Rare Diseases Extra Feature: Q&A with Elizabeth Apelles

Rare Diseases Extra Feature: Q&A with Elizabeth Apelles

By Andrew Humphreys • [email protected]

Honeycomb Health is a nonprofit created to help people with rare diseases securely store, manage, and share comprehensive health information. By leveraging innovative technologies and inspired market solutions, Honeycomb unites patients, family members and healthcare providers in rare disease management. In addition, HH offers free online storefronts to rare disease advocacy groups as a way to contribute to funding new research. To get a better sense of the impact HH has made—and glimpse a roadmap for its future work—Med Ad News spoke with the magazine’s editorial advisory board member Elizabeth Izard Apelles, who is Chief Executive Officer of Greater Than One Group (thegtogroup.com) and a founding member of Honeycomb (honeycombhealth.com).

Med Ad News: Why was Honeycomb Health started?

Elizabeth Apelles: It really was a case of something beautiful coming out of one of life’s challenges. 

GTO works a great deal in the rare disease space, and rare disease affects a number of people in my family. One of these is SCAD. SCAD is an ultra-rare disease where blood pools in between the layers of an artery wall. These blood pools stress the fibers that hold the artery together. Over time, this stress can cause the arteries to split open. What makes SCAD so scary it is often diagnosed only after a spontaneous arterial rupture, which can be lethal. Medical researchers are still trying to determine whether SCAD is ultimately related to vascular changes caused by hormones, autoimmune inflammatory diseases, connective-tissue disorders, or something else, but they do know that it may account for between 2 and 4 percent of all acute coronary disease cases. SCAD is more common in women, so it was surprising to learn one of the males in my family was affected by it. But, as I said, rare disease does run in my family, so we were prepared.

Med Ad News: So, Honeycomb Health grew out of that support process?

Elizabeth Apelles: Yes, we started with the SCAD Alliance, a group that does all it can to fund research, identify patients, and help them. Fact is there are only a few places in the US that know what SCAD is, so when a patient is finally diagnosed, often, they then have to literally move to be near a hospital that can support them. Can you imagine having to pick up your whole life? It is just so disruptive not to mention expensive. 

Through the SCAD Alliance, we met Rebecca Trahan, who is everything from athlete to design rock star to SCAD survivor. If you get the chance, you should interview Rebecca; her story puts into perspective how much a rare disease can challenge even the healthiest patient, just like that.

Rebecca moved from Texas to NYC due to her condition. Not only are Rebecca and I now friends, but Rebecca is integral to the HH team. She manages our storefronts, in addition to being the creative contributor to the HH platform. 

Ours is a supportive, human connection that has impacted our lives as well as many at GTO. Scaling Honeycomb Health will allow us to affect many, many more rare disease patients as well as those who want to help them. 

Med Ad News: Please discuss the history of Honeycomb Health.

Elizabeth Apelles: Honeycomb – or HH, as we call it – was founded in 2018. That’s when we drafted our white paper, published our deck, and started building the technologies that would support our website, store(s), and data processes. But it wasn’t until last year, when we launched our live partnership with SCAD Alliance, that HH really came into its own. COVID has slowed it down a bit, mostly due to lack of funding (GTO funds it 100 percent). From everything we’ve seen so far, we will be back on track in 2021.

Med Ad News: Could you please elaborate on that?

Elizabeth Apelles: Essentially, HH will empower rare disease patients to securely store and share comprehensive information about their health. Not just complete blood count and forced expiratory volume levels. We’re talking about full symptom lists and diagnoses, genetics, information about people you’re related to, histories of where you have lived or other environmental factors that could affect epigenetic expression. Everything. HH is going to enable rare disease patients to store that information in a secure, permissive, and legally compliant manner. It is HIPPA and GDPR compliant; we plan to use blockchain technology to securely store some of the information, so it stands the test of time. 

To put a fine point on it, if you are a potential rare disease patient in the middle of a diagnosis process with your healthcare provider, and she asks you “Oh, do you have this comorbidity or genetic marker?” You can respond “Oh, you know what, my grandmother did.” And, if you are a validated node in your grandmother’s chain, you will be able to pull up her full health information so that your physician can review it in real time.

Med Ad News: That’s amazing! HH sounds like it’s really advancing the state of the art.

Elizabeth Apelles: Our aim is to fill two important voids.

For patients, it gives them ownership of their data, not to say it will take away from EMRs – this is a way to bring the information home, to add information from relatives across generations as a way to help in the identification of new and unseen conditions. It is free to patients so they will make of it what they will. It basically replaces the fifteen-pound binder many rare disease patients carry around with them today. 

For healthcare providers, it gives them the information they need, when and where they need it. Rebecca is in something of an HH pilot program with her SCAD records. Her cardiac failure specialist often says that Rebecca is her best patient because she knows everything about her own health. In many ways it is a partnership. 

Our solution with HH is that we can help rare disease patients and prospective rare disease patients become their own best advocates. We can make it as easy as possible for them to brief their healthcare providers and start the conversation around “Hey, my chest pain might be SCAD, and here’s why.”

Med Ad News: Does Honeycomb Health have any competitors?

Elizabeth Apelles: Probably. I’m not sure? I know Google and IBM Watson are trying to collate data to aid diagnoses. With all the time I’ve spent in the rare disease space – over 20 years at Greater Than One Group, 40 years as an adult, and now three at HH – I’ve never seen anything else that solves this need. Our big, audacious goal is to scale it so that every patient in the world has an easy way to hold on to their information, for the next generation(s), and for every rare disease advocacy organization to have a mechanism that is fun and collaborative, to raise funds for research. 

