Thu. Jun 8th, 2023

One in 10 women of reproductive age have Polycystic Ovarian Syndrome (PCOS), making it one of the most common hormonal disorders in the world. Symptoms range from infertility to weight gain; excessive hair growth to acne, and the condition puts women at a heightened risk for developing depression, anxiety and type 2 diabetes.

Despite its high prevalence, the syndrome is especially challenging to diagnose because it affects so many bodily systems. “It’s a collection of symptoms that run together, it’s not an easy thing where you can run one test and identify PCOS,” Dr. Heather Huddleston, Director of the PCOS Clinic at UCSF Health and advisor to the telehealth platform Allara, tells Forbes. “It falls through the cracks in terms of medical specialities.” Which is why over 50% of women with PCOS remain undiagnosed.

“It can take multiple years and physicians to get a diagnosis,” Rachel Blank, founder of Allara, tells Forbes. Blank is speaking from experience, as it took many years of seeking siloed specialists before she received an official diagnosis at the age of 20. Having previously co-founded telemedicine platform Rory, Blank applied her background in telehealth to develop a new solution—Allara, the first chronic care platform for women with PCOS, which launched in June of last year.

Allara reduces the difficult path to diagnosis from years to days, with their diagnostic tool which tests a wide range of hormonal and metabolic markers, such as thyroid levels and insulin resistance. Following the test, users are paired with an Allara medical provider for a 30-minute consultation to review results and develop a treatment plan. It’s this second step—the treatment plan, or lack thereof in our current medical system—that motivated Blank to start Allara, for it wasn’t the diagnosis that Blank found most difficult, but rather the lack of long term care that followed.

With no official cure for PCOS, Blank says doctors only express concern when patients are overweight or trying to get pregnant, often defaulting to prescribing birth control as a treatment for irregular periods. “Yes, there’s lots of protective reasons to go on birth control pills, but it misses a major core component of the syndrome which is that this is a reproductive and metabolic condition,” says Allara’s lead dietician Felice Ramallo.

Like Blank, Ramallo has PCOS and has experienced firsthand how the current care model leaves women in the dark on how to manage the long-term condition. “The first line treatment is identified as lifestyle change: increasing physical activity, improving diet, sleep and mental health,” says Ramallo. But this treatment model is not easy for people to navigate alone. Dr. Huddleston adds, “Weight loss is what gets recommended for people with PCOS all the time but that next step in supporting the patient [following diagnosis] is not in place.”

“A lot of the patients we see were diagnosed five to 10 years ago but have fallen through the cracks, they have the diagnosis but they haven’t been able to find ongoing care,” says Blank. “It can be hard to find collaborative, holistic care that incorporates the medical aspects but also nutrition and lifestyle.” It’s for this reason Allara takes a holistic approach that provides not only medical care through a registered OBGYN but nutrition and lifestyle counselling too.

“Allara is unique in how much the doctor and dietician communicate,” Ramallo tells Forbes. “I’m constantly having conversations between the patient and the doctor, it’s such a targeted and personalized approach.” Patients not only have an in-depth on-boarding video call with their medical provider, they develop close relationships with their care team by working with the same providers throughout the process, having regular video check-ins and access to unlimited text messaging.

The emphasis is on a collaborative approach, one that, unlike the current care model, addresses the underlying causes of the condition and empowers patients to choose from a variety of solutions. “The first step is understanding what is going on for the patient and what’s bothering them,” Dr. Huddleston tells Forbes. The doctor says her recommendations will differ depending on the patient’s expressed concerns, which range from irregular period cycles to excessive hair growth.

Lead dietician Ramallo says the same customized, empowering approach is taken with nutritional counselling, as patients are provided with personalized supplement suggestions and encouraged to focus on mindful eating. “We’re not going to tell you to cut anything out, we focus on getting a good variety and balance of all the different food groups with a few PCOS-specific tweaks,” Ramallo tells Forbes.

Equally diverse as the causes and symptoms of PCOS is the demographic profile of Allara’s user base. Blank says women from all different economic backgrounds, professions and ethnicities come to Allara for treatment. “38% of our patients are Black or Latina,” says Blank. “It points to the fact that this is a huge pain point for women, and they’re willing to do whatever it takes to get better care.”

