Cancer Care in Low-Resource Areas Cancer Treatment, Palliative Care, and Survivorship Care: Proceedings of a Workshop (2017) / Chapter Skim
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Proceedings of a Workshop
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. Effective cancer treatment approaches are also available and can reduce the morbidity and mortality due to cancer in low-resource areas.
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Patients in resource-constrained communities face delayed diagnoses of cancer, potentially resulting in progression to later stage cancers and worsened patient outcomes. In addition, social stigma, geopolitical issues, and cultural norms may limit access to adequate cancer care, including cancer prevention, early detection, and diagnosis; surgery, radiation, and drug-based cancer treatments; palliative care;2 and survivorship care.
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The workshop Statement of Task is located in Appendix A and the workshop agenda is in Appendix B The webcast and speakers' presentations are archived online.4 CANCER INCIDENCE AND MORTALITY TRENDS In the first workshop on cancer care in low-resource areas, a number of speakers discussed trends in cancer incidence and mortality in low-resource areas, both in the United States and internationally (see NASEM, 2016, for a more detailed discussion)
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U • esign clinical trials that fit community and patient needs. D (Adams-Campbell, Davis, Royce)
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• tilize the World Health Organization's Essential Medicines List U for cancer drugs for development of cancer control plans in low resource areas. (Shulman)
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(Anderson, Atun, Shulman) Deploying Policy Strategies to Improve Cancer Care in Low Resource Areas • everage public awareness and apply public pressure to L encourage government actions to improve cancer care (e.g., improve health system infrastructure, develop national cancer control plans, and ensure that all cancer patients have health care coverage)
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Michael Barton, professor of radiation oncology at the University of New South Wales in Australia, noted that global data demonstrate that the burden of cancer is increasing worldwide and that there are major geographic disparities in cancer incidence and survival (Ferlay et al., 2013)
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, Day reported. Olopade noted the significant state-to-state variability in breast cancer mortality among African Americans (State Cancer Profiles, 2017)
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, noted that disparities in colorectal cancer mortality rates among African Americans and whites have persisted for all stages of the disease (local, regional, and advanced) (Robbins et al., 2012)
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In the Valley, Schmeler said that cervical cancer rates are approximately 30 percent higher than in regions in Texas that do not border Mexico, and less than 10 percent of eligible women receive recommended cervical cancer screening. But Anderson added that the incidence of infection-related cancers (such as cervical, stomach, and liver cancers)
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Workshop speakers described infrastructure and workforce challenges across the spectrum of cancer care, including surgery, pathology, radiotherapy, medical oncology, and palliative care. For example, Anderson said that there needs to be a focus on how to deliver cancer
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Although cervical cancer screening programs exist there, many women with abnormal results do not receive follow-up and needed treatment because there is a lack of clinicians in the region, she said. Speakers also described a lack of patient navigation and psychosocial care services needed to support cancer care in low-resource areas.
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Global cancer surgery: Delivering safe, affordable, and timely cancer surgery, 1193-1224, Copyright (2017) , with permission from Elsevier.
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He described several ongoing initiatives to improve the quality of surgical care and to increase surgical capacity and research in low-resource areas, such as the African Research Group for Oncology Consortium,6 and SURCARE.7 Pathology Danny Milner, chief medical officer of the American Society for Clinical Pathology, described the critical importance of pathology in cancer treatment. Millner noted that without pathologists, clinicians may not be able to inform patients of their pathologic results, predict recurrence, or plan for additional therapy.
