HLOL Podcast Transcripts

Health Literacy

Advocacy–From Aha to Action (HLOL #74)

Helen: Welcome to Health Literacy Out Loud. I’m Helen Osborne, President of Health Literacy Consulting, founder of Health Literacy Month and your host of Health Literacy Out Loud. In these podcasts, you get to listen in on my conversations with some truly remarkable people. You will hear what health literacy is, why it matters and ways we all can help improve health understanding.

Today I’m talking with Dr. Rich Sagall, who is a family physician. About 15 years ago he left clinical practice to start a nonprofit organization called NeedyMeds, offering information about programs to help others who are medically needy. Beyond his work with NeedyMeds, Dr. Sagall also publishes the newsletter Pediatrics for Parents.

Rich Sagall contacted me after listening to the Health Literacy Out Loud podcast about medical debt. We spoke not only about NeedyMeds but also his journey from being a practicing physician to following his passion and creating a nonprofit organization. In many ways, his journey is like the ones we take when it comes to health literacy.

Welcome, Rich.

Rich: Good morning.

Helen: I found your story so compelling because you were doing one type of work in medicine, and now you’re helping people in a very different way. Let’s take it from the beginning. How did this all begin?

Rich: When I was still in practice back in the late ’90s, I was talking to a medical social worker who is a friend of mine. She told me about the patience assistance program. I thought I had been very socially aware of ways to give my patients extra assistance, but I had never heard of these programs.

Helen: The patient assistance programs?

Rich: Exactly. As we discussed them, I began to realize this was an important source of information, and we needed to get this out to not just my patients but everybody.

I have a lifelong interest in computers. I had just learned how to design web pages, and I thought this would be a good project. One thing led to another, and we developed NeedyMeds.

Helen: When you say “patient assistance program,” could you be specific about what that involves?

Rich: These generally refer to the programs that are run by the pharmaceutical manufacturers. They’re called patient assistance programs or PAPs. Through these programs, the manufacturers give away, generally free and sometimes at a very low cost, medication to people who are in need.

These programs provide thousands of different drugs that are available. The last figure I’ve been able to find is a few years old. They’ve given away over $10 billion worth of drugs, wholesale value, per year to those in need.

Helen: Let’s frame this. I’m thinking of the parallels in my life too. I was in clinical practice myself. When I started hearing about health literacy, I was working in psychiatry as an occupational therapist.

You’re now seeing families as a physician. You saw the need for people to have assistance with medication, I assume, but it sounds like a bold step. How did you move from doing what you were doing to doing it in a very different way on the web and leaving your clinical practice?

Rich: It was a slow progression. Initially, NeedyMeds was a weekends and evenings endeavor, and it stayed that way for a long time. We were able to find some funding eventually, so I cut back on clinical practice to three-quarters of the time and doing NeedyMeds the other time.

As Needy Meds grew, we’ve added a lot more information and different types of assistance. We’ve developed a business plan. It grew to the point where we now have 14 employees.

Helen: Wow. You are not seeing patients anymore.

Rich: Right. I had to make that decision seven or eight years ago. It was difficult to maintain both parts of my professional life, and I decided to go with NeedyMeds and bow out of clinical practice.

One of the benefits of NeedyMeds is that every day we will get 15,000-plus people to the website, so I know I’m helping many more people than I ever could in private practice.

Helen: That resonates with me and I think with many of our listeners too. Not that people would go as far as you and I did to leave our clinical practice entirely, but our listeners are people who are passionate about the topic. In the case of health literacy, it’s about communicating information clearly and simply.

What would you want folks to know about that journey as they go from that aha moment to putting in place their passion?

Rich: You need to have a plan. You need to plan far ahead.

Helen: Tell us more about that.

Rich: When I was a resident, for example, I worked with a physician who was obviously burnt out. He was not enjoying what he was doing, but he was stuck. This was the skill he had. This was how he made his money and supported the lifestyle of his family.

