It's a happy picture: President Bush beaming, flanked by smiling members of Congress, as he signs the Patient Navigator Outreach and Chronic Disease Prevention Act of 2005. It was one of the few pieces of health care-related pieces of legislation to reach his desk during the last session.
“For a bill that, in the scheme of things, was small, for it to rise to the level where the President invites the members of Congress who were involved in this effort to the White House and they have a signing ceremony in the Oval Office, with photographs and such; that's pretty amazing,” says Licy DoCanto, who was with the American Cancer Society's Government Relations Office at the time.
For reasons I'll explain shortly, I took a personal interest in the recollections of DoCanto and other supporters of patient navigator programs, such as former Harlem Hospital Cancer Chief Harold Freeman, MD. They have pushed for many years to expand the use of these trained lay people, who help guide patients through treatment and bridge the gulf between the worlds of patients and physicians. They used all the standard lobbying techniques to move a bill funding more patient navigator programs.
But they also got an assist from some unusual “testimony:”
In the ER hallway, Dr. Ray Barnett and Dr. Gregory Pratt look back at a cancer patient and another woman talking inside Trauma Room One.
Barnett: “Where'd you find her?”
Pratt: “There's a cancer support group upstairs. They have patient navigators to help people get through the system.”
Clips of an episode of ER featuring a patient navigator were played for legislators and key staffers in what could be thought of as a twist on the tried-and-true technique of bringing a Hollywood celebrity to Washington to open doors and perhaps win some votes.
‘Refusal of Care’ Episode
In the episode titled “Refusal of Care,” doctors were trying to persuade a reluctant patient to accept treatment for the advanced cancer they had stumbled on while treating her for a bone fracture. The woman blocked out the pleas of white-coated physicians, but opened up to a cancer survivor.
“I brought it to them,” says DoCanto. “Here we took a very popular program and we said, ‘Even ER has picked up on the importance of patient navigation and if even they have, then you've got to know that there's relevance for this.’ So it was another way of stimulating the people who were working on it.”
DoCanto notes that members of Congress are besieged by pleas for action…so anything that can cut through the clutter is useful. “They are real people, too. They watch these programs. I think they do have an impact.”
DoCanto got the video from Dr. Freeman, who had worked with ER writers to create the storyline.
Dr. Freeman, now a Senior Adviser to the Director of the NCI on cancer disparities and Medical Director of the Ralph Lauren Center for Cancer Care and Prevention in New York City, says the collaboration began with a briefing set up by the Hollywood, Health & Society program at USC Annenberg's Norman Lear Center. He told the ER writers about patients who resisted surgery because they had the mistaken belief that if air touches a tumor, the cancer will spread.
Dr. Freeman, a member of OT's Editorial Board, said he suspects the myth may spring from stories of people who did not appear to be seriously ill until after they were treated.
“The community translates the case into, I believe: ‘John walked into the emergency room. He was strong enough to walk in. They operated on him. He seemed to tolerate the surgery okay; he was discharged in 10 days. And then he died.’ So the translation is: ‘The air touched the cancer and caused the cancer to spread,’” Dr. Freeman said.
The pervasiveness of this belief was documented in a 2003 survey by Mitchell L. Margolis, MD, and colleagues at the Philadelphia VA Medical Center and University of Pennsylvania, the Los Angeles VA Medical Center, and the Medical University of South Carolina. Of 626 consecutive patients in pulmonary and lung cancer clinics, 38% stated that they believe air exposure at surgery causes tumor spread. The belief was more common among African-American patients, with almost one in five saying it was a reason for opposing surgery.
“So I said,” Dr. Freeman recalled, “Maybe you should create a scene in which you have a patient who believes that. And then I said, ‘Hopefully, you could utilize something I developed, and that is a patient navigator, who is a lay person who can talk to people, and those people will tend more to listen to somebody who looks and talks like them.’ They then created an episode that involves both of those things.”
ER writer Joe Sachs, MD, picks up what happened next: “So we did a story where [the character of Dr.] Pratt confronted, but couldn't get through to, this woman who absolutely refused surgery.”
Scene in Trauma One as Dr. Pratt and Dr. Barnett examine cancer patient Debra Graham:
Graham: “You want to cut me? I don't think so.”
Dr. Pratt: “An operation may be part of the treatment plan.”
Agitated, Graham sits up, tries to get out of bed.
Graham: “Where are my clothes?”
Dr. Barnett: “Take it easy, you're all hooked up.”
Alarms sound as some of the monitor cables disconnect.
