STAT: How a Top Republican Became a Champion for the NIH

STAT News - David Nather

A year ago, when Tom Cole was announced as the new chairman of the powerful House panel that funds medical research programs, he was no expert on medical science.

The Oklahoma Republican was well known in Congress for his political savvy and his ties to the GOP leadership. An affable, laid-back lawmaker with a pragmatic streak, Cole was an ally of John Boehner, then the House speaker, and a skilled operative.

He had run the GOP organization in charge of reelecting House Republicans, and was the chief of staff at the Republican National Committee in 2000. But no one would have named Cole as a particularly influential lawmaker on health care.

Now, however, as the head of the House Appropriations subcommittee on labor, health, and human services, Cole is one of the most important Republican advocates of medical research. He's also one of the key reasons that the National Institutes of Health is probably about to get a big boost in funding for the first time in 12 years.

That proposed increase is part of a huge spending bill to keep the federal government running after its funding runs out on Friday. The bill is tied up right now with fights over other issues, so Congress is set to pass a short-term extension to keep the government open into next week. But if those fights can be resolved, NIH is almost certain to end up with more money — anywhere from $1 billion to $2 billion more than last year.

Over the past year, Cole gave himself a crash course in medical research and public health. He visited the NIH campus in Bethesda, Md., in January and spent hours talking to Director Francis Collins and the leaders of some of the individual institutes. He flew to Atlanta in February to visit the Centers for Disease Control and Prevention.

He also talked with medical research experts from his home state and with lobbyists from some of the most vocal disease advocacy groups, including the Alzheimer's Association, which helped convince him to include a $300 million increase for Alzheimer's research in his bill.

Cole is candid about how much influence the Alzheimer's advocates had on his thinking: "We just adopted the proposal of the Alzheimer's advocates because we thought it made a lot of sense."

The personal side

But Cole also had two important personal experiences that helped open his eyes to the impact that serious diseases can have on people's lives. His father, John Cole, had Alzheimer's disease, he said — serious enough that the father was institutionalized in a veterans' nursing facility for the last 12 years of his life. And Cole's wife, Ellen, has multiple sclerosis, a disease she has struggled with for more than 20 years.

Cole insisted he hasn't let his family's experiences influence the amount of funding he is steering toward specific diseases, or medical research in general, as the House subcommittee chairman.

When he brings up Alzheimer's, he mostly talks about it in pure dollar-and-cents terms. He's interested in how much health care spending will rise as retiring baby boomers develop the disease, and how much money the federal government could save if a cure can be found — arguments that sound remarkably similar to the ones used by the Alzheimer's advocates.

"I am cognizant of the fact that you can't allow the things that have touched you personally to drive your decision making," Cole said in an interview. "Alzheimer's, to me, makes a lot of sense just from everything I know about entitlement spending and the baby boomers and the aging of America — the statistics are pretty clear."

It's also clear, though, that Cole's experiences have provided him with a more personal frame of reference for what people with serious diseases, and their caregivers, go through.

"We ought to be doing this because it's the right thing to do," Cole said of the proposed Alzheimer's increase. "And I've watched the human consequences of this disease inside my own family, what it did to my father, what it did to my mom as both a caregiver and then a spouse, what it did to the whole family."

When a Texas woman wrote to him about her husband's diagnosis with the disease, he said, it was a sign that the extra Alzheimer's research money would be meaningful to people like her. "This woman was in an extraordinarily difficult moment of her life. I watched my mother go through that," Cole said. "I understand what that means, when someone you love and spent your life with is now going to be taken away from you one day at a time, literally, as their personality is just stripped away, and their memories lost, and everything else."

And even though Cole didn't propose an increase in research funding for multiple sclerosis, he acknowledged that "it's something that's obviously very personal to me." His wife has progressive MS, which, of the two major types, is the harder one to treat. It's the kind that doesn't have flareups — just a slow, steady deterioration.

Cole said he thinks that precision medicine — individualized therapies based on a patient's genetic profile — "may hold the key here. But again, I don't pretend to be an expert in MS. All I am is an expert in watching my wife deal with it. She's done that exceptionally well."

