Somewhere in the archives of the Sheridan Group there is a picture of about sixty advocates poised on the steps of the Capitol, all wearing yellow One Voice Against Cancer T-shirts over their suits and dresses. It was our first lobby day as an organization, and everyone was excited and ready to go. The months leading up to that day had been very tough, full of infighting, deep tensions, and competition, but everyone had shown up regardless. About a week after that event a friend who worked on Capitol Hill asked me, “Are you behind all those cancer people in yellow T-shirts? They were everywhere. I’ve never seen the cancer groups do anything together before!” I can remember thinking that we had achieved exactly what I had hoped for: the cancer groups were finally united.
Cancer is the second leading cause of death in the United States and is responsible for almost one out of every four deaths, according to the Centers for Disease Control and Prevention. The American Cancer Society estimates that approximately 40 percent of men and women will be diagnosed with cancer at some point in their lifetime, and the medical costs for cancer in the United States are staggering. Anyone who has heard a doctor say the word cancer knows the chill and fear that comes from those words. I have heard those words myself a number of times in my life, from my doctor as well as doctors of the people I love the most. My beloved grandmother died of ovarian cancer nine harrowing months after diagnosis. In 2010, my mother heard “It’s cancer” from her own doctor. She was diagnosed with stage 3 lung cancer, despite being a nonsmoker—the cancer cells were already in her lymph nodes and spreading through her body. She had always said that she didn’t want to go through chemo like her mother did, but my siblings and dad implored her to think about it and try the new advances in treatment.
On the afternoon before my mom was scheduled for surgery, I was scheduled to give the pep talk at the annual advocacy day we put on for the One Voice Against Cancer coalition. The advocacy day consists of about 250 people hitting the Hill together to support federal cancer funding. I normally give a speech to up the energy and impart confidence. I’d planned to give my traditional rah-rah lines, but spontaneously I went off script. I told the audience to hit the Hill with passion, to make sure everyone they spoke to knew that real lives hang in the balance. “These aren’t budget numbers; they represent my mother’s chances of survival,” I told them. Then I found myself talking about my own cancer scare, when a colonoscopy revealed a mass that required surgery. I didn’t realize until that second that I’d never told anyone outside a small circle of family and friends about that experience, which ended with the finding of a benign growth after a week of tense waiting for pathology results.
So many young people, especially men, aren’t so lucky. Just six months after my scare, a dear friend, former employee, and young father was diagnosed at thirty-six. He had ignored symptoms for six months, and he died less than a year after his surgery, leaving his young wife and one-year-old son behind. To this day it was the saddest funeral I ever attended. It shook me to my core. In telling these stories, after just three minutes I had personalized cancer in front of 250 people who only knew me as their strategist. When training and speaking I always tell audiences that powerful advocacy starts with passion, frequently passion rooted in a deep personal space. On this particular day and in front of this audience, I took my personal passion directly into the advocacy we all were about to share. It wasn’t theoretical for me or for any of those participating. Politics is personal, and it takes a bit of courage to out yourself sometimes, but it is necessary if you want to connect in the moment. To this day people come up to me and tell me it was the most powerful moment of their advocacy experience with OVAC.
In the end my mom reluctantly agreed to chemo—six treatments. She made it through three, and then she could not endure it anymore. We pushed back: “Mom, you raised us all to be fighters, not quitters. We don’t give up.” She simply said she had decided. Her doctors backed her up and told us that if she didn’t have the strength to do it, we should listen to her. We did. After that she went for checks every six months, and for four and a half years she got clean scans—only one more to go and she would officially be in remission. Just one month shy of that last scan my Mom felt crushing pain in her hip the day after Thanksgiving. A week later she got the final diagnosis. The cancer was back: in her bones, lung, and liver. She had months to live. She died on July 4, 2016, a month shy of her seventy-ninth birthday. There are no members of my family who aren’t cancer advocates now. Once you lose someone you love to this disease, you quickly realize that we must all try our best to stop it or at least greatly improve how we manage cancer treatments.
