MAPS: Because Medical Affairs hears from patients and providers, it seems like we have the opportunity to notice which “boxes” people of varying populations need to achieve health equity. Are we doing all we can do?

Eric: What we’re seeing in literally every request for a proposal we get, is that Medical Affairs teams list “promotes health equity” as one of their desired goals. They know it’s important and are asking for it. But when you look at dedicated budget towards it, we’re only seeing a few Medical Affairs groups with dedicated health equity budgets. There are leaders in this space who choose to address health equity head-on, but many companies are still struggling to line up the business case behind it.

MAPS: So…is there a business case for health equity?

Eric: Absolutely. As a pharma company, you want to expand the pie of potential patients that can be on the therapy you create. One struggle is in diseases that are really hard to diagnose, like IBD or spondylitis or psoriasis. All of these conditions struggle with issues of health equity; for example, psoriasis is under-diagnosed in people with darker skin. Health equity means helping people in minority populations get appropriate diagnosis, leading to appropriate treatment. Second, even once you’re diagnosed, what’s the acceptable burden of disease given the state of the art? So many people get diagnosed with Crohn’s or migraines or MS and they start living with breakthrough symptoms or drug side effects they assume are their new normal. But the rate of change in medicine is so fast that new therapies can help these people newly diagnosed or diagnosed long ago live better lives. Take psoriasis, 15 years ago there were really only topicals to treat symptoms; now a number of biologic therapies can offer almost 100% clear skin. There are people who have lived the last 10 years thinking that “making psoriasis a little less awful” was acceptable. That’s why health equity is important – both patients and pharma want as broad a base of patients as possible to get diagnosed and get the best treatment. Also, and this is a no-brainer, the FDA is increasing requirements for diversity in clinical trials. To get regulatory approval, companies are going to need clinical trial diversity. How do you get that? By increasing health equity at every step in the process, from bringing on doctors running trials that look like the people you’re reaching out to, to more inclusive education and outreach.

MAPS: One hurdle for pharma in general and Medical Affairs specifically is the question of value of new treatments. Does the business case for health equity apply to the payer side as well?

Eric: Sure. Take lupus, for example. If left untreated, really bad things can happen like lupus nephritis where you end up on dialysis. These bad outcomes happen a lot more if you’re black. And it’s known that it takes a lot longer to get diagnosed if you’re black – you go a lot longer with this disease damaging your system. Imagine the cost difference of early diagnosis versus taking care of someone on dialysis. From a Health Economics perspective, all the incentive is to be preventive instead of reactive. We see a version of this now in the general population: routine screening went way down over covid and now there’s a huge uptick in diagnoses of later-stage cancer. Well, this underscreening and late diagnosis has been going on for years in underserved populations. Anyone studying this field for a while is going, “See!” If you think about paying the bill for healthcare, preventative education in underserved populations is a no-brainer.

MAPS: If the business case for health equity is a no-brainer, why don’t we see wider adoption?

Eric: One thing is language – we talked about equity versus equality and the term “health equity” is another example. Patients don’t talk about “health equity.” For patients, it’s “I’ve got these symptoms that aren’t being treated; I’m not getting diagnosed; I don’t know how to talk to my doctor so that I can get the treatment I need.” It’s the same on the pharma side. Some organizations don’t know what to do with language like “health equity” and “patient centricity.” But as soon as you start using language like clinical trial diversity and broadening the patient base, you find a lot more buy-in. Ironically, communicating the value of what we’re doing to patients or to industry hits some of the same challenges. Ultimately, it’s about asking what problem you’re solving for the user.

MAPS: So, what do we do about it – how can patient communities increase health equity?

Eric: Let’s stick with the case of IBD. Again, you show up with all the symptoms and if you’re black, you have 91% less likelihood of being worked up for a diagnosis than if you’re white. We’ve got this community of IBD patients and we decided to take the bull by the horns and equip traditionally underserved patients with the tools they need to get proper diagnosis and treatment. Fortunately, we were able to partner with Janssen on this, who have been a real leader in health equity. So we created a series of videos and articles, led by two, noted black gastroenterologists that say, “Here’s what you do if this happens to you – if you have these symptoms, this is what you deserve to get, and if you’re not getting it, here are the questions to ask your doctor.” Patient communities can also help us identify the inequities in healthcare. One thing we found in having 44 social networks that are free to more than 3 million members is that when you divide data by race or socioeconomics, differences in time-to-diagnosis and treatment emerge. Then we say, now that we know the problem, here’s what to do about it.