June 2014, Vol 3, No 4
Implementing Global Healthcare: Partners In Health and the Rwandan Cancer Center Initiative
Partners In Health (PIH) was founded in 1987 by Ophelia Dahl; Paul Farmer, MD, PhD; Jim Kim, MD, PhD; Todd McCormack; and Thomas J. White to deliver healthcare to residents of Haiti. In the 27 years since then, PIH has launched healthcare projects around the world. Its mission is to provide a preferential healthcare option for the poor. By establishing long-term relationships with sister organizations based in settings of poverty, PIH strives to achieve 2 overarching goals: to bring the benefits of modern medical science to those most in need of them and to serve as an antidote to despair.
PIH in Rwanda
Rwanda was one of the world’s poorest countries even before the 1994 genocide devastated the nation and its fragile healthcare system. In 2005, as part of its rebuilding, the Rwandan government asked PIH to help strengthen the public health system in 2 underserved districts in the eastern province. Widespread poverty, limited access to care, and insufficient resources to address easily treatable diseases resulted in countless preventable deaths.
With Rwandan sister organization Inshuti Mu Buzima (Kinyarwanda for “Partners In Health”), PIH has brought high-quality healthcare to 3 rural districts that previously had some of the country’s worst health outcomes. In addition to the 3 hospitals and 41 health centers throughout the districts of Burera, southern Kayonza, and Kirehe, the Butaro Cancer Center of Excellence opened in July 2012. The center vastly improves Rwandans’ options for diagnosis and treatment and is the first of its kind to bring comprehensive cancer care to rural East Africa.
At the Butaro Cancer Center, patients have access to screening, diagnostics (tissue procurement, pathology evaluation, and imaging), chemotherapy, surgery, patient follow-up, palliative care, mental health and social work services, and socioeconomic support such as food, transportation, home visits, and community health worker accompaniment. Patients needing radiation therapy (still unavailable in Rwanda) are referred to Mulago Hospital in Uganda.
Cancer Center Features Include:
- 24 beds for adult and pediatric cancer patients, plus 3 isolation rooms
- A patient-centered design – each bed faces a beautiful view
- Care from trained nurses who are mentored by visiting oncology nurses from Dana-Farber Cancer Institute (DFCI)
- Care from general practitioner doctors with special training in oncology and Butaro-based internist and pediatric specialists
- Support from oncology specialists from DFCI and Brigham and Women’s Hospital to provide mentorship and guidance
Catalyzing Lasting Change
The center will also serve as the first facility to implement standardized cancer training and protocols developed in partnership with the Rwandan Ministry of Health. The center’s contributions to national cancer care will include:
- Developing and implementing standardized national cancer protocols to improve the quality of patient care
- Collaborating with national partners and colleagues to share experiences and strengthen strategies for procuring necessary equipment, consumables, and medications
- Creating a comprehensive paper chart system and sophisticated electronic medical records to streamline care and reduce medical errors
- Developing a database and indicators to facilitate monitoring and evaluation of diagnostic and treatment programs
- Developing cancer training programs for nurses, doctors, medical and nursing students, medical residents, and pathology support
The Butaro Cancer Center of Excellence is a critical element of Rwanda’s ambitious plan to strengthen cancer prevention, screening, and treatment on a national level. It was built and operates with support from a unique partnership brought together through the Clinton Global Initiative: the Rwandan Ministry of Health, PIH, DFCI, Brigham and Women’s Hospital, Boston Children’s Hospital, and the Jeff Gordon Children’s Foundation.
Today, Rwanda is seen as a model for how resource-poor countries can recover from traumatic events, and PIH is proud to be playing an ongoing role in this emerging global health success story. The development of the Butaro Cancer Center of Excellence is a manifestation of this partnership and a strong will to bring quality healthcare to those who have not had access.
Personalized Medicine in Oncology is pleased to provide the following interview with our editorial board member, Dr Lawrence N. Shulman of Dana-Farber Cancer Institute. Dr Shulman works closely with PIH, where he is senior advisor in oncology, helping to lead the development of a structured cancer program for healthcare sites in Rwanda, Malawi, and Haiti. He was the previous cochair, with Dr Julio Frenk, dean of the Harvard School of Public Health, of the Global Task Force on Expanded Access to Cancer Care and Control in Developing Countries, a Harvard-based, international task force committed to the improvement of cancer care worldwide. He provides an awe-inspiring look at the commitment to the global cancer care initiative that is taking place in Africa, Haiti, and several other areas lacking basic care. His work is emblematic of the altruism at the core of cancer care and is just part of a major, permanent initiative for the globalization of cancer care.