Given the alarming statistics and the number of personal tragedies, you would think that the cancer community would be well represented in Washington, focused on getting the funds to continue the search for a cure. However, before 2000 this could not have been further from the truth. The American Cancer Society (ACS) was founded in 1913 and had been educating the public and advocating in Washington for years, but they were not popular with the newer “body part” groups, which focused on specific types of cancer. These newer groups were bold, brazen, dynamic, and nimble. They were fueled by a passion that was not hobbled by bureaucracy and took a new approach that brought attention and rapid success. I knew many of the leaders of these groups because the AIDS movement had inspired them. Many of them had come to me for advice on how to build successful movements around specific diseases, and they had been remarkably successful in achieving their goals. The ACS had underestimated the power of the groups until it was too late to contain their breakaway efforts, and the cancer community was incredibly fragmented.
At the time there were more than forty different cancer advocacy organizations constantly competing with each other for funding. The ACS was the behemoth in the group and viewed the other groups as competitors, threats, and annoyances. They had no desire to facilitate strategies or policy initiatives that were responsive to the body part organizations, and the body part groups were often too busy warring between themselves to even care. There was no cohesion, no unity, no common goals.
I can remember working with the AIDS lobby and telling people that we were successful precisely because we weren’t the cancer community. We would have a letter signed by over a hundred organizations agreeing on the amount of money the AIDS community wanted from national public health agencies, and the cancer community would be literally fighting with each other in the hallways of Congress, unable to make any progress. Everyone agreed that fighting cancer should be a top funding priority, but no one could agree on how that funding should be distributed. If one group got more than the others, they would turn on one another instantly.
Politicians didn’t want to get in the middle of a fight between cancer groups, so they would just walk away. As a result their funding suffered. It was truly a shark tank: highly competitive, personally venomous, notoriously backbiting, and decidedly ineffective. Groups fought sometimes over merit but more often on turf or bragging rights: an incredible waste of time and effort. I had always stayed on the sidelines, keeping my ideas to myself, but in spring of 1999 I found myself with the opportunity to try to turn the cancer community around.
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The CEO of the ACS at that time was John Seffrin. He had been the CEO since 1992 and had been a volunteer there for many years. I had gotten to know John through the antitobacco coalition and we had a strong respect for one another, so when he asked me for my opinion on the overall effectiveness of the cancer community and my views on the ACS’s lobbying team, I told him the truth. As I saw it, he desperately needed a change of leadership in his Washington office. It would take a change at the top to make any progress. John asked me for recommendations of people who could fill the position, and while I didn’t have any good suggestions at the time, a serendipitous lunch meeting a few weeks later would prove to be the start of a huge change in the cancer community.
My friend Dan Smith had been chief of staff for Senator Tom Harkin of Iowa for four years, and when we met for lunch he told me he was thinking about leaving Capitol Hill and looking for a new job. I knew Dan would be great for the ACS, and I immediately recommended him to John. Dan was quickly hired to become head of government relations for the ACS, and he and I had an honest conversation about the state of the cancer lobby. I wanted to make sure he knew the mess he was about to get into. I also had a plan for how to fix things. For years I had had an idea of how to help the cancer groups, but there hadn’t been a leader I could give the idea to, and I didn’t want to get involved without having a leadership organization as my client. I’ve always liked challenges. Here I saw an opportunity to prove that this dysfunctional group could be organized and start to function effectively. The ACS had the resources to make a difference and they also had a serious problem within the community that they needed to solve. Dan has been with me on this work since the start and provides a second view at the end of this chapter.
My idea was for a coalition paid for by the ACS, run by the Sheridan Group, and open to all cancer groups. The coalition would focus exclusively on budget and appropriations, with the goal of getting enough funding that it could be split between the groups when it came down to the specifics. The Sheridan Group was nearly ten years old at that point and had a reputation for being the leading strategist and facilitator of coalitions in DC, particularly for the nonprofit community. We were known for our capacity to put people together who were hard to work with and then creating a successful outcome. This opportunity was perfect for us, and I was confident we were the right people for the job.
Dan loved the idea and introduced me to one of my favorite terms: coopetition. In this case, groups would be cooperative on the big numbers and competitive on the smaller line items. It would take many more meetings to hammer out the details of the new coalition, but we always stuck true to that original plan. In addition to embracing coopetition we also developed a “bake a bigger pie; slices are up for grabs” model. If a group wanted to join the coalition they had to be willing to work with the other groups in order to increase overall cancer funding, and then they could compete to get their specific slice of the pie. The converse was also true: if you didn’t work well with others and do your part, you’d be disadvantaged when it came time to share in the benefits. When working in politics, a basic Darwinian factor dominates the process. It’s essential for effective change makers to always be aware of this dynamic and to toughen up to it as soon as possible.
