It’s happening in the States
40 years ago doctors in the Texas town of San Antonio organised a conference about breast cancer to educate local physicians.
This has grown in to the world’s biggest and most influential meeting on the subect, with top oncologists attending the annual event from all over the world.
What makes the symposium special is the presence of patient advocates, alongside scientists and clinicians.
In San Antonio, Patients are expected to ask questions. Patients sit on panels, contribute papers and weigh in on research priorities.
By speaking up, patients at the meeting have shifted the direction of breast cancer research. Some are alive, improbably, as a consequence of new treatments enabled and promoted by their advocacy. In recent years, advocates have steered attention toward metastatic disease.
Thanks to Tim Berners-Lee, Ada Lovelace, Alan Turing and all those other unpaid heroes, the wonders of the Internet have made many of us cyber-friends. for me,one such is Nancy Stordahl, editor of the blog Nancy’sPoint. She sent me some fascinating information about the last event at San Anton, and I totally agree with her when she says “Cancer Was Not a Gift & It Didn’t Make Me a Better Person”
I can vouch that patient participation works. When I was 15 I caught Polio. My Father was in the Navy, which meant as his daughter I was immediately sent to be treated at Stanmore, the top place; in those days the Forces were always given best treatment. Lucky enough to be under a brilliant surgeon who listened to me, I knew I wasn’t expected to walk again, but, understanding my body, I would suggest possible treatment to my surgeon; His attitude was “go for it, what have you got to lose”, and not only did I walk out of the hospital, but the way polio was treated changed.
But when I was treated for cancer, any ideas I put forward weren’t listened to; one Nurse, standing hands on hips, glared at me “YOU are ONLY a patient”. Boy, did she get a tirade from me, but it didn’t change the hospital’s attitude. When I went over to France to get better treatment, although they acknowledged it worked I was challenged by a group of staff on my return and told “you aren’t being supportive of the hospital” !!! Their attitude seemed to be ‘how dare I do something for myself?
Neuropathy wasn’t acknowledged here as a side effect for years – in a hospital that called itself “world class”. But I am glad to say that patient power has ensured that this hospital now has notices in Outpatients highlighting the symptoms. Time and again patients prove we know what’s needed, but we have difficulty in being listened to.
But in America at least, in the words of one doctor at this year’s San Antonio conference, “when I practiced oncology years ago, there was little concept of cancer-patient activism, apart from fundraising and helping spread official, doctor-approved recommendations. Since my personal breast cancer diagnosis, 16 years ago, cancer advocacy has changed dramatically”.
So let’s make 2019 the year WE get heard! We’re worth it!
For patient advocates, visiting San Antonio has become a December ritual. Delegates learn what’s happening in the field, network and exchange ideas, and often patient delegates can find themselves in the middle of a serious discussion, and being listened to.
Another delegate at this year’s gathering reported “For a growing number of patients living with metastatic breast cancer, learning has become a priority. As more clinical trials and new options for testing and treatment are becoming available, patients are educating themselves in the hope of saving themselves. And they are voicing their needs”.
In the past
The San Antonio symposium was one of the first medical conferences to include patient advocates. However, members of the local Alamo Breast Cancer Foundation recall the days when they weren’t invited to the sessions.
Sandi Sanford, 74, runs the advocacy program for the group, which she joined in 1994. “I was six months out from surgery and still had a couple of chemotherapy treatments to go,” she told me.
In 1996, she and other “Alamo” women staffed an information booth during the symposium, then held in a downtown Marriott ballroom. “There was no program for us,” Sanford told me. “We’d sneak into the sessions, stand in the back of the room and lean against the wall.”
In 1998, the Alamo Breast Cancer Foundation started a grants program for advocates to help them travel to the San Antonio meeting; it expanded.
Doctors attending the symposium value the patients’ participation. “There is a very clear and prominent role for patient advocates here at the meeting,” said Dr. Nikhil Wagle, a Harvard oncologist who leads the Metastatic Breast Cancer Project. At this year’s symposium, he gave a plenary talk on the genomic landscape of breast cancer.
“Over the last several years, I’ve seen advocacy increase in a very positive way,” Wagle told me. “Knowing that there are patients and advocates in the room makes presenters aware of their concerns; it affects what we say and what research we do.”
Speakers don’t dumb down the educational sessions for advocates. Far from it!
On Wednesday evening of this year’s symposium, I stopped by a “Hot Topic” session, where experts review the days’ scientific reports. Dr. Julie Gralow of Seattle was expounding in detail on atezolizumab, a PD-L1 antibody, before a room of engaged advocates. Later, they lined up at microphones and asked detailed questions about gene mutations, fibroblasts in breast tissue and contradictory clinical trial results.
Like doctors, patient advocates don’t always agree. In a lunchtime session with members of the Food and Drug Administration’s Oncology Center of Excellence, advocates raised concerns about the agency’s approval of drugs that don’t necessarily prolong survival. Some asked about the design of clinical trials. The agency’s breast cancer team, led by Dr. Tatiana Prowell, emphasized that the FDA wants to hear from patients with varied perspectives.
A personal highlight of the conference — because the benefits of patient advocacy were evident — was the annual Metastatic Breast Cancer Alliance dinner held at the historic Menger hotel, steps from the Alamo.
“If you went to the San Antonio Symposium in 2011, researchers had very little to say that was relevant to advanced breast cancer,” said Shirley Mertz. Previously, If you heard anything about metastatic cancer, it was on Saturday, after [most] people went home,” said Mertz. Now “the program is full of metastatic breast cancer!”
What’s happening in Europe?
One very positive force is Europa Donna, with members from every country in Europe and beyond. They talk directly with heads of Government, and I was lucky enough to be selected to represent Britain at their high-powered annual gathering. I say ‘lucky’, but it was a humbling experince to realise how far behind the rest of Europe we are in the United Kingdom.
Let’s hope that Britain Against Cancer conference, Macmillan, CRUK, Cancer Alliances, etc stop thinking that asking a cancer patient to stand up and talk about “My cancer journey” is good enough. When there is an invaluabe treasure chest of knowledge known to patients.
Let’s make 2019 the year patients get listend to – and we are consulted about content for cancer conference programmes.