PMO Dr Shulman, let me thank you in advance for sharing with us the remarkable work you are doing in Rwanda and elsewhere around the globe to bring modern cancer care to places that would appear to lack even the most basic requirements for practicing meaningful care. Can you begin by sharing with us the genesis of this initiative?
Dr Shulman Certainly, my pleasure. I’ve worked with Paul Farmer and his organization, Partners In Health, for more than 2 decades. For many of those years, particularly in Haiti, when cancer patients would present to his facility, we’d figure out if we could treat them or not and do the best we could.
In 2008 he and I agreed to develop cancer care infrastructures, primarily in Rwanda and Haiti, 2 of the sites where he already had established facilities. The work started first in Rwanda. We built a new hospital in northern Rwanda, Butaro Hospital, which opened in January 2011, and immediately went to work on developing a cancer infrastructure that included a pathology lab and the ability to obtain, prepare, and administer chemotherapy, and so on. That cancer center was dedicated by former President Bill Clinton, Chelsea Clinton, and the Minister of Health, Dr Agnes Binagwaho, in July 2012. It’s the most accessible cancer care in the entire country of Rwanda.
What we have found over the past year and a half since we opened is that people have come from all over the country and, in fact, neighboring countries as well, to receive cancer care at Butaro. We’ve seen over 1500 new cancer patients in that first year and a half. Over 80% of those patients come from outside of the district of the hospital, which demonstrates that we are providing cancer care for the entire country. Patients have come from east Congo, Uganda, Burundi, and other neighboring countries as well. We treat everybody free of charge and have increased our ability to make diagnoses and deliver care.
It’s a complicated process. We have a functioning pathology lab in the country that is supported by my pathology colleagues at the Brigham and Women’s Hospital. We have a telepathology system so that slides can be read remotely. We’re developing expertise in immunohistochemistry for breast cancer, including estrogen receptors and HER2 status. We’re developing in-country capabilities for molecular testing such as looking for the Philadelphia chromosome, the BCR-ABL translocation, which you need to diagnose chronic myelogenous leukemia [CML], and we’re able to obtain imatinib free of charge from the Max Foundation and Novartis.
We’ve put a lot of pieces into place over the last 18 months, but we certainly continue to have challenges. It’s not easy to administer cancer therapy there. We’ve been fortunate to have Boston-based physicians from Dana-Farber, Brigham and Women’s Hospital, Massachusetts General Hospital, and Boston Children’s Hospital go for periods of time to provide care and train our colleagues there, and we’ve had Dana-Farber nurses on the ground in Butaro for most of the past 24 months. We’re beginning to fully flesh out the system. There are things that we don’t have that US physicians take for granted. We don’t have a CT scanner in our hospital. We can send patients to the capitol for CT scans, but it’s expensive and difficult. There’s no radiation therapy in the country. We send patients to Uganda for radiation, but that’s obviously a big undertaking. We are working with the Ministry of Health to try to establish a radiation facility in the country.
We have a research team in Rwanda, including a research assistant who’s collecting data. We have an electronic health record where the data are stored and also used as a database. We have several other researchers, medical students, and physicians who are there on fellowships. We all think that it’s critical that we look at several aspects of research. We need to better understand the demographics of cancer in Rwanda. There’s no reason to believe that demographics in Rwanda are the same as they are in the US. In almost every different geographic and ethnic population there are differences.
We have an area that we refer to as implementation science; this is where we assess whether we are effectively and safely treating our cancer patients – that we are administering the therapies at full dose and on time, safely managing the toxicities, and recording what the outcomes are. Again, you can’t assume that if you treat a patient with Hodgkin lymphoma in Rwanda with the same 4 drugs we use in Boston that the outcomes will be the same, because there could be genomic differences of the cancers or germline polymorphisms that affect the efficacy and/or toxicities of the drugs.
This summer we hope to begin to document the molecular biology of the cancers that we see there compared with the cancers that we see in the US. And even in the US, we know there are differences, for instance, in the breast cancer genomics in Caucasians versus African Americans. There are likely to be differences in the Rwandan population as well.