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This treatment could save approximately 1 million lives each year by 2035, and 2.5 million people could have local cancer control where they would not otherwise (Atun et al., 2015)
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But the United States has approximately 1,000 more linear accelerators than needed for the current population.8 "So if you are finding a shortage of radiotherapy in the U.S., it is because it is in the wrong place, not because you do not have enough," Barton said. If everyone with lung cancer received appropriate access to radiotherapy treatment, a modeling study found that there would be an 8.3 percent increase in 5-year local-regional control of lung cancer, 11.4 percent increase in 2-year overall survival, and a 4 percent increase in 5-year overall survival (Shafiq et al., 2016)
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Cancer Drug Therapy A number of speakers discussed the lack of cancer drug availability in low-resource areas, both in the United States and internationally.9 Lawrence Shulman, director of the Center for Global Cancer Medicine at the University of Pennsylvania Abramson Cancer Center, said the high cost of some cancer medicines is one of the reasons for their poor availability in low- and middle-income countries. For example, he calculated that in most countries in Africa, it would cost approximately $273 to treat a woman with hormone-receptor positive, human epidermal growth factor receptor 2 (HER2)
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Clinicians in low-resource areas also might not provide standard of care therapies; Olopade noted that when she worked in Nigeria 10 years ago, a common practice was to give women presenting with a breast lump tamoxifen, and women would be sent back to their village without surgical removal or biopsies to analyze whether it was cancer or whether the cancer would respond to the drug. Olopade added that adjuvant hormonal therapy among women with estrogen receptor–positive breast cancer can reduce mortality by 30 percent, but even in the United States, clinician prescribing rates varied (Daly et al., 2017)
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Providing personal protective equipment for the nurses and pharmacists who are mixing and administering the drugs is critical for their safety, he added. Palliative Care Marie Bakitas, associate director of the Center for Palliative and Supportive Care at the University of Alabama at Birmingham School of Nursing, and James Cleary, professor of medicine at the University of Wisconsin Carbone Cancer Center, reported that palliative care is inadequately addressed in low-resource areas, both globally and in the United States (see Figures 7 and 8)
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, including all members of interdisciplinary teams." A main component of palliative care is pain relief, but Cleary reported that there are disparities in access to opioid pain medications in the United States and globally. One study found that 42 percent of U.S.
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. Compared to white patients, African Americans are less likely to receive pain medicines in the emergency room (Singhal et al., 2016)
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Cleary added that the numerous restrictions on opioid pain medicines to prevent drug abuse present a major challenge to providing palliative care globally. Additional barriers in opioid use for pain relief in low-resource countries include a lack of training for appropriate use of opioid medicines, fear of addiction, limited financial resources or sources for opioids, cultural and social attitudes, fear of diversion, control measures for international trade, and onerous regulatory frameworks for opioids (International Narcotics Control Board, 2016)
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He added that in some African countries, there is a lack of appropriate blood-testing supplies and inadequate tests performed to determine blood type and compatibility. In one 1,500-bed hospital in Uganda, McCullough said that approximately one-third of the blood collected was used for blood transfusions in cancer patients.
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"Size matters when we look at the likelihood of palliative care being available in the community for most of our cancer patients," Bakitas said. Palliative care is less likely to be provided in the hospitals that are the sole community provider or in hospitals with fewer than 50 beds -- only 22 percent of hospitals with 50 beds or less in the United States provide palliative care (Morrison et al., 2015)
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She said that in a screening outreach program among the Hmong community in California, the women were highly receptive to undergoing breast cancer screening, but did not know where to go for a mammogram. The program was able to identify screening sites and arranged for translators at
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Olopade noted that sometimes navigation services are needed following cancer treatment in order to locate appropriate survivorship care. She said a number of breast cancer survivors in low-resource communities stop their hormonal treatment because they had difficulties getting appointments with their clinicians to manage the side effects of these medications.
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a financial navigator," she said. Villani added that social workers and psychologists can help with patients' psychological and emotional needs, and nutritionists can help advise patients on appropriate diets during their cancer treatment and survivorship care.
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. Another study found that 4 years after being diagnosed with non-metastatic breast cancer, 15 percent of African American women reported having medical debt compared with 9 percent of white women (Jagsi et al., 2014)
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. Karen Meneses, professor and associate dean at the University of Alabama at Birmingham, added that she has found that in rural areas in the United States, many older breast cancer survivors face significant financial burdens that impede them from acquiring the follow-up care they needed.
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Stephanie Petrone, executive director of medical operations at Novartis Oncology, agreed that "transportation is a key barrier for patients," especially for those in rural areas who wish to participate in clinical trials, which are usually conducted at major urban medical institutions or large community settings. Many of these clinical trials
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Villani reported that the Ralph Lauren Center for Cancer Care has a food pantry that provides low-income patients with groceries to help ensure they have adequate nutrition during their cancer treatment. Another challenge in some low-resource areas is food deserts, or places that lack stores providing healthy food options, including fruits and vegetables.
