ASCO in the Community: How Community and Collaboration Fill the Gaps in Cancer Care in Puerto Rico

March 26, 2019
Marcia Cruz-Correa, MD, PhD

Dr. Marcia Cruz-Correa is Professor of Medicine at the University of Puerto Rico, Adjunct Associate Professor of Medicine at Johns Hopkins University (Baltimore, MD), and Adjunct Professor of Surgical Oncology at MD Anderson Cancer Center (Houston, TX). She is the Director for the Division of Cancer Biology at the University of Puerto Rico Comprehensive Cancer Center, Director of the Gastrointestinal Oncology Center at the Isaac Gonzalez Martinez Hospital, and lead investigator of the Puerto Rico Consortia for Clinical Investigation at the University of Puerto Rico Medical Sciences Campus.

“Caring for every patient. Learning from every patient.” For ASCO President Dr. Monica Bertagnolli, this is more than just a presidential theme. To put action to words, she is heading to local communities to speak with patients, caregivers, and oncology professionals. She and other ASCO members are responding to patients’ concerns and, at the same time, they are learning more about the challenges that exist in getting quality cancer care. These sessions are called “ASCO in the Community: Listening and Learning from Our Patients.” In January 2019, Dr. Bertagnolli visited San Juan and Caguas in Puerto Rico.

What was your role in the events in Puerto Rico?

I worked with various local hospitals and cancer centers to arrange places for the delegation from ASCO to visit. My role was to organize meetings and invite key stakeholders who would be able to contribute to a discussion about what delivering cancer care is like on the island. We invited health care providers from multiple sectors, including not-for-profit, private, and government health care organizations representing medical, surgical, and radiation oncologists. In addition, we had special sessions with people with cancer both at a hospital (Hospital Oncológico Isaac Gonzalez Martinez) and in a private office setting, with medical oncologist Dr. Lourdes Feliciano. These people then had the opportunity to share their experiences, successes, and challenges of being a cancer patient.

What is the cancer experience like in Puerto Rico?

Puerto Rico is a U.S. territory with about 3.2 million Hispanic citizens. Another 5.5 million Puerto Ricans live in the mainland United States. Cancer care is provided by a private, a federal (veterans), or a public health care system. There are several hospitals in Puerto Rico. Some of them are specifically focused on cancer care or have cancer centers. In the San Juan metropolitan area, there are several hospitals with cancer centers, including the Veterans Hospital, the not-for-profit Isaac Gonzalez Martinez Hospital, the Auxilio Cancer Center, and HIMA Cancer Center. The University of Puerto Rico Comprehensive Cancer Center, founded in 2004, recently opened its cancer hospital and started providing services in 2018. There are other hospitals across the island that provide cancer services, and several have specialized cancer units.

In Puerto Rico, the health care professionals and clinical infrastructure required to provide standard-of-care treatments are similar to those of larger cancer centers on the U.S. mainland. In fact, a significant number of medical, surgical, and radiation oncologists in Puerto Rico are trained in the U.S. mainland, are board certified, and are members of local and national professional organizations.

As a gastrointestinal oncologist and physician-scientist working in the public and academic health system, I see the challenges that are faced by people of limited resources.

There are challenges in delivering cancer care in Puerto Rico, especially access to health insurance and cancer care.share on twitter The fractured health care system in Puerto Rico requires patients to visit different hospitals, offices, laboratories, and more, resulting in communication problems across their medical teams. Issues with health insurance, such as delays in referral to specialists or services, and the financial impact of a diagnosis of cancer are substantial.

One important aspect that arose from discussion with the town hall participants was the need to improve communication between health care providers and hospitals because a significant number of patients move from Puerto Rico to the mainland U.S. (and vice versa) to receive cancer care. This migration between Puerto Rico and the mainland increased after Hurricane Maria, as many Puerto Ricans immigrated to other states, such as Florida, Illinois, and Texas. We need to be sure that these people still receive comprehensive care as they move from one place to another.

Despite these challenges, the people of Puerto Rico are among the cheeriest, most optimistic, and grateful people I have ever met, and I am truly honored to practice in Puerto Rico. It is a joy to see how our patients share their faith and their food in appreciation. It is very common for us to receive a fruit, plantains, or mangos as a gesture of gratitude. Of course, a big smile and a hug to say hello and goodbye seals the deal!

Does the destruction caused by Hurricane Maria continue to affect cancer care in Puerto Rico?

Hurricane Maria was the worst natural disaster that hit Puerto Rico in nearly a century. It destroyed the infrastructure of Puerto Rico, affecting electrical power, communication, and availability of natural resources. The joint efforts of the medical community, not-for-profit sector, and private citizens was extraordinary in reestablishing medical services across the island. Ordinary citizens armed with faith and resilience reached out to friends, relatives, and health organizations in the U.S. mainland to develop a system that supported the basic needs of the people of Puerto Rico for weeks after the hurricane.

Dr. Feliciano talked about how the Puerto Rico Hematology & Oncology Association created a network of communication using the internet and the radio to provide information to patients across the island.  Many medical offices and hospitals relied on diesel fuel to run generators to provide power, and finding that fuel was a priority and a challenge. But how the community collaborated across all sectors was inspirational and reminded me of the fragility of life and the strength of the community. Thousands of lives were lost in the aftermath of Hurricane Maria, but the efforts of private citizens working with public, government, and private organizations prevented even more deaths.

In 2018 to 2019, ASCO is holding a series of ASCO Presidential Town Halls with local groups across the United States to hear from patients, providers, and the general public about real-world barriers to quality cancer care and to talk about ways to provide the best care to every person diagnosed with cancer. These events are free and open to everyone; pre-registration is necessary. Visit Cancer.Net for additional locations and dates.

Whether you will be able to attend an ASCO Presidential Town Hall near you or not, we welcome comments from patients and caregivers about your experiences with cancer.