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In January 2000 One Voice Against Cancer (OVAC) was founded, with the goal of substantially increasing federal funding to help cancer patients and their families. We hoped that an increase in federal funding would allow for more cutting-edge research, a better quality and availability of care, and an enhanced capacity for prevention, screening, and detection. In addition to our major funding goals, we also had objectives, including creating a benevolent leadership role for the ACS, eliminating the negative competition between cancer groups, and creating a new political force for cancer. We didn’t just want to increase funds; we wanted to change the way cancer groups operated.
That first year of OVAC was truly a challenge. The ACS paid us to facilitate the development and strategy of the coalition. This allowed Dan to chair the effort but left the strategy and direction up to us. Because he was new to the cancer community Dan acted as a humble leader, almost more like a peer, which diffused some of the negativity around ACS, enabling them to work more cooperatively with others. We had to set up a model for the coalition itself, figure out the strengths of the organizations we were working with, create targets, and then focus on the policies we would be working to change. Our goals were ambitious, and we knew the stakes were high. The United States needed to put more funding toward fighting cancer, and this was our one chance to turn a dysfunctional community into an efficient lobbying force.
From the start it was rough going. All of the smaller cancer groups hated the ACS just as much as they hated each other, so it took some big steps from the ACS to prove that they were willing to cooperate. The ACS had to back away from pushing their own interests in order to show the others that they valued the collective. The success of the ACS’s efforts was mostly accomplished by Dan’s leadership style: he was laid-back, calm, and generous and deferred to colleagues at every opportunity. It was obvious that the ACS was paying for all of OVAC’s efforts, from the catering at meetings to the sponsorship of the annual lobby day, but Dan never used that to his advantage. He curated an air of benevolence and humility that was essential to the success of OVAC.
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OVAC could not have held together at the beginning without a neutral party present at the negotiations, and that’s where the Sheridan Group stepped in. The cancer community had been so contentious for so long that it was hard for people to put aside their grudges. I described myself as the ombudsman; anyone with a trust issue or a perceived conflict with another coalition member was welcome to come to my office for a discussion and a pledge to try to resolve it. I was fair, but tough; when discipline needed to be enforced, it was my job, and when commitments weren’t met, it was my job to call and make sure things kept moving. I had served in this sort of role at the inception of the AIDS lobby, and the reputation for doing it well had stuck. I was there to manage the process to make sure that we achieved our goals, enabling us to reward groups for their cooperation. I had a relationship with most of the groups, so they knew I was serious and not very tolerant of drama and internal nonsense. Frankly, it was sometimes tiring to always be the bad cop, and I will admit I sometimes lost patience with all the infighting. But in the end I knew it was a necessary role for someone to play; without an ombudsman at the table there would be no common ground and the entire effort would fail.
Early on the decision had been made to focus exclusively on budget and appropriations, which was the best way to get a big pie that could then be divvied up among our various groups. Each line item in the budget had to be debated, and we spent endless hours in meetings trying to hammer out compromises. One of our ground rules for OVAC priorities was that a member organization had to take the responsibility to do the work to prepare a budget request and do credible work creating a justification for it. Each year we’d gather for a full day and debate the merits of each organization’s request. If no one showed up to propose the line item, we did not include it. If an organization only showed up at the annual meeting but didn’t do any work the rest of the year, their request had to come with an explicit commitment for improved participation, done publicly in front of the entire group. No free rides were allowed.
That yearly meeting was always a struggle to find the right combination of increases in spending and strong justifications. Not all organizations had the same level of policy expertise; most didn’t have keen political instincts. They varied widely between hopeless optimists and constrained conservatives. The breakdown of how individual cancer groups usually requested funds occurred along common fault lines—the smaller cancer groups that perceived themselves to be ignored or unfairly treated in budget allocations went high—payback for past slights. In those days the very aggressive and successful National Breast Cancer Coalition was the enemy—their success was perceived as a loss for prostate cancer or lung cancer. Other cancers affecting women, such as ovarian cancer, raged over the lack of balance in funding cancers affecting women generally. In those early meetings it felt like refereeing a Hobson’s choice convention. Leveling the playing field so everyone felt heard and respected and ensuring that the funding requests were politically relevant took hours of debate and weeks of back-channel negotiations and coaching. I remember spending a few days a week for well over a month just helping the lung cancer coalition understand the NIH funding process and why their requests needed to meet a justification standard that was greater than “we want that number because it is what breast cancer gets and we have more patients than they do.” Reaching consensus was never easy, but once we reached an agreement—and we always did—each organization had to be committed to carrying the whole plan. No side deals were allowed, all materials had to carry the overall ask, and each organization’s individual lobby materials had to endorse the OVAC numbers.
