In this episode, Griffin talks to Rebecca Flick, Vice Presidents of Communications and Programs for Resolve, the national infertility association (http://resolve.org/). They discuss how the treatment of IVF and infertility as an industry has hurt patient advocacy and the ability to give access to people who may not have the insurance or out of pocket ability to go through infertility treatments. Rebecca explains how they are trying to change the internal viewing of fertility treatments by lawmakers and employers as a optional medical practice to one that anyone should be able to have access to. Griffin and Rebecca then continue to speak about how being a part of Resolve not only allows businesses to further influence the fertility community, but to give back to it as well. Also mentioned: http://fertilitymatters.ca/

Griffin: Today i’m here with Rebecca Flick, who is the vice president of communications and programs for Resolve, the national infertility association. Rebecca joined Resolve in 2005. Her main responsibilities include creating and implementing Resolve’s communication plans and overseeing some signature events like National Infertility Awareness Week and Night of Hope, their online strategies, as well as increasing the infertility community’s engagement in Resolve’s volunteer advocacy and fundraising activities. Rebecca has walked the walk; she was diagnosed with infertility in 2006, has been through the rigamorol, as we’ll talk today, she lives in Virginia with her husband, son, and daughter. Rebecca Flick, welcome to the program.

Flick: Thank you for having me.

Griffin: This is pretty cool because you and I have been friends for a few years. I’ve always used you as a sounding board for patient advocacy, patient relations, and just getting to the heart of what we should be keeping in mind when we’re communicating with patients, when we’re providing services, and I want to explore that today.

Flick: Well, I appreciate the opportunity. I probably have a lot to say.

Griffin: Well, let’s prove it.

Flick: Okay!

Griffin: I wanted to start off with is that you never liked the field being called an industry. You never liked assisted reproductive technologies being referred to as an industry and I wanted to start with that sentiment from you and see what that means.

Flick: Sure, so I want to give this some context, I think when i hear the term industry being used around infertility or IVF, it's usually in headlines, like “The IVF industry, or infertility industry set to reach billions this year” and I think when we hear the word industry as it relates to a field of medicine, it commercializes it. And that makes it harder for a group like Resolve, if that term is used over and over and over again, it makes it harder sometimes for us to advocate for increased access. So if a legislator, or law maker, or media person, if they internally feel like “this industry” if its an industry its commercialized, therefore there are big profits and all these people are making all this money off of these people who are just trying to have a family. It makes it harder for out point of view to get the message across that people who struggle to have a family deserve access to safe medical treatments. And that’s why sometimes with you I get on my soapbox about the word industry. Purely from an advocacy and awareness point of view.

Griffin: That makes sense. There's a couple points that I wrote down that we can hit. Who’s it coming from? Because it sounds like from what you just said, it's coming from just other people covering it. Like the newspapers or social media. Do you feel like it's also coming from within the field?

Flick: Well, sure, I mean there's different segments of the infertility community that are industry. I mean pharmaceuticals are industry, it doesn’t matter if its pharmaceuticals for diabetes or cancer or infertility. Pharmaceuticals are an industry. You know, so people internally might use the word industry. And again, Resolve is not here to say, no one can use that term. Ban it from your vocabulary, but the reason why Resolve chooses not to is because words matter, and that’s why you’ll hear myself or Resolve’s President and CEO Barb Clora, if she’s doing media interviews, she’s not referring to it as an industry.

Griffin:That totally makes sense from Resolve’s positioning, when you say that the word commercializes it. Is there any way of avoiding that? That’s the rabbit hole we’ll probably delve more into in this conversation. Is that, at the end of the day this is so difficult in the terms of science and technology, it’s so expensive, in terms of the advances, is there any way of this just not being commercialized? I always wonder, is it just semantics to say we’re not a business, we’re not industry, we don’t refer to people as customers, we’ll talk more about that. Does it end up being semantics if at the end of the day given the supply and demand of what’s going on, there are people that are exchanging products and services for money?

