mom died from it and I still didn’t make the time for me. But this made it so easy, why wouldn’t you get tested?”
After filling out the online questionnaire, Elizabeth talked to a genetic counselor, was mailed the saliva kit provided by Color Genomics, and returned the test by standard mail. No in-person counseling or on-site testing appointments required.
But despite her mother’s cancer history, Elizabeth was still shocked when he got the results: She had the BRCA 2 genetic mutation, and with it a 75 percent chance of developing breast cancer and a 20 percent chance of developing ovarian cancer. With taking care of her husband and young daughter in mind, Elizabeth knew what she had to do next.
She ultimately opted to have a double mastectomy, and she’ll have her fallopian tubes and ovaries removed in the near future. Through it all, she’s learned the power and purpose of self-care and the immense value of being proactive with her health.
“I’m just so much more appreciative and grateful, this study has changed my life,” she says. “It also makes me so appreciative of science, knowing I could do this, and it makes you look at different aspects of your life. If I’m not taking care of myself, maybe I won’t be there for my daughter, for those important life milestones. It makes you slow down.”
Today, Elizabeth has taken her own advice and continues to prioritize her self-care. She has stepped away from full-time work in cancer advocacy and is enjoying her new career as a meeting planner, though she makes time every week to do consulting work with the Ovarian Cancer Research Alliance.
“It was tough decision for me,” she says, “working in the cancer world was my way to help my mom, but self-care has made me more appreciative of my health and my knowledge.”
“If you don’t take care of yourself, you can’t help anyone else.”
Stand Up To Cancer (SU2C) is deeply saddened by the recent events in this country and we stand in solidarity with the countless Americans who are bravely and peacefully standing up to longstanding and pervasive racial inequality. A nation founded on the concept of shared values can and must do better.
Inequality is felt across the broadest spectrum of the human experience, including in the realm of health and healthcare. In recent months we have seen how COVID-19 disproportionately impacts communities of color, and black Americans in particular. What many may not realize is that this same inequality also exists in the way patients of color are at increased risk for certain cancers and how limited their access often is to prevention, diagnosis, treatment, and care.
Last year, Stand Up To Cancer launched our Health Equity Initiative that has set a precedent for increasing diverse participation in cancer clinical trials. This effort addresses the underrepresentation of people of color in the development and testing process for new cancer treatments. Diversity in clinical trials is important to ensure that all cancer patients benefit from these research efforts.
Stand Up To Cancer is rooted in the belief that we are all stronger when we stand together. Through collaboration, our scientific community continues to make incredible progress that is saving more lives. At SU2C, we are committed – through our Health Equity Initiative – to addressing the racial inequality that many cancer patients face. We will continue to prioritize diversity and inclusion across our research and awareness programs as part of our effort to make good on that commitment, so that one day, everyone has the same prospect of becoming a long-term survivor.
“Now is the time everyone should be willing to accept help if it means keeping yourself safe.” – Ghecemy Lopez, two-time cancer survivor.
1. How has facing cancer helped you deal with everything happening in the world right now?
Facing cancer inspired me to become a cancer research advocate focused on closing the health gap for patients in underrepresented communities. As a survivor, I’m used to the unknown and adapting to a new normal. I’m using that experience to help my patients and community adapt and stay safe as well.
2. What is your advice to anyone impacted by cancer right now?
I have a lot of patients still in treatment or high risk for COVID-19 right now so I’ve been checking in on them and offering to help where I can. My advice is to focus on milestones instead of days, find reliable health guidelines, and don’t be afraid to ask for help if you need it. Now is the time when everyone should be willing to accept help if your health could be at risk.
3. What are some of the barriers your patients are facing right now?
Currently, there are a lot of disparities in the information on COVID-19 that is being presented in Spanish vs. English. Many people in my community aren’t getting a full picture of what’s going on. I’m also helping navigate support services that may be available to those out of work or at home.
4. Why is diversity in clinical trials so important for COVID-19 and cancer research?
The standard of care for any virus or disease comes from clinical trials. We’re seeing this firsthand with COVID-19 as researchers are hard at work finding a way to combat this through clinical trials. The more diverse the patient population is during these trials, the better researchers will understand how a larger population will respond to treatment once it’s approved and on the market. The same is true for cancer clinical trials. It’s how we will continue to improve patient outcomes and ultimately save lives.
5. Who do you Stand Up for?
There are many people that aren’t able to stay home right now, and some of these people are cancer survivors who are risking their health for all of us. The doctors, nurses, pharmacists, grocery store clerks, delivery services and so many others are standing up so that we can get through this. It is my hope that together, we can change the status quo and equally Stand Up for one another in the future.
“Knowing that Dom has already faced colon cancer makes me wary of how being exposed to COVID-19 could impact his health.” – Catherine Mazzullo, wife and caregiver
1. What are you doing to stay safe right now?
We’re doing great and staying safe at home. My husband Dominic is a stage four colon cancer survivor, and this situation is nothing like we’ve ever seen before. We’ve tried to move any medical appointments we can to telehealth and I’ve been doing the grocery shopping. We’ll remain cautious until we know it’s safe to go out in public again.
2. What is the hardest part about being a caregiver to someone who may be immunocompromised?
Dominic and I have been married for almost 40 years. He’s my everything, so I feel extremely responsible for his care. Sometimes that means making sure we do what’s best for his health even when it’s not easy to get through. I always tell him, “What happens to you, happens to me,” and I know he feels the same. We’re in this together.
