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Cancer survivors: living longer, and now, better
Editorial
Cancer survivors: living longer, and now, better
www.thelancet.com Vol 364 December 18/25, 2004
and how to act as advocates. Preventing or delaying second cancers and recognising late effects of cancer treatment will be emphasised. New clinical practice guidelines focusing on related issues will be developed. Other areas of the task force’s work include identifying new research needs, and issues specific to survivors of childhood cancer. The US Centers for Disease Control and Prevention has also collaborated with the LAF on a national action plan for cancer survivors, using a public-health approach. The plan recommends ten strategies to address survivors’ needs, emphasising evaluation, research, education, and policy. Unfortunately, some of these goals sound mind-numbingly bureaucratic and are replete with mysterious marketing jargon, such as “develop, test, maintain, and promote patient navigation systems that can facilitate optimum care for cancer survivors”. Not sure what a patient navigation system is? It is a programme involving “health professionals and highly trained patient liaison representatives”, otherwise known as the “navigators”. Apparently, these programmes can be developed and maintained only if they “promote universal input and buy-in by having patient navigation systems co-branded and co-owned by all appropriate organizations”. Is that clear to you? What is clear to us is that nonsensical verbiage like this will do very little to help cancer survivors. The ASCO task force is on the right track, especially in changing the curriculum for oncologists. Doctors need to ask specific questions about the emotional, psychological, and social issues of cancer survivors. The goal is not necessarily to be the one who can fix all those problems, but, as in any clinical setting, to provide support and referral to those who can. This simple strategy would go a long away towards ensuring that cancer survivors do not slip through the cracks. As Julia Rowland, director of the US National Institutes of Health Office of Cancer Survivorship, has said, “It’s not enough to say there are problems; tell us what you’re going to do about them”. Many of the unmet needs of cancer survivors are related to ordinary challenges of living, albeit after extraordinary circumstances. What is new is that so many patients with cancer are able to turn their attention to these
Rights were not granted to include this image in electronic media. Please refer to the printed journal. AP
Over the past few decades, improvements in cancer diagnosis and treatment have produced a welcome result: the number of people surviving cancer has dramatically increased. In the USA alone, those living with cancer have tripled since 1971, and that number is increasing by 2% each year. Cancer, like several other serious diseases, is no longer an automatic death sentence. But that positive development has brought with it new problems that until now have gone largely undiscussed. Once the medical aspects of the disease itself have been dealt with, then what? Can patients just pick up the pieces of their life before cancer and carry on as if nothing had happened in the interim? New evidence suggests not. A recent survey of US cancer survivors by the Lance Armstrong Foundation (LAF) showed that half of them have continuing unmet needs. They reported that the non-medical aspects of having cancer, including depression and fear of recurrence, physical side-effects of treatment or secondary effects of disease (such as chronic pain, infertility, and sexual dysfunction), and financial worries and employment problems, often posed greater challenges than cancer itself. 43% reported decreased income, a quarter said they had incurred debt, and almost a third said they had faced demotion, lack of advancement, or even job loss as a result of their illness. These survivors also said they lacked resources for emotional needs, with most (78%) having not sought help from anyone who might have provided psychological or social support. Most worryingly, half the respondents said their oncologists either offered no support in dealing with the non-medical aspects of having cancer, or, though willing to discuss them, did not have enough information or experience to help. In response, the American Society of Clinical Oncology (ASCO) has formed a task force to improve care for cancer survivors. The task force will focus on several initiatives, including changes to the core curriculum for oncology trainees. A revised curriculum will address follow-up care, prevention of and screening for second cancers, and monitoring of short-term and long-term toxicity. Crucially, it will include psychosocial and employment issues, filling what is evidently a wide gap. Trainees will learn about best practices for informing and educating patients,
Lance Armstrong, a cancer survivor and advocate
2153
Editorial
matters, instead of the stark issues of life and death. So let us have some plain-language, common-sense strategies to address them. And what of those who are not lucky enough to have the problem of survivorship? In many areas of the world, a life after cancer is not even on the radar screen. But instead of viewing survivorship as a
problem to be faced far down the road, why not take a lesson from this gaping hole in care, and institute changes in education, training, and policy now? Contemporary cancer care is saving unprecedented numbers of lives. Now is the time to translate that same high level of care into a correspondingly high quality of life. ■ The Lancet