The first cancer we’re going to look at is Wilms’ tumor, which is a childhood cancer of the kidney. In the US, Wilms’ tumor is a very rare, highly curable cancer. In Rwanda, for reasons that are unclear to us, it is the most common cancer we see in children. Acute lymphoblastic leukemia, the most common pediatric cancer in the US, is the second most common pediatric cancer in Rwanda.
Our work in Haiti is a little bit further behind than it is in Rwanda. We just opened our new hospital in April 2013 and moved our cancer program in there in July 2013. We treat a lot of cancer patients in Haiti, but we don’t have the infrastructure set up as we do in Rwanda at this point.
PMO One of the things that springs to mind is screening and identifying patients with cancer. It’s axiomatic in developed countries that the earlier the diagnosis, the better the chances for clinical success. How do you screen patients in a country that lacks anything remotely like our healthcare infrastructure?
Dr Shulman The answer is, not much. There’s no breast cancer screening program, for instance. We’ve just started to do cervical cancer screening. There’s no prostate cancer screening. There’s no colon cancer screening. Part of the issue that you need to remember, I think, is that 24 months ago there was little access to cancer care in the country. Why would you screen anybody if you didn’t have the capacity to do a biopsy and make a diagnosis and treat them?
The ability to treat cancer patients is a new thing in Rwanda, relatively speaking. The people and the country are just beginning to understand that cancer is a potentially curable disease. Rwanda is a small country. Word travels fast, and so people are bringing themselves in for care in increasing numbers. But we know from some research that we’ve done recently that if you look at a group of breast cancer patients, most of them had gone to a medical facility somewhere in the country with a breast complaint for some period of months before they finally found their way to our hospital. Healthcare providers didn’t appreciate the fact that they could send them to our hospital in Butaro for care.
I think that’ll change with time. But one of the other issues is that Rwanda is a country of 11 million people, and as we strive to diagnose more patients at earlier stages of disease, we need to scale-up the capacity to evaluate and treat those patients. We still have work to do in this regard.
This is going to be an iterative process. We have to build increased capacity to treat cancer. We have to educate the physicians, nurses, and laboratory technicians at other hospitals in the country, which we’re actively doing. We need to develop cancer programs in these other hospitals and begin to do screening for some basic diseases in the community health centers, including screening for breast cancer and cervical cancer at a minimum. These are the 2 most common diseases we see in adults: breast cancer first, and cervical cancer second.
There are some things that we can’t explain. We see very little prostate cancer. My guess is that it exists, but men don’t come in for medical care, or they do come in and it’s not identified as the cause of their renal failure or their bone pain. There’s not general availability of PSA testing.
What we’re seeing at our hospital is almost certainly the tip of the iceberg and largely at this point either referred from physicians in other hospitals or self- referred, but generally not picked up as part of screening programs.
PMO Has this scenario, this “tip of the iceberg” idea, impacted your strategic and tactical attack on cancer in Rwanda?
Dr Shulman Yes. We recently had a Partners In Health–wide summit with the leaders from all their site programs – Rwanda, Haiti, Malawi, and other programs – in Boston last month where we spent 4 solid days reviewing all the programs, not just the cancer programs.
We’re now starting to turn out data with patient outcomes. We are a year and a half into our program, and we’re starting to turn out data that are telling us exactly how patients have been treated – whether they’ve gotten their treatment on time, on schedule, and with manageable toxicity – and what their disease outcomes are. We already have some of those data; for instance, outcomes in CML treated with imatinib are excellent. All those patients have been determined to have the p210 BCR-ABL translocation, and they have all responded well to imatinib. Nobody’s been lost to follow-up, and I think 22 of the first 26 patients are still in hematologic remission.
You have to look at those data. This is a research experiment. You need to prove what you can accomplish, how the patients do, what the compliance with care is, what the toxicities are, and what the tumor outcomes are. Those data are being continually generated and updated, and that will give us a better idea of exactly what we have accomplished, where the gaps in care are, and where we can design changes in our care delivery model that might improve outcomes.
PMO Addressing the problem of cancer in a country like Rwanda requires you to establish priorities. How would you describe the way in which you have set your priorities in bringing cancer care to Rwanda?
Dr Shulman We are not going to be able to provide all care for all patients immediately. You have to start somewhere, and we have started. Take the pathology system, for instance. We first started making tumor blocks and sending the blocks back to Boston to be cut, stained, and read. Then we made tumor blocks and did the cutting and the staining and sent the slides back to be read. And then we started doing the reading with the visiting pathologists there and have started utilizing telepathology. We’re currently doing a validation study to determine the accuracy of telepathology.
