Key Takeaways
- Healthcare leaders must proactively adapt financial assistance programs to address persistent affordability gaps created by evolving policies like the Inflation Reduction Act.
With nearly $220 billion in medical debt burdening Americans today, health equity for patients, especially those living with rare diseases and chronic conditions, has never been more critical. Individuals managing rare diseases often face disproportionately high healthcare costs, complex navigation through the healthcare system, and significant disparities in access to necessary care. Tiara Green, President of Accessia Health, offers a unique and powerful perspective rooted in personal experience and professional expertise, aiming to bridge the gap between financial hardship and quality care. Through a model built on education, patient advocacy, financial assistance, and strategic healthcare partnerships, Green's leadership at Accessia Health exemplifies an actionable commitment to health equity.
Rare disease patients face unique healthcare equity challenges primarily due to significantly higher medical costs and less available treatments. According to Green, rare conditions demand extensive care, which translates into high out-of-pocket expenses—often tens of thousands of dollars annually.
“Americans collectively have $220 billion in medical debt”
Accessia Health tackles this inequity by providing critical financial assistance that covers medication copays, premium assistance, and necessary medical supplies.
Healthcare policy changes, such as the Inflation Reduction Act set to take effect in January 2025, directly impact patient affordability. Tiara Green emphasizes the necessity for organizations to proactively adapt their support structures to address these policy-driven changes effectively:
“We step in and adapt based on those policies when they are implemented,” Green says, underscoring their responsive, patient-centered strategy.
One of the most critical yet overlooked components in healthcare equity is health literacy. Green emphasizes its role, stating clearly that improving health literacy directly reduces costly and preventable hospitalizations:
Green’s commitment to education is personal and professional. Her career began in community health education, shaping her approach at Accessia Health. She describes their education initiative, “Amplify Your Voice, Control Your Care,”designed to empower patients with essential knowledge and resources.
Health disparities cannot be addressed without confronting social determinants of health. Tiara Green discusses the Louisville Community of Care Project as an example of targeted community engagement that significantly improves healthcare access:
Green advises that meaningful community partnerships require respect and collaboration, not domination. “It has to be in the mindset of, how can we put our resources together and work together on our common and shared goals?” she states, highlighting a cooperative approach as essential for success.
Nonprofit healthcare organizations often face the dual challenge of needing efficient internal systems while navigating external bureaucratic hurdles. Green outlines critical strategies for maximizing the impact of limited resources:
This approach is vital, Green explains, because every dollar saved on operations directly benefits patients who desperately need financial assistance and healthcare advocacy.
Legal assistance is often overlooked in healthcare strategy but is crucial for patients navigating complex systems such as Social Security Disability Insurance (SSDI). Green points out that legal aid not only provides critical representation but also empowers patients to advocate for their rights effectively.
For organizations looking to enter community health partnerships, Green emphasizes a thoughtful and informed approach:
Green advises executives to start by simply reaching out, stating clearly, “Let me learn because you have to listen first to determine how you can partner with that organization moving forward.”
Addressing healthcare equity, especially for rare and chronic disease patients, demands more than goodwill—it requires strategic leadership, meaningful community partnerships, proactive policy adaptation, and comprehensive patient education. Tiara Green’s insights from Accessia Health illuminate a clear path forward. Organizations and healthcare leaders must unite their resources and expertise, working collaboratively toward a shared goal: equitable, accessible, and affordable healthcare for every individual.
Donate Now: https://accessiahealth.org/donations/
there are 10,000 known rare diseases it's a huge huge problem and only 5% have an FDA approved treatment [Music] hello everyone and welcome to the strategy of Health podcast from the American Journal of Healthc Care Strategy my name is Cole Lions and I'm here today with Tiara green who is the president of Rarity Health Tiara welcome to the podcast hi thank you for having me glad to be here we're really glad to have you here and I think this topic is going to be super interesting for our listeners because rare disease is something that obviously by definition is rare but cumulatively it affects so many people so can you just start by telling us a little bit about yourself and how you got into this specific Niche of healthcare yeah absolutely so um I have been in healthcare marketing and Communications for over 15 years now and I started my career working in big PHA um working on blockbuster drugs for things like high cholesterol and diabetes um and while that was rewarding work I really found my passion when I started working in rare disease um about eight years ago and what drew me to it was just the incredible unmet need um as you mentioned these diseases are individually rare but collectively they affect um about one in 10 Americans so it's a huge public health issue um and the challenges that these patients face many of them children um are just mountainous from getting a diagnosis to finding a specialist to getting access to treatment if there is one um so I really felt called to you know use my skills in Communications and advocacy to help elevate the voices of these patients and help drive progress in this space that's that's really powerful and I didn't realize the statistic was one in 10 Americans that's that's huge when