Med Ad News: And, that scale is the success you’ve had with SCAD?

Elizabeth Apelles: SCAD is our pilot and it is working. The HH platform is just entering Phase I beta. The SCAD alliance store is up and running; you can see it here: https://scadalliance.store/.

Rebecca and the HH team designed merchandise specific to the disease state, which is all fantastic. My favorite is a tote that says “More Heart. Less Attack.” Every design was pro bono, and the entire storefront will be freely hosted in perpetuity. All purchases are 100 percent tax deductible, and all profits go to SCAD Alliance.

In terms of bigger successes, that storefront is a model for our larger impact. Empowering people to own their membership in a community. Raising funds for ongoing outreach and research. We want to do that for every rare and ultra-rare disease in the world. Our store engine can accommodate 500 separate and unique storefronts, all powered by Honeycomb Health.

See the whole program here: https://honeycombhealth.store/. If you are at all inclined to make a purchase, either for SCAD or HH, we would be grateful. You’ll be contributing to a great cause.

Med Ad News: That is a lot of impressive work to have gotten done in such a short amount of time. Did you need to partner with any other organizations or companies?

Elizabeth Apelles: Right now we have no partners; frankly, we would love support; regardless we will persevere. We’re fortunate in that the men and women of the Greater Than One Group support this cause. GTO is a privately held, global marketing and communications agency, so we have the skills and resources to do this work – more importantly, our culture that believes this is not what we can do, but what we should do. Our mission is consistent, to bring technology, content, media and creative together, to make healthcare better. We are a thoroughly compassionate group – and we’ve been able to lean on our collective expertise, from New York, to San Francisco, to Madrid – this is what we do. 

In addition, we have Rebecca with her barking dog design. That’s a firm she runs and is a great contributor to our creative chops. 

Med Ad News: Where is HH going from here?

Elizabeth Apelles: Within 10 years? We hope to support up to 500 rare disease advocacy organizations. We hope to have the HH technology platform fully built and in use. We hope millions of families who want to support rare disease will be able to. 

Perhaps HH will go beyond rare diseases. If you have breathing conditions, and you enter your information, we’d like you to be able to see everyone else in your global network who developed identical or similar conditions. Maybe they are related to you, which could suggest genetic causes. Maybe they grew up or spent significant time in the same areas that you did, which could suggest a host of environmental or behavioral causes. Maybe it’s a mix, or something else entirely. Either way, it would lend valuable, instantly visualizable context to your healthcare provider when they are initially proposing treatment and management of your present symptoms.

Still, HH is not just for you. The way we store and share data means that each individual can create a comprehensive record of their health information. Each record will automatically constitute a piece of a searchable map of health conditions and disease states, updated without error, in real time. Trans-local. Trans-generational. Transformational. Can you imagine if your parents could pass down their health records to you, so that someday you could share theirs and yours with your own children?

We were intentional when we chose the “honeycomb” metaphor. Bees are phenomenally intelligent, well-coordinated creatures. Each one has their own cell in their own hive, and each one knows exactly how to do their own job. And then they come together.

And, when they do, they create literal, liquid gold. That’s honey. That’s what we’re after.

Med Ad News: Terrific.

Elizabeth Apelles: Yup.

It’s a big dream, and we’re committed to making it happen – creative, marketing, technology. Any ongoing work that relates to managing the data lakes, such as rearranging data into any configuration patients or providers want, running check-sums, or upgrading legacy software. We’re going to keep doing it all.

Med Ad News: How does that get funded?

Elizabeth Apelles: Well, this is going to be a two-part plug.

Within the Greater Than One Group lives GTO Greater Good, a 501(c)(3) nonprofit. The mission for Greater Good is to donate time and resources to innovative healthcare solutions that make us all better, together. HH is funded through Greater Good, ultimately from profits generated by the GTO agency. And normally, that’s enough.

But, since we’re being so ambitious about the slate of creative and blockchain work we have queued for this year, we need to go the extra mile. Or miles, as it were.

Rebecca is going on a cross-country road-trip to both to celebrate her 10th year after her event, and her birthday, and to raise $3 million for Honeycomb. Imagine what we could do if 3 million people donated just $1? North to south, east to west. She’s going to drive over 10,000 miles to network with every group of rare and ultra-rare disease patients, and meet all of them in however many cities, towns, or neighborhoods they find themselves in. 

She’ll travel for up to two months, and the only concrete plan she has so far is to be in Colorado for her birthday. It’s going to be Kerouac meets barking mad fun, social media and offline, coming to a city near you. If you have any suggestions of locations or diseases, or want to donate, please reach out. There will be a live GoFundMe soon, with all the details.

She will promote our Go Fund Me Page which is here: https://www.gofundme.com/f/8v6df-help-us-empower-rare-disease-patients?utm_campaign=p_cf+share-flow-1&utm_medium=copy_link&utm_source=customer

100 percent of what we raise is tax deductible and 100 percent will go towards the HH platform and our HH stores.

Med Ad News: We have to check it out.

Elizabeth Apelles: Thank you!

Med Ad News: No, thank you. HH is really transformational.

Elizabeth Apelles:  The folks at Greater Than One do great work for our clients, as well as for others. That is what makes us GTO.