Flick: Correct, and I’m not a business person per say. It's not my 20 plus years, it's been in nonprofits and advocacy work, so the definition of business, yes you’re going to make a profit, there’s going to be a transaction involved, but in the US as a whole, you know, especially something as delicate as infertility treatments, commercialization of those treatments can often become dangerous for patients who are trying to access them. The haves and the have nots. And so I think I’m not a practice manager. Resolve is not in the business of telling practices how to run their businesses, and so we are just focused on awareness and advocacy, and that’s what our lense is. We know that constant reminders to influencers out there, who are influencing people’s access to medical treatments, if they perceive it as an industry, and commercialization and billions and billions of dollars, and all these people are getting rich off of infertility, then that’s not good for our cause. So I would hope that as a community we could together recognize what it is. It is very complex, and I know we are going to talk about patients verses customers, but its complex and it is made up of lots of different people seeking lots of different services.

Griffin: Do you feel like that lense of being referred to as an industry is more commonly applied to the fertility field as opposed to healthcare at large, or other segments of healthcare? Like oncology or pediatrics..?

Flick: Yeah, so often we say you never hear people use the term, “cancer industry,” so I kind of say that a little flippantly without much backing to it, so I Googled “cancer industry” and I Googled “infertility industry” and I Googled “diabetes industry,” and when you look at the searches under those terms, it all has not a positive connotation, it is all about the money and how these industries aren’t serving the patient, and so that’s another reason why I would say we would want to stay away from that in our field of medicine. It is very complex, it comes with a lot of opinions from the outside world, whether its religious or financial or spiritual, there are a lot of people who don’t agree with reproductive medicine. So let’s not keep piling on by commercializing it and calling it an industry.

Griffin: I’m forming this opinion right now, so, audience and Rebecca bear with me, this is coming into Griff’s mind, right, but based on things you’ve said, the main concern for Resolve for patient advocacy is that it makes it a lot more difficult to advocate for patients if they are viewed as a commercial interest, or if the field is referred to as an industry. And just from my end, I’ve felt like its harder for me to advocate for patients when practices or providers or I suppose, other people in industry, don’t consider themselves a business, don’t consider the patients as customers, because I often feel like, providers especially know what you’re saying, and agree, and don’t want to refer to their practices as a business, they don’t want to refer to patients as a customer, but at the end of the day, they still are. That practice still has to pay the bills, they have salary, they have profits, they have expenses, and so there's this inherent drive to increase profit, minimize expenses, or at the very least, sustain the business amid competition, but there isn’t often a willingness to say this is the amount of profit we want to generate or this is the business goal that we have and subsequently this is how we are going to serve our customers in order to get there. Does that make sense?

Flick: Sure, and you know I said before, I’m not a practice manager, so I would hope that from a patient advocacy point of view, practices were looking at their patients holistically and from a medical intervention point of view. They are there to treat the patient, treat the disease, or condition that has lead them into their offices, but from a business point of view, I would imagine they would want to follow best practices in treating someone like a customer, in hopes that the treatment works, or that they return or that they recommend their practice to someone else. So I’m sure from a business point of view there are people that need to guide this field of medicine from a consumer driven point of view. You know there is research that shows that people don’t access medical treatment out of fear or out of access. So either they are afraid of what is going to happen, or what is going to happen to them, or they don’t have access to insurance coverage or don’t have access to pay out of pocket. So those are two big barriers right then and there that a medical practice for someone with infertility needs to overcome, for their patient. So I’m sure that’s very customer- and business-driven for the things that they need to do to get those people in the door. I still think that best practices in a business setting can happen, while they are looking at the patient as a customer from the moment they walk into the door to the moment that they leave, but as a whole you’re still providing someone with medical care. From Resolve’s point of view, we want to make sure patients have access to safe and sound medical interventions. That's why it makes it harder if fertility is viewed as this massive industry that just cares about the bottom line. You know and I know that the people who are working in this field of medicine are some of the most compassionate people that we’ve ever come across, we don’t want to continue to hurt any reputation.

Griffin: By the way, to me that also includes some of the people who also work for some of these very large networks that are partly owned by private equity firms. I know it's pretty fashionable to just take a dig and say that some of those folks are just in it for the money, but we know a lot of those folks and some of them are 100% about the patient as though they worked for a health system or university or private practice or anyone else.

Flick: I think one of the leaders in this fields, a former doctor, David Sabel, he writes a great blog on Forbes.com. And he uses the word industry, I was reading something before we talked, and he uses the word industry, and I don’t think it's necessarily in a negative way, but he gives a really great perspective on the business side for this medical intervention and this healthcare field of medicine, so I would encourage listeners to read up on him. But he also gives a very compassionate plea for access, so he’s very much an advocate, and I should mention he’s a former Resolve board member, just for full disclosure, it’s not an endorsement by Resolve, but it is a recommendation of a great read.

