Oncofertility in Practice: Overcoming Awareness and Accessibility Barriers

[Dr. Leslie Appiah]

A little bit about Oncofertility. Oncofertility is a multidisciplinary field that brings together clinicians, scientists, psychosocial experts, and patient stakeholders to improve fertility and reproductive health outcomes for patients with cancer diagnoses. This is an area that we do want all physicians to be familiar with because it touches primary care providers, specialists, everyone in medicine, and we want our patients to get the best care. The more we can advance knowledge across disciplines, the better it is for our patients.

[Dr. Mark Hoffman]
Well, it certainly doesn't sound simple. I mean, the list of folks you mentioned, and having seen what you are able to do in your time here at the University of Kentucky, it's a heavy lift. It's a big job. It's a lot of work, but you're dealing with one of the most vulnerable populations. Most of the patients you're dealing with or patients with cancer. Not all; most. This is something that in my years as a resident dealing with G1 Oncology in med school, I don't think it was mentioned once to me.

It was not something that came up in conversation, yet when you came and spoke to us about what it is that you do, it seemed like such an important thing that not a bright enough light or no light at all was being shone on it. Is that a sense you get from other places you've been as well where it's like, oh wait, we're not even doing this? Is that a common thing you do along the way?

[Dr. Leslie Appiah]
It is, and it's very common to hear physicians of all stages and degreed levels say that they've never heard of the term Oncofertility. The term was coined by Dr. Teresa Woodruff at Northwestern University in 2009. Teresa Woodruff is an ovarian biologist who really began the journey of preserving the fertility of patients with cancer. Since then, it has been our charge to increase knowledge around Oncofertility. At every institution that I've been employed, it tends to be a very novel idea or a novel discipline for individuals.

It is a huge lift. It takes a lot of heart and compassion and grit and determination and the ability to influence individuals to really take up the charge to care for this patient population. Fertility in this country only recently began to be understood or appreciated as a disease, and it's almost stigmatized to have infertility, and insurance providers don't cover fertility services for patients without cancer. You can imagine the challenge to begin to bring these services to patients who have this chronic illness.

[Dr. Mark Hoffman]
Why do you think that is that infertility is not considered a disease state? Is male infertility covered or not covered? In a way it's the same thing.

[Dr. Leslie Appiah]
I have pondered why infertility is not considered a disease state, whether it's a political reason, a religious reason. When we look at fertility services and fertility practices across religions, why variations in what is acceptable and what isn't in order to preserve fertility or to achieve biological children, I've always wondered if that has a role in it as our society tends to be heavily influenced by religious practices at times. No, infertility is not covered more for males or for females or any particular group. Infertility services across the board are not well funded or not well covered by insurance providers. I will say that that is changing.

There are now 13 states, including Colorado, with legislation that mandates that insurance providers cover fertility services, both for patients with cancer and without. Fertility preservation services for a woman or man who is going to undergo cancer treatments that are going to render them infertile, and then patients who actually meet the medical diagnosis of infertility.

[Dr. Mark Hoffman]
That's interesting. I've lived in states that do and lived in states that do not cover or that do not mandate coverage for infertility. I've never known whether a state that I've lived in had any specific coverage for things like fertility preservation. Is that something that's newer in terms of legislation? Illinois, where I trained, IVF was covered, it was all covered. Michigan, Kentucky was not. Would fertility preservation services be covered underneath that or does that typically take separate legislation?

[Dr. Leslie Appiah]
It typically takes separate legislation. You're very astute there as usual, Mark. In states where infertility services are covered, we have had to go back to the legislatures to add fertility preservation coverage. It's very specific language that needs to be placed into the bill in order to provide those services for individuals.

[Dr. Mark Hoffman]
No, no, it's something that I think-- I ask how many NCI centers there are. It seems to me that that's where you would want to house a lot of these programs where you have a gathering of cancer patients and cancer experts where that conversation can be taught, where this can be a routine. This is not something that we have to pull strings for. You and I have talked about that and we are working here, certain things were hard every time. Why is this hard every time? This shouldn't be every time.

It's because the systems haven't been put in place. But once systems get put in place you don't have to think about things. Things can be systems-based that get done based on the way it's built, not just remembering to do something. We don't have to rely on our imperfect human brains. How many programs are there doing what you guys are doing, and not even necessarily to the level you're doing, but how many would you say true Oncofertility programs are out there across the country?