Although I was full of excitement about clinical practice at that time and just getting ready to start, I thought to myself, “I never want to get into that position where I’m trapped.”

Helen: Where you’re trapped and feeling burnt out and stuck?

Rich: Exactly. For me, I was always exploring other ways I could use my medical background, training and experience besides clinical practice. In addition to family medicine, I had a booming occupational medicine program going that provided some of that variety.

I expanded some of my skills in terms of programing and interest in computers. This opportunity sort of evolved, but I believe it evolved because I had been planning for it and looking at other things I could do with medicine. I was trying to keep my options open for that day when I decided, “This just doesn’t have the excitement it had before.”

Helen: I’ve got a few points in there. Realize when it’s kind of enough, but before that time, start thinking about what your other options are in the world. I referred to that for myself as having Plan B, but I also probably had Plan C through F out there waiting for me.

What I’m hearing from you is that, like me, you brought in another interest you have. Yours was computers. Mine was about creativity and the arts. You put all of that together, so you put two things together that others had not put together in the same way. Is that correct?

Rich: That’s a very good summary. Look for other interests and how they can feed into the training you have. Nobody wants to waste years of training and not use it. Still explore different avenues and options, and maintain the excitement and interest you had when you first started doing your first love.

Helen: I hear people talking about this and asking about my story. It’s wonderful to be hearing yours. Are there bumps along the road or scary times? What else can you tell people about those scary times that might happen?

Rich: You have to be prepared in a lot of different ways. One is obviously financially so that if your new career or interest doesn’t take off as quickly as you would hope, you’re not going to be suffering, and your family is not going to be suffering. That’s important.

You need to look long-term as to where you think it could grow and try to be somewhat realistic about it. When I did it, I slowly moved from clinical practice to NeedyMeds.

Helen: You didn’t just wake up one morning saying, “I want this website that serves 15,000 people every day.”

Rich: It slowly grew. I kept looking for opportunities and ways that it could generate income so we could afford the staff and position we now have. It was definitely not overnight.

It’s a nonprofit, so it gives us some advantages, but it’s still trying to figure out how, as a nonprofit serving people who probably don’t have a lot of money to donate to a nonprofit, we can grow and expand our services and the income we have. It was a process of always being aware of and looking for the opportunities.

I’m willing to talk to just about anybody who calls who has some opportunity. Many we reject, but you still never know when something is going to lead to something else.

Helen: I see that in action because you and I met because you listened to a Health Literacy Out Loud podcast, and we listed NeedyMeds as one of the resources. You found that somehow through Google Alerts or something.

You contacted me, and it was through that conversation that we realized that there’s a message out there to share with listeners of Health Literacy Out Loud beyond what NeedyMeds does. You are very opportunistic in looking for those opportunities. I see that in action.

Rich: That’s exactly right. I use a lot of Google Alerts trying to find opportunities for NeedyMeds to work with, help and partner with other organizations. I probably get three or four leads a day from Google Alerts, and that’s exactly how I found you.

I said, “This sounds interesting. It sounds like we’re dealing with some of the same issues and have some of the same goals to improve individuals’ health. I listened to a couple of your podcasts and gave you a call.

Helen: Then we connected.

I imagine that you’ve learned about the business side of things. That wasn’t your skillset going into it, it doesn’t sound like. It certainly wasn’t mine, but I hear those questions from a lot of people. “Health literacy sounds important. I know it’s important. It’s my passion. I want to do what you’re doing.”

I always tell them, “Start with a plan and learn about the business side beyond your area of expertise.” Is that something you’ve had to go through too?

Rich: I’ve always been somewhat business-oriented when I ran my practice. I was very involved with the financial end of it, but you’re right. You need to develop a plan. I also found that you also have to be very open to anything that comes along. You don’t want to get locked into this plan because you don’t know what’s going to develop.

I’ve seen many a time where people start a business with one whole model and a very small component of it says, “I’m the way you’re really going to succeed,” making a big shift.

