Finding medical support – whether that is from a doctor, a physical therapist or other experts – when living with Ehlers-Danlos syndrome and comorbid conditions is incredibly challenging. Often, patients have to manage their care alone, coordinating appointments and communications between 10 – 15 specialties while paying six figure medical bills and trying to cope with everyday symptoms that makes it all exponentially harder. Hyp+Access, a non-profit dedicated to increasing access to care for people with connective tissue disorders is bound to change that with their new clinic Hyp+Care. Chronic Pain Partners’ Karina Sturm spoke with L and Audre, both directors at HypAccess, about their clinic, how it differs from other clinics specialized in EDS care and when they plan to open it.
Karina: Hi L, Hi Audre, how exciting that you created this new clinic! Can you explain how you came up with the idea behind Hyp+Care and how it is specifically designed to address the needs of those with Ehlers-Danlos syndrome (EDS)?
Audre: We started out as a community-based nonprofit organization, which was doing medical care coordination advocacy outside of the medical system. We specialized in working with people locally, nationally, and globally who were seeking and had been denied care whether for reasons related to biases against their conditions or identities. After doing that for 1.5 years, we launched Hyp+Access. In 2021, we realized the only way we would be able to get people access to equitable care options was if we ran the center ourselves because there were so many issues at every level of administration. Now we are on track to open our first clinic in New York City called Hyp+Care. We use the term “hyp” as a shorthand for hyper and hypo to encompass all experiences outside the normal ranges, including hypermobility, but not limited to it. Our clinic is going to be an article 28-compliant center under public health law, which means that we are the most regulated type of medical center in New York (but really within the US because New York is the most highly regulated state). This means we can take Medicaid-managed care plans.
With Hyp+Care, we thought about how siloed everything is; how there is no communication between healthcare professionals, and how the burden is always on patients to manage their care. We wanted to create a system that was addressing the needs of patients to take a lot of labor off of them and at the same time off of the clinicians who have to deal with the business model. We will do that for them. Clinicians should focus on complex medical decision-making.
EDS is not the only primary condition we are working with. Many people who don’t quite fit the current EDS criteria get diagnosed with other conditions that all overlap. For instance, we take on hypermobility spectrum disorders, which includes Ehlers-Danlos syndrome, as well as fibromyalgia, myalgic encephalomyelitis, long COVID, mast cell activation disorders and dysautonomia. The list goes on.
We’re focusing on comprehensive primary care to improve quality of life. We have primary care providers who can spend the necessary time with patients and understand that it’s an important job to help them navigate all of these different specialists. However, we have specialty care as well. And we’re offering modular options that people can choose from because we know that everybody’s experience manifests differently throughout their lifetime.
Karina: I am curious. Who are all these doctors and how did you find so many EDS experts?
Audre: Our clinical director is a non-interventional cardiologist and we’ve been working with her in New York for more than eight years, even before we launched Hyp+Access. We started working with her because she was the only non-interventional cardiologist who took Medicaid and prescribed saline infusions, which was really helpful for a lot of people. And then for the other specialties, we are hiring one person who has the knowledge and then other people who are interested and will be trained – we have a training model built into our system.
Karina: This sounds wonderful. It is hard to believe that what you are envisioning isn’t a fully private out-of-pocket concierge model. Is your clinic only accessible for NYC residents or other states or even countries as well?
Audre: It’s all very policy-dependent, and the policy landscape is shifting rapidly. Most state insurance is not transferable across state lines. However, there are options for people on Medicare and Medicaid to cross states sometimes. For others, it might not be possible. For the most part, right now, we are offering our services to residents of NY States. We’re also going to be having a sliding scale out-of-pocket fee structure. So if somebody wants to pay out-of-pocket, there will be an option for that. We’re not interested in charging exorbitant amounts. We’ll also have a charity care program. People who cannot pay for medical care here, can apply for that program.
All of those treatments for EDS and comorbid conditions are off-label, which means the FDA has not approved them for these conditions, but that doesn’t mean that they aren’t approved/covered by insurance. In order to get those treatments approved, you need to understand the justifications and the rest is medical coding. And building the medical coding model was our first step.
Karina: Besides the off-label-use of treatments, you also mention on your website that you are integrating both clinical and alternative therapies to create a holistic care approach for individuals with chronic conditions like EDS? What does that exactly mean?
Audre: If someone doesn’t have access to medical care, an alternative therapy might not do it for them, so people need to be able to access both. We’re trying to create a circular economy of care, which means that all of our profits go back into the care system and make other forms of care more accessible. We offer non-interventional cardiology, pain management, infusion services, like hydration therapy – in office, so people won’t have to pay facility fees. Pain management is our first inroad into that alternative holistics, for instance, we’d like to have osteopaths who are doing craniosacral therapy and medical acupuncture.