Opportunities for Africa: creating an “H20” No other high-income country in recent years has put Africa at the top of its international priorities like the UK. As Britain assumes the Presidency of the G8 on Jan 1, 2005, it is poised to make the results of its Commission for Africa the centrepiece of next year’s meeting in Scotland (Jul 6–8, 2005). The Commission for Africa has 17 members, nine of whom are themselves from that continent. The objectives seem ambitious: to generate new ideas, to support existing projects (eg, the New Partnership for African Development), to deliver on past global commitments, to offer a “positive perspective for Africa”, and to listen to African voices. These aims are perfectly worthy. But as 2005 approaches, the Commission’s work has done little more than to précis—and incompletely at that—the work of previous conferences and conventions. In November, the Commission published its first consultation document. It is weak and disappointing in scope and originality. The Commissioners identify three often repeated areas for action: on governance, peace, and security; on human development, culture, and inclusion; and on opportunity, growth, aid, and debt relief. Health makes up only a small component of the Commission’s ideas. Two priorities are cited: HIV/AIDS and health systems. For HIV/AIDS, for example, donors are urged to support the Global Fund to fight AIDS, Tuberculosis and Malaria, to focus on prevention, and to meet WHO’s goal of “3 by 5”— three million people receiving antiretroviral treatment by the end of 2005. Nothing new here. What is striking about the first phase of the Commission’s work is its lack of engagement with
2154
parallel processes in international development— notably, the Millennium Project (a review of progress towards the Millennium Development Goals). This failure to integrate with other initiatives has led to several gaps in the Commission’s work. Child health is absent. The failure of UNICEF to meet the challenge of child survival surely obliges the Commission to take this issue especially seriously. Where is malaria? As Bob Snow and Nick White wrote on Dec 3 to the UK Chancellor, Gordon Brown, one of Blair’s Commissioners, cost-effective interventions, such as mosquito nets and artemisinin-based combination drugs, could dramatically reduce the burden of malaria. The Commission’s consultation document is silent on both counts. The central argument that must be embraced by the Commission for Africa, if it is to have any force at all, is clear: health is the foundation stone for human development. To embed this analysis within international political agendas demands a new mechanism to advance health and development goals. The UK’s Africa Commission must support the notion of an “H20”—a forum of health ministers from the Group of Twenty (G20) nations. Canada’s new Minister of Health, Ujjal Dosanjh, first proposed this idea several months ago. An H20 would help shape policies and priorities at G8 and G20 levels. It would represent the kind of geopolitical step-change to the development process that has so far eluded individual governments and even intergovernmental agencies. If the UK could deliver an H20 to the world, that single outcome would be a huge achievement. Does it have the courage to do so? ■ The Lancet
www.thelancet.com Vol 364 December 18/25, 2004
Cancer survivors: living longer, and now, better
www.thelancet.com Vol 364 December 18/25, 2004
and how to act as advocates. Preventing or delaying second cancers and recognising late effects of cancer treatment will be emphasised. New clinical practice guidelines focusing on related issues will be developed. Other areas of the task force’s work include identifying new research needs, and issues specific to survivors of childhood cancer. The US Centers for Disease Control and Prevention has also collaborated with the LAF on a national action plan for cancer survivors, using a public-health approach. The plan recommends ten strategies to address survivors’ needs, emphasising evaluation, research, education, and policy. Unfortunately, some of these goals sound mind-numbingly bureaucratic and are replete with mysterious marketing jargon, such as “develop, test, maintain, and promote patient navigation systems that can facilitate optimum care for cancer survivors”. Not sure what a patient navigation system is? It is a programme involving “health professionals and highly trained patient liaison representatives”, otherwise known as the “navigators”. Apparently, these programmes can be developed and maintained only if they “promote universal input and buy-in by having patient navigation systems co-branded and co-owned by all appropriate organizations”. Is that clear to you? What is clear to us is that nonsensical verbiage like this will do very little to help cancer survivors. The ASCO task force is on the right track, especially in changing the curriculum for oncologists. Doctors need to ask specific questions about the emotional, psychological, and social issues of cancer survivors. The goal is not necessarily to be the one who can fix all those problems, but, as in any clinical setting, to provide support and referral to those who can. This simple strategy would go a long away towards ensuring that cancer survivors do not slip through the cracks. As Julia Rowland, director of the US National Institutes of Health Office of Cancer Survivorship, has said, “It’s not enough to say there are problems; tell us what you’re going to do about them”. Many of the unmet needs of cancer survivors are related to ordinary challenges of living, albeit after extraordinary circumstances. What is new is that so many patients with cancer are able to turn their attention to these
Rights were not granted to include this image in electronic media. Please refer to the printed journal. AP
