One humid afternoon just before Christmas, we drove down the hillside from the busy junction of Papine, descending into the valley of Elletson Flats, just where the hills meet the city. Smoke curled from the trees and a sound system played somewhere. A game of football was in progress in the yard of the Sir John Golding Rehabilitation Centre, nearby. We looked over at the forested hills of St. Andrew, on the other side of the flat valley of the Hope River. Then we arrived at the Hope Institute Hospital to talk to its Senior Medical Officer, Dr. Dingle Spence about a ground breaking new project, the Jamaica Cancer Care and Research Institute (JACCRI).
It was a friend, publisher and entrepreneur Latoya West-Blackwood, who had told me about Dr. Spence and the new venture. She told me about a remarkable conference that took place on December 12th/13th at the University of the West Indies, Mona on Emerging Issues in Cancer Care and Research: Translational Challenges in the Jamaican Context. I attended the final afternoon of the meeting, and wished I had heard more of the presentations. Why was this meeting remarkable? Well, it was the product of a powerful partnership between JACCRI and the Harvard/MGH Center on Genomics, Vulnerable Populations and Health Disparities. It had been organized at short notice – with no less than fifteen U.S. academics participating in a vibrant gathering with Jamaican doctors and academics.
JACCRI was officially launched at the conference by co-founders Dr. Alexandra Shields, Director of the Harvard/MGH Centre; Dr. Spence; Dr. Sheray Chin, Consultant in Medical Oncology and Internal Medicine at the University Hospital of the West Indies (UHWI); and Dr. Jennifer Mamby Alexander, Owner and Founder of Surgipath & Cytology Lab, Inc. I recall that Dr. Spence had tears in her eyes as she thanked participants at the close of the meeting, and one could understand why. It was quite an achievement and an example of mutual support and true commitment on the part of all participants.
You may wonder why my friend Latoya had drawn this to my attention. This is her story:
When my Mom, Leonie, was diagnosed with stage four terminal metastatic breast cancer, it was overwhelming to put it mildly. There was no family history, she had been doing annual screenings, eating properly and here comes this very aggressive cancer. We felt totally in the dark about what was happening. The concerns actually came about 4-6 months after having the lump removed locally and going in a circle of doctors who seemed to be struggling with a broken system (accurate results take far too long!) They were far from equipped with the emotional tools to show empathy and truly provide a customized plan of treatment for patients like my Mom, who really needed this. To tell you about the journey would take a long time; but after my Mom’s death I knew that in spite of my loss, I had to work to make things better for people who were facing the same fate with far less resources and support. The work of people like Dr. Dingle Spence and organizations like the Palliative Care Association of Jamaica and the newly launched Jamaica Cancer Care and Research Institute (JACCRI) provides hope in critical areas like data driven care, patient navigation – and a collaborative approach to solving the problems of “now” and formulating solutions for those of the future. The recently concluded JACCRI conference has highlighted some key information such as the disproportionate impact of certain types of cancers in Black and African Caribbean populations. This new focus could help to save thousands of lives and provide dignity in dying for those who are terminally ill.
The Hope Institute Hospital is Jamaica’s only dedicated Oncology and Palliative Care public health care unit; and in fact the only one in the English-speaking Caribbean, Dr. Spence told me. It was built in 1963 and was formerly operated by the Jamaica Cancer Society. It is now run by the South East Regional Health Authority and is closely aligned with the Kingston Public Hospital. When Dr. Spence returned from graduate studies in Oncology and Palliative Medicine in the UK in 2002, the Hospital had one doctor; now it has eight. It has 40 beds, for patients or post-cancer diagnosis; they may go to KPH if they need radiotherapy, but they all stay at the Hospital. Palliative Care patients stay for an average of fifteen days or so. “It’s not a hospice,” Dr. Spence pointed out, “Most of the patients are discharged and go home. We actively treat cancer, and we offer palliative care.”
Already trained in Palliative Care, Dr. Spence undertook an International Pain Policy Fellowship (2008 -12) at the University of Wisconsin in the U.S. This Fellowship was designed to help physicians improve access to Pain Control and Palliative Care for patients in their own countries.
Palliative Care is for those with serious illnesses; it addresses the needs of the mind, body and spirit, helping the patient to cope by obtaining more information and a deeper understanding of the illness. Palliative Care often involves Pain Control and the easing of side effects from treatment. But apart from dealing with their physical symptoms, those who are seriously ill often worry about the future – for themselves and their families; perhaps there are concerns about money. These kinds of emotional challenges are also addressed in Palliative Care. It is person-oriented, not disease-oriented. Improving the patient’s quality of life and relieving suffering and stress is the fundamental aim of Palliative Care.
