“[There] is a very frequent attitude that can be observed even in the political sphere...People would sooner put up with false, impure, untruthful, and evil things than cause or have problems. There is a willingness to purchase well-being, success, public regard, and approval from reigning opinion by dispensing with the truth.”
From “Salt of the Earth”: An interview with Joseph Cardinal Ratzinger (Pope Benedict XVI)
When truth meets politics to collaborate for change, great things can happen for future generations. I would argue that in the latter half of the 20th century, the best example of this nexus in American history was the civil rights movement. There can be no arguing the fact, despite the insidious racism that still exists in some parts of our culture, that the civil rights movement changed our national character fundamentally for the better. Today, only the most hardened racists would dispute this.
Our nation changed because people who seemingly had no stake in the issues of racial segregation and discrimination decided it was their business. When Andrew Goodman and Michael Schwerner journeyed from New York to Mississippi to join James Chaney to register voters, they were part of a national movement that declared it was time for funda-mental change. They were representative of citizens from all backgrounds who fought for change and ultimately paid with their lives. Their deaths helped provide the final impetus for passage of the landmark Civil Rights Act of 1964, the law that changed the face of our nation.
Thanks in large part to its passage, public policies that pre-served the Jim Crow system are today intolerable. Today’s children can hardly comprehend that a world with, for example, segregated public facilities even existed.
I cite this example because I have become convinced that the civil rights movement must be the model for the cancer advocacy community. I am often asked what would it take for Congress and the president to agree to make cancer research among the highest national priorities—as high as the war on terrorism, as high as education or as high as building roads and bridges.
Cancer issues will only become a high national priority when a critical mass of those who don’t feel they will be touched by cancer decide it should become one, just as happened in the civil rights movement. First, there has to be better public education so that Americans understand that one of three females and one of two males will be diagnosed with cancer in their lifetimes. Second, when Americans understand that it may be possible to make all cancers chronic conditions, change may be possible. Once they appreciate the realistic opportunity in cancer research, and that our federal government is the largest single entity in the world capable of supporting cancer research, they will demand that it be vigorously supported.
Unfortunately, cancer advocacy is a tricky business. First, there has to be recognition that patient advocates and public policy advocates are not the same thing. Patient advocacy is about how one negotiates the terrain of medical care and bureaucracy to treat a disease—how to maneuver through the medical system, how to interpret what your doctor is telling you, how to access the best the treatments, therapies and drugs, and so on. A patient advocate may or may not be an effective cancer public policy advocate. Regrettably, the issues some advocate for may not coincide with the mission they seek to support.
For example, I met a gentleman whose wife recently died of breast cancer. He has two young daughters. When he learned of my work with the IMF, we discussed cancer advocacy. During the time his wife was fighting her cancer, he was most interested in treatment issues. Now that he has two daughters to care for, he said he was less concerned about treatment and mostly interested in prevention. I tried to explain to him that this was a false choice.
As Dr. Bill Nelson, a prostate cancer clinician and researcher from Johns Hopkins recently stated at the opening session of this year’s Scientist<—>Survivor Program® of the American Association of Cancer Research meeting, “There has not been a single drug discovered and developed for the purpose of cancer prevention. Each of the drugs tested for ability to prevent cancer… were already marketed, and generating substantial revenue, for other indications.” The moral: if you’re interested in cancer prevention, support the broad spectrum of cancer research.
A more difficult problem is defining what the cancer constituency is. This is important because the most basic concept in American politics is constituency. In other words, whose interests are being represented and acted upon? This is not as simple as it first appears to be.
The IMF Advocacy Program seeks to represent three over-lapping myeloma constituencies that comprise the myeloma community. First and most obvious are patients and caregivers. Another is those who have suffered the loss of a loved one to myeloma. The last is the most overlooked: future patients and families. As IMF Board Member Michael Katz frequently reminds me, those of us in the myeloma community have a duty and obligation to reach out for those coming after us. They do not yet understand what will face them—positive or negative.
Within these myeloma constituencies there are also sub-groups. In the patient community, for example, one with smoldering myeloma may be most interested in support-ing immunology research (i.e., strengthening the immune system to prevent the onset of active myeloma). Those goals may be different for a patient with severe bone issues. Complicating the picture is the tendency of some cancer advocates (the same happens with all disease types) to separate their perceived constituency from the broader cancer advocacy community.
And this highlights the ultimate conundrum for advocates for myeloma research and every other specific tumor type. As regular readers of my articles know, when Congress funds the National Institutes of Health, it does not allocate funding by disease type. So asking Congress to spend more on myeloma research is not realistic or productive. Our motto should be, “It’s the cancer, stupid.” This is particularly true now, as the NIH budget increases far less than the level of inflation, which actually results in a decrease of research activity from year to year.
In times of plenty, it was easy for Congress to make the right decisions. This was the case when the NIH budget was doubled over the period from 1998-2003. But now, in times of fiscal restraint, some in Congress and the administration are seeking to minimize medical research funding. They can do so because the cancer advocacy community has fragmented goals which dilute the overall strength of their constituency.
The source of this misguided advocacy can be traced to the incredible success of breast cancer advocates in early 1990s to establish a research program at the Department of Defense. The model they established—literally sham-ing Congress into action to devote more resources to breast cancer research—worked when they were virtually the only ones making the case for their disease. Congress has realized since then that allocating funding for specific disease programs has the effect of politicizing the priority-making process for cancer research. And their actions over the past eight years have reflected this. The breast cancer advocacy model of the early 1990s is obsolete today for all the other disease groups who seek to expand “their” piece of the pie. Today, Congress wants NIH to focus on scientific opportunity rather than political pressure.
Consider the issue of low clinical trial participation among eligible patients. Many patients are wary of clinical trials because they fear the possibility of being given a placebo. They want to know the truth and the realistic odds for good outcomes. Yet, too many advocates willingly accept and advocate for political placebos. Using as an analogy the observations of Pope Benedict XVI, advocates for disease-specific funding may feel that they are doing the Lord’s work, but ultimately their advocacy does not recognize two important facts:
1. Determining and treating the genetic causes of cancer may have less to do with specific disease types than past research indicated; and
2. Taking into account the dwindling resources of the NIH, it is unwise for advocates to make political arguments that their cancer deserves increased funding at the expense of other research priorities. Such decisions must be made by researchers, not politicians or advocates.
Cancer is too big an issue to be dominated by narrowly defined interests. This includes the advocacy of encourag-ing Congress to fund research for specific diseases. Such activities come at the expense of building collaboration among advocates for all diseases—especially cancer—to provide comprehensive support for the NIH and its largest institute, the National Cancer Institute.
The real, broadly defined goal must be eliminating suffering and death due to cancer. To paraphrase Neil Armstrong’s immortal words when he set foot on the moon, we in the myeloma and cancer communities tend to focus too much on small steps rather than build the foundation needed to take the many giant leaps needed to conquer all cancers.
What is needed is consensus among all Americans to end cancer and make it the civil rights issue of the early 21st century. This will lead to a day when cancer can be dumped into the dustbin of history along with public segregation and discrimination. That is the truth and the only way we will overcome this beast called myeloma.