Dan’s relationship with Senator Harkin was incredibly helpful in getting everyone on board, as during those years Harkin was either the chairman or the ranking member of the appropriations committee that decided on the funding for the NIH and the CDC, the two largest budgets of the public health effort on cancer. Everyone in the coalition was well aware of the consequences of offending or crossing Dan and how that could easily be passed on to Senator Harkin. And while Dan was careful never to threaten or intimidate, I could occasionally hint at this connection and use it as a bargaining chip for better cooperation from coalition members. Very early on in the OVAC development process, one particular cancer group made a rather bold move to undermine Dan’s leadership and split the coalition into factions. Their strategy was divisive: they said you could either be part of their group (focused mostly on research and pharmaceuticals) or be part of OVAC. It was ridiculously immature, a high school lunch room move. Dan simply told the new OVAC membership that there were no choices necessary—everyone was welcome at the OVAC table regardless of affiliations with other firms, coalitions, or groups. As Michelle Obama famously stated, “When they go low, we go high.”
One particularly successful funding effort came from Paula Kim, the co-founder of the Pancreatic Cancer Action Network. She wanted to prioritize the deadliest cancers and pointed out to me that while funding had grown for the larger cancer demographics like breast cancer and lung cancer, the cancers that were the deadliest, like pancreatic cancer and brain cancer, were far behind in funding for both prevention and care. She and I worked together to get the OVAC community to embrace a “seven deadly cancers” initiative that raised those budgets proportionally higher each year for five years. The key to this was to assure all the coalition members that this initiative was a rising tide; its success would not come at the price of other success, but would instead create political capital to keep all the line items growing.
Other groups were less successful because they were unable to use this sort of approach. There are multiple programs and line items in the federal budget that help support cancer research, treatment, and care, either directly or indirectly. We were able to carefully choose the line items that we viewed as in need of additional money and/or policy language, and then focus all of our attention on those items. When our rogue colleagues simply didn’t do well (or as well) in the budget and appropriations bills, we were clear with our coalition members why that was the case. There must be consequences for actions that are undermining the goals of an entire community, and the only consequence that matters in the advocacy game is a loss. Political actions and behaviors have to be appropriately rewarded or punished. The National Breast Cancer Coalition (NBCC) never joined OVAC, and while other breast cancer groups were able to keep OVAC focused on their funding goals, the NBCC’s attempts to get more funding from the Department of Defense were ultimately unsuccessful. Yes, OVAC supported the NIH and CDC line items for breast cancer, but we didn’t carry the DOD line item that NBCC had exclusively valued. In moments like this it is important to keep your mind on the real goals; we could only be successful if we stayed focused on getting better cancer treatments and working toward a cure.
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Billions of dollars were at stake, and we were always careful to ensure that the tenor of our work and our rules reflected that. If a group went off and presented their own numbers to members of Congress, they were treated harshly by the rest of the group: board members were called and policy staff on Capitol Hill were told to no longer trust that group. After we won a CDC line item for the International Melanoma Foundation, they stopped participating and left the group. They were never welcomed back to OVAC, and they never saw another increase to that line item after they won the first round and left. Thankfully, that sort of behavior was a rarity, and for the most part everyone was careful to observe our rules. Competition was only tolerated on the smaller issues within the group; to the members of Congress we worked with we presented a totally unified front. It was important that we were always on message, always presenting the same funding requests.
Our coopetition and slices of the pie approaches proved to be hugely successful. We were first out of the box every year on budget requests across all disease-specific groups and were able to get big numbers on our important goals as well as getting specialty initiatives and programs for the smaller cancer groups. As the biggest player in the game, the ACS was still getting the largest share of the funding, but they were no longer fighting with the smaller groups; their reputation had been restored and their leadership was gaining trust. We had even found a way to incorporate the volunteers from all of the different cancer groups that made up the coalition.
