A Discussion with JC Muyl from MyRareData
Opening Remarks
During the month of May, Mental Health Awareness Month, patient advocates and community-based activists drive discussions that focus on exploring the importance of taking care of our emotional well-being and the value of seeking assistance and support. However, for people diagnosed with a rare debilitating condition and their loved ones, the issues surrounding one’s mental health can be a daily struggle.
According to rare disease community-based experts, around 360 million people worldwide are diagnosed with at least one rare disease.[1] With more than 7,000 rare diseases being life-threatening or chronically debilitating,[2] it’s no surprise that rare disease patient advocates and community-based activists are hyper-focused on identifying meaningful programs that can address mental health issues across the rare disease ecosystem. In fact, a recent study found that adults with disabilities report experiencing frequent mental distress, almost five times as often as adults without disabilities.[3]
From anxiety, stress, and depressed mood to emotional exhaustion and suicidal thoughts, the impact of a chronic debilitating rare disease can really impact a person’s ability to execute basic tasks, such as leaving their home at will. According to the CDC, frequent mental distress is measured by “poor health behaviors, increased use of health services, mental disorders, chronic disease, and limitations in daily life.” [4]
The rare360 editorial team, powered by the Rare Advocacy Movement, reached out to JC Muyl of MyRareData to obtain his opinion on the impact of the rare disease lived experience on mental health and what is being done to address these evolving issues.
A Discussion with JC
Q. What inspired you to become an ally for mental health awareness efforts in the rare disease community?
A. Over the past few years of working closely with several rare disease patient advocacy organizations, I’ve had a number of discussions about the lack of access to mental health resources for the rare disease community. The mental health of individuals living with rare diseases as a whole represents a very large unmet need, with up to 30 million people in the US alone, and 400+ million people in the world. So, I believe something can and must be done about this.
In parallel, I have, over the years, helped scale several mental health startups targeting the mental health issues experienced by the general population, including AbleTo, a tele-mental health provider, and Ria Health, a substance use disorder program.
So, in collaboration with other community-based activists and patient advocacy groups, I spearheaded a RAM Collaboration called Mental Health For Rare to take meaningful action by developing novel programs that will allow people diagnosed with and impacted by rare diseases to gain access to mental health resources that are appropriate for their specific situations.
Q. What are some of the most common mental health challenges that you have learned individuals diagnosed with rare diseases face, and how are these challenges being addressed?
A. As an ally to the rare disease community, I can only speak to what I have learned from others who have been diagnosed with debilitating rare conditions and their loved ones whose lives are often permanently altered as they embrace the caregiver or care partner role. Unfortunately, the lived experiences of people in the rare disease community are often misunderstood because of how small the community is when compared to the general population and the sense of isolation that most report experiencing.
One of the ways in which the challenge of isolation has been addressed by patient advocates and activists is the organization of support group meetings that take place across the globe, both in person and virtually. For instance, some charitable organizations host virtual bereavement groups run by certified group therapists for those impacted by rare diseases. While disease-specific support groups tend to be more appropriate to find others who may be able to relate to the lived experiences of a particular disorder, the overall rare disease experience tends to have several commonalities, allowing various disease-specific communities to relate to each other and share resources and solutions to common issues like nausea, chronic fatigue, pain, etc. Several patient advocacy 501(c)3 organizations and charities also host disease-specific conferences and events where patients and families gather to meet with each other to experience a connection with others who may understand their lived experiences.
So from my experience, I have seen a strong need to connect with others who can truly understand the uniqueness of the rare disease experience, as a means of addressing mental health challenges.
Unfortunately, due to the deep-rooted impact that the rare disease experience can have on a person’s mental health, Mental Health For Rare recognizes that simply connecting patients and families to each other functions as a temporary bandaid and that more meaningful resources are critically needed for not just the person diagnosed with the rare disease, but for the entire nuclear family.
Q. What are some of the biggest barriers to mental health care for individuals with rare diseases, and what could be done to overcome these barriers?
A. While there are several rare disease organizations that have published mental health-themed landing pages, they are all fairly generic. If you take a close look at the current mental health websites, you will find that there’s little that specifically addresses the issues that rare disease patients, caregivers, and care partners experience.