Planning is definitely important, but you don’t want to become too constrained by your plan. You do have to learn a lot of different skills that you may not have. For example, there’s podcasting. You didn’t start off knowing podcasting. You had to learn the skills because it fit with your mission of expanding the audience and growing the business. It draws people in to the whole area.

I think it’s very important to be willing to explore new areas and learn new skills. The whole internet and social media area is so important. You have to become a part of that and use those available channels to get the word out about what you’re doing because you never know who’s going to knock on your door.

Helen: When I think of this journey, it’s like hiking somewhere without the map. We don’t know what’s happening around the next corner. We can’t foresee it, but sometimes it helps to be prepared for that.

Are there bumps along the way that you’re willing to share with us and tell us the story about how you’ve overcome them and dealt with them?

Rich: I’ve been fortunate because NeedyMeds has really grown nicely. We’ve had a few small bumps here and there. We’ve lost some financing here and there, but we’ve been able to overcome all of those because it’s a broad-based organization. We have been able to design it so that we don’t need to ask individuals for money. We’re a fortunate nonprofit in that we don’t have to beg for money.

Helen: Getting finances is a huge issue for everybody.

Rich: Definitely. What I’ve done is look at everything I have and say, “What do I have that has a marketable value?”

NeedyMeds is basically an information company, if you want to look at it from a strictly financial point of view. We gather information that has value that we can turn around and license to other people who don’t want to gather the information themselves.

We have a reputation in this arena of having the most comprehensive and up-to-date information on patient assistance programs and many other types of programs that help people who can’t afford medications and healthcare costs. This now has value, so we’ve been able to find a number of channels where we can make money doing what we want to do, yet helping people also.

You have to look at every different channel. Sometimes you have to do things that don’t quite fit with what you initially thought you’d be doing yet bring in the income to allow you to do what you want.

In our case, the income allows us to provide all this information totally free to individuals who come to the website. This is what we wanted to do. There are organizations that will charge to help people. We want to give all this away, and that’s what we do.

Helen: You set your limits. “We’re not going to charge people for going to our website. We’re not going to do this,” but you also talked about having to pay attention to that income stream. Just because we come from a do-good-deeds philosophy and that’s how we operate, we need the money to keep going. You talked about issues like licensing.

I know many people with health literacy talk about their products or services. The products aren’t many. It’s mainly the services. “I can do this. I can write something clearly.” I think some listeners haven’t looked at that big, wide world of opportunities out there of how to actually make a sustainable business built on a service.

Rich: I think you’re very right on that. One of the important aspects of figuring out the financial end is what can you do once that you can sell many times?

Can you write certain types of articles yourself and then syndicate them? You don’t charge a whole lot, but you have many people paying to use your articles. There are other types of services. Can you teach classes where you’re not charging a lot per student, but you’re getting a fair number of students in so that it becomes worth your while?

Helen: You talked about syndicating articles and teaching classes. Tell us about dealing with this issue of others in the same area as you are. Is that scary? Is that competition? Is that good? How do you work with others in the same arena?

Rich: It is competition to a certain degree. There are other organizations that are doing the same thing we do. We deal with it by trying to be better than they are. We try to make our website the easiest to access, the most comprehensive, and the easiest to download data from if you’re looking for help for yourself and want to have some information in front of you.

Like any business, we look at what others are doing and say, “Is that something we may want to do also?”

Helen: What I also heard from you is how you described success too. When people go to your website, you wanted a lot of people to go or you wanted the downloads. It’s not necessarily a dollar-per-visit measure of success either.

Rich: Because we don’t earn anything from individuals coming to the website, our success is how many people come and the emails we get saying, “I really like your website. You helped me out.” We look at all the types of information that people access on the website. That’s how we measure our success.

We know we’re helping thousands of people. Some days we will have 15,000 to 17,000 people and 90,000 page views. That’s a lot of traffic.