Early on in the creation of OVAC we were trying to figure out how to harness the vast network of volunteers that the different cancer groups relied on. We eventually developed a two-part strategy, focusing both on lobbying in the Capitol and training volunteers in coalition members’ home areas. Four times a year a professional team of grassroots trainers would travel the country to put on seminars, seeking to teach cancer advocacy groups how to do effective lobbying, using OVAC as the model. This simple but brilliant idea began to create an arm of well-trained volunteers who made OVAC’s budget goals a priority to constituents. Other groups utilized fake grassroots efforts—sometimes called astroturfing, which involved having constituents fax or mail in preprinted messages to Congress. This can be effective for a final push, but we were looking for quality not quantity in our advocates, and so we would train any cancer group that was willing to have us. We wanted real people, real stories, and live phone calls to really make the impression we wanted. These advocacy techniques helped promote the ideas of cooperation and communication that we were trying to establish in every OVAC meeting.
In addition to our work across the country, we instituted an annual lobby day, which has become a huge and successful event for OVAC. We would invite people from across the country to come to Washington, DC, train them on the specific funding asks the coalition had agreed on, and then send them off to Capitol Hill to meet with members of Congress and their staff. I don’t remember whose idea it was to make everyone wear yellow OVAC shirts that first year, but those shirts helped to remind everyone that we were now one unified group. A few years later, when the Congressional Management Foundation—a research organization that looks at how Congress functions and what affects it—rated the most effective lobby efforts, the cancer lobby was the only nonprofit public interest issue on their top twenty list. OVAC had made its mark, and its effectiveness was independently validated. That was a particularly proud moment for me. It was now time to join forces with another coalition that had been working hard to increase the budget of the NIH.
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In the late 1990s, Congress had made a commitment to double the NIH’s budget by 2003. In the forty years before that, the NIH’s budget had doubled on average every ten years, so this commitment sped up the usual process and was obviously going to require a lot of cooperation. A group had been founded to take on the lobbying work to support the doubling goal, called the Campaign for Medical Research (CMR). CMR was run by Kevin Mathis, with Robert Michel and Paul Rogers as the Republican and Democratic lobbyists, respectively. Most of the work came from the coalition members, operating under a plan similar to OVAC’s. I had been keeping an eye on their progress as we developed OVAC. They were really taking on a huge challenge—just to get the cancer groups to identify, prioritize, and agree on the cancer budget was a tall order. To get all the stakeholders around all the money at NIH to agree felt even to me too big to manage. But brilliantly they went for a simple message and simple goal—double the NIH budget in five years. This simplicity stopped what frequently is the breaking point of issue-based efforts—that they get stuck in the weeds, going for perfect when possible would succeed. Once they avoided that trap, we jumped in willingly and enthusiastically. By 2001 I had seen their successes and knew it was time to join forces and really push for those final few years of funding increases.
Much like in the early days of OVAC, the NIH funding effort required many different groups to work together for a common goal. The decision to start working with CMR was not an easy one; OVAC had just started to hit its stride as a cohesive group, and we knew the reason for our success was our focus. If we broadened our agenda to include NIH funding, it could seriously threaten what we had collectively built, and people worried that working with CMR would dilute OVAC’s effectiveness. Yet I was firm in my resolution to replicate the successes of the coalition I had formed during my time with the AIDS lobby. A doubling of the NIH budget overall would be a big win for cancer, but a failure to increase the budget would result in a disease war, with everyone scrambling for a piece of the smaller pie. That seemed like an incredible waste of time and resources, and so we joined the fight.
By this time we were big and known for being effective, so lending CMR our support really made a difference. Part of what made our partnership so strong was that, much like Dan’s close relationship with Senator Harkin, Kevin had a relationship with Senator Arlen Specter, who was also often the chair of the appropriations committee that funded the NIH. (The majority party of each chamber selects the chairman and leadership of the committees. Tradition has dictated that those assignments are done by seniority, determined by years served. Recently the Republicans have term-limited their leaders, allowing only six consecutive years as a chairman of a committee or subcommittee. Each party in each chamber has its own rules, but the majority party always gets the chair, with the minority party designated as ranking member.) In this situation, we had the perfect inside/outside collaboration between OVAC, CMR, and the two senators. In the end, our efforts were successful: the NIH’s budget was successfully doubled, and a large portion of the extra funding was directed toward cancer research.
