As we look back on 15 years of progress in the fight against bladder cancer, BCAN recently interviewed Diane Zipursky Quale, BCAN’s co-founder to get her perspectives on milestones that have occurred during that time. As her husband John’s disease worsened, they became dismayed and frightened to learn about the limited treatment options available and lack of research addressing the need for better treatments. In the spring of 2005, John and Diane decided to try to change the national conversation about bladder cancer, and the Bladder Cancer Advocacy Network or BCAN, was born.
What things stand out to you most over the last 15 years at BCAN?
Diane: I can confidently say that BCAN would not be where it is today without the countless volunteers and supporters we’ve had over the last 15 years. Patients, their families, friends and the medical community are truly what helped BCAN get started and keeps our community vibrant today.
As you look back, what do you reflect about most?
Diane: No anniversary date would be complete without remembering those who have lost their lives to bladder cancer, including my husband, John, and many friends who I met through BCAN. It is estimated that more than 250,000 people have died from this disease since 2005, and the impact on the lives lost as well as on those left behind cannot be quantified.
As BCAN moves forward, we know that our work will never be done until we have a multitude of treatments that are successful for patients and their families so no one has to experience this tremendous loss.
When you and John set up BCAN in 2005, what did you envision for the future?
Diane: Through our own personal experience and our research, we just knew that an organization like BCAN had to be established. At that time, we certainly did not have a 5, 10- or 15-year plan. We recognized the need to make every effort to raise the profile of bladder cancer.
We were determined to ensure that there would be more money and more people devoted to research and better treatments.
How has awareness improved since 2005?
Diane: It’s better. Bladder cancer’s profile, in terms of the attention that it receives from the research, biomedical and pharmaceutical communities, has increased. Public awareness has also improved, but we still have far too many people who learn about bladder cancer for the first time when they are diagnosed. That’s unacceptable.
BCAN has had a huge impact on awareness and focus at both the FDA and the National Cancer Institute, but rates of bladder cancer diagnosis and deaths have remained constant during that time, and that must change.
Given that the organization’s name is Bladder Cancer Advocacy Network, what has changed over the last 15 years in regard to bladder cancer advocacy?
Diane: When John and I got involved in the early 2000s, there was not a bladder cancer patient advocate voice. We founded BCAN as a small grassroots organization and I believe that we became much more effective when, as patients and families, we united to demand better treatments.
What would your 2020 self tell your 2005 self about co-founding an advocacy organization?
Diane: I would tell myself to continue to be flexible and adaptable and just keep going when there are challenges, financial and otherwise. Just keep going. I would not have done anything differently, though. I am so proud of what we have done and the community that we have created.
From the beginning, BCAN has maintained very good relationships with the medical community. Why?
Diane: When John and I were considering starting BCAN, the first person I spoke to about it was John’s urological surgeon, Dr. Mark Schoenberg. Dr. Schoenberg’s response was “You must do this and I will help make it happen.” So, our partnership with the medical community is an essential part of our foundation. The clinicians and researchers in the bladder cancer field—which in 2005 was much smaller than it is today—saw the need for a strong patient voice to raise the profile of the disease and to raise more funds, both private and public, to support bladder cancer research. Our Scientific Advisory Board (SAB) began in 2005 with 18 urologists, and today we have 70 professionals across the bladder cancer spectrum, including urologists, medical oncologists, radiation oncologists, research scientists, pathologists, and social scientists.
BCAN has encouraged and supported collaboration among all the parties dedicated to the study of bladder cancer. Medical research can sometimes be siloed and having those in the medical community share ideas about bladder cancer prevention, diagnosis, and treatments fostered new ways of thinking and novel approaches to fighting this disease.
I continue to be gratified and humbled by the support BCAN receives from the medical community to identify the best and most promising research that will provide the greatest opportunity to advance the understanding of bladder cancer. BCAN has invested nearly $5 million in research grants to experienced investigators with novel approaches and potential breakthrough ideas as well as to early career investigators to support transformational bladder cancer research.
BCAN’s scientific meeting, the Think Tank, grew from about 35 people in 2005 to more than 300 people in 2019. Why do you think this is?
Diane: I give credit to Dr. Mark Schoenberg and his vision of “thinking outside the box” and bringing people together
to just talk about bladder cancer. The Think Tank continues to grow because of our collaborative approach and a common desire to advance progress against this disease. Think Tank offers clinicians and researchers, along with survivors, patient advocates, nurses and other advanced practitioners, the opportunity to hear presentations and formal discussions about important issues in bladder cancer. It also provides a more personal opportunity for networking and collaboration.
Each year, we have widened the circle a bit and invited more people, which presents a bit of a challenge to our desire to keep the meeting’s and researchers are interested in bladder cancer and want to attend the Think Tank, handling our growth is a good problem to have.
BCG is considered the standard of care for many bladder cancer patients. There have been shortages of this important treatment throughout BCAN’s history. Now in 2020, the most recent BCG shortage continues. What do you want people to know?
Diane: Unfortunately, the BCG shortage has become the new normal. The way that our regulatory process works, we cannot force new drug manufacturers to come into the market or produce more. BCAN is focusing our energy during this incredibly difficult time on getting access for as many people as possible. We need to look to the future and advocate for and support the development of new drugs to replace BCG. BCAN continues to work with the research community and the FDA to ensure that trials are designed in the best way possible and that the drugs that are approved are safe and effective.
What can people do to support the bladder cancer community?
Diane: I hope that people will take part in their own community efforts to raise awareness of this disease. As I have said before, bladder cancer is one of the most commonly diagnosed cancers in the United States, yet far too many people first learn that bladder cancer exists when they are diagnosed. On their local level, people can work with BCAN to help continue to create partnerships with the medical community, including community practices and major cancer centers. They can also work to raise awareness among the state and federal governments about the ongoing need for additional funds for bladder cancer research.
Finally, I would encourage everyone to support all of BCAN’s programs so that we can continue to grow our educational and support services, as well as advance bladder cancer research. approved to treat bladder cancer.
What needs to be done to ensure that there are new treatment options every year?
Diane: We need to continue to demand new treatments, continue to support research, and continue to support collaboration that has helped advance new treatments. These are wonderful developments, but there is not a silver bullet in any cancer which is the cure for everyone. We need to keep pushing for more knowledge, increased understanding and improved treatments for all types of bladder cancer.
What do you envision for the next 15 years?
Diane: In addition to continuing to advance bladder cancer research and more effective treatments, we need to ensure that BCAN resources are available to every person who is diagnosed with bladder cancer, including educational resources and patient and caregiver support. We need to expand relationships with other advocacy groups and with community-based care providers to ensure that all patients have access to good medical care to get the best treatments available. Finally, we need to continue to improve public awareness about the risks, signs and symptoms of bladder cancer, so that both men and women get diagnosed at the earliest possible time when most patient outcomes are better.