[Dr. Leslie Appiah]
I would say across the country intimately that I know probably 15 to 20 across the country, which isn't bad. That includes pediatric and adult institutions. I could probably start rallying them off of my fingers here.

[Dr. Mark Hoffman]
Some are adult only, some are adult and kids.

[Dr. Leslie Appiah]
Correct. Some are adult and kids. Yes.

[Dr. Mark Hoffman]
[unintelligible 00:41:47], is that a part of it, or depends on where the--

[Dr. Leslie Appiah]
[unintelligible 00:41:51] adolescent gynecology providers tend to lead a lot of the fertility preservation programs, interestingly enough. I think that's because we are adult-trained first and then pediatric and adolescent-trained second, and so we bridge both sides. We're able to take care of adults and children. We have the knowledge on both sides and so it makes us uniquely suited for this role. We take the role seriously and we're passionate about it and we love it and we're bringing more people into the fold every day. I want to comment on something you said about the comprehensive cancer centers.

…

[Dr. Mark Hoffman]
Educating doctors is one thing. I imagine educating patients is a different challenge. I think like everything in healthcare, there's likely a few Reddit posts out there or Facebook groups that are doing this, but, unfortunately, it would seem that for Oncofertility, as you've already alluded to or spoken about, this is something that's really timely. You're in the hospital, you've got this diagnosis, your brain is not thinking about much but life and death, I would imagine. To rely on patient education, I would think it would be something people might find out more often than not after the fact. Is there a big patient education part of what you do? I would think it would mostly have to come from the doctor's side.

[Dr. Leslie Appiah]
I would say that we do spend most of our energies educating the physicians to make sure they make the patients aware. Then it's really important that we have written materials for the patients to have as well as audiovisual materials. Developing decision aids, giving them links to sites that really talk about fertility preservation is really important. My dream is that every patient who has a cancer diagnosis will automatically receive something through their EMR MyChart that says, you've been diagnosed with cancer. This is what you need to know about your fertility. These are links, these are resources. We really have to bypass physicians because we have our biases, we have our beliefs, so sometimes we don't always do the right thing for our patients despite what we feel about ourselves.

[Dr. Mark Hoffman]
With our best intentions, we forget.

[Dr. Leslie Appiah]
We forget. It's very busy. Cancer diagnosis, there's so much information coming to a patient. If they can just receive something that says this is an alert, here are the resources, or please ask these questions of your oncology provider, I think that that would do wonders.

[Dr. Mark Hoffman]
Or have an alert to the doc when you're prescribing a chemotherapeutic agent or a-

[Dr. Leslie Appiah]
I'm glad you mentioned that.

[Dr. Mark Hoffman]
-toxic agent. Hey, Dr. So-and-so, have you spoken to your patient about their fertility? [laughs]

[Dr. Leslie Appiah]
We have that. We have that. It's called--

[Dr. Mark Hoffman]
Do you?

[Dr. Leslie Appiah]
Yes. It's a best practice advisory. It comes up as soon as a patient has a treatment plan or when we're trying to decide when's the best time. Treatment plan seems a little bit too late, but the diagnosis comes up or we have a pathologic report, and it says, "Physician, your patient was diagnosed with this malignancy. Have you counselled them, or have you offered fertility preservation counselling?" If yes, then you are done. If no, it asks for a reason why not. Then it actually--

[Dr. Mark Hoffman]
Does a little person come up with their arms crossed saying, "Why not?"

[Dr. Leslie Appiah]
Why not? Are they too sick? Did they decline? What are the reasons? Then there's an automatic option for the referral. It's embedded also in the new--

[Dr. Mark Hoffman]
So you can just click the referral right from there?

[Dr. Leslie Appiah]
Yes.

[Dr. Mark Hoffman]
That's a system solution. That's awesome.

[Dr. Leslie Appiah]
It's awesome, yes. We have it also in the new patient order set. It just says, "Do you automatically default to social work?" It's automatically defaulted for fertility preservation consult and it is up to the physician to deselect, that's called opt-out. It has been shown to be most effective for any number of alerts. This is happening in centers and it's really changing the way.