We chat to Professor Julie Gralow, the founder of the Women’s Empowerment Cancer Advocacy Network (WE CAN).
Prof Julie Gralow is the Director of Breast Medical Oncology at Seattle Cancer Care Alliance and a professor in the Division of Medical Oncology at the University of Washington. She is also a member of the Clinical Research Division of the Fred Hutchinson Cancer Research Center.
1. How and when did WE CAN come about?
Technically, I use the date of 2003 for starting WE CAN. But my international work started in 1997. I was invited to serve as a consultant to a breast cancer assistance project in Ukraine.
The aim of the four-year project was to help implement change in sustainable ways. We observed that there was no communication between the patients, nurses and doctors. Patients were asking “I have cancer? Don’t I?” and they were being told “No”. Even though they were in a hospital labelled ‘Cancer Hospital’ and in a chemotherapy ward. The doctor explained that if they told patients they have cancer, they would have no hope.
We were sensitive to this but found it necessary to set up a project with guided discussion around diagnosis and treatment. One patient bravely told her story of her doctor telling her that she just had a bad chest infection and that is why they needed to remove her breasts. This discussion then gradually spearheaded open communication between doctors, nurses and patients.
By the final year, education and communication handouts were compiled for the nurses and doctors to give to patients. This in turn taught them the dialogue of how to communicate with patients about cancer.
By 2001, these patients had formed support groups, called the Amazonka, in more than half of their states.
First official meeting
Once the project ended, I told them I would keep in touch and visited them every year. Then in 2003, I was visiting the Baltic countries with The Centre of Women and Democracy. I decided to invite support groups from the former Soviet Union, including the Amazonka, and got their travel costs sponsored and we met in Lithuania.
We had about eight countries represented and they told each other what they were doing. I saw this as hopeful and that is how it all started. Though, I didn’t call it WE CAN then. Since then, every two years we have had an Eastern Europe/Central Asia meeting.
2. How did the WE CAN Africa meetings start?
In 2010, I travelled to Uganda and met women from Uganda Women’s Cancer Support Organisation (UWOCASO). I was so impressed. They then asked if they could do a version of what Eastern Europe/Central Asia had. I agreed but said that they would have to drive it.
In 2013, we had the first Africa summit and the advocates requested that it be held annually. It was a big hit and more African countries joined. And, now we are currently in our sixth year.
3. What are your highlights from the Africa meetings?
It’s incredible to see the growth of these groups. When we first started, problems and obstacles were presented but now solutions and sharing of ideas are presented. These support groups are now part of the solution. The doctors are phoning them and asking for help.
Back then Uganda’s facilities were in disrepair but now they have a beautiful in-patient facility and are building two more just for cancer. The Fred Hutch, USAID and the Uganda government spilt the cost of an out-patient and research centre. Totally state-of-the-art and UWOCASO got involved in the planning of that. To the point where Gertrude Nakigudde, CEO of UWOCASO, got elected on the board of the Uganda Cancer Institute just this year, because UWOCASO is so valuable to the hospital, cancer centre and patients. So, I am very proud of seeing that.
Then we got another African representative on the American Society of Clinical Oncology Clinical committee for resource-stratified guidelines. This committee stratifies a basic level of care for breast or cervical cancer that everyone should have. No matter how poor a country is, or how resource-constrained. Being on this committee, has helped these advocates understand that they can’t be protesting for Herceptin to be given, if they don’t have the correct testing for HER2 breast cancer.
Another great memory is when UWOCASO started their own patient-focused magazine, Surviving Cancer, and shared this project. Then the Zambian Cancer Society took the idea, put a twist on it and started their own magazine, Nthano Zathu – Breaking the silence on cancer. So, they learn from each other.
4. What are the differences in treatment and awareness in USA and SA?
I would say USA is 15 to 20 years ahead of SA. We also went through an era when we didn’t speak about breast cancer. But then two of our First Ladies, Betty Ford and Nancy Reagan, got breast cancer. They made it public. In some way, that kick-started the breast cancer movement. They were confident, saying we’re going to be fine. This brought about the dialogue of awareness of early detection, and empowered women.
The USA also experiences problems of access to care and over-crowding but we’ve figured out ways to cover people and spread out the over-crowding.
But we are far from perfect. We do have people who live rurally – far away from access to care – and people who can’t afford treatment.
Though, I have a lot of hope because now cancer is a global health focus and on the international agenda. We, the higher resource countries, must not only invest in research for our own growth but need to implement what we already know in the lower resource countries.
Together we can.