While there are multi-disciplinary clinics that treat PCOS, they are few and far between, making accessibility one of the greatest hurdles to receiving treatment. “If you don’t live within driving distance [of a clinic], how are you supposed to access them?” Blank tells Forbes. “Our vision for Allara is to bring care to women across the country regardless of where they live.”

The online nature of the platform does just that, by removing the geographical constraints to seeking care. While Allara does require bloodwork and ultrasounds, Blank says, “for the most part, everything is done virtually.” Recognizing that women with PCOS need an extra level of care that involves more frequent appointments and experts working collaboratively across multiple disciplines, Blank purposely built Allara as a telehealth platform to make the service more accessible.

Blank, who has been working in digital health since 2018, couldn’t have chosen a more opportune time to launch a telehealth platform. “The pandemic expanded something that was already there but didn’t have the push it needed to get off the ground,” says Dr. Huddleston. “COVID accelerated digital health expansion in a matter of months,” adds Blank. “Because providers were forced to practice virtually, it opened up a lot of eyes on just how much we can do from a virtual care model.” While prior to the pandemic there was skepticism towards online care, Blank and Dr. Huddleston say there is now a lot more funding poured into digital health start-ups.

While the boom in telehealth has undoubtedly provided more options for women with PCOS, there remains some barriers to accessing care. Patients require an electronic device with solid internet access, plus the luxury of time and privacy to engage in confidential conversations with their providers. Allara is also not a free service, with memberships starting at $99 per month and a diagnostic test costing $149 per session.

One of the greatest hurdles to making Allara more accessible is the out-of-pocket costs, as insurance providers are yet to get on board. Blank says she aims to secure insurance coverage by the end of this year, “I’m focused on getting us contracts with insurance payers so that we can expand access, you’d be surprised how much of a case I have to make for women’s health care.”

Dr. Huddleston responds to Blank, highlighting that insurance providers should have an incentive to invest in women’s health, “when women take better care of themselves, down the road that’s less diabetes, fewer heart attacks, the big ticket items that insurance has to pay for.”

It shouldn’t take long for insurance providers to see the profit potential of Allara, demand for the platform has skyrocketed since launching last year—there are currently over 15,000 women on the waitlist. “It shows how needed something like this is,” Blank tells Forbes. The CEO says Allara will clear their waitlist once they secure enough medical providers to ensure they can maintain their highly customized approach.

It shouldn’t be long, given that Allara has seen a high level of interest from the provider side too. “That’s something that’s been exciting for me to see, the demand from providers who are interested in working for the platform,” Blank tells Forbes. Dr. Huddleston says the high demand among providers to work with Allara is explained by the platform’s highly personalized approach, “It’s wonderful for us and the patient to have that deep interaction. Most providers don’t have that luxury, they’re under the gun to see a certain number of patients in the hour.”

Providers will also be interested in working for Allara because of their commitment to research on a health condition for which there remain many unanswered questions. “Just as it’s an orphan in clinical care, it’s an orphan in research funding; no one is picking up the funding for research on this condition that impacts up to 10% of the population, it’s crazy,” says Dr. Huddleston. “There’s huge potential to understand the disorder better, to roll out treatment trials; there’s a huge lack of understanding about basic questions.”

Along with improving accessibility, Blank says becoming a leader in research is one of her goals for the platform, “as we have more and more patients using our platform, we will have one of the biggest data sets of women with PCOS to be able to study. That’s a part of our long term vision for Allara—to drive the standard of care forward in a way that’s not been invested in to date in the U.S.”

Above all else, Blank’s first priority is filling the gap in care for women with chronic conditions, a gap that has affected her, Ramallo and the millions of women in the United States living with PCOS.

“When we think about chronic women’s health conditions—endometriosis, PCOS, anything that affects them for a long period of time and is reproductive in nature—there’s a lack of consistent collaborative care for them,” says Blank. “That’s the long term vision for Allara, to be that collaborative care home that fills that gap in care for women with chronic conditions. Over time that means the number of women we’re hoping to treat is in the tens of millions, and that’s just in the U.S. alone.”

Some interview responses have been edited for length and clarity.

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