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Anderson stressed that "Awareness education might be the most important intervention we have in breast cancer. Women need 12 See https://www.cdc.gov/tuskegee/timeline.htm (accessed March 9, 2017)
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Cleary said that cultural beliefs can be a barrier to the use of opioid medications for cancer pain relief. Bakitas also noted that some people are mistrustful of hospice care and may incorrectly believe that the intent of palliative care is to deny people curative therapies.
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"Although many of our programs talk about palliative care, having that cultural perspective, which is so critical to becoming integrated into the community, is often lacking." Meneses said that a standard Spanish translation of educational outreach materials for Hispanic cancer survivors may not be sufficient, and noted that she has further tailored materials to address high-priority issues within a specific community, using culturally relevant terminology (Meneses et al., 2015)
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He noted that the International Cancer Expert Corps is a mentoring network of cancer professionals who work with local and regional in-country groups to develop and sustain expertise for better cancer care.13 Medical Physics for World Benefit also provides support to improve the safe and effective use of radiation and related technologies in medicine, especially in low- and middle-income countries.14 Barton said the International Atomic Energy Agency has established an eLearning platform called the Virtual University for Cancer Control (VUCCnet) , which has trained more than 500 African clinicians in cancer-related courses (IAEA, 2014b)
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"The whole goal is to de-monopolize knowledge from big university centers and bring it out to community providers," Schmeler said. Recognizing the high cervical cancer rates in southern rural Texas and the lack of clinicians available to treat women with cervical cancer and precursor lesions, the MD Anderson Cancer Center partnered with Project ECHO to provide telementoring and training.
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how much people want to learn and be able to provide these services locally in the community," she said. The MD Anderson Cancer Center's Project ECHO program recently expanded to include mentoring on cancer survivorship care, as well as mentoring clinicians providing cervical cancer, breast cancer, and palliative care in Latin America, Mozambique, and Zambia.
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Kaur noted that the Mayo Clinic has also led a virtual international palliative care symposium that was well attended, and has also partnered with clinicians in the Indian Health Service to provide palliative care among Native American populations. Task Shifting Olopade suggested that improved use of task shifting could increase the number of clinicians providing cancer care in low-resource areas.
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Jude Children's Research Hospital has developed regional training centers for nurses; she added that this approach can be done at low cost.16 Olopade suggested that primary care clinicians should be trained to prescribe and monitor hormonal therapies or to administer other drug therapies for cancer patients because primary care clinicians may have more contact with cancer patients in low-resource areas. She said that it was clear when working with primary care physicians on the south side of Chicago that the average primary care physician lacks knowledge that is essential for the care of their cancer patients.
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These partnerships can involve a number of individuals and organizations, such as clinicians, cancer centers, government agencies, nonprofit organizations, and industry. When creating partnerships to serve lowresource areas, Meneses suggested using the framework of communitybased participatory research, as was used in the Deep South Network
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for Cancer Control (see Box 6)
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One program, ThinkWell,a has partnered with six African Ameri can churches in the Birmingham area since 2014 and focuses on increasing awareness of the cognitive changes that may occur fol lowing breast cancer treatment as well as opportunities to improve self-management and healthy living for breast cancer survivors. a See http://www.thinkwell.tips (accessed April 27, 2017)
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. He added that the International Cancer Control Partnership,17 Pink Ribbon Red Ribbon,18 and Global Cancer and Non-Communicable Diseases Research Centers of Excellence, which are consortia of universities in high-, middle-, and low-income countries, are also actively involved in partnerships to improve cancer care in lowresource areas.
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The clinicians who provided surgery, if needed, were paid field workers from PIH. If other cancer treatment was needed, clinical oncologists donated their time to provide the care.
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But this type of partnership requires a working lab with the technicians and supplies, Milner added. Partnerships to Increase Access to Palliative Care Several speakers discussed partnerships focused on palliative care in low-resource areas, including Patient Care Connect, Project ENABLE, and International Pain Policy Fellowship program (see Box 8)
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. Project ENABLE Project ENABLE, which stands for Educate, Nurture, Advise Before Life Ends, is a telehealth model of palliative care developed in New Hampshire and Vermont.
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. The International Pain Policy Fellowship James Cleary, professor of medicine at the University of Wisconsin Carbone Cancer Center, discussed the International Pain Policy Fellowshipb program, which is intended to improve access to opioid pain medicines for palliative care in low- and middle-income countries.