Helen: We hadn’t even mentioned that. Tell people your URL, please, so they can look at your site for themselves, whether in their clinical or entrepreneurial hat, to see what you’re doing.

Rich: It’s simple. It’s www.NeedyMeds.org. That takes you to the home page, and you can explore the whole website there. For my newsletter, it’swww.PedsforParents.com.

Helen: Thank you so much. You’ve shared so much for getting started, finding your passion and what’s important, and thinking about alternatives and other ways of helping people. You’ve shared about bringing in a variety of personal skillsets, experience and interests, learning the business side, starting small and growing, having the plan, and having your measures of success. Look at you now. Those are wonderful lessons learned.

I have one last question. What about all of this would surprise the rest of us?

Rich: That’s a difficult question. What surprised me the most with NeedyMeds was to discover all the programs that are available. There is a lot of help out there. When we first started, we did the patient assistance programs and then said, “What do we do next?” We couldn’t think of anything else. Now it has grown considerably. We’ve added a lot of different programs to the website.

You have to look for inspiration in places you might not expect it. I was reading, long ago, a medical newspaper. For some reason, an article caught my eye about an organization in Hartford, Connecticut. It was set up by the local medical association long ago, and they had a fund to help indigent widows of physicians who couldn’t afford their medical expenses. Their issue was that they couldn’t give away the money.

That got me thinking. If there are programs like that, there must be lots of these programs that people don’t’ know about. That led to what we call our disease-based assistance database which has information on over 1,300 such programs, big and small.

It’s always being alert and saying, “How can I incorporate that? Does that fit with what I’m doing?” You never know where you’re going to find something.

We view NeedyMeds as a cooperative project between us and the users because they come up with lots of good ideas. They come up with programs we don’t know about because we don’t know everything, obviously.

We need the help, and we tell them all over the place. “We need your help to keep our information current.” When you have data on 15,000 programs, it’s very difficult to keep it all current. It’s really a cooperative effort.

Just keep your eyes open and look around. Try to draw a relationship between what you’re seeing and if there’s a possibility that it would fit with what you’re doing. Does it relate somehow? That’s really important to do.

Helen: Rich, your lessons are very meaningful personally and professionally to me, and I’m sure they will resonate with some of our listeners. This podcast embodies what you were talking about, about looking for opportunities and inspirations that were not fully laid out, but you make it happen. You and I made it happen with this podcast.

I thank you so much for sharing your story about going from practice to your passion to starting and leading a successful nonprofit. Thank you so much, Rich.

Rich: It’s been my pleasure. I really enjoyed talking with you today.

Helen: I learned so much from Dr. Rich Sagall, and I hope that you did too.

Health literacy isn’t always easy. For help clearly communicating your health message in ways others can understand, please visit my health literacy consulting website at www.HealthLiteracy.com. While you are there, feel free to sign up for the free monthly e-newsletter, “What’s New in Health Literacy Consulting.”

New Health Literacy Out Loud podcasts come out every few weeks. Subscribe for free to hear them all. You can find us on iTunes, the mobile app Stitcher Radio, and the Health Literacy Out Loud website, www.HealthLiteracyOutLoud.com.

If you have an idea for a topic or a guest to interview, please email me just like Rich Sagall did, at Helen@HealthLiteracy.com.

Did you like this podcast? Even more, did you learn something new? I hope so. If so, tell your colleagues and friends. Together, let’s let the whole world know why health literacy matters. Until next time, I’m Helen Osborne.


"As an instructional designer in the Biotech industry, I find Health Literacy Out Loud podcasts extremely valuable! With such a conversational flow, I feel involved in the conversation of each episode. My favorites are about education, education technology, and instruction design as they connect to health literacy. The other episodes, however, do not disappoint. Each presents engaging and new material, diverse perspectives, and relatable stories to the life and work of health professionals.“

James Aird, M.Ed.
Instructional Designer