Q &A with LIVESTRONG CEO
1. Last year you were instrumental in organising the LIVESTRONG Global Cancer Summit in Dublin. What message did you take from the 500 Dublin delegates to last month’s Cancer Congress in Shenzhen?
Since the launch of the LIVESTRONG Global Cancer Campaign we have engaged the global cancer community by disseminating a call for action. We have asked leaders, advocates, organisations, corporations, survivors and communities to make a commitment to the fight against cancer in a formal capacity and we have made some incredible progress.
The Summit helped turn the eyes of the public health community towards the global cancer burden. By sharing best practices and cross-cultural collaboration among stakeholders, LIVESTRONG facilitated the creation of powerful partnerships and catalysed individual efforts at a whole new level.
We want people to know that collaboration is not just beneficial in theory, it actually works. It allows the cancer community to have more impactful results by galvanizing efforts already underway and avoiding duplication.
2. Do you think there is enough space for civil society voices to be heard in the cancer battle?
Absolutely. We cannot win this battle without a coordinated effort from civil society. The fight against cancer is enormous and civil society plays a large role in addressing cancer as a public health issue. We work with several organisations in our efforts to make cancer a global priority and together we are pushing government entities for transformational change and asking them to be accountable for combating what will soon become the world’s largest killer.
3. Experience has taught us that unless we have political will and commitment, the road is very steep. How hard is it to get political commitment, especially in high burden countries?
It can definitely be a challenge to ensure that any issue becomes a priority for government leaders. All countries are faced with competing priorities, particularly in challenging economic times. This is why grassroots engagement is so important. We have found that a mobilised constituency is the surest way to affect change.
4. LIVESTRONG started out in the US, but you have spread your wings, could you share with us what your activities are and have been beyond US borders?
We have rolled out our Global Cancer Campaign on several fronts:
· We are activating a grassroots campaign to encourage the growth of a global movement to make cancer a global priority.
· We are engaging in targeted political advocacy to increase investments in and commitment to cancer control.
· We are partnering with local organisations and key partners in target countries to improve access to care for people affected by cancer.
At an overarching level, we have also been working with the WHO to increase awareness of the global cancer burden and we are working closely with the greater non-communicable disease community towards a strategic and engaged effort in preparation for the 2011 United Nations Non-communicable Disease Summit.
This year, we launched two pilot projects in South Africa: an anti-stigma initiative and the Survivor Empowerment Initiative. Both campaigns are working in partnership with local organisations to raise awareness of the local cancer burden, empower cancer survivors and help remove significant barriers to care and treatment. If evaluation of these pilot projects reveals positive outcomes, we hope to create replicable models that produce transformative change and implement them in other parts of the world.
We have also been working in close partnership with the Harvard Global Equity Initiative, Dana Farber Cancer Institute, Harvard Medical School and the Harvard School of Public Health on the newly created Global Task Force for Expanded Access to Cancer Care and Control in the developing world through both negotiating lower drug prices and illustrating feasibility of treatment for rural populations in Haiti, Malawi, Rwanda, Mexico and Jordan.
5. Could you speak more about your involvement in South Africa and what the spin off has been from Lance Armstrong’s visit to the country earlier this year?
Lance’s visit marked the launch of our Global Campaign in South Africa. We are working with the American Cancer Society and Campaigning for Cancer on the Survivor Empowerment Initiative, which brings together decision makers, clinicians, media, advocates and survivors to work towards a system of care that puts the survivor first.
We are also working closely with John Snow, Inc. and local cancer organisations on our anti-stigma initiative, which will raise awareness about cancer and the stigma associated with it at the national and community level by disseminating targeted messages through survivor stories. We are seeking to find a sustainable and impactful way to empower survivors and lift barriers to treatment and care. If we are successful, these demonstration projects can serve as the base for building replicable models in other places in the world.
6. How hard is it to get decision makers, funders, politicians and others to listen to the cancer message in a world dominated by HIV/AIDS?
It has definitely been a challenge, but as I mentioned before all countries are faced with competing priorities and we recognise that. We know that cancer kills more people each year than AIDS, tuberculosis and malaria combined and the developing world is currently facing a massive increase in cancer rates. In fact, by 2030 it is estimated that developing nations will suffer 27 million new cancer cases and 17 million cancer deaths, but despite these alarming projections, this crisis has yet to rise to the top of the global health agenda. It is our goal to change that.
7. Those working in HIV/AIDS are fighting a battle to keep the funding levels up as funding decreases and it reversed on many fronts. What has your experience been?
Cancer has not yet risen to the top of the global agenda, but increased investment is crucial. Recent studies show the economic cost of cancer is escalating rapidly, meaning the private sector has a stake in this fight as well. A great deal of opportunity exists for the cancer community to make progress through public-private partnerships, which have already proven to be successful in many ways.
We are confident in the ability to successfully treat cancer in developing countries because we know from the global health community’s experience in combating HIV and AIDS that there is hope for significant improvements. Recent innovations have led to unprecedented levels of access to vaccines and effective treatments. As a result, millions of lives have been saved from infectious diseases, and many more can be saved if we apply what we’ve learned to cancer.
8. In Africa, there are many challenges – we are battling an HIV epidemic, high levels of maternal and infant mortality, malnutrition…the list is long…how hard is it for cancer to find a place on the agenda of political leaders on the continent?