“JACCRI only really came together in the past two months,” said Dr. Spence. “The idea is quite a recent one, but the conversations around it has been happening for at least a year.” It really started with the visit of Dr. Alexandra Shields two years ago. Dr. Shields, who is Director of the Harvard/MGH Center at Massachusetts General Hospital and Associate Professor of Medicine at Harvard Medical School, focuses on minority and other underserved populations in her work. Like Dr. Spence, the social, emotional and spiritual aspects of severe illness (these were explored at the conference) are a critical aspect of Dr. Shields’ research. She and Dr. Spence met, talked and shared thoughts. Dr. Shields returned a year later – and her commitment to pursuing a partnership with Dr. Spence became clear. Dr. Spence told me that Dr. Shields, a friend of Jamaica, was a teacher at Alpha Academy in the 1980s. Through discussions with pathologist Dr. Jennifer Mamby-Alexander and medical oncologist Dr. Chin, the concept of JACCRI was born. JACCRI is a non-profit organization and is currently getting registered as such.
“Most genetic research in cancer has been on people of European descent,” Dr. Spence pointed out. “Only three per cent has been done on people of African descent.” Now, Dr. Alexander has thousands of tissue samples at her lab, which she would like to make available for Harvard’s research. However, as Dr. Spence emphasized, this is a very sensitive issue in terms of ethics. Permissions are needed. She told me about the famous case of an African American woman, Henrietta Lacks, whose cells from her tumor – biopsied during treatment for cervical cancer at the Johns Hopkins Hospital – were used for research, without her knowledge or permission. Ms. Lacks died in 1951. Her “HeLa cells” subsequently led to many important breakthroughs in biomedical science; they were actually mass-produced. Ms. Lacks’ descendants have since sought and obtained some control over the DNA line.
So, Dr. Shields persisted with the JACCRI idea, bringing down her research assistant to catalogue Dr. Alexander’s 25,000 or so tissue samples; quite a task. Dr. Shields invited academics for the conference, including four from her own team. “The concept of JACCRI was not to replicate – it was to provide support for improving cancer care in Jamaica,” noted Dr. Spence.
On the Sunday before the Conference, there was a strategic planning meeting, which included representatives of the Ministry of Health, non-governmental organizations, UHWI, the Hope Institute, the Palliative Care Association of Jamaica and donors – some fifty people in total. “We did a lot of brainstorming,” said Dr. Spence, with enthusiasm. Breakout sessions (with “lots of sheets of white paper”) identified the priorities, which all agreed on: Firstly, the “absolute need for data collection and research…done in a structured way,” Dr. Spence noted. “It’s very hard to drive policy if you don’t have reliable data.” How true, and how important this is, in many areas of Jamaican life.
The second absolute necessity, the experts decided at that meeting, was the need for professional education and training in Oncology and Palliative Care. “I am the only person on the island who is qualified in Palliative Care…along with one Resident here, who just obtained her Diploma,” said Dr. Spence, almost in disbelief. A solid team has to be built through training. The third essential component for JACCRI is public education, and patient navigation. Cancer patients themselves “get lost” and are confused by the system, often unaware of what their illness means. It’s sometimes a case of “Help! What do I do next?” Patient navigation, an element of cancer care, simply means helping patients find their way through that system, so that they get the best treatment they can, and in a timely manner. This calms the patient and sets their mind at rest.
Finally, of course, there is the need for funding for JACCRI. This will be sought within and outside Jamaica. “I think there are potential funders out there,” affirmed Dr. Spence.
Two things are of critical importance for JACCRI, as it gets fully established. One is its clear and explicit commitment to meeting the needs of Jamaica’s most resource-poor patients – those who are currently underserved and who most need guidance and support. This is already a major focus of Dr. Shields’ and Dr. Spence’s work.
Secondly, JACCRI welcomes collaboration with partners in all sections of Jamaican society – including policy makers, researchers and health care providers – and with colleagues in the wider Caribbean. In these times of scarce resources, collaboration is key – and the partnership with Harvard is a tremendous example of how groups of scientists and academics can share knowledge and work together. It is very costly these days, in terms of time and money, to “reinvent the wheel.”
So what of the future, I asked Dr. Spence – looking down the road, so to speak? Her eyes lit up. Of course there is much work to do, but she is very optimistic and sees great possibilities opening up. At the top of her list is “developing a sustainable training platform or module…It doesn’t make sense to send someone to Harvard, where people would be working in a different context,” she noted. She would like to develop a solid training program here, bringing trainers to Jamaica. Another idea that she smiles about is to get those trained in Jamaica to then visit Boston, to work with Jamaicans in the diaspora who serve Jamaican communities overseas. What an amazing cross-fertilization that would be – Jamaicans “giving back” to those now living in the U.S.
There is another project in the offing, for which the Ministry of Health has already given the go-ahead: A World Health Organization (WHO) demonstration project on Palliative Care. Dr. Eric Krakauer, Medical Officer for Palliative Care at the WHO in Geneva, has pledged his support; he participated in the UWI conference, and has tremendous experience in training and technical assistance in developing countries, and for serving ethnic minority patients in the U.S.
So, there is much to look forward to; and much for us to appreciate in this collaboration of caring and dedicated scientists, working for the sake of people like Latoya’s mom. Dr. Spence is excited, and hopeful, and working tremendously hard not only to keep building up the Hope Institute Hospital – but also to build a strong foundation at JACCRI. Perhaps the oft-used quote from Margaret Mead is appropriate here:
“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.”