Graham: “I never should have come here.”
Dr. Pratt: “You need to stay.”
Graham: “I don't want you cutting into me.”
Pratt and Barnett have to hold her down for her own safety.
Dr. Pratt: “Relax.”
Graham: “No, no…”
Dr. Barnett: “It's okay…”
Graham: “You don't cut into cancer…”
Dr. Barnett: “We're not going to.”
Graham: “I know what happens.”
Dr. Pratt: “Settle down.”
Graham: “You cut into cancer, it spreads…”
Dr. Pratt: “Mrs. Graham…”
Graham: “It spreads and you die.”
Dr. Sachs says he was drawn to the topic because it allowed them to explore Dr. Pratt's struggle with the gap that had developed between him and the world he had grown up in. He had left his poor Chicago neighborhood, gained an education and a medical degree; but he had lost the ability to connect with people who were once his neighbors.
“And then a patient navigator was brought in who started to get through to her. It was somebody like her from the community, who had cancer that had spread to the bone and was in remission three years out,” Dr. Sachs says. “And that clip worked dramatically for Pratt, who is educated and smart, to have to confront some of these beliefs.”
Dr. Sachs had latched onto the cancer myths and patient navigator concepts brought to him by a New York City oncologist because of their dramatic potential. It was a bonus that the ER episode then echoed from Los Angeles back to Washington, DC.
“So that's a remarkable circle of that story, starting with the kernel of an idea from a briefing about the fact that there are differences in cancer statistics in the inner city and in more suburban areas, talking to the expert, Dr. Harold Freeman, coming up with a compelling dramatic story for Pratt and then, as a side effect, having it result in the passage of congressional legislation that's going to affect millions of people. That's a cool story,” Dr. Sachs says.
Licy DoCanto says that of course many people worked on many efforts over several years to win federal funding for patient navigator programs, such as Gilbert H. Friedell, MD, at the University of Kentucky Cancer Center, who could show that the problems weren't restricted to big cities. But the ER episode came along at the right time, and it dovetailed with other media outreach, such as Dr. Freeman's work with the Ralph Lauren Center and Spanish-language radio programs done by Elmer E. Huerta, MD, MPH, of Washington Cancer Institute.
“The media, without a doubt, was critical as an influence,” DoCanto says.
Staffers Who Worked on the Legislation Credit the Show with Helping to Raise Awareness
Representative (now Senator) Bob Menendez (D-NJ) sponsored the House bill to fund patient navigator programs. His spokesman, Allyn Brooks-LaSure, says that staffers who worked on the legislation credit the ER clips with helping to raise awareness.
“They didn't see any sort of direct movement as a result of it being included in the episode on television; no specific action or follow-up,” Brooks-LaSure says. “But they believe that it was helpful from a practical perspective, because it provided a tangible example of exactly how the patient navigator program would work—sort of a tool to be able to point people to.”
Personal Interest from CNN Work 15 Years Ago
Does a dramatic story have a different sort of persuasive power than standard hearing testimony or a straight factual report, such as a news story? That's where my personal interest in this episode of health care legislative lobbying comes in. You see, I did a series of reports on cancer in poor communities that included Dr. Freeman and showed a patient navigator at work. That series aired on CNN 15 years ago. I'm not aware that the stories produced any movement on related health care policy.
Maybe it was a confluence of factors that led to federal funding for patient navigator programs just months after they were mentioned on ER. But I think that at the very least, the show was a bellwether of popular attitudes. The way that the patient navigator was portrayed indicated that the mood had shifted from “What are they? Why do we need them?” to “Oh, of course, let's get more of them now.”
And so, now more patient navigators are on the way.
AstraZeneca Giving $10 Million to ACS Patient Navigator Program
As OT went to press, AstraZeneca and the American Cancer Society announced a collaboration to significantly extend the reach of the Society's Patient Navigator Program.
The company has pledged funding of $10 million to help the ACS develop at least 50 new Patient Navigator Program sites over the next five years. There are currently 60 such sites across the US.
The first new three sites are Seattle Cancer Care Alliance; Helen F. Graham Cancer Center at Christiana Care in Wilmington, DE; and, John H. Stroger Jr. Hospital of Cook County in Chicago.
Harold P. Freeman, MD, Medical Director of the Ralph Lauren Cancer Center in Harlem, NY, who pioneered the concept, said in a statement, “Patient navigators directly assist patients by eliminating financial, communication and emotional barriers to timely diagnosis and treatment. This kind of support may be life saving.”