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The Foundation has developed the licensing and network distribution capacities to deliver these medicines, and also plans to use this strategy to increase access to diagnostics in low-resource areas, Garcia-Gonzalez said. Petrone also reported on the Novartis Access Program, which provides 15 of its drugs, both on and off patent, for cardiovascular disease, diabetes, respiratory disease, and breast cancer to governments, nongovernmental organizations, and other public-sector customers in low- and lower-middle-income countries at the cost of one U.S.
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Increasing Access to Clinical Trials in Low-Resource Areas Several speakers said that although clinical trials are used to establish guidelines for cancer treatment, clinical trial participants often are not representative of the populations who receive cancer therapies. Shulman said that few patients with cancer participate in clinical trials, and trial participants tend to be healthier and less diverse.
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Instead, community oncologists can refer their patients to an academic center or to an NCI-designated cancer center to participate in clinical research. However, patients from rural areas or small community practices may not opt to participate in clinical trials, because they may need to travel long distances numerous times over the course of the trial.
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She said that there are appropriate treatments for women with aggressive breast cancers but she added that "nobody is going to get these therapies in low-resource sectors if they cannot have the appropriate diagnosis that gives the right treatment to the right patient." She added that most genomic work on cancer has been conducted in people with European descent, and that more genomic research needs to be conducted in other populations. of community cancer practices, Novartis has established a hotline for research-qualified clinicians in order to rapidly enroll their patients in several Novartis-sponsored clinical trials within their practice.
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Community oncologists also agreed to enroll a minimum number of patients for the trial and to participate in monthly clinical trial meetings. Ochoa noted this agreement worked well, and used it as a basis when combining two minority-based Community Clinical Oncology Programs and a National Comprehensive Cancer Control Program Examples of Benefits and Lessons Learned from Partnerships A number of speakers involved in partnerships to improve access and quality of cancer care in low-resource areas shared lessons they had learned from these experiences, such as the need to • Assess community readiness and identify champions (Cleary, Milner, Ochoa, Schmeler, Vikram)
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Ochoa noted that the community oncologists also found that more of their patients were opting to be treated in their own communities rather than at academic cancer centers, because they had access to innovative cancer clinical trials in the community setting. Community oncologists were also able to partner with academic oncologists to manage patients with complex diseases.
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It was created to address disparities in access to clinical trials, to increase clinical trial efficiency, and to improve cancer care in the state (New Mexico Cancer Care Alliance, 2012)
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Prior to the Alliance, it took the University of New Mexico Comprehensive Cancer Center more than 25 weeks to activate a clinical trial, but an analysis completed in 2014 found that by centralizing many of the processes, the Alliance decreased the time-to-activate trials almost in half, to approximately 14 weeks. Goals, metrics, and performance indicators are measured at each site.
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Milner suggested that collaboration with Ministries of Health is needed to ensure there is a national cancer plan in place and that this plan, and the program one is trying to institute, will be feasible. Schmeler agreed and added "if cancer is not on the agenda of the Ministries of Health wherever we are working, then that is a problem." She said that she and her colleagues participate actively in cancer control planning by working with Ministries of Health and the NCI Center for Global Health to assist countries in the development of cancer control plans.
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, said the consortium created a comprehensive statewide screening, treatment, and advocacy program with the goal of improving colorectal cancer outcomes and eliminating health disparities. State funding was allocated to pay for the costs of cancer screening and cancer treatment costs.
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However, "once you have achieved what you want to achieve, continuing to sustain it requires a lot of effort." In recent years, Grubbs noted that colorectal cancer screening rates among African Americans have begun
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PROCEEDINGS OF A WORKSHOP 59 at a statewide level, but to do so requires overcoming barriers using a combination of strategies, including patient navigation, marketing and outreach, insurance coverage, and availability for testing and treatment. FIGURE Colorectal cancer screening rates in Delaware increased by 35 percent among whites and 45 percent among African Americans from 2002 to 2014.
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Adams-Campbell stressed the importance of using peers in cancer interventions. She said participants appreciate the involvement of fellow breast cancer survivors as coaches in a survivorship program; these peers can encourage each other to increase their physical activity and eat more healthy foods, for example.
