Arthur Ullian ’57 tries to compress a sprawling tale into a simple, linear chronology. The energy in his voice alone signals that the 20 years since his paralyzing
bicycle accident have been thrilling. They have also been groundbreaking.
Arthur’s helmet didn’t protect him from the spinal cord trauma that caused his paralysis in July 1991, when he flipped over his bike handles. Afterward, Arthur began “checking around” on the state of spinal cord research. “Meeting and talking with people,” as he put it, Arthur discovered the Miami Project to Cure
Paralysis, launched in 1985 by Barth Green, M.D., and NFL Hall of Fame linebacker Nick Buoniconti, whose son was paralyzed. From scientists there, and from others, Arthur learned that the biggest barrier to progress was lack of federal research funding from the National Institutes of Health (NIH).
He set his sights on increasing the federal investment from NIH on spinal cord research. “I knew how to advocate and lobby,” Arthur says. “That’s what we did all day.” Understatement is an art form for Arthur: He had already built a 30-year career in developing and managing mixed-income housing—a story of political, entrepreneurial and financial skill.
With astute strategy and unflagging persistence, Arthur helped drive a doubling of the federal budget dollars devoted to biomedical research. From 1993, when he entered the high-stakes game, until 2001, the federal government support for medical research on all diseases increased from roughly $5 billion to $30 billion annually. Ultimately, representatives and senators from both sides of the aisle arrived at this commitment. Winning their support, and countering a research-phobic climate, was Arthur Ullian’s mission.
“I’ve loved it,” Arthur says about his drive to make medical progress. “It’s been fun.”
Arthur set about meeting legislators, reading, thinking, connecting. His friend, Massachusetts congressman Chet Atkins, helped Arthur learn “how you do things” to advance an agenda. The congressman made introductions, and sharpened Arthur’s wellspring of insight and savvy.
Build a bigger tent
Early in his quest, Arthur confronted fundamental realities. For instance, Senator Tom Harkin of Iowa pointed toward people in his waiting room and hallway. How could he concentrate on spinal cord injury, he asked Arthur, when the next person would make the case for Parkinson’s disease, or multiple sclerosis, or Alzheimer’s, or a cancer?
Job one, Arthur discerned, was not insignificant. The tent had to grow: He had to convince the patient advocacy groups representing all diseases that “we all stood to lose unless we consolidated and organized our plans to increase the entire NIH funding level,” says Arthur. Yielding particular interests to reach an overarching goal was the only shot at increasing the dollars devoted to biomedical research. Nearly all of the advocacy groups agreed to join in a large coalition.
That he should begin with the senators, rather than the representatives, was another discovery. “Congressmen,” Arthur says, “still think that if they just eat salad, or blueberries, and run, they’ll stay healthy. Senators were generally old enough to have sick family members.” Every senator seemed personally touched by the need to find a cure or an effective therapeutic response to something.
Shake up the worldview
For all legislators, Republican or Democrat, increasing funding for medical research was anathema. The prevailing view among health-care economists linked medical advances directly to increased costs. Advances in medical technology, in particular, had demonstrably driven higher health-care costs.
If your eyes are trained on reducing the federal budget, Arthur reasoned, you need evidence that health improvements can lower costs. Further, he wanted to show that federally funded university-based research brings those improved outcomes that are then developed by the biopharmaceutical industry. New therapies could lower costs for future decades.
He began by connecting with Kenneth Manton, director of the Center for Demographic Studies at Duke University, whose work analyzing the National Long-Term Care Survey pointed to key findings. Dr. Manton described health costs not simply as the percentage of elderly in the population, but rather as a function of the percentage of chronically disabled in that group. The chronically disabled need help to perform basic activities of daily living such as eating, grooming and bathing, as well as preparing meals, shopping and managing money. When chronic disability declines, active life expectancy increases—that is, dependency decreases, as do costs.
Perhaps most important from Arthur’s point of view, Dr. Manton noted that recent declines in disability rates are consistent with the introduction of new technologies (for example, better drug treatments of osteoporosis, stroke, Parkinson’s disease and congestive heart failure).
Mobilized to look at the relationships between biomedical advances and health-care costs, Dr. Manton and other health-care economists would produce findings over the next several years that changed the context for the debate about funding research.