3. What advice would you have for a loved one caring for someone who is newly diagnosed?
Find your inner strength to do what’s right by your loved one and do it kindly. As a caregiver, you have the tendency to want to put your needs aside, but you have to take care of yourself too and lean on others for support when you need it.
4. What gives you hope?
I look at what these genius researchers have done for cancer patients up to this point and I’m in awe. I will always be wary of Dom’s cancer returning, but I feel comforted knowing there is research that continues making advances, improving patient outcomes, and saving lives.
“I’m taking things I learned facing cancer to help support others who are struggling right now.” – Katherine Stuart, currently in treatment for HER2-positive breast cancer.
1. Has COVID-19 impacted your treatment plan?
Thankfully my immune system is in really good shape as I continue to go in for treatment. My infusion center is small, and they are working on implementing all the precautionary guidelines to keep us all as safe as possible. I’ve also moved my appointments with my oncologist to teleconference for now.
2. How has facing cancer helped you deal with everything happening in the world right now?
It’s definitely made me more resilient. For me, it really comes down to focusing on what I can control and staying informed about what’s going on from reliable sources. I have rituals in place to give me a sense of routine, and I try to find a little bit of joy in every day.
3. How are you staying connected to others while staying home?
I’ve been cooking a lot and dropping off food for others in need. I’ve also had some wonderful phone conversations with friends I haven’t spoken to in years, along with daily phone check-ins with my close friends. I’ve also been able to take what I’ve learned facing cancer and help people in my circle deal with their own fear and anxiety as we all struggle with what’s going on right now.
4. What gives you hope?
It’s scary to think that my health could be impacted by the actions of a stranger, so I’m encouraged when I see people following guidelines and social distancing. I’m also filled with hope and gratitude for the healthcare workers. They are going to war for all of us right now and their courage is unbelievable.
“The challenge for me as a cancer patient, is that my husband is a frontline healthcare worker.” – Michelle Mallin, currently in treatment for a rare metastatic sarcoma.
1. What are you doing to protect yourself right now?
I’ve been on lockdown, closely following the guidelines for people at high-risk for COVID-19; which include only going out for necessary doctor’s appointments and limiting public interaction.
2. What’s the hardest part of being married to someone on the front lines of COVID-19?
The stress of having to be hypervigilant about taking precautionary measures because I’m immunocompromised. I miss things about my husband people often take for granted, we haven’t shared a hug or kiss in over a month.
3. What is your advice to others facing cancer right now?
Focus on your immediate health needs, find support where you can, and follow recommendations for keeping yourself and your loved ones safe and healthy.
4. Why is it important for everyone to follow social distancing guidelines right now?
Surreal is the only word I can come up with to describe what’s going on right now, but social distancing can ultimately help save lives.
“After all the time I’ve spent facing cancer, I feel like I’m an expert at social distancing. I understand why it’s so important.” – Vanessa Delle Monache, a two-time cancer survivor from Ontario.
1. How has facing cancer given you a unique perspective on the coronavirus pandemic?
Having been through treatment twice now, I’m fairly used to social distancing. I had to be careful not to get sick in between treatments and I also didn’t feel well most of the time, so I stayed home and practiced social distancing a lot. It forced me to learn how to be happy at home and find ways to focus on the positives.
2. Are you concerned about your COVID-19 risk?
When it comes to my health, I’m not taking any chances. It’s not worth it. My body has been through a lot and is still continuing to heal. I know that my immune system is compromised so I’m staying home and following protective guidelines.
3. How are you taking care of yourself at home?
I’m focusing on what I have instead of what I don’t. Which means, I’m exercising, spending time with my husband, staying connected to family and friends virtually, and continuing to share my story on my blog.
4. Who do you Stand Up for?
I Stand Up for anyone who is facing cancer right now and everyone that’s felt the impacts of this disease. I can’t imagine having to go through treatment alone or having a treatment plan delayed because of COVID-19. I hope that we can all Stand Up To Cancer right now by staying in the comfort of our own homes. I know that if we do that now, we can all be together again soon.
Dave Latham, an employee at Stand Up To Cancer who is currently in treatment for metastatic cancer, says he has a lot to be thankful for, even amid the current COVID-19 pandemic.
1. Are you concerned about your COVID-19 risk?
Fortunately, my white blood cell count is within the normal range so I don’t have the complications associated with being immunosuppressed so many of my fellow patients have right now. That being said, I’m not sure how my body would respond to the virus after all I’ve been through.
2. Has your treatment plan changed at all?
It hasn’t changed yet, but it may as things continue to progress. It’s a team effort between the patient and their health care team to prioritize treatment that needs to happen now and weighing the COVID-19 risk. I’m working with my health care team to minimize my trips to the medical plaza where my treatment and scans are done.
3. How are you doing at home?
I’m focusing on the things I can control — like taking this opportunity to get proper rest, eating healthy, and getting exercise on my indoor bike. My goal is to log 100 miles a week. I’m fortunate during this pandemic to keep working from home and thankful for the ability to video chat with friends and family to stay connected.
4. What gives you hope?
There are no words to describe the gratitude I have for all the health care providers who are working long hours to save lives right now. Heroic is a vast understatement to describe what they have done for me and continue to do for others. People staying home, staying positive and reducing the risk of COVID-19 for others give me hope. We will get through this together.