Over the past few decades, improvements in cancer diagnosis and treatment have produced a welcome result: the number of people surviving cancer has dramatically increased. In the USA alone, those living with cancer have tripled since 1971, and that number is increasing by 2% each year. Cancer, like several other serious diseases, is no longer an automatic death sentence. But that positive development has brought with it new problems that until now have gone largely undiscussed. Once the medical aspects of the disease itself have been dealt with, then what? Can patients just pick up the pieces of their life before cancer and carry on as if nothing had happened in the interim? New evidence suggests not. A recent survey of US cancer survivors by the Lance Armstrong Foundation (LAF) showed that half of them have continuing unmet needs. They reported that the non-medical aspects of having cancer, including depression and fear of recurrence, physical side-effects of treatment or secondary effects of disease (such as chronic pain, infertility, and sexual dysfunction), and financial worries and employment problems, often posed greater challenges than cancer itself. 43% reported decreased income, a quarter said they had incurred debt, and almost a third said they had faced demotion, lack of advancement, or even job loss as a result of their illness. These survivors also said they lacked resources for emotional needs, with most (78%) having not sought help from anyone who might have provided psychological or social support. Most worryingly, half the respondents said their oncologists either offered no support in dealing with the non-medical aspects of having cancer, or, though willing to discuss them, did not have enough information or experience to help. In response, the American Society of Clinical Oncology (ASCO) has formed a task force to improve care for cancer survivors. The task force will focus on several initiatives, including changes to the core curriculum for oncology trainees. A revised curriculum will address follow-up care, prevention of and screening for second cancers, and monitoring of short-term and long-term toxicity. Crucially, it will include psychosocial and employment issues, filling what is evidently a wide gap. Trainees will learn about best practices for informing and educating patients,
Lance Armstrong, a cancer survivor and advocate
2153
Editorial
matters, instead of the stark issues of life and death. So let us have some plain-language, common-sense strategies to address them. And what of those who are not lucky enough to have the problem of survivorship? In many areas of the world, a life after cancer is not even on the radar screen. But instead of viewing survivorship as a
problem to be faced far down the road, why not take a lesson from this gaping hole in care, and institute changes in education, training, and policy now? Contemporary cancer care is saving unprecedented numbers of lives. Now is the time to translate that same high level of care into a correspondingly high quality of life. ■ The Lancet
Opportunities for Africa: creating an “H20” No other high-income country in recent years has put Africa at the top of its international priorities like the UK. As Britain assumes the Presidency of the G8 on Jan 1, 2005, it is poised to make the results of its Commission for Africa the centrepiece of next year’s meeting in Scotland (Jul 6–8, 2005). The Commission for Africa has 17 members, nine of whom are themselves from that continent. The objectives seem ambitious: to generate new ideas, to support existing projects (eg, the New Partnership for African Development), to deliver on past global commitments, to offer a “positive perspective for Africa”, and to listen to African voices. These aims are perfectly worthy. But as 2005 approaches, the Commission’s work has done little more than to précis—and incompletely at that—the work of previous conferences and conventions. In November, the Commission published its first consultation document. It is weak and disappointing in scope and originality. The Commissioners identify three often repeated areas for action: on governance, peace, and security; on human development, culture, and inclusion; and on opportunity, growth, aid, and debt relief. Health makes up only a small component of the Commission’s ideas. Two priorities are cited: HIV/AIDS and health systems. For HIV/AIDS, for example, donors are urged to support the Global Fund to fight AIDS, Tuberculosis and Malaria, to focus on prevention, and to meet WHO’s goal of “3 by 5”— three million people receiving antiretroviral treatment by the end of 2005. Nothing new here. What is striking about the first phase of the Commission’s work is its lack of engagement with
2154
parallel processes in international development— notably, the Millennium Project (a review of progress towards the Millennium Development Goals). This failure to integrate with other initiatives has led to several gaps in the Commission’s work. Child health is absent. The failure of UNICEF to meet the challenge of child survival surely obliges the Commission to take this issue especially seriously. Where is malaria? As Bob Snow and Nick White wrote on Dec 3 to the UK Chancellor, Gordon Brown, one of Blair’s Commissioners, cost-effective interventions, such as mosquito nets and artemisinin-based combination drugs, could dramatically reduce the burden of malaria. The Commission’s consultation document is silent on both counts. The central argument that must be embraced by the Commission for Africa, if it is to have any force at all, is clear: health is the foundation stone for human development. To embed this analysis within international political agendas demands a new mechanism to advance health and development goals. The UK’s Africa Commission must support the notion of an “H20”—a forum of health ministers from the Group of Twenty (G20) nations. Canada’s new Minister of Health, Ujjal Dosanjh, first proposed this idea several months ago. An H20 would help shape policies and priorities at G8 and G20 levels. It would represent the kind of geopolitical step-change to the development process that has so far eluded individual governments and even intergovernmental agencies. If the UK could deliver an H20 to the world, that single outcome would be a huge achievement. Does it have the courage to do so? ■ The Lancet
www.thelancet.com Vol 364 December 18/25, 2004