"It's very slow and gradual. I mean, she still can drive a car, but she can't walk any distance - she has to have a walker and things like that," Cole said. "She's gotten excellent care … but it's a hard disease. It's a very, very hard disease."

Crash course in medical science

There have been other prominent Republicans who have called for an increase in NIH funding after more than a decade of backsliding, notably Newt Gingrich, the former House speaker who helped launch the doubling of the agency's budget between 1998 and 2003. But Cole, as the subcommittee chairman, was in a unique position to do something about it.

During his visit to NIH, Cole brought several of his House colleagues along. The group talked with Collins, the NIH director, about how NIH sets its priorities, distributes funds, and develops its strategic plan.

"He's a very modest fellow," Collins said of Cole, and, therefore, probably "underplayed the level of sophistication he might have already had. But he certainly acquired a lot more in a short time."

Collins recalled that Cole was "particularly impressed and engaged" during a visit to the NIH Vaccine Research Center, and especially during his discussion with Nancy Sullivan, the biodefense research section chief who had been working to develop an Ebola vaccine since the 1990s. The discussion was timely, since it came right after the height of the outbreak in Africa and the scare about the Dallas Ebola patient.

"He asked a lot of great questions about that in terms of, how do you actually go about taking a scary disease like this and turning it into an effective vaccine? Everything from very basic immunology to how do you design clinical trials," Collins said.

Cole also developed an appreciation for the importance of federal medical research funding in conversations with Oklahoma medical researchers, and learned not to assume that private support would take care of all of their needs.

"He has become a more forceful defender of the role of public funding than he was at the beginning," said Stephen Prescott, president of the Oklahoma Medical Research Foundation. "He puts this legitimately in the category of an investment and not a cost."

Cole also had a close working relationship with his Senate counterpart, Roy Blunt of Missouri, a former House colleague who now heads that chamber's subcommittee on health funding.

Blunt is also a big booster of NIH funding, and his version of the spending bill pushed for even more money than Cole's. But Cole has a tougher audience. House Republicans, to a greater extent than Senate Republicans, are perpetually at the mercy of combative Tea Party supporters who want to cut government spending, not increase it. That's the audience Cole and his allies will have to satisfy before the final spending bill can pass.

Closing the sale

Cole acknowledged that the estimated savings if an effective Alzheimer's treatment can be found —$220 billion in the first five years, with 60 percent going to Medicare and Medicaid — is an argument he has to use with "green-eyeshade Republicans."

Yet Cole says the Republicans on his subcommittee were actually easy to sell on a funding increase for NIH. It was the Democrats who took more convincing to back a big increase, Cole said — not because they didn't like the idea, but because they had so many other funding priorities that were competing with it.

"I remember talking to one of my Democratic colleagues [who] made the point that ‘We have different priorities.' And I said, ‘No, we don't have different priorities. We just have fewer priorities. To you guys, everything's a priority,'" Cole recalled.

One of the Democratic priorities, however, was a big one: funding to implement Obamacare, which Cole's original bill would have cut off. Cole is, after all, still a Republican, and his party is still fighting President Obama's health care law. That fight has to get resolved before Obama would sign the funding bill into law, and as of now, Democrats say, it still hasn't been resolved.

Cole saw medical research funding as a rare bipartisan goal that would allow Republicans and Democrats to get past those Obamacare battles, as well as the other fights over social issues that happen every year.

Still, officials at the Alzheimer's Association, the group he consulted on funding for that disease, said he wasn't immediately sold on an increase. He pushed for evidence that the medical science was far enough along to make good use of extra funds.

"He wanted to know, from a science-driven perspective, if there were new resources, could they be used well?" said Robert Egge, the association's chief public policy officer. It helped their case, he said, when NIH released a detailed proposal this summer that outlined the milestones that could be achieved with a $323 million increase for Alzheimer's research.

"On a cost-reward basis, is it worth it? Yeah, it really is," Cole said. "I mean, if anything, we should be doing more than we proposed in our bill. But I think you've got to build capacity over time and go at this step by step."

Online: StatNews