By Kate Gerringer

Challenges come with the territory, but it’s the rare CEO who finds himself or herself in a six-year battle to reclaim millions of dollars in research funds misspent by a federal agency. Yet that is exactly where Kim Kenney found herself after becoming president and CEO of The Chronic Fatigue and Immune Deficiency Syndrome Association of America (TCAA), Charlotte, North Carolina , in 1991. She and TCAA won, identifying CFIDS research funds that were misused by the Centers for Disease Control and Prevention (CDC) between 1995 and 1998. Redbook magazine noticed, naming Kenney one of its 2001 “Mothers and Shakers” for her contribution in health care, and she took her place with luminaries such as Hillary Clinton, Marlo Thomas, and Sarah Ferguson at a ceremony September 10 in New York City. 

The persistence, focus, and leadership Kenney demonstrated throughout the CDC fight have served her well at TCAA. Indeed, a critical challenge is establishing within the medical community that CFIDS , a condition characterized by unrelenting exhaustion and many other symptoms including muscle pain and cognitive impairment of six months or more is a legitimate, medical disorder that requires funding and research just like any other disease. The cause for the disease is still unknown. “It is an illness that is not only not well-recognized,” explains Kenney, “but recognized improperly and ridiculed.” TCAA wants to change all of that.

What began as a local support group in 1987 has grown into a national organization with a full- and part-time staff of 19, a $2 million budget, and 20,000 members. As its mission expanded, TCAA began publishing The CFIDS Chronicle, a quarterly magazine that provides members—people with the illness, their friends and family members, and doctors and researchers—with research news, coping strategies, and updates on government-sponsored programs. Fostering research studies continues to be a main tenet of TCAA’s mission. To date the association has independently funded more than $3.5 million in research projects.

 “We’re in this business to go out of business, meaning we are going to find a cure for this illness,” asserts Kenney. “And I’m just passionate about this cause. I don’t think you can run an organization of any size effectively without a personal sense of commitment.”

In this interview with association management, Kenney shares her unique perspectives both on leading a challenging organization and on tackling the “Goliath” that stood in the organization’s way. 

Association Management: How did you discover the $12.9 million misspent by CDC?

Kenney: In my first year with the organization, we were trying to get a better handle on how much the federal government was contributing to the research effort. With the help of The Sheridan Group, a small Washington lobbying firm, we began a reconnaissance project and asked ourselves questions such as, “CDC says they’re spending this much. What are they spending it on?” “National Institutes of Health has made these grants. What’s the total amount? What’s the focus of the research that they’re funding?” Very quickly it became evident that, particularly at CDC, the numbers didn’t add up. They said that they were doing a couple of studies, on which they were spending an exorbitant amount of money, but they never published any research findings.

At that time, the CFIDS community had a polarized relationship with federal scientists. There was a lot of animosity going in both directions. That didn’t sit well with me. You can’t move forward while having an embattled relationship with these federal agencies. They are just too big; they will crush you. 

Association Management: What was the association’s next move?

Kenney: Even though we knew that the money wasn’t adding up at CDC, we decided to take a proactive approach to solving the problem. We began to change the dynamics of our relationship with CDC and the research community, not in letting people off the hook, but in causing them to be accountable on a respectful level. Every time we went to a meeting, we asked for their budget and for a report on what research they were publishing, how many people were working on the illness, and what lab resources they had. Basically, we were cataloging the research effort by each of the agencies.

In turn, some CDC officials were playing sort of a shell game with us. One year they reported expenditures on lab studies, surveillance studies, and case control studies. The next year they broke out their budget with a totally different set of categories, like lab supplies, travel, personnel, and computer assistance. So you couldn’t marry things up. But eventually they slipped up, which we were waiting for.

Association Management: So in the public eye you were working with CDC and trying to hold them accountable for their actions, while behind the scenes you were building your case.

Kenney: Right, we were establishing relationships with individuals at CDC who may themselves have been harmed by the fact that they weren’t getting all the resources they needed. These are scientists at the laboratory level who are reporting out what they’ve done, knowing that expectations were high, based on the amount of money that was spent. We were clamoring, “That’s not enough. What do you mean you did no laboratory studies? You spent $3 million in lab supplies last year. Where did that money go?!”

Association Management: And that’s how you got your big break?

Kenney: Yes. After being pressured at a public meeting in April of 1998, the primary CFIDS investigator at CDC, Dr. William C. Reeves, came to me with this enormous stack of papers and asked for our help. So that’s when we made sure we had all the documentation to credibly prove the funds were diverted to other programs. We arranged appointments for Dr. Reeves on Capitol Hill, and he went forward to federal appropriators for Health and Human Services and the Office of Management and Budget and exposed the whole thing. That triggered an audit by the General Accounting Office and the Inspector General and, of course, everything was validated. We knew funds were misspent prior to 1995, but since we just had evidence from 1995 to 1998 that’s what we focused on.

