2018-2019 ASCO President Monica M. Bertagnolli, MD, FACS, FASCO, is putting the words of her presidential theme—"Caring for every patient, learning from every patient”—into action. During her term, she and other ASCO leaders are traveling to local communities around the United States to moderate question-and-answer sessions with patients, survivors, caregivers, and oncology professionals. Providers will provide expert answers to patient questions and learn about the vital needs of patients in these communities. Members who participate in these town hall sessions, “ASCO in the Community: Listening and Learning From Our Patients,” will share the knowledge they’ve gained in a series of blog posts throughout the year.
In this post, Marcia Cruz-Correa, MD, PhD, details key points from discussions that took place in San Juan and Caguas, Puerto Rico, in January 2019. Read takeaways for patients on the Cancer.Net Blog.
What is the cancer care landscape in Puerto Rico?
MC: Puerto Rico is a U.S. territory with approximately 3.2 million Hispanic citizens; another 5.5 million Puerto Ricans live in the mainland United States. Health care for patients with cancer is provided by a dual private and public health care system. There are several hospitals in Puerto Rico, some of them specifically focused in cancer care or with cancer centers. In the San Juan metropolitan area there are several hospitals with cancer centers, including the Veterans Hospital, the non-for-profit Isaac Gonzalez Martinez Oncologic Hospital, the Auxilio Mutuo 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 oncologic services, and several have specialized oncology units.
As a gastrointestinal oncologist and physician-scientist working within the public and academic health system, I see the challenges faced by people of limited resources. In Puerto Rico, the health care professionals and clinical infrastructure required to provide standard-of-care therapies are at par with larger U.S. mainland centers. In fact, a significant number of oncology specialists and subspecialists are trained in the U.S. mainland, are board certified, and are members of local and national professional organizations. However, the fragmentation of care and health care insurance (including Medicare Advantage penetration of over 90%, decreases in the federal funding for Medicaid, etc.) create challenges in the delivery of oncology care services.
Despite the 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 health care providers to receive fruit, like plantains or mangos, as a gesture of gratitude. Of course, a big smile and a hug to say hello and goodbye seals the deal!
How does cancer care continue to be impacted by the destruction caused by Hurricane Maria, and how are the people of Puerto Rico responding to these challenges?
MC: Maria was the worst natural disaster to hit Puerto Rico in close to a century, and it destroyed the infrastructure of Puerto Rico beyond imaginable levels—everything from electrical power to communication to the availability of natural resources. The role of the medical community, the non-for-profit sector, and private citizens was extraordinary in re-establishing medical services across the island. Ordinary citizens, armed with faith and resilience, reached out to friends, relatives, and many health organizations in the mainland U.S. to develop a matrix that supported the island’s basic needs for weeks after the hurricane. The chaos after Hurricane Maria was only mitigated by a large community effort across the island that grew organically and served to organize different private and public sectors to provide basic needs for the citizens of Puerto Rico.
ASCO members in Puerto Rico are organized in a State/Regional Affiliate chapter, the Puerto Rico Association of Hematology and Medical Oncology, and have been very active in conducting collaborative events with the national ASCO community. During the town hall, participants were very positive and shared many inspiring stories about how the leadership of the Florida Society of Clinical Oncology (FLASCO, also an ASCO State/Regional Affiliate) supported Puerto Rican oncologists and patients after Hurricane Maria. The assistance of the FLASCO team was extraordinary as they helped catalyze efforts to raise funds, provided trained personnel, and facilitated access to the leadership of CMS to help the patients of Puerto Rico.
During the town hall, Dr. Lourdes Feliciano, past president of the Puerto Rican association, provided a detailed narrative of key people who were instrumental to Puerto Rico. She also talked about how the association created a network of communication using the internet (including the messaging app WhatsApp) and the radio to provide information to patients across the island.
The way the community collaborated across all sectors and the response of the Puerto Rican diaspora was inspirational and reminded us 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 thousands of private citizens working with public, governmental, federal, and private organizations prevented the deaths of many more Puerto Ricans.
What was your role in the town hall meeting and related discussions in Puerto Rico?
