American Cancer Society
Robert C Young, MD
November 3, 2001
It seems fitting that my first thoughts since becoming the President of your American Cancer Society would be presented to the Assembly. It is the Assembly, after all, which represents the great breadth and diversity of our remarkable organization. It is the Assembly which acts as the expression of the two million volunteers throughout this country. It is the broad voice of the collective Society-the view from the trenches. It's the body where the actual performance of cancer control is conceived and orchestrated. Bodies like the Assembly have been a central part of successful organizations for centuries. Let's look back at one such example.
For a brief six months during the winter of 1787 in Philadelphia, a stream of extraordinary articles were written under the pseudonym Publius and were published in newspapers all across our newly minted country. These masterpieces of advocacy set out the case for the Constitution of the United States and became what is now known as the Federalist Papers. Those of relevance to my comments today were written by two men who could hardly be less alike. The first was Alexander Hamilton, a thirty year-old illegitimate immigrant of French and Scottish Huguenot stock, and James Madison, a true southern aristocrat, the eldest son of a Virginia planter.
While their backgrounds were different, these two brilliant and visionary Americans saw clearly the need for a collection of different voices to insure the proper function of the American governmental system. In their own words, they spelled out the case for a representational system based upon balance. I quote from the Federalist Papers, "In order to lay a due foundation for that separate and distinct exercise of different powers of government, which to a certain extent is admitted on all hands to be essential to the preservations of liberty, it is evident that each department should have a will of its own."
There are clear parallels between their constitutional ideas and the present governmental structure of the American Cancer Society. As with any large, complex and prominent organization, experienced, able and productive full-time staff are required for success. Our skilled national home office and divisional staffs provide that executive leadership. The volunteer leadership, concentrated in its Board of Directors, defines the mission, provides the vision and struggles with the balance between what benefits, to how many, at what cost.
Many in this audience might conclude that these two groups, the staff and the board, provide all this Society's leadership and hold all its power. While that might be plausible in practice, it is surely not in fact. The Assembly of the Society is arguably the most powerful entity in our entire governance structure.
- It controls the Society's strategic plan, our blueprint for the future.
- It controls the manner in which all divisions are constituted and function through the chartering process.
- It decides how the Society's financial resources will be allocated between National and the Divisions.
- It controls the nominating process, and as such, controls the makeup of the Board and determines who will be its volunteer leaders.
In short, no other entity in the Society has the raw power of the Assembly.
But having power and exercising power are two different matters. The Assembly has not traditionally exercised its power. Perhaps because of its size, the infrequency of its meetings or the heterogeneity of its views, it has generally seen fit to accept the courses outlined and approve the plans of action as presented. It is also quite possible that the Assembly is generally comfortable and satisfied with the Society's direction and, therefore, is carrying out its will appropriately.
Even if that is true, we should make sure that the Assembly is organized and structured in a way that best facilitates its ability to speak. For it truly has a unique voice - a very heterogeneous but nevertheless very powerful and important voice of the Society's people. We must continually look for ways to insure that that voice is heard. As Hamilton and Madison said in the Federalist Papers, "But the great security against a gradual concentration of the several powers in the same department consists in giving to those who administer each department the necessary constitutional means and personal motives to resist the encroachments of others."
We need to look at the Assembly to be certain that we have the structure which is worthy of its responsibilities. A successful assembly should be the primary conduit through which the Society's goals and aspirations are actually transmitted to the community. The American Cancer Society stands alone as the only cancer organization of any kind that actually has the grass roots structure capable of reaching the American people with a message of hope and opportunity.
And there are extraordinary opportunities at this, the dawn of the 21st century - perhaps more opportunities than ever in mankind's history. Let me spend a few minutes on just three.
What if you opened the newspaper tomorrow morning and read that a new inexpensive, painless and fast procedure was under study which would save 17,000 Americans each year? What if you read that a new treatment would prevent 90% of the deaths from the third commonest cancer in America? Alone that would save 50,000 lives each year in this country. What if the article went on to say that these new treatments required additional investments in research to insure their success? How much money would you invest? How much would you suggest that our Society or our country invest? I suspect probably a great deal.
Gratefully, these are examples of technologies already available. No more research is needed to insure their success if utilized appropriately. I refer, of course, to the many powerful screening, diagnostic, and prevention technologies now available for colorectal cancer. Proper application of simple fecal occult blood testing would save 17,000 lives, and the appropriate use of colonoscopy would save over 50,000 lives each year, about equivalent to the entire populations of the capitol cities of the states of Maryland and New Hampshire combined.
About 140,000 Americans will be diagnosed with colorectal cancer this year. Those diagnosed with early disease will very likely be cured, but those diagnosed late will not. In this country today, only 37% of patients are diagnosed with early disease, and currently only 40-42% of the public has had any screening procedure for colon cancer - only half the rate we have already achieved for breast cancer screening with mammography. We stand in 2001 with colon cancer screening, about where we stood in 1960 with mammography. And the opportunities for progress are probably as great or even greater.