Association Management: Wow. That’s not your everyday story of association work. How did you reconcile this activity with your organization’s mission?

Kenney: I kept the board informed in general about what was happening, but we had to keep Dr. Reeves’s information confidential, at least for the time being. I made sure to underscore at every board meeting the importance of the association’s role as watchdog, if you will, an enforcer of congressional intent and legislative language, and the absolute need to hold people accountable.

Association Management: So when the association first began, being a watchdog wasn’t seen as key to the mission, but once you discovered that the research funds were being squandered, then advocacy and public policy initiatives quickly became a priority.

Kenney: Exactly. We also woke up to the fact that we could fund all the $15,000 research projects we could raise money for, but without the help of the federal government we were never going to achieve our mission—to find a cure for CFIDS. The disease is so complex and there are so many body systems involved, it was almost as if every research project that we funded raised more questions than it answered. Building a partnership with the federal government was our only option. As crazy as that sounded at the time, after discovering that CDC misspent money and lied to Congress about it, we needed to go forward in spite of that. To say: We want to be part of the federal effort to conquer this disease and to make health agencies do the right thing by their patient constituency.

Association Management: Meanwhile, you still had a magazine to get out, a research program to run, a Web site to build, and fundraising events to host. How did you keep going in spite of having a majority of your attention focused elsewhere?

Kenney: Ours is a relatively small organization, so it was a matter of commitment. We had to keep those other programs going and continue to serve our members’ needs or we could’ve lost the organization. Then all of our hard work would have been pointless. So it was challenging from a time management perspective, from a personal perspective. I was able to do it with the help of an amazing staff. We each made the commitment to stay focused on what we could do that day to better serve the patient community and to not lose sight of their current needs. And truthfully, we didn’t know for sure if this thing was ever going to pan out.

Association Management: Having been through this experience, what advice would you give to other association executives faced with complex, even sticky, challenges?

Kenney: I would say a couple of things. First, be true to your mission. It is easy to stray from that in difficult times. You might compromise your integrity in order to take a short cut or to make short-term gains, but in my experience, all of those things will end badly. If your organization is true to the mission, if your leadership is true to the mission, and if your integrity and ethics are all built around that mission, then success will follow. 

Second, persistence and tenacity pays off in the end. In your gut, if you know you’re right, you’ve just got to find the personal courage and the strength to keep pushing in that direction. There were times that what we had was very thin and it seemed that this was too big an issue for an organization of our size to ever conquer. At times I thought that there has got to be an easier way to make a living than what I’m doing right now. But there was just a lot of personal commitment to seeing it through.

Association Management: What is the number one lesson you’ve taken from this experience?

Kenney: You can’t put a price on personal credibility. That has advanced our association more than anything else, because breaking the scandal itself would not have been enough. By doing due diligence and only coming at CDC when we had the proof to back up the accusation, we showed that we had integrity and that we were in this fight for the right reasons. We used that credibility to then work with Congress in getting back the $12.9 million for CFIDS research.

We have come a long way. We now have a seat at the table to help set the priorities for funding CFIDS research projects—not just holding [CDC] accountable after the fact—which is a much more powerful position to be in. If you give away your credibility in the fight to do what you think is right, you have little left in the end.

Association Management: How would your staff and board describe your leadership style?

Kenney: I’m very much of the opinion that if you hire competent people who are dedicated, then you’ve got to give them room for their own successes and mistakes. You build a framework for them to do the work that they’re asked to do. I try to get what my staff needs to do the work the board has directed us to do—whether those resources are financial in terms of donations and funds from foundations; whether it’s strategic partnerships with other organizations to work together on shared goals; or whether it’s better employee benefits to keep and retain talented staff members. That is my role; I’m the resource recruiter.

Something that various board members have told me is that I’m resilient. I’ve learned the thick-skin approach and can get back up after a disappointment or defeat with more resolution to make it right the next time.

Association Management: What engages you as a leader?

Kenney: Being able to think through a prism and see how all the aspects of my organization relate to one another—that’s what engages me. I think about all the things my organization is doing—how advocacy campaigns contribute to our research efforts; how new researchers joining the field translate into receiving federal funding and in turn leveraging media opportunities. Being able to weave those independent projects that make the pieces more than the whole and see opportunities that may not pay off for six months or a year but have the ability to accelerate our progress—to me, that’s what being a leader is all about.

Kate Gerringer is managing editor for Association Management.

"Reprinted with permission from the August 2002 issue of Association Management , copyright 2002, American Society of Association Executives, Washington, D.C."