MC: As a gastroenterologist at the University of Puerto Rico (UPR) Medical Sciences Campus and director of the Division of Cancer Biology at the UPR Comprehensive Cancer Center, I had the opportunity to work with the delegation from ASCO during their visit to Puerto Rico in January 2019. I organized the meetings and invited key stakeholders who would be able to contribute to a discussion of the landscape of oncologic care in the island. We invited health care providers who represented multiple sectors, including not-for-profit, private, and government health care organizations representing medical, surgical, and radiation oncologists. In addition, we had a special session both at a hospital (Hospital Oncologico Isaac Gonzalez Martinez) and in a private office setting (hosted by local oncologist Dr. Lourdes Feliciano), where patients had the opportunity to talk with the ASCO leaders about their experiences, successes, and challenges.
What were the key takeaways for medical professionals from the town hall?
MC: The health care providers that participated in the town hall were very motivated to discuss the specific situation in the delivery of oncologic care in Puerto Rico. There was a common theme of fragmentation of services and having to develop their own navigation systems to help provide high-quality care for their patients. Some of the medical, surgical, and radiation oncologists who participated in the town hall meeting discussed the challenges they faced to take care of patients with cancer, including drug shortages. A significant effort is invested in obtaining pre-authorizations, which results in delays in care delivery.
Dr. Roberto Santiago, president of the PR Radiation Oncology Association, discussed how access to clinical trials is limited and said that working with larger professional organizations such as ASCO to provide education and facilitate clinical trials is needed. A priority issue to address is the lack of coverage of standard care for patients who are enrolled in clinical trials, as this limits the participation of patients in Puerto Rico.
There were discussions about the differences in financial health policies with regards to federal health funding and how policies by the U.S. Department of Health & Human Services are needed to bring parity to the people living in Puerto Rico. The socioeconomic and political status of the U.S. citizens living in Puerto Rico is directly related to the health policies and coverage of health services for the people living in Puerto Rico.
Dr. Sixto Perez, current president of the Puerto Rico Association of Hematology and Medical Oncology, explained that about 90% of the Medicare beneficiaries in Puerto Rico are enrolled in Medicare Advantage, which brings a number of challenges. The town hall participants discussed the need to modify several important Medicare Advantage and Medicaid distribution models to allow for adequate support of health care costs in Puerto Rico. For instance, a U.S. citizen living in Puerto Rico receives the lowest Medicare funding (43% below U.S. average) and the lowest Medicaid funding (60% below U.S. average), despite the fact that Puerto Rico has the lowest income per capita. Differences in health care funding result in decreases in the services available for the U.S. citizens living in Puerto Rico. The participants discussed the importance of revision of federal policies to provide matching funds and obtain health parity for the local citizens.
Several organizations, including the American Cancer Society, have been supporting health policy reform to provide health parity for the practitioners and hospitals in Puerto Rico. ASCO members can provide support by talking with their respective federal representatives about parity of health care funding for the U.S. citizens living in Puerto Rico.
There was a consensus among the town hall participants that we need to enhance communication among providers/hospitals, because a significant number of patients move from Puerto Rico to the continental U.S. (and vice versa) to receive oncologic care. This migration increased after Hurricane Maria, as many Puerto Ricans immigrated to states such as Florida, Illinois, and Texas, among others.
Educational opportunities were also mentioned as an area to continue to collaborate with other ASCO members to strengthen the bonds and expertise of the local medical and surgical oncology community.
Are there any other comments from the town hall and discussions that you would like to share?
MC: We are deeply grateful to ASCO and its leadership for developing the initiative to visit the practicing oncologists and patients across the U.S. and Puerto Rico. The opportunity to meet leaders and physician-scientists such as Dr. Bertagnolli and Dr. Edith Perez ignited the oncology community in Puerto Rico to continue to work on common projects that are relevant for all different sectors and constituencies. Dr. Bertagnolli was the first ASCO president who has visited Puerto Rico to speak informally to patients and to oncology health care providers. She shared her vision as ASCO president, as well as ASCO’s efforts on behalf of the members of the organization and the oncology practice across all sectors.
Dr. Cruz-Correa is a professor of medicine at the University of Puerto Rico, adjunct associate professor of medicine at Johns Hopkins University, and adjunct professor of surgical oncology at The University of Texas MD Anderson Cancer Center. 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.