That’s just a small example of the fact that it’s not an on/off light switch, it’s a developmental process.
We have tried to prioritize the diseases in which we can make the greatest impact. Certainly all the childhood cancers are included. We have good support from our pediatric oncology colleagues in developing treatment protocols appropriate for Rwanda.
It’s worth pointing out that for every disease we treat we have a written, agreed-upon, nationally approved approach from diagnostics to treatment. We need to be very thoughtful about the therapies that we are administering and be able to do it in a uniform way and therefore be able to capture the data in a meaningful way that tells us how we have done.
PMO Personalized medicine is predicated on an enriched patient population, and it stands in contrast to the blockbuster drug era or “population-based” approach to cancer care. Is it possible to apply a personalized approach to cancer care in an underdeveloped country like Rwanda, or are you limited from using the full armamentarium to date of personalized medicine targeting techniques?
Dr Shulman The answer is, it’s spotty. As I mentioned, we can get imatinib free of charge from the Max Foundation with the generosity of Novartis if we can prove the patient has the t(9;22) translocation in their CML cells or if they have a c-KIT mutation in gastrointestinal stromal tumors. That’s been incredibly generous on the part of Novartis and the Max Foundation and lifesaving for those patients. So that’s an example of success, if you will.
We don’t have the second- and third-line TKI [tyrosine kinase inhibitor] drugs if the patient’s disease becomes resistant to imatinib; but so far, fortunately, that’s been a rare occurrence.
PMO How receptive have patients been to your efforts, as exemplified by adherence to treatment, or just their overall receptivity to it?
Dr Shulman They’re incredibly receptive and very grateful. They’re incredibly compliant. Their adherence to treatment and follow-up is very high.
We almost never lose a patient to follow-up. With CML, for which they’re getting an oral drug, the only way you really can tell whether they’re taking it is by their hematologic parameters, which are excellent, so our assumption is that the patients are taking it as prescribed.
Let me give you an example. A couple of years ago the government, the Ministry of Health, in Rwanda in a partnership with Merck vaccinated over 93% of the girls between the ages of 11 and 14 with HPV [human papillomavirus] vaccine. That’s well above what the vaccination rates are in the US.
PMO What is the potential for wellness-based care in Rwanda and for continuing your efforts there?
Dr Shulman There are a few things to think about. I’ve just mentioned that HPV vaccination has been very successful. That’s a risk-reducing strategy for cervical cancer. Smoking is a very low-prevalence problem there. Obesity essentially doesn’t exist in the country.
PMO Have you established a model for replication in other third-world countries?
Dr Shulman We have begun to publish our experience, but in conversations with my colleagues who work in Uganda or Kenya or Tanzania or Botswana, we learn that in all these different places, the challenges are different, and the approaches need to be tailored to overcome those specific challenges.
I don’t think it’s a one-size-fits-all approach. We have a set of basic principles regarding the delivery of cancer care. For example, we deliver cancer care at Butaro without full-time oncologists on the ground. We have had full-time oncology nurses from Dana- Farber there but not full-time oncologists. We conduct weekly phone calls during which Dana-Farber oncologists review all the patients under treatment, and we also have multiple exchanges during the week to support those caring for patients.
One of the reasons I think this is such an important model is that if you look at the number of oncologists in the world – even if we were very aggressive about training more – how many will there be in 20 years? There are not going to be nearly enough oncologists to treat most of the cancer patients in the world. Developing different models of care, I think, is an important thing to do.
PMO Is this concern stimulating the government of Rwanda to do more to bring oncologists into their country?
Dr Shulman The Ministry of Health led by Dr Agnes Binagwaho is very strong, and with funding from the Clinton Global Initiative and the US government, we have a very broad program to increase healthcare capacity in Rwanda.
Rwanda has other problems besides cancer: infectious disease, trauma from accidents, child/maternal mortality, and so on. They’re confronting all these areas of healthcare, and the government is proactive in trying to increase their capacity to address all these issues.
PMO Dr Shulman, we cannot thank you enough for bringing your experience to us. We wish you all success with this endeavor and look forward to hearing of news of your next center.
Dr Shulman It was my pleasure. I will be glad to share more with you in the future as we continue our efforts. I cannot emphasize enough that it is the extraordinary team I am privileged to work with that is making this happen.
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