The cancer community had come a long way from those fractious days in the nineties. Turning around such a dysfunctional group had required a lot of hard work, but we ended up with a coalition we could be proud of and some very clear successes. Our efforts were clearly evident in the rapid advance of medical research in the years following the increase in the NIH budget. Smaller cancer groups that worked hard were rewarded with specialty initiatives or programs that were unique to their needs. OVAC always focused on winning the big-picture goals but consistently made sure some of the “small stuff” got attention, too.
For the ACS in particular, this effort was a triple bottom-line winner: they got big numbers on important goals, including a 400 percent increase in cancer research funding at the NIH and CDC; they got the lion’s share of funding as the biggest player; and they restored their reputation and solidified relationships that they badly needed if they wanted to maintain leadership. As I write these words I’m struck by how far cancer research and treatment have come. The progress of research that was catalyzed by this important coalition effort has changed the cancer landscape in profound ways: Gleevec was discovered for the treatment of leukemia; the advent of proteomics to pinpoint proteins in cancer cells and design treatments has led to breakthroughs in lung cancer treatment; the gene mapping that leads cancer prevention and early detection has created a pathway to prevention protocols we could not have imagined when OVAC began. The Sheridan Group’s work on this campaign remains an example of a relatively simple, inexpensive effort that truly changed the world. As with so many of the issues and campaigns we’ve worked on, this battle is not over. Cancer has not been cured, but the last twenty years have led to transformative progress, and in that we see hope.
After spending a decade of my career on the Hill working in a variety of capacities for Senator Tom Harkin, including four years as chief of staff and two and a half years as staff director of the Agriculture Committee, I was hired to be the new vice president for government relations for the American Cancer Society in 1999. I came into that job knowing a lot about Congress and how decisions were made and virtually nothing about the cancer community in Washington, DC.
During the time I worked for Senator Harkin he served as both chairman and ranking member of the Labor, Health and Human Services, and Education Appropriations Subcommittee, and while I was not running that subcommittee day to day, I sat in on many meetings where important decisions were made regarding funding levels. One thing I knew for sure (having been in “the room where it happens”) was that when communities sought funding for their important projects, especially disease groups, it was important to present a united front and make their best case to the appropriators. Communities fighting among themselves greatly harm their cause, because no politician wants to step into a nasty internal community battle. This basic knowledge helped me understand that the cancer community could do better by working more closely together (rather than body part by body part), and so I went to work with my good friend Tom Sheridan to form a new coalition of cancer groups to work together to increase funding for important cancer research and prevention programs at the NIH and CDC.
There were many challenges as Tom and I worked together to form this new coalition. Many in the cancer community were suspicious of ACS, wary of what ACS wanted out of this new coalition, and skeptical ACS would share credit. Years of strain and mistrust between ACS and some smaller cancer groups was a preexisting condition we had to tackle. As Tom often said, “I didn’t pack those bags, but unfortunately, I have to carry them.” Building trust is an essential part of new coalition building, and we worked hard to overcome these issues. I made sure to listen to everyone’s ideas, craft a logical agenda that had something for everyone involved, and gave away the credit whenever possible. Tom and his firm served as the neutral ombudsman allowing coalition members to vent frustrations in a safe space, be heard, and have their opinions acted upon. Smaller cancer groups knew that Tom had my ear and we would work hard to address their needs.
Some groups never did come on board, but one of the keys to building a coalition is to not let a couple of naysayers stop you from moving forward—hard as they may try. If you have a good idea and you are willing to stand behind it and take the slings and arrows, that idea will prevail. Seventeen years later, One Voice Against Cancer continues to be strong. I am enormously proud of the work we did to make this happen and result in billions of additional dollars dedicated to cancer research and prevention.
I have never seen such an unproductive group as the cancer community in the 1990s. Nothing was being achieved, and yet cancer was affecting more and more of the general population. A drastic change was needed in order to achieve success. If you ever find yourself trying to corral such a fractious set of players, there are some important things you should keep in mind.
There was no way for any of the current groups to suddenly break out of the infighting and establish a peaceful coalition. While it was the ACS that technically established OVAC, they were not going to be able to sit at the table with the other groups and enforce order from the start. My presence and that of my staff at those early meetings allowed OVAC to prosper, as we were able to facilitate when conflicts arose and generally keep the different groups aimed toward the same goal. If there is tension and mistrust between the groups, you need to remember that time and shared experiences can heal those wounds. A well-known, well-respected third party can often speed up this process.