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For another exercise program for breast cancer patients receiving radiation treatment, Adams-Campbell provided an exercise apparatus that enabled women to peddle while sitting in a chair for 15 minutes at the hospital either before or after their radiation treatment (Dash et al., 2016)
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For a breast cancer survivorship program in Florida, for example, she tailored an intervention originally designed for an urban cancer center to better meet the needs of a rural, Spanish-speaking community. For another program offered to a predominantly Latina community of breast cancer survivors, Meneses added educational resources on how to address the needs of their children and spouses after having conversations with this population about what their needs were.
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"It is really great for residents and we improve our own diagnostic processes," he said. Darien added that "one of the deepest relationships I formed was with a breast cancer survivor from Uganda.
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As mentioned previously, Schmeler discussed the use of telementoring to improve access to cancer care, as well as to build workforce capacity and expertise in a low-resource settings. Barton added that "a lot can be gained by shifting out much of the quality components of cancer care, particularly of radiotherapy, so that they are done remotely.
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Jaffray agreed, adding that at a recent meeting of the European Council for Nuclear Research, experts discussed making a linear accelerator that was more adaptable and accessible for low- and middle-income countries. He noted that solar technology could also be used to power radiation therapy accelerators.
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Jaffray suggested using software systems that automate radiotherapy treatment planning. Such systems have been shown to improve the quality of radiation therapy treatment planning for breast cancer, while 21 Personal communication, Elizabeth Morgan, Brigham and Women's Hospital.
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.22 Some interventions, such as breast cancer surgery, were ranked as basic or fundamental services that are needed for any breast health care system to function effectively. Limited-level, or second tier resources, were those that would make significant improvements in mortality, and many cancer drug therapies would be considered limited-level resources, Anderson said.
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Essential Medicines and Priority Medical Devices Shulman said that the WHO has developed an Essential Medicines List for cancer treatment in order to provide public sector officials with information on medicines that are essential to cancer control planning. "The list helps governments and ministries decide what to purchase for their countries," Shulman noted.
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responded to the WHO invitation to convene a team charged with creating a new framework for evaluation of cancer drugs included on the Essential Medicines List. More than 90 international volunteers participated, including Core Task Team members from UICC, the NCI, the European Society for Medical Oncology, ASCO, Societe Internationale d'Oncologie Pediatrique, Dana-Farber Cancer Institute, and NCCN International.
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In 2014, the WHO's Palliative Care Resolution explicitly stated that collaborative action was needed to ensure adequate supply of essential medicines, including opioids, in palliative care and to avoid shortages. This resolution recommended revising, where appropriate, national and local legislation and policies for controlled medicines aimed at improving access to and rational use of pain management medicines.
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But he stressed that "Each country has its laws associated with it and there is no cookie-cutter model of doing it. You have to figure out each country's laws and process and from where they originated." Gina Villani, chief executive officer and medical director of the Ralph Lauren Center for Cancer Care pointed out how difficult it is to prescribe opioid medicines for cancer-related pain in low-resource areas in the United States.
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"it would be great if there was a worldwide clearinghouse for generic drugs." Turkan Gardenier, director of research at Pragmatica Corporation, asked if there were any planned efforts to provide access to immunotherapies in low-resource countries. Shulman said that these cancer treatments were introduced only recently in the United States and other high-resource countries, and that clinicians are still experiencing a learning curve on how best to use them, monitor response, and manage toxicities, and did not think that immunotherapies will likely be used extensively in low- and middle-income countries unless there was some way of addressing their extremely high cost.
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If we are going to increase the kinds of treatment we deliver, they have to be tied with good quality-of-life outcomes," Rowland said. Bakitas agreed that "globally the focus on improving quality-of-life outcomes needs to be the primary goal and at the forefront of concern, not just for the patient, but for their family caregiver as well." Nursing Standards Day stressed that a lack of high-quality nursing care is a major impediment to successful pediatric cancer treatment in low-income countries and contributes to low childhood cancer survival rates.
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6. vidence-based pediatric oncology nursing policies and E procedures should guide the delivery of quality nursing care.
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Several international groups have endorsed these standards, including Childhood Cancer International, the Pakistan Society of Pediatric Oncology, World Child Cancer, and the Irish Cancer Society, Day reported. She and her colleagues are currently developing an instrument to assess how well the standards are being followed at various facilities.
