By Albert H. Fulcher | Editor
In July 2017, Lilian A. Vanvieldt-Gray found out that she had breast cancer through a routine mammogram. She credits that early detection for saving her life. Born in South America, she moved to San Diego 10 years ago and made Downtown her home. She is married, has three children and three grandchildren. As the senior vice president at Alliant Insurance Services and practice leader for Alliant’s National Schools Practice Program, Vanvieldt-Gray said she has a large extended family and network of friends, citing her husband Douglas as her strongest supporter.
“We were sitting in a parking lot leaving a doctor’s office and I was pretty hysterical,” Vanvieldt-Gray said. “At the time, I didn’t know my diagnosis. I discovered my diagnosis in July in an airport in Panama and didn’t start treatment until September. There was a two-month period where you are testing, scans, meeting with doctors and radiologists, surgeons and plastic surgeons and it was such a process that I was overwhelmed. My husband looked on the internet and found Susan G. Komen San Diego, and I called them.”
While Komen’s financial assistance programs were not a top priority for Vanvieldt-Gray , the biggest benefit from the organization came in the form of an introduction to Race for the Cure and its community of survivors.
“At the time that the race occurred in 2017, I was two months into chemotherapy, starting to feel the effects, losing my hair and that event was a place where I was able to see lots of survivors. It gave me the strength to move on and to continue to fight,” she said. “Komen brought me into a community that showed me that I could survive and I could thrive.”
Vanvieldt-Gray underwent a double mastectomy, radiation, and chemotherapy with two drugs that were discovered through Komen-funded research. She said that she credits them with helping save her life and also discovered during the process that she has the BRCA2 gene, which predisposes her to developing breast cancer. She discovered the gene was passed to her through her father who also had prostate cancer, along with her grandfather and every one of her uncles with the exception of one. “Finding out that there is a link between that gene and what I had, if I had known that before, I probably would have had the mastectomy done before,” she said.
Through the process and working with Komen, Vanvieldt-Gray realized that access to health care, testing and treatment that she had is not readily available to everyone.
“I’ve been donating some of my time to get the message out,” she said. “What I found most disturbing is the rate [that women of color get cancer] is a little less than the general population, yet our mortality rates are considerably higher. Most often because we don’t have access to health care until later on in the process. Breast cancer is now very curable and it is a shame that people are dying because they don’t understand or just don’t know, and also because they are not aware of the resources available to them. There are lots of treatments and lots of things that are available. Women just have to know about it — and they need someone, sometimes, to advocate on their behalf.”
Dr. Siavash Jabbari, MD, radiation oncology director at Laurel Amtower Cancer Institute and Neuro-Oncology Center in Linda Vista, was Vanvieldt-Gray’s radiation doctor. Dr. Jabbari explained that there are a lot of people who live in lower-income communities who tend to be so disenfranchised with the health care system, that they don’t know where to look or what treatment options are even available to them.
“Those are the kind of people that organizations like Komen make a huge difference for. People getting the word out about what these people do is so important,” Jabbari said. “People don’t know. Lilian didn’t know that. She is an intelligent woman, the vice president in her company and she had no idea.”
Jabbari said that with the mortality rate in African-American women, a small part of it is biological, as certain types of cancers can be more aggressive for them.
“But a lot of it is access and how early they are diagnosed,” Jabbari said. “We know that most importantly, the determination on how better people do through treatment depends on how early they are diagnosed. African-American women and other disenfranchised people don’t know or don’t have the access to early diagnosis.”
Shaina Gross, Susan G. Komen San Diego president/CEO, said that 1 in 8 women will be diagnosed with breast cancer in their lifetime. In the African-American community, it is 1 in 9, so the incidence rate is actually less, but the mortality rate is 40% higher.
“This is due to many things — not getting screened regularly, not having a trusting relationship with their physicians, feeling uncomfortable bringing up questions or saying something doesn’t feel right,” Gross said. “We hear all these stories of people advocating for themselves and many African-American women say they don’t feel comfortable having that conversation. For treatment, African-American women’s compliance rate is half that of Caucasian women. Some of the reasons we have mentioned, but some of it was due to the fact that they had worse side effects from the pills, which we tie back to the clinical trials largely done on Caucasian white women. When you don’t have diverse populations participating in clinical trials, you don’t have the opportunity to test the drugs properly. So we are trying to push diversity into the clinical trials as well.”
Gross said that this is one of the things that Komen does for families. It also has other programs, including financial assistance, which help cancer patients and their families through many things — gas cards, food pantry access, grocery cards, even things like paying car registration so that patients can continue to drive to appointments.
“Those kinds of things that you can’t submit a claim to your insurance company for but could be the reason that you cannot complete your treatment,” Gross said. “You might not go to your appointments anymore or you might not be able to afford that medication because you are deciding between medication and groceries for your family this week. Financial concerns are the number one reason people don’t complete their treatment. So Komen can step in and help people in that way.”
Jabbari said the financial assistance gap filler is important for patients and families that don’t have that kind of support system.
“A lot of women with breast cancer need radiation,” Jabbari said. “Most women do. In this country, half the women that require radiation don’t get it. And it is simply because of transportation and resource logistics. In San Diego, in more urban areas, it is easier. The inner cities, it is not. But most of the countries in the world setting, those disenfranchised populations don’t have the ability to travel 50 or 100 miles a day. Komen does a great job. These resource needs can be overcome. Every day they make a difference for our patients.”
The annual More Than Pink Dinner is coming up on April 11 at the Hyatt Regency La Jolla Aventine. A fundraiser to provide services year round, Gross said that along with its Race for the Cure, it is a great opportunity to spread the word about Komen’s services.
“The next time someone says, ‘I just don’t know how I’m going to get through this,’ we will have 350 people in the room that can say, ‘Call Komen,’ and that we have the resources to be able to support them,” Gross said.
Locally, of the money Komen raises, 75% of that money stays in local programs, the financial assistance program, paying for MRIs, ultrasounds, and more. Twenty-five percent of the money goes to its national headquarters and that pool of money from all of its affiliates is invested into international research.
“We have several researchers here in San Diego who are Komen-funded scholars,” Gross said. “For the many years we’ve been doing that research, two of the drugs that Lilian were on were discovered through Komen research.
“We just had some research come out that estimates that one-third of all breast cancer deaths could be prevented without a single new discovery,” Gross continued. “That is getting screened early, getting into treatment early, having access to clinical trials, things that already exist. So Komen’s mission is to remove those barriers, because if we can eliminate one-third of all breast cancer deaths without a new drug, new treatment, new test, that is incredible. And that is all about removing barriers to give people access to the things that are already out there.”
Gross said in terms of the event, it’s going to be a really great evening.
“We are showcasing some of the local San Diego science and research that is happening,” Gross said. “During the cocktail hour, we have someone coming and demonstrating how hand-grip strength is related to the strength of your immune system and the likelihood of reoccurrence of breast cancer. We’ll have a microscope so you can see a breast cancer cell and a healthy cell. We’ll have an origami wall made up of notes that survivors have written, so you can kind of get a glimpse into the survivor journey.
“The event is educational in a very interactive way and then the program during dinner will feature Dr. Jabbari and Lilian telling their story with Marty Emerald, former broadcaster and breast cancer survivor herself,” Gross continued. “It is a fun event, but you will also leave learning something new. We are trying to have the feel of the event to be a little bit more celebratory. Come to this event and learn about the services we offer, be inspired, be educated and be a part of our community with people that have been a part of this journey in one way or another.”
— Albert Fulcher can be reached at firstname.lastname@example.org.