Griffin: Is it fair to recap this in saying that people have a certain set of rights as patients, and a certain set of privileges as customers?

Flick: No, that’s interesting, because I think when you sent me the question in wasn’t necessarily phrased that way, but when you repeat it that way, it's actually pretty impactful. I’m going to sound like a broken record, but as a patient you’re entitled to safe and available medical treatment and as a customer especially one that is paying out of pocket for this medical treatment, there is certainly an expectation of being treated well, customer service, but it's a medical treatment so the outcome is up to so many factors.

I think something that is always a disservice to patients that are seeking medical intervention for fertility or those who have struggled to build a family for other reasons, everyone is always sort of afraid to admit that this is a course of treatment. If you were facing cancer, the oncologist would never say come in for chemo once, we’ll see how it goes and move on. There is an expectation there that you’re going to be facing a course of treatment. I think this field of medicine would help a lot patients understand, and erase the fear of failure, right out of the gate, if we approach this as a course of treatment. Again, if you’re a cash paying patient, that could set up for another of other fears and barriers. Again, I think that’s where that commercialization industry crosses over with medical care when people are so often paying out of pocket.

Griffin: And after time, it's difficult to decipher what’s the customer privileges, or what’s the patient rights, as technology and service and best practice just become part of the standard of care. For example, having a patient portal in 1995 isn’t a part of the standard of care. But in 2019, go online and view your protocol, it is. So there is this standard that just sort of raises. I bring this up because it's important to recognize in our field too.

Standard of just about everything, raises in almost every segment, whether its education or healthcare or commerce, because you can think of examples about everything. What was a school 100 years ago would not pass for a school in the 1950’s which didn’t have the smart chalk boards and the computers and the technological infrastructure that is has today. And what might have passed for a hotel 50 years ago, just drive into the motel and you’ve got a fan and theres a tv with three channels would not get you beyond a 1 star yelp rating.

Flick: Our expectations are higher and higher.

Griffin: And those expectations, even if they are driven by the consumer world, their ways into the field and ultimately affect the expectation for the standard of care. And especially because what we deal with at our company very often has to do with digital media, social media, that in the beginning that was just sort of marketing, that was just marketing on Facebook, but eventually Facebook Messenger just becomes the way people want to communicate. And in 2012 that was a nicety, but in 2023 that might be requisite. That if you’re not able to communicate in certain channels then you’re simply not participating in the process.

Flick: Yeah, and I think, patients need to understand too, every generation is more informed than the next. I went through treatment in 2006-2007, and it is so different then than it is today. And there is a constant…

Griffin: If i can give a thought, what are a couple of examples, can you think of any off the top of your head that treatment has changed so much since 2006?

Flick: Single embryo transfer, frozen embryo transfers have shown to be much more successful over the years, understanding trying to decrease multiples, education around dispensing your meds, the biggest I think is single embryo transfers. Now there is PGD, the big thing when I went through was ECKSY, that was the latest thing, and now it is not as talked about as much as it was back then. It's only been a decade. There are always people trying to make the science better, and i think patients need to, if they want to be good patients and good customers, that they should be informed, but also make sure that they have the information that they need from their practice to feel comfortable. Knowing how much time they need to take off of work, knowing where they can go for answers if it is 10 o’clock at night and they forget how to administer their medications. I think a lot of people go to the internet for those kinds of things and that information isn’t always the best. While patients are more informed now than ever, you also have to vet the quality of information that you are getting online. Know that if you’ve chosen the right practice and feel comfortable, you’re going to get the best information from them, in my point of view.

Griffin: It is definitely, I don’t want to call that a millennial habit either, but there is, I guess a behavior that is more prevalent among millenials and just aging up, which is the information ceiling is just higher and higher. Meaning, if I read this about single embryo transfer, I want to read every possible link if that is what my mind is occupied on right now. Because many of the people going through this are in a very stressful position where they are sometimes thinking singularly about one thing, that ceiling is very high, sometimes on a pretty narrow function of topics, and practices have a really hard time of meeting that information demand.