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. BOX 15 Conveying the Urgency in Addressing the Global Cancer Burden Rifat Atun, professor of global health systems at the Harvard University T.H.
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"It was a very compelling case for donors who needed to choose among very different priorities," Atun said. Lawrence Shulman, director of the Center for Global Cancer Medicine at the University of Pennsylvania Abramson Cancer Cen ter, and Benjamin Anderson, chair and director of the Breast Health Global Initiative at the Seattle Cancer Care Alliance, voiced concern that encouraging investment in cancer care may be more complex and difficult, compared to acquiring funding for infectious disease epidemics or natural disasters.
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Eduardo Cazap, president of the Latinamerican & Caribbean Society of Medical Oncology, stressed that improving investments for cancer care in low-resource areas is not solely a question of money, but how that money is allocated. He noted that some low- and middleincome countries -- including Costa Rica, Morocco, Singapore, and Uruguay -- have developed good cancer control plans based on properly allocating existing resources.
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"To channel funding into new areas, one has to look for new innovative sources of financing," Atun said, and suggested that innovative financing tools that mobilize, pool, channel, and allocate resources will be the primary mechanisms to address the global cancer burden. The Global Fund to Fight AIDS, Tuberculosis and Malaria, the Global Alliance for Vaccines and Immunization, and UNITAID are examples of innovative funding mechanisms, Atun said.
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28 See http://www.undp.org/content/dam/undp/library/Poverty%20Reduction/ Development%20Cooperation%20and%20Finance/InnovativeFinancing_Web%20ver.pdf (accessed April 3, 2017)
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However, speakers noted that this strategy has not been without controversy, as some have asserted thatcancer prevention and screening efforts may have a greater impact on reducing the burden of cancer and are more cost effective than cancer treatment in low-resource areas (Shastri and Shastri, 2014)
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As Atun mentioned previously, none of the Millennium Development Goals are tied to reducing the global cancer burden. Cazap also noted that the only globally agreed upon treaty aimed at cancer control is the Framework Convention on Tobacco Control.
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Cazap noted that relying on national plans and policies may be insufficient in many countries, because some governments may have poor accountability, inadequate monitoring, corruption challenges, and a lack of critical institutions. To facilitate change, Cazap highlighted a suggestion from the World Oncology Forum -- to apply public pressure to encourage government actions, including the creation of and adherence to national cancer control plans and international cooperation to address the global cancer burden (World Oncology Forum, 2013)
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, and without [them] , nothing will happen." Anderson suggested making global cancer surgery a higher priority in national cancer control plans.
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Anderson also pointed out that in order for policy makers to improve cancer outcomes in their countries, data on outcomes need to be collected routinely, but this often is not done in low-resource countries. Atun, Jaffray, and their colleagues have used data to make a business case for investing in radiotherapy for cancer treatment.
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Cazap also reported that advocacy by Princess Lalla Salma, the queen of Morocco, has been instrumental to a number of achievements in cancer control, including establishment of cervical and breast cancer screening, pediatric oncology, and tobacco control programs. Morocco has also created and equipped comprehensive cancer centers, trained practitioners, and developed a cancer registry.
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He added that there are unmet cancer care needs across all treatment modalities (surgery, radiation therapy, and drug therapy) , as well as with palliative and survivorship care.
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Larson emphasized the need to better integrate palliative care throughout the cancer care continuum and improve access to it, especially in rural areas. "We need to address policy and legal factors that limit appropriate access to opioid medications to relieve cancer-related pain," he said.
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2009. Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: The Project Enable II randomized controlled trial.
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2014. Optimisation of the continuum of supportive and palliative care for patients with breast cancer in low income and middle-income countries: Executive summary of the Breast Health Global Initiative.
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2016. Integration of palliative care into standard oncology care: American Society of Clinical Oncology clinical practice guideline update.
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2015. Neighborhood disadvantage, physical activity barriers, and physical activity among African American breast cancer survivors.
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2017. Pathways between physical activity and quality of life in African-American breast cancer survivors.
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2014. Barriers to physical activity among African American breast cancer survivors.
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2011. Barriers and opportunities for early detection of breast cancer in Gaza women.
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2010. Early Palliative Care with Metastatic Non-Small Cell Lung Cancer.
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2014. Strengthening of palliative care as a component of comprehensive care throughout the life course.
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