Luciana Holtz de Camargo Barros
Luciana is a proud wife and mother of two twin boys and the President and Founder of the cancer patient advocacy organization, Instituto Oncoguia, in São Paulo, Brazil. I am a psycho-oncologist with a specialization in bioethics.
I worked with patients and their families as a psycho-oncologist until 2010. During this time, I often became frustrated when my patients would come to me after a cancer diagnosis with inaccurate information that led to depression, anxiety and other avoidable mental stress. To address this need, in 2003 I 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, I collaborated with other health professionals and volunteer cancer patients to establish the nonprofit, Instituto Oncoguia, with the objective of helping patients with cancer live better lives. Instituto Oncoguia develops programs and initiatives related to health promotion, disease prevention, wellness and patients’ rights through increasing access to quality information, educating the community, empowering patients with support services, and advocacy.
Instituto Oncoguia has six strategic objectives:
1) to provide quality information for patients, families and communities;
2) to educate patients and communities about the importance of self-care, wellness, and quality of life;
3) to empower patients and communities by offering them a voice and supporting their needs;
4) to promote and facilitate access to legislative rights for patients;
5) to increase citizen participation and engage legislators to improve public policies related to cancer control;
6) to promote a multidisciplinary health approach.
With this strategy in mind, Instituto Oncoguia has two main platforms: the Oncoguia Portal, an informative and interactive online resource for those seeking accurate and quality information, and the National Support Program for Patients with Cancer (PAP), which provides resources and support through a toll-free number.
On November 23, 2020, we at Instituto Oncoguia celebrated our 11th anniversary. Over the years, we have learned a lot – the good, the bad, and the inspiring! The greatest benefit I have experienced through my work is being able to interact with patients and their families and to support them through the most difficult moments of their lives.
It has been such a blessing to develop close relationships with our patients and volunteers and to see the positive quality of life many have, including those living with advanced disease. With this, of course, comes many challenges, as well. In Brazil, our public health system is not equal. This can be very difficult and frustrating when our patients are unable to access the treatment and care they need and deserve. We know without a doubt that lives have been needlessly lost because patients did not receive health services in a timely manner. This is what drives us and keeps us motivated to continue fighting.
To address these inequities, we have worked in partnership with other patient organizations to pass two specific laws that are designed to expedite service delivery for patients. First, the 60-day law, passed in 2012, requires that patients receiving care through the public health system must begin treatment within a maximum of 60 days from the date of signature on the pathology report diagnosing the malignancy. We know, however, that implementation of this law is inconsistent and delays are also found during the pathology and diagnostic phase.
As such, in 2019, the 30-day law was passed that requires test results confirming malignant neoplasms be received by patients through the public health system within a maximum of 30 days.
We continue to monitor the data available through the public health system as well as the patient experience to ensure these laws are implemented appropriately. Our hope is that anyone seeking care is able to receive a fast diagnosis and begin treatment using the best medication and technology available to facilitate a positive health outcome and quality of life.
Our work with GIST has been ongoing for many years. Our priority has been to ensure patients and families have access to quality information and receive patient support. GIST is among a group of rare cancers in Brazil that have an extra burden of finding and accessing the appropriate specialists who are experts in the area.
This is one of the greatest barriers for our patients living with GIST in Brazil. Many oncologists are not familiar with GIST and patients often face many challenges to simply reach a diagnosis. It is not uncommon for patients to have to seek the opinion of many doctors and specialists for a diagnosis and then begins the additional barriers to biopsy and treatment delays that disproportionately affects patients living with GIST because of the lack of familiarity with the disease.
We know that there is a lot to be done to meet our objective of ensuring patients living with cancer live better lives. For patients living with GIST, the challenges are even greater. But with the support and partnership of Life Raft Group, we are strengthened and motivated to continue providing quality information and support for patients and families so that every person impacted by cancer knows they are not alone.
Visit Instituto Oncoguia: oncoguia.org.br/