The Insituto Oncoguia team participating in World Cancer Day outreach in 2019.
Luciana Holtz de Camargo Barros is the President and Founder of Oncoguia, a cancer patient advocacy organization in São Paulo, Brazil.
Holtz worked as a psycho-oncologist until 2010. During this time, she often became frustrated when her patients would come to her after a cancer diagnosis with inaccurate information that led to depression, anxiety, and other avoidable mental stress. To address this need, in 2003 Holtz launched the Oncoguia Portal, a reference website to provide accurate, quality, and digestible information to patients and caregivers about prevention, diagnosis, and treatment of cancer. The success of Oncoguia Portal demonstrated the need for further action. In 2009, Holtz collaborated with other health professionals and volunteer cancer patients to establish the nonprofit, Oncoguia.
After more than ten years of working every day to help those with cancer live better lives, we have grown, transformed, and matured. Today, we support, inform, and defend patients’ rights with the mission to strengthen, encourage, and guide people living with cancer to face the challenges of cancer in the best way possible. Our new institutional objectives include: 1) to guarantee that more patients and caregivers recognize, confer, and trust in Oncoguia from the moment of diagnosis until the end of their journey with cancer; 2) to amplify the engagement of patients and caregivers in the cancer movement; and 3) to contribute to cancer related policy discourse in the public and private sectors that considers and prioritizes, in theory and in practice, the reduction of inequalities and the promotion and guarantee of access to early diagnosis and effective treatments.
Today, our work is more important than ever. We know that the COVID-19 pandemic has interrupted essential cancer services, including early detection screening and diagnosis, treatment, and care for those living with pancreatic cancer. To address this, we use two main platforms to educate our communities and increase awareness about the importance of adhering to and not delaying recommended services. These include the Oncoguia Portal, an informative and interactive online resource for those seeking accurate and quality information, and our National Support Program for Patients with Cancer, which provides resources and support to patients and caregivers through a toll-free number.
The COVID-19 pandemic has also highlighted the importance of our advocacy initiatives. We are currently working with policy makers to facilitate a safe and speedy return of all oncology services that have been disrupted. Our advocacy focuses on ensuring diagnostic and screening services, such as annual exams and biopsies, are prioritized and cancer treatments are no longer delayed or cancelled. We know these delays in screening mean that many cancers are going undiagnosed, which may later translate to patients presenting with cancer at an advanced stage. Likewise, treatment interruptions may have negative impacts on patient outcomes and quality of life, all of which are avoidable with continuity of services.
COVID-19 has also served as a catalyst for innovation and bringing communities together. Over the past year, we have hosted all of our events online that would ordinarily be held in person, such as our annual National Policy Forum that we recently held in early May. By using online platforms, we have increased our capacity to inform communities throughout Brazil and the world. As part of the WPCC, we are eager to learn from our colleagues about what inventive ways they have used to stay connected to their communities and to share best practices.
While the pandemic continues, so does our work to support people living with cancer in Brazil. We are proud to be a member of the WPCC, working together to raise awareness and promote early detection of pancreatic cancer. Now more than ever at Oncoguia, we are here – with our patients, for our patients.
To learn more about the Instituto Oncoguia, visit their website here.