Debra Madden is happy to speak at length about her role as a patient advocate. She is well educated on her subject, thoughtful, and passionate as she discusses the honor of representing the voices of patients, as a member of numerous regional and national panels addressing cancer research. The Newtown resident is a two-time survivor of cancer, and since her first diagnosis at the age of 22 in 1987, she has pursued a goal of making medical information accessible and understandable to patients.
Ms Madden has most recently been selected to take part in the Drug Information Association (DIA) Patient Advocate Fellowship Program, in Boston, June 23 through 27. She is one of six patient advocates who will share their stories, allowing researchers, academics, clinicians, and others in attendance at the DIA program to put a face to people affected by decisions made in funding grants and promoting new treatments.
She previously has served on a US Food and Drug Administration panel as a patient representative, on the Patient-Centered Outcomes Research Institute’s Advisory Panel on Assessment of Diagnosis, Prevention, and Treatment, and as a panelist with the Oncologic Drugs Advisory Committee, as well as having served as a grants reviewer for the US Department of Defense Breast Cancer Research Program. She has been a patient representative for several ongoing initiatives with the Clinical Trials Transformation Initiative, and considers herself an advocate for advancing research to find better treatment for cancers and one day, a cure.
The DIA program is one begun in 2011, said Ms Madden, “to bring in the voice of the patient.”
It is an opportunity, as are the many other conferences she has attended, to collaborate with those conducting research and those who are policymakers, she said. “That’s why I was so interested in participating.”
In her role as a FDA representative, she was invited to apply for the DIA Program this year. “It’s a wonderful opportunity to find out what is going on [in research],” said Ms Madden. “I had heard about DIA from others, and had read about last year’s advocates and was impressed by their passion. It is a wonderful chance to represent Ann’s Place, located here in Danbury, and it’s important to me to keep up with the volumes of information,” she said.
Ms Madden has worked full-time for the past ten years as the health information technology project manager and clinical applications systems analyst for Associated Neurologists in Danbury. Previous to that, she freelanced as a medical writer. She continues to write information for patients for various health organizations, such as the National Breast Cancer Coalition website. The majority of her free time is devoted to advocacy and assisting newly diagnosed cancer patients.
As an advocate for cancer patients, her goal is to provide current information in a manner that is understandable. It is a commitment that comes from the personal experiences that have shaped her life.
Racing For Answers
Newly graduated from college in 1987, Ms Madden was diagnosed with stage 3 Hodgkin’s lymphoma. It was a completely unexpected diagnosis and one that sent her racing for answers. Always curious for information, particularly about events personally affecting her, Ms Madden did what research she could in the pre-Internet era, and was horrified to read that her diagnosis was listed as “uniformly fatal.”
“It was frightening information,” she said. “It was one of those moments in life that divides time for you.” But realizing that the data she had was somewhat dated, she determined to get through her treatment “and then make sure that current, comprehensive, and understandable information was available to patients.” It was a decision that put her on the path to becoming a medical writer, and to becoming an advocate for cancer patients.
Treatment with radiation was the only viable treatment option in 1987 for Ms Madden. “Right now, there is more awareness of long-term effects of radiation. I do remember my oncologist going over a list of possible later side effects with me,” she said. But she was young, and that future and any potential threat seemed far off.
“We were most concerned with making sure, because this was stage 3 and very serious, that there would be no recurrence of the Hodgkin’s. I think I felt that I had to do what I had to do then,” she said.
The Hodgkin’s lymphoma was kept at bay, but at a cost. When Ms Madden was in her 30s, she began to experience heart issues, and six years ago, she was diagnosed with stage 2 breast cancer, both possibly the side effects of her radiation treatments 20 years ago.
As she recovered from her bilateral mastectomy surgery, she picked up a newsletter, in which a breast cancer survivor was profiled. “She wanted to learn about the science of what had happened to her, and how she could truly make a difference. I was so inspired by this woman,” Ms Madden said. The woman was involved with Project LEAD, the National Breast Cancer Coalition’s science training program, and was a reviewer on the Department of Defense (DOD) Breast Cancer Research Program. Ms Madden determined once again to beat cancer and learn to make a difference.
“I became a peer mentor for Ann’s Place for newly diagnosed cancer patients, and I applied to Project LEAD and became a DOD reviewer. My acceptance to LEAD was a phenomenal experience,” she said. She is devoted to her work at Ann’s Place as a peer mentor. With her first diagnosis, there was nowhere for her to turn for support, she said. Finding Ann’s Place and experiencing that support after her breast surgery was a big part of her healing process, she said.
“I think I was an advocate as a 22-year-old, but I didn’t put that name to it,” said Ms Madden. “When you’re diagnosed with cancer as a young adult, it colors the rest of your life’s decisions to some extent. I wanted to take that, and try to positively affect others,” she said. But it was her second brush with cancer that really catapulted her into the arena of advocacy. “I wanted to be involved as an educated participant to bring forward patient perspective,” she said.
Making A Difference
It is through her work with panels and as a grants reviewer, as well, that she especially feels she makes a difference. As a panel member or grants reviewer, she sits with other survivors, academics, researchers, and clinicians as they collaborate on the best paths to finding better treatments and a cure for cancer. It is a chance to be involved in conversations with and advocate with other panelists. In grant reviewing, she said, there can be moments of triumph as well as disappointments.
“There are going to be grants that you feel very strongly should be funded, and they may or may not be funded, depending on how others feel. There are times, as an advocate, I want a particular grant supported. I can make a difference. Minds do change. I’ve brought forward concerns that researchers may not have thought of,” she said, and likewise, has had to look at others’ points of views on why or why not a grant should receive funding.
“What is most gratifying is getting to know so many scientists, researchers, and advocates. We learn so much from each other,” she said.
What is also gratifying about her work on panels, said Ms Madden, is seeing the young researchers who have dedicated their lives to finding answers. “I am so encouraged when I see grants coming from young researchers,” she said.
Over the years that she has taken part in conferences on cancer, there have been a number of success stories, particularly in the area of targeted drugs, Ms Madden said. “They are making profound differences,” she said. In particular, she pointed out the drug Herceptin, which targets the HER2 positive receptor.
“About 20 percent of breast cancers are HER2 positive. Herceptin made a big difference. Herceptin came to the market because, way back, the DOD funded a grant,” she said. HER2: The Making of Herceptin, A Revolutionary Treatment for Breast Cancer by Robert Bazell, tells what Ms Madden called “the remarkable story of challenges that came with a drug being developed and the difference it has made.”
While new medications have been approved, Ms Madden said that it is unfortunate that progress has been incremental, and some medications are only extending life by weeks or months.
“Yes, every day makes a difference, but there is not a cure yet for metastatic breast cancer. One of my biggest concerns as an advocate is that there is not a cure. People die of breast cancer every day, and a lot of folks don’t understand that estrogen receptor positive breast cancer can have recurrence years later,” she said. “Ultimately, there is not a cure, and we need a cure,” Ms Madden said.
She looks forward to participating in the 49th (DIA) Patient Advocate Fellowship Program next week. The challenge of this program, as it is with many conferences she has attended, will be in squeezing in the many educational sessions she wants to attend.
“I’m looking forward to the opportunity to meet the other patient advocate fellows. They are all amazing people. I’m also looking forward to serving on a number of different panel discussions and to have the chance to meet so many stakeholders doing such critical work,” said Ms Madden.
“Forming collaborations like that is so important, and my story is just one of many.”