For instance, they argued that a new medical paradigm could lower costs for many diseases and make invasive surgery, intensive-care units, and long-term nursing home care far less necessary. Treating ischemic stroke with tissue plasminogen activator (t-PA) is a good example of a recent clinical advance linking a new technology with real and potential cost savings.
Better therapies, they argued, applied earlier, could improve function and extend life, and surprisingly, health costs in the last two years of life decline in persons dying at later ages.
Rising health expectations, especially at later ages, can incentivize behavioral changes. A better-educated public, they contended, will choose to alter behavior, based on strategies identified by biomedical research as improving health.
Labor productivity is a function of improved health. Finally, biotechnology is an important engine of U.S. economic growth.
These now-familiar strands of the public debate emerged during the ’90s and demanded airtime in the public forum. They added weight to the conversations Arthur pursued, in every direction.
Strange bedfellows
“You’d be surprised,” Arthur suggested, about building a network of supporters. “It was like six degrees of separation. I got to know lots of senators, Republicans and Democrats. Many people have personal experience with disease.”
When they invited him to fund raisers, Arthur accepted only if they’d agree to meet him first. Senator Bill Cohen from Maine asked, for instance. Arthur knew that Senator Cohen’s sister had Parkinson’s disease. He chaired the Senate Committee on Aging. “I brought a leading Parkinson’s researcher from Boston with me to meet him,” says Arthur. “The doctor told Senator Cohen that we would ultimately be able to cure Parkinson’s—with research.”
Many of Florida senator Connie Mack’s family members suffered with cancer, Arthur says. Senator Robert Dole’s life was saved with an experimental drug during World War II. San Francisco mayor Joseph Alioto’s daughter had been paralyzed in a fall from a ski lift; the mayor made meetings with Representative Waxman
and Senator Harkin possible. “Senator Mark Hatfield, chair of the Appropriations Committee, was a supporter and a great guy,” Arthur says. “There were many great senators then, and they’re all gone now.”
Arthur was now armed with compelling arguments for his conversations with senators. He realized, however, that speaking as an official “voice” would increase his leverage. He began by convincing the National Council on Spinal Cord Injury (NCSI) to appoint him as their legislative representative. A big umbrella group set up by the disabled veterans’ association, the Council monitors all scientifi c work on spinal cord injury. In 1996, Arthur was appointed to the National Advisory Neurological Disorders and Stroke Council. In 1999, he became a member of the Advisory Committee to the Director of the National Institutes of Health, appointed by Harold Varmus, Nobel laureate and director of NIH. The council included university presidents, research scientists—many of them Nobel laureates—and two community members, Arthur relates. Not only was it stimulating, participating with the key scientists, but it helped Arthur develop “some ability to talk about disease, especially to the layperson,” he says.
As director, Harold Varmus brought together a small group to see if data could be developed that could support an argument that medical research could have economic benefits. From this meeting, the Task Force on Science, Healthcare and the Economy was formed. Arthur chaired the Task Force, which included
luminaries from science and academia. The Task Force members included Charles Vest, president of MIT; Eric Lander, director of the Human Genome Project, at MIT’s Whitehead Institute; and Hebert Pardes, dean of the faculty of medicine at Columbia’s College of Physicians and Surgeons. At a minimum, this group had “convening power,” Arthur remembers Dr. Pardes to have said. “He was right. My calls were always returned, which is half the battle,” Arthur said.
And the group did attract attention. Their studies linked the interdependent strands of scientific research, health-care direction and economic outcomes. They set a new framework; they demonstrated urgency, value and opportunity, in statistical terms.
Senate hearings: national theater
In theory, hearings openly explore a critical issue with political implications. In practice, they are information-rich events, artfully and rigorously controlled by the majority political party. Arthur cultivated bipartisan interest in his issue; he worked hard to earn the unparalleled opportunities that hearings offer.
The keen observer figures out quickly how to maximize the hearing theater. Expanding senators’ and the nation’s knowledge base is the goal. Framing and delivering salient information in the form of quotable findings is crucial. Here, the studies relating medical research to desirable economic statistics were key. If a
public personality, a screen star optimally, were to appear, the media would follow. If the media appear, the senators appear. Simple formula.