Of all major malignancies, colorectal cancer may offer the single greatest opportunity for mortality reduction through available preventative techniques. The American Cancer Society through its staff, Board, Assembly, divisions and units can and will play a pivotal role in determining the success or the failure of the public's acceptance of these powerful screening and prevention opportunities. It is my view that we have already at hand, the most effective screening, early diagnosis and prevention tools available for any major cancer. It will be a missed opportunity if we as the American Cancer Society do not change the public's attitude toward colorectal cancer screening.
It is beyond the scope of this talk to discuss the relative merits of the available screening and prevention procedures. Suffice to say that fecal occult blood testing, sigmoidoscopy, barium enema and colonoscopy all have their strengths and weaknesses. We must resist the distraction of these honest scientific debates and recognize that the best screening test is the one that the person actually gets. The perfect must never be the enemy of the good.
Although a wealth of screening tools already exist, there are additional exciting possibilities on the research horizon. Virtual colonoscopy, although requiring the unpleasant "clean out" necessary for colonoscopy and lacking its therapeutic potential, does not require sedation, has no complications, and appears equally accurate in experienced hands.
Recently, the explosion in genetic research has provided new opportunities for colon cancer screening. In preliminary studies, assays for mutations in critical genes like K-ras, p53 and APC and the microsatellite instability marker BAT-26 when found in the stool have a 60-90% sensitivity and a 93% specificity for identifying colon cancer without a clean out preparation or a scope. These new screening techniques offer promising opportunities for the future.
But the Society need not wait. Just last year a hospital in Minnesota developed a community-based occult blood testing campaign. Using media contacts, direct mail, physician clinic distribution, rural outreach and nurse follow-up, they were able to increase screening from the baseline 10-30% to over 50%. Others have shown similar results. This should be and is one of the American Cancer Society's highest priorities. The Assembly with its diverse membership and its broad links to the communities across the country, will play a central, perhaps even a dominant role, in the eventual success of this unprecedented screening opportunity.
Many people have expressed concern about the potential costs of a widespread colorectal cancer screening program. Here too, the American Cancer Society can and is playing an important role. Our government relations department is currently working on a cost-benefit analysis to show to both the government and the insurers that even the most expensive of the screening procedures may be cost-effective when considered on a per-person, per-month basis. This demonstrates the productive interplay that can occur between research, cancer control and advocacy within the American Cancer Society.
The next major opportunity that requires our attention is that of cancer care quality. The Society has long been concerned about the problem of access facing those uninsured and the medically underserved. It has long been our proper focus to make sure that all Americans have access to quality medical care.
But access does not guarantee quality. John Seffrin, John Lazlo and I had the opportunity to serve on the National Cancer Policy Board, a body created by the Institute of Medicine and the National Academy of Sciences, charged with addressing the major cancer problems facing this country. Four years ago the Board began to study the quality of cancer care in this country. Our study, published two years ago, entitled "Ensuring Quality Cancer Care" was a chilling report on the state of cancer care in this country. The study concluded that for many Americans with cancer, there is a wide gulf between ideal treatment and the reality of their experience with cancer care.
These are the people who have already been able to access the health care system.
Throughout this country we found evidence of overuse (unnecessary tests, medications and procedures) under use (failure to receive well-established quality care) and misuse (improper medicines, surgery and radiation). The magnitude of the problem is not known but the Policy Board believes it is substantial.
- We found that the surgical mortality was three times as high when complex, cancer surgical procedures were performed at institutions doing these surgeries infrequently, and that unfortunately almost half of all cancer patients had these complex surgeries in low-volume institutions.
- We found that the use of radiation therapy post lumpectomy for breast cancer declined progressively in the elderly such that only 18% of women above the age of 80 received standard post operative radiation therapy.
- We found studies to show that only about 60% of postmenopausal women with node positive breast cancer receive Tamoxifen after surgery.
All these are cancer treatments now considered standard. There is no longer any medical debate about their benefits. Why then do patients not receive proper therapy even if they can properly access the health care system? The answer is complex, and as yet, poorly understood. However, the Policy Board has made several recommendations that the American Cancer Society should champion to improve cancer care in this country.
- Ensure that patients requiring complex cancer management receive their care in high-volume facilities.
- Use systematically developed guidelines for prevention, diagnosis, treatment and palliation. Here the American Cancer Society is already partnering with the National Comprehensive Cancer Network to translate scientific guidelines into those better understood by the public. Guidelines on appropriate breast, prostate, colorectal and lung cancer management have been completed and there are more to come.
- Establish cancer care quality measures and disseminate these widely to purchasers, providers, consumer organizations, patients and policy makers.
- Ensure that the basic elements of quality cancer care are provided each patient including an initial cancer management plan developed by cancer experts, a care plan which outlines the goals for treatment, a mechanism to coordinate services, full disclosure of treatment options and psychosocial support services and compassionate care.
- Ensure quality of care at the end of life, in particular, the management of cancer-related pain and timely referral to palliative and hospice care. Here again the American Cancer Society has partnered with the National Comprehensive Cancer Network to develop clear understandable guidelines for pain and other quality of life issues.