There is a significant challenge in Africa, just as there is in the rest of the world, because for the last several decades the public health arena has been focused on communicable diseases. However, the evidence illustrating a significant cancer burden in Africa is irrefutable and the global health community needs to work together to implement a health system that doesn’t silo treatment and care by disease, but rather focuses on opportunities to care for patients in a holistic manner. With leadership already beginning to target cancer, such as the Forum of African First Ladies Against Breast and Cervical Cancer, we are on the right path; yet, there is still significant political will that needs to be garnered in order to make cancer a top health priority in Africa.
9. Experts are saying that tobacco control offers us an opportunity to prevent a disaster in Africa, but the window of opportunity will not be there for long….what are your thoughts on the potential of tobacco control when fighting cancer?
I believe that we must take advantage of what we already know about preventing and controlling cancer, which means we need unified policies to reduce the use of tobacco products. A 2003 study on tobacco control policy by the World Bank shows tobacco prevalence can be reduced cost-effectively in high-, middle- and low-income countries.
10. The South African health minister has indicated that he would like our country’s health system to be overhauled. He states that currently we have a health system where doctors and nurses sit in hospitals waiting for sick people to come to them. He says we should be pouring resources into preventing disease in the first place – preventing cancer and other chronic diseases. Your thoughts?
Prevention is a crucial piece of the puzzle, but an integrated strategy to combat cancer and other chronic disease means also treating those currently in need and providing pain and palliative care.
The issues in South Africa, as we have begun to learn in our recent work there, are complicated.
We believe that globally, cancer control requires a multifaceted approach, prevention included. For example, by combating the stigma associated with cancer, we can raise awareness of the disease and encourage healthy behaviors. Education around stigma will also help those who may have cancer to seek treatment earlier, likely improving treatability of the disease and thus the prognosis.
Improvements in the science of cancer treatment have made it possible to treat even rural populations; we just need to implement programs in a way that takes into account all treatment barriers including financial, emotional, logistical and practical concerns. Provision of pain management and palliative care is critical as well. It is inhumane to allow suffering when we know how to cope with it. We can make many arguments, especially about the cost effectiveness of focusing on just one component, but each piece is necessary.
11. How can investing in cancer control, prevention and treatment benefit weak health systems in Africa?
LIVESTRONG is just beginning to learn the root of the issues in the health sector in Africa and we are working with our local partners in South Africa to support their efforts based on their knowledge and expertise in the field. Generally, by strengthening existing health systems with a holistic and comprehensive cancer control strategy, we can layer existing resources with new resources and avoid duplication of efforts. We have heard repeatedly from our partners who have been working in South Africa for some time that a vertical structure for providing health services does not maximize benefits to communities.
12. Lance Armstrong has been a powerful example of how cancer can be beaten and why we should be investing in the disease….How important are high profile ambassadors in fighting a disease such as cancer?
Ambassadors play a crucial role in the fight against cancer. When high profile people become cancer activists, using their voices and public platforms to inspire individuals and rally global support for the disease – their reach is unparalleled. They can help with so many aspects of the fight from reducing stigma to encouraging prevention to letting people know cancer is not a death sentence.
13. You have spoken passionately about the need to make pain control accessible. How do you feel when you hear many people have no access to basic pain medication? How can we make sure we are able to make it accessible?
This is a basic human rights issue that is larger than just the cancer community or even the public health community. As a society, we cannot tolerate indifference to pain. Most of the world’s population lacks access to opioid medications, especially in low- and middle- income countries where cancer is often diagnosed at the late stage when pain is severe. As our partners at the Pain and Policy Studies Group at the University of Wisconsin, Madison have stated, “unduly strict national drug control policies are increasingly recognized to be among the most significant barriers to patient access to opioid analgesics for palliative care, especially in the developing world. These policies have become outdated as the science of pain has evolved and as chronic diseases have increased. Consequently, more and more patients, especially in the developing world, lack access to the opioid analgesics that major bodies like the WHO have designated as essential medicines.”
Today, the majority of drug regulatory authorities argue that most pain could be relieved if relatively inexpensive opioid analgesics were adequately available and accessible. The global health community needs to work together to create policies that promote access to pain medications, including creating adequate distribution systems and instituting training and education.
14. The HIV movement has had success in making expensive drugs accessible in the developing world…what can we learn from them in making pain medication available? Is sustainable access an issue?
We learned from the HIV movement that public-private partnerships and new ways of thinking about financing and procurement were successful in making expensive drugs accessible – we need to apply the same ideas to all cancer treatment, including pain control. If we work with local partners – including national governments and local hospital officials – to create cancer care programs and to streamline diagnostics and procurement of medicines, sustainability should not be a problem. As my colleagues on the Global Task Force recently said in The Lancet, “Experience has shown that much can be done to prevent and treat cancer by deployment of primary and secondary caregivers, use of off-patent drugs, and application of regional and global mechanisms for financing and procurement. Furthermore, several middle-income countries have included cancer treatment in national health insurance coverage with a focus on people living in poverty. These strategies can reduce costs, increase access to health services, and strengthen health systems to meet the challenge of cancer and other diseases.”
15. Do you sometimes wonder why we have to pour billions into fighting an industry that is spending billions on promoting a product that is so incredibly harmful (tobacco)?
Yes and this is a fight we are currently taking on at the state and federal level here in the United States. From a policy perspective, I think tobacco control should be a top priority. Smoking is the single most preventable cause of death in the U.S., claiming more than 440,000 lives annually. Almost one out of every three cancer deaths in the U.S. — 160,000 people a year — is the result of tobacco use. LIVESTRONG is currently working to pass a comprehensive smoke-free workplace law in Texas to ensure that everyone has a right to breathe clean air. We are encouraging all states to do so and also support increases to state tobacco tax rates to fund public health programs and reduce smoking rates.
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