Just before one key hearing, actor Christopher Reeve was paralyzed in a Memorial Day fall from his horse. If Reeve and his family were interested, their words and appearance would powerfully support the need for groundbreaking research. Through the owner of the boatyard who cared for both Arthur’s and
Christopher Reeve’s boats, Arthur tracked down Reeve’s hospital location. By the next day, the actor’s family had received, at the hospital, an invitation to join the effort and appear in Washington two weeks later. By the following day, Arthur had received a “yes” message from Christopher Reeve’s brother, Ben. Arthur and Dr. Wise Young, a well-known spinal cord researcher who was then at New York University, traveled to New Jersey to meet with Reeve and his family. That was a moving visit, Arthur remembers, recalling an inspirational poster of the astronauts’ lunar landing on Mr. Reeve’s wall. The astronauts had signed the poster and written at the bottom, “Anything Is Possible.” Close on the heels of a devastating and public accident, Mr. Reeve’s brother’s testifying was compelling to senators.
Senator Mark Hatfield, Appropriations Committee chair, held a similarly powerful hearing with the Joint Economic Committee. A young, handsome Travis Roy, paralyzed by an ice hockey accident as a new recruit and freshman player on the Boston University team, spoke to assembled senators. Travis urged the country to think of spinal cord research as a new Manhattan Project. When he said, “all I want is just to hug my mother,” Travis brought his father to tears. One by one, speaking directly to Travis’s dad, each senator around the horseshoe table recounted a personal story that connected with Mr. Roy’s anguish. The emotion in the room was palpable.
Ted Kennedy and his Health Committee co-chair, Republican Bill Frist of Tennessee—who had graduated from Harvard Medical School, which helped create their nice relationship—would hold forums on the issues of biomedical research. Arthur tapped his role on the Council for Harvard Medicine to bring
spokespeople who would flesh out all the angles of the researchfunding question. At Arthur’s request, Peter Lynch, former chair of Fidelity Investment’s Magellan Fund, appeared. Mr. Lynch argued that investing in research creates profitable companies and jobs. Dr. Judah Folkman, sought after by the press for his research on tumors and promising cancer therapies, was first available to the press at a Kennedy-Frist forum, due to Arthur’s intercession.
Momentum in the Senate grew steadily. Since Arthur’s immersion in the debate (1993), the NIH budget had crept up to $15 billion from $5 billion. Senator Mack of Florida “had a mind to double this annual investment for NIH research,” Arthur says. Senator Mack proposed it to the Republican caucus. With evidence on the record that this move could lower health-care costs in the future, the caucus agreed to recommend increasing the budget over fi ve years to $28.5 million annually.
Then came a pivotal meeting with House Speaker Newt Gingrich of Georgia; Arthur’s friendship with the CEO of Delta, which is based in Atlanta, helped secure that chance to talk. Gingrich met with Peter Lynch, Dr. Folkman and Arthur in the Speaker’s office, and after some discussion agreed to an eight-year timetable for the increase. “We knew we had won then,” Arthur says. In the end, Congress did agree on the five-year timetable for doubling NIH research funding.
Increases to the NIH research budget leveled out during the Bush era, but in less than a decade, Arthur had achieved what he set out to do. Already, research based on new knowledge about what happens in spinal cord injury advances the chance of better outcomes. The funding also produced new findings for many
disease groups; these will eventually reach the bedside.
Meeting, traveling, talking, learning, listening, motivating and galvanizing the “troops” from his wheelchair, Arthur was indefatigable. In fact, the project energized him. He has moved on. Today he’s taken on the prospect of securing a more accurate model to predict Medicare costs and the number of years to insolvency. “Since 1970, Medicare cost projections have consistently been overstated, incorrectly predicting that the Trust Fund would become insolvent time and time again. These projections don’t consider, in their assumptions, health improvements that reduce costs,” he stated. Just as the country needs to make solid projections about possible changes, Arthur is ready.
“Some people come up to a closed door and go away,” Arthur muses. How many doors has Arthur opened, already, in his second career?
Cathleen D. Everett