The Board's report also included recommendations about improving what we know about the quality of cancer care and the need to overcome barriers to access.
About now you are all thinking that these are huge, complex national cancer care problems and are far beyond your capacity to make a difference. Not so. Let me suggest at least three ways that you personally can tackle these problems.
- First, you are not alone. There are two million of you stretched across this country in every community and town.
- Second, the American Cancer Society has a highly responsive and comprehensive on-call center where you can direct patients and families to these cancer care guidelines and an up-to-date information service. It might surprise you to know that our study found that most of the failures of the system were not failures of complex 21st century technology. They were failures of simple information transfer and guidance. The quality of cancer care could be markedly improved if patients only knew what they should expect and what questions to ask their health care provider. You the volunteers of the American Cancer Society can help provide this education and assistance.
- Third, you can become better informed about what constitutes quality cancer care and use this information to benefit yourself, your family and those you reach through your work with this Society. Use the Policy Board's report on Ensuring Quality Cancer Care; use the guidelines developed by the American Cancer Society and the National Comprehensive Cancer Network, and use our website and call center.
There is a wealth of good cancer care information available and more will be forthcoming. Providing simple, common sense advice, along with guidance to sources of excellent information, is well within all of our capacities. Don't underestimate your impact.
There is a wonderful quote from the late great tennis player Arthur Ashe. When asked about his recipe for success in life he said, "Start where you are. Use what you have. Do what you can." If we follow Arthur Ashe's advice, each of us can make a difference in quality of cancer care in this country.
The last great opportunity that I want to mention may actually be more of a missed opportunity if we fail to respond. As all of you know, the fuel for all of our programs in cancer control, research, education, advocacy and service comes from the donations of millions of Americans who want us to reduce the burden of cancer. With the devastating and tragic events of September, many have questioned the appropriateness of fundraising for causes other than the country's campaign against terrorism and our national safety. Certainly, the unprecedented giving surrounding this national tragedy is a wonderful tribute to our enduring national spirit. It is thrilling to see the people in this country come to the aid of their neighbors. We shouldn't have doubted it for a minute, and certainly we wouldn't want it any other way.
But concern has been raised about whether the support for the cancer effort will wane in the face of this extraordinary giving need. Such concern is understandable, but I believe the concern is not well founded. First, this country's capacity to give is not finite. Philanthropy is not a zero sum game. A publication of the Trust for Philanthropy tells us that American giving has increased progressively a whopping 400% in current dollars and 64% in inflation-adjusted dollars over the last twenty years.
Furthermore, in the past thirty years there is little or no evidence that giving has declined during periods of recession. In good times giving increases a lot, in bad times it just increases a little. Americans will give if the rationale is powerfully presented and the cause is just. The point we must make is that the cancer problem will not wither away in the face of this country's new crisis. Cancer incidence is not influenced by terrorist bombings and the cancer toll will not decline as a result. A half a million Americans will die this year if we don't press on with our agenda of hope and discovery.
The public, aware of the challenge and of the gravity of the problem, will respond, as they always have, if we deliver the clear message of need. The lives of too many people are at stake. The threat of cancer still looms over us, our children, and our grandchildren. It strikes Americans in staggering numbers, ignoring our grief and anxiety about the terror among us. We might suspend our appeals, but cancer will not suspend its destruction. If each of us can send this message, the resources to continue our quest for cancer control will be forthcoming. I'd bet my red, white and blue flag on it.
I have set forth just three great opportunities. There are countless others, I do not have time to mention. We must not miss these opportunities nor allow them to vanish. These are great challenges worthy of a great organization like the American Cancer Society. Our success will rest, not with the words of our leaders, but with the deeds of our people.
It will not be easy, but very little worth accomplishing really is. It will not be a part-time job for any of us. Once again we can take insight from another of this country's remarkable founding fathers. Thomas Paine in the American Crisis, December 23, 1776 wrote. "The summer soldier and the sunshine patriot, will, in this crises, shrink from the service of his country; but he who stands, deserves the love and thanks of man and woman. We have this consolation with us, that the harder the conflict, the more glorious the triumph. What we obtain too cheap, we esteem too lightly; 'tis dearness only that gives everything its value."
At this the beginning of a new century, we have an extraordinary opportunity to change the course of cancer. The tide began to turn in 1990 with the first evidence of declining age-adjusted mortality. We must make certain that the decline continues and indeed accelerates.
I'm reminded of a great old Paul Simon tune entitled "Slip, Slidin Away." In it Simon, the consummate poet and philosopher sings "A good day ain't got no pain. A bad day is when I lie awake and think of things that might have been."
The need for our work is too precious and important for any of us to let cancer control go slip, slidin away.
- Press Announcement of Young Appointment to ACS
- Young Biography
- Young Curriculum Vitae
(This link requires Adobe® Acrobat Reader to view.)
- Letter from Chairman of the Board, Philip Lippincott
- Young Interview in Oncology Times
- Fox Chase Fact Sheet