Karina: What role do the coordinators of your C.A.R.E. Management program play in supporting EDS patients at Hyp+Care?
Audre: The role L and I had as medical care coordinators/advocates was managing people’s care. We would sit down with them, spend two hours doing an intake to understand what their experience was. As medical care coordinators, we’re here to get them connected to information, care, people, and resources, but also to provide recommendations for mobility aids or braces that might be useful. We realized very early on that one of the big problems was that there is no connective tissue, for lack of a better word. Now care coordination and management can be covered by insurance. This means we can transition our care coordination and advocacy program from an external program that people have to pay extra for to an internal program that we actually bill insurance for. Our goal is to hire people with the conditions who likely already have a lot of experience doing this because we all do it for each other, right? And then they will be able to have a salary and a remote job. These care coordinators will make sure everything gets done in a reasonable timeframe. If a person has more than one chronic condition – which is the majority – they automatically qualify for a care manager.
L: Of course, we’ll be doing our own extensive and regular training for care managers to integrate all the knowledge we’ve amassed over the years and safety practices and connective tissue knowledge within that system so they can be doing what advocates all over the country and world have been doing for patients, but within the medical care system.
Karina: Can you tell us more about how Hyp+Care’s services will be rolled out in phases and what services will be available in Phase 1?
Audre: If we could launch with every possible specialty and primary care, we would. Because we know that it’s needed. The way that we think about all of these diagnoses is there’s a chronic pain and chronic fatigue component. Patients have musculoskeletal dysfunction as a result of chronic pain. They also have dysautonomia and allergic and immunologic problems, which often presents as mast cell activation. For specialties, we are starting with non-interventional cardiology because dysautonomia is such a huge need for patients with hypermobility spectrum disorders, long COVID, ME/CFS and fibromyalgia. Then, we’ll fill our first location with primary care and pain management. Care management will be integrated from the beginning. Then we’ll open a second location in New York, where we’ll be able to hopefully take 12,000 more people and expand all services, including specialties. Once we do that, we’re going to go into another state.
Karina: I know you always had marginalized communities in mind when you created this clinic. Can you tell me more about the thought process behind it?
Audre: We did it the opposite way other clinics do it: We planned with marginalized people in mind rather than them being an afterthought. We wanted to create an accessible system that provides care for all. It is the harder and more costly thing to do but makes it better for everyone. In the past, we had primarily worked with people who were denied care, so the barriers were obvious.
L: The boutique clinics that do open and are out there, calling themselves EDS clinics, they’re serving the people who already have most access to care. And I want to be very clear that care is bad for everyone. That doesn’t mean things are good for them. But the people that we have a history of advocating for and working with didn’t have any access to anything. They could not access EDS diagnosis or treatment. Our work began trying to address those gaps and combating the narrative that these conditions are rare when they’re absolutely not rare.
Karina: Let’s go through an example. Let’s say I’m the patient that wants to come to your clinic. What would I do? I have EDS, CCI, dysautonomia and I want to see somebody at your clinic while from Germany.
Audre: You don’t actually have to have a diagnosis to come to us. You could say, “Hey, I think I have these conditions. I want to be screened for them.” And we’ll be like, “Great, come on in. Let’s do a screening session.” You really only have to meet one diagnostic category, which is, for example, chronic and widespread pain for more than three months. We will have a separate website that will be connected to our scheduling system, which will launch hopefully by September. And then we will start scheduling people with the caveat that we’re waiting on varying Department of Health approvals, so it might get pushed an extra month. Once you have your first session and meet our criteria, you’ll be able to stay in the system.
L: Officially, scheduling should start to be available in the fall.
Audre: We are also getting our website refreshed to make it easier to navigate. So if folks right now want to be notified immediately once that opportunity is available, they would sign up on our waitlist. It also helps us to understand the needs of the community.
Karina: And what’s the master plan, like the long-term goal?
Audre: We want to shift the way the medical system is functioning as a whole for everybody. So we really view this as an opportunity, not just to support the communities that we have a particular expertise in, but also push for better care – more integrated care for everyone – because it’s really needed across the board. This can be a catalyst for change on a national scale, so that more clinics like this with slightly different models can be created, and they can design their medical models for patients in a way that is truly meeting their needs.
Karina: Thanks Audre and L, I am really excited about your clinic and wish you the best of success!
Audre: Thanks! Bye!
L: Bye
For better accessibility, Hyp+Access provided this text as an audio recording:
Karina Sturm
April 2025