The ACS has been around for many years, but they were getting nowhere due to their fights with the smaller, newer cancer groups. Once we convinced them to establish OVAC and back off a bit from their own self-interests, the smaller groups came to see the ACS as a benevolent leader instead of a divisive enemy. As a result, the ACS got the funding they wanted, and the smaller groups did as well: everyone prospered. This sort of approach is not easy or simple. It requires a commitment from the senior leadership of a big organization to humble themselves in this manner. Dan’s leadership skills were essential in bridging the gap between OVAC members and the senior leadership of ACS—he knew it was crucial to make sure the ACS leadership understood and valued their commitment to OVAC.
In the early days of OVAC, we spent a lot of time going over our agenda and choosing the budget items we wanted to fight for. We didn’t want to take over the world; we just wanted to solve one big problem. The budget and appropriations process is by no means simple, but it does work in an established time frame with clear, quantifiable results. This made it easier to create a focus, establish goals, and figure out what resources from the different groups we would need in order to succeed. Knowing that our main goal was to increase cancer funding overall, the smaller groups were willing to compete over the smaller issues; if we met our big goals, they knew they would reap the benefits. Having goals was also useful when talking to the people in Congress, as every meeting they had with someone in the cancer community went the same way. There was no confusion over which parts of the budget were important to us; we were able to clearly state our goals in every meeting we had on Capitol Hill. In the end, everyone has to see that they can and will win, or the reason for playing together doesn’t make sense.
Policy: Finding a policy position that allowed competing and antagonistic cancer advocates to coalesce was not easy. There is a fine line between too much detail, where disagreements are always petty and unproductive, and too little detail, where it’s not clear what success really looks like in the end. For OVAC we found the “just right” spot by doing two things: being very narrow in our focus on only budget and appropriations for cancer funding, and establishing a clear rule that a coalition member in good standing had to support any request the overall coalition carried. In the end, this allowed us to have clear and measurable goals, allowed each coalition member a priority to justify their engagement and work, and created accountability that was mutual across all coalition members. Our policy was created annually at an all-day meeting in January (before the budget and appropriations processes begin), and each line item was presented by a member organization for review and discussion. It was a long day every year, but once we’d decided on our requests we had our policy ask for the year, and from there on out the work was about achieving goals, not debating process and substance. This all-day meeting proved to be extremely effective.
Politics: The political challenges for OVAC were multifaceted—internally within the individual groups, externally with Congress, and specifically focused on the ACS’s role and leadership. It is not an overstatement to say our biggest political challenges were indeed internal to the cancer community itself. The competition, resentments, and distrust within the community were singularly blocking any path to effective external politics. Resolving that was the most important step. The ACS had the resources, and in Dan it had an opportunity to present a new leadership model, but it was distrusted and disliked by a nearly unanimous “body parts” lobby. The need to coalesce was blocked by a resistance to the ACS’s leadership. Our breakthrough was the fact that Dan’s relationship with Senator Harkin was an asset none of the groups could afford to squander—it was never said, threatened, or used overtly, but it was understood, and it provided the impetus to create and mature OVAC. Once we got the groups on board, working effectively and trusting each other, the politics of Capitol Hill fell easily and successfully into place.
Press: Our press strategy was simple and straightforward. We didn’t need to create a reason to prioritize cancer—every reporter had their own experiences and stories. Our challenge was to make it feel more urgent, make it more politically necessary to take bold actions, and hold politicians more accountable if they failed to act. We also used the creation of the coalition to grab a little attention. The press had covered the now infamous AIDS lobby, and this was a second-generation story—how cancer advocates learned to do it differently and better. AIDS had the press angle of ACT UP—cancer wasn’t going to get that kind of activism or drama. On our first OVAC Lobby Day, we dressed 250 advocates in bright yellow T-shirts and posed them on the steps of the Capitol for a photo op. We got a multitude of uses from that photo, and it made an important impression. In addition, we used cancer advocates to write letters to the editor and op-eds for local newspapers, and to attend editorial board meetings. Members of Congress read the local papers more thoroughly than they read the New York Times or the Washington Post. Cancer patients and families have powerful, heartwarming, and heartrending stories to tell, and we were able to harness those stories and always, always put the ask at the end. It wasn’t fancy, but it was effective.