There’s general content available, but little in terms of actual resources, never mind resources focused on offering guidance on how to access mental health support specific to the experiences of individuals with rare diseases. One of the reasons for this gap in mental health resources is the lack of healthcare professionals who specialize in rare disease mental health. Mental Health For Rare seeks to address this systemic healthcare gap. The rare disease community has been historically disenfranchised because of how small each community is in comparison to the general population. However, through the work of passionate patient advocates and community-based activists to unify the global rare disease community, we can now see that there are over 360 million people impacted by this healthcare gap globally.
Additionally, by addressing this critical healthcare issue through the development of meaningful programs for the rare disease ecosystem, the healthcare industry will be better equipped to address the mental health needs of the estimated 1.3 billion people experiencing significant disability globally.
Mental Health For Rare is designed to be pragmatic so that each mental health resource generated will be meaningful to the communities it intends to serve. Functioning as a specialized resource hub and think tank within RAM’s platform, Mental Health For Rare seeks to:
adapt existing Mental Health solutions to the needs of the rare disease community.
launch mutually beneficial collaborations that improve access to Mental Health resources for rare disease patients, caregivers, care partners, and siblings.
promote the use of Mental Health resources across the rare disease ecosystem.
support research & publications that analyze the progress and impact of Mental Health solutions dedicated to addressing the unique needs of the rare disease community.
Some of the currently live projects include:
a Rare Therapist CME program, which will be offered free to healthcare professionals interested in working with rare disease patients, caregivers, and care partners.
rare360 patient advisory committees, which are designed specifically to adapt existing mental health solutions to the needs of rare disease communities.
a curation and review initiative of existing resources that may be appropriate for the rare disease ecosystem (with the goal of being able to one day generate an open-source resource hub of meaningful mental health programs).
Q. How can we ensure that mental health support is inclusive and accessible to all people living with rare diseases, regardless of their social identity, background, and/or socio-economic status?
A. Mental Health For Rare is aligned with RAM’s ethical community-based governance processes to ensure that program decision-making is truly democratic and that the input of each involved stakeholder is recognized equally. To ensure each stakeholder is provided with equitable opportunities to participate, RAM’s platform is being utilized to power Mental Health For Rare in a manner that is sustainable and accessible to all interested in participating, regardless of their social identity, background, and/or socio-economic status.
Mental Health For Rare aims to foster open communication and transparent collaboration activities across the rare disease ecosystem, so the learnings from each community can be available to all. Mental Health For Rare is designed to be a catalyst for action by nurturing mental health-dedicated projects from ideation to execution.
Q. How can people stay up-to-date with the initiatives and mental health efforts taking place for rare disease patients?
A. Anyone interested in staying up-to-date with Mental Health For Rare should subscribe to RAM’s mailing list (which can be found at the footer of RAM’s website). I also advise people to be sure to follow RAM’s social media channels (@rareadvocacy).
Anyone interested in doing more than just staying up-to-date, however, is encouraged to answer the Stakeholder Call To Action. Patient Advocacy Organizations can visit the Mental Health For Rare website and register their organization’s interest. Mental Health Solution Providers can submit their platform’s capabilities to initiate a discussion with Mental Health For Rare. And companies seeking to learn more sponsorship opportunities or about potentially supporting an existing rare disease mental health program and/or the development of a novel rare disease mental health program are encouraged to visit Mental Health For Rare to learn more.
About JC
JC is a 25+ year veteran of the healthcare industry who offers strategy & execution services to early-stage digital health companies that cover a wide range of use cases across the healthcare spectrum. He specializes in accelerating growth, via innovative strategy and on-the-ground execution.
JC has direct experience in many segments of healthcare, including Life Sciences, Payers, Employers, Providers, Labs, Behavioral Health, Diabetes, Patient Advocacy, Rare Diseases, Med Devices, Retail Health, and more.
Early in his career, JC was instrumental in growing C3i from a small startup in downtown Manhattan to a global healthcare BPO player with 3,000 employees around the world. The company exited to a division of Merck.
Over his career, JC has launched multiple service lines into multi-million dollar businesses, from a Pharma CRM integration practice to a multilingual Clinical Trial support business in Europe.
On a personal level, JC is an active volunteer for mental and physical disability causes (Best Buddies, Paralyzed Veterans of America) and operates MyRareData, a non-profit focused on helping rare disease patient groups raise funds through data.
Abbreviation Key
Q. = Question
A. = Answer
RAM = Rare Advocacy Movement