A Conversation with Janet McUlsky About Patient Advocacy

HealthyWomen: As a girl, what did you want to be when you grew up?

Janet McUlsky: I wanted to be a member of Congress because my grandfather was in Congress for 42 years from Cleveland, Ohio. He was significantly older, and I didn't know him well, but I heard so many stories about the really wonderful work that he had done.

HealthyWomen: And when you went to work on Capitol Hill when you graduated from college, did you do that thinking that you would eventually become a member of Congress, that you'd run for office?

Janet McUlsky: Yes, that was the plan. It was only after I started working up on Capitol Hill that I realized what a tough job they have and how much it really consumes your life. Actually, as I started working up there and seeing how much they dedicate to their jobs and to their constituents, I was really not sure that was what I was prepared to do and so started thinking about what other ways I could give back and be a really useful part of society that maybe didn't include that much contribution of my personal life and time.

HealthyWomen: Was there a particular event or experience that led you into patient advocacy?

Janet McUlsky: At the time I was leaving Capitol Hill, I thought about what it was that I would find inspiring and would make me feel like I was giving back. Healthcare was an area that I felt a personal interest and passion for. And, it was in the 1980s, and patient advocacy didn't exist the way it exists now. And so what I found inspirational was that at the time I was hired by PhRMA they were open to really moving patient advocacy into the new space that it is now, where it really is about asking, “How do you have patients control their lives and their care, and how do we have the advocacy community help them develop those skills and knowledge base?” It was doctor-centered healthcare at the time, and I think our goal was to not take anything away from the physicians and all the healthcare providers, but to give more control and power to the patients.

That was really where we started in the 1980s — an attempt to empower patients to have more control. We worked a lot with the insurance companies at the time to ensure that they allowed patients to have access to information about what was covered and what wasn't covered, whether it was procedures or pharmaceuticals or whatever, so that they could know that they were getting the quality care that they needed and they deserved.

HealthyWomen: What are you most proud of during your five years at PhRMA?

Janet McUlsky: I think that we did pivot to much more of a patient focus, where patients were able to be educated and informed, so they could really have power over their healthcare decisions, and that was really important. And PhRMA, broadly speaking, as an industry, supported that concept and felt like it was important, and we built longer-term relationships. It was less about the individual issue at hand, but really about building out longstanding relationships between the companies, the trade associations, and the patient advocacy community. I think we did that in a meaningful way, giving information and, therefore, power to the advocacy community so that they were able to control more and make decisions that impacted the healthcare of the patients they represented.

HealthyWomen: After a brief time at a startup, you went on to direct National Alliance Development at Pfizer. What were your goals when you first arrived?

Janet McUlsky: My goals were to continue what we had started at PhRMA, which was to build the long-term understanding and commitment to the goals of the advocacy community and incorporate those in Pfizer's goals. When I joined Pfizer, I only did public policy, which was about the fundamentals of helping patient advocacy groups become more impactful and be able to impact regulatory decisions or legislative decisions that impact patients.

We really wanted to help the advocacy community become more sophisticated and more able to impact decisions; so much of it was done outside of their control previously, and we wanted to help them understand more of the legislative proposals that were coming down the pike and provide support to help them build relationships with Capitol Hill, with legislators.

If you look back into the '80s and '90s, they didn't have Hill Days [when groups meet with members of Congress]. They didn't have it to the level that they have now, where they're so engaged with Capitol Hill, and I was privileged at Pfizer that they let me run programs that were strictly and simply designed to help the advocacy community be more impactful.

It had very little to do with Pfizer's business goals, but I think what we sincerely believed (and believe) is that what's good for patients is going to be good for the healthcare system at large and the pharmaceutical company.

HealthyWomen: What do you think were your biggest accomplishments over the course of your 19 years at Pfizer?

Janet McUlsky: I think it was encouraging not only Pfizer but to the industry to do programming that built the expertise of the patient advocacy community. I think the biggest program, and the signature program that Pfizer developed with my help, was a breakfast series where we had a monthly breakfast and we'd have 80 to 100 members of the advocacy community attend, and we would bring in an expert speaker to discuss a topic that was really important to the advocacy community.

One of the examples was Mike McCurry, who was President Clinton's press secretary. I asked Mike if he would come in and do a talk about how the nonprofit community could work with the media more impactfully so they could get their messages out to the reporters and to the media in general.

It really had very little to do with Pfizer's interest and really was about figuring out how to build programming that helps the advocacy community have a bigger voice and a more impactful voice.

HealthyWomen: As you look to the future of patient advocacy, what do you think are the biggest challenges?

Janet McUlsky: I think the biggest challenge is how do you work with industry, broadly speaking, without losing your credibility — really making sure that you're always front and center, focused on doing what's best for patients and not allowing yourself to get your reputation tarnished in any way by working, or at least being perceived as, working too closely with industry? I think that's a real challenge because so many of the issues are important to patient advocacy groups and the industry, so it's logical that you would work together. But there are people that want to paint that in a negative light and I think that what the industry and the advocacy community need is transparency, full transparency on all the programs that are being done — and then you have a sense of it being for the greater good.

HealthyWomen: As a mentor for younger women who want to make an impact in patient advocacy (and I know there are men as well, but we're HealthyWomen so I'm going to ask about women), what message or lessons would you like to pass along?

HealthyWomen: That's such great advice for young people in general in the workforce. Moving onto the Pinnacle Award that you're receiving, I wonder what that means to you?

Janet McUlsky: Well, it's such an honor. I have so much respect for HealthyWomen, Beth [Battaglino, RN-C, CEO of HealthyWomen], Martha [Nolan, senior policy advisor at HealthyWomen] and Phyllis [Greenberger, senior VP of policy, advocacy and science at HealthyWomen] that it's super flattering, and humbling a little bit, because I feel like so much of what we've done, we've done together, all of us working together. I was just lucky enough to be working for a company, Pfizer, that allowed me to build these programs that supported the organization. I think it's as much a tribute to Pfizer and everything Pfizer allowed me to do through the years as it is to me personally, and it’s also a tribute to the team that all worked with me — Nona Bear and Bonnie Muheimand everybody who is in the industry and the advocacy community — through the years. So, I'm honored and humbled by it.

HealthyWomen: I know we’re all thrilled to be presenting you the award. What's next for you?

Janet McUlsky: Well, I've started my own company called McUlsky Health Force, and our goal is to continue the support and the work that we've been doing, bringing the patient advocacy community together with industry, and working to ensure that we're all working on behalf of the patients out there and helping them get better health care through innovation and access. And that's what I see myself doing for at least a while. People said, "I thought you were retiring," and I said, "You know what? I'm too young to retire."