Flick: And you also don’t have probably a ton of time when you’re going through the process to ask a lot of questions. So always make sure, we’re kind of getting into more advice now, but always make sure you have your list of questions. But in terms of trusting information you find online, you know, just trusted resources are really important. If it is medical advice make sure it’s from a respected, accredited nonprofit, written by a medical expert. Obviously Resolve was founded on support, and we host a variety of free support groups across the country, and peer to peer support is really important and you’ll go to those people for information but backing it up with your own research is really important as well.

Griffin: Speaking of that, let me use this opportunity to give Resolve plug, I won’t ask you to, I will do it. I’m not doing it for Resolve, I’m actually not even doing it for the patients in this particular context. In this particular context, I’m doing it for the practices and I think this blends perfectly with how investing further into this standard of care benefits the business end and vice versa. Every single practice in the United States, every single REI practice, should be a professional member of Resolve. It’s cheap, it's too cheap in my opinion, I keep saying you should up your prices.

What if there are other clinics that are sponsors of Resolve, what are they getting for that? That’s to the value exchange. The value exchange is that there is a community of people of whom Resolve has already become a leader, information and support that they provide to those people, so the community is assembled, and then as an REI practice and IVF center, you have the opportunity to serve that community, because they’ve already gathered some of it together in your area, and you have the opportunity to associate your name with the brand of the community that they have built.

But by serving the community you increase your own leverage in the community. It's why I wrote a book called “The Ultimate Guide to Fertility Marketing” its 60 pages of free information for people. It's why I have a podcast called Inside Reproductive Healthy. It's why I have blogs based on insider knowledge from the field and inside perspectives. Its because by serving any community you increase your own social leverage in the community. I think that is one of the clearest ways I can illustrate that if you’re thinking of yourself as a business in a good way, if you’re just realizing this is what I’m out to do, then you reverse engineer how do I get there, and one of the ways you get there is by super serving the community. That’s a pretty straightforward way of doing it.

Flick: I know you didn’t want to make me give the plug, but I will definitely give a plug for Resolve and I think that when practices and businesses that serve, because we didn’t even touch on people that are trying to adopt, we would never call adoption an industry. That would also commercialize it in a way that is illegal. That's a whole other discussion for adoption experts, but Resolve’s community is so much more than the people going through medical treatment. They might start there or they might end there, or they might never get there, but they are using gestational carriers and they are adopting and they are using all sorts of services to help them through this.

If you want to set us apart in this community and not be focused on the industry, the best way that you can help do that is support the charities and the nonprofits in this space who are working to improve access and providing support. That is something we can all do together and flip the thought that we are this big bad multi billion dollar industry on its head, with how much the field gives back to nonprofits in this space, and not just Resolve, there are many.

Griffin: I think in any given field there is always examples of people who are going to do well, and then there are people who might do that that doesn’t really serve anyone but themselves. Probably the way i would wrap this all up is that there is tremendous business value in serving whichever population that you serve, but serving them as a community and I think that the competition of business can increase that, can increase the standard of care that way. Competitors are raising the expectations, society is raising the expectations, and that’s driven by commerce at large. Or it can just be some people living in the Hamptons that have always made some money, just making more money. I think that depends on how people in the field and in the economy participate in that. My preaching but also my learned business experience concludes that using business goals for the right purpose can benefit the community and serving the community with no expectation can benefit the business.

Flick: And words matter. Remember that.

Griffin: To you and the rest of society less than they do to me, but you’re absolutely right, they do to so many people. I personally hate that about our society but its the truth. Words do matter and people can sometimes get hung up on them, but beyond that so many people in this field want to help people and I’d rather have that side be seen than a different narrative.

Rebecca Flick is there anything I didn’t ask you that you want to conclude?

Flick: No, I think words matter, to sum it up. I know it's not your favorite, but if we continue to motivate this community, everyone who serves someone with infertility, to work together and help influence employers and lawmakers, state legislators, that access matters, we have a great voice and providing a better healthcare system for people struggling to build a family.

Griffin: Word sensitivity isn’t my favorite, but you are my favorite.

Flick: Back at you.

Griffin: Every REI practice in America should check out Resolve, for professional membership, we’ll put Fertility Matters for our Canadian friends in our show notes, UK friends, Australian friends, I don’t know who y'all are dealing with, email names, we can add those as well. Rebecca Flick thanks so much for coming on the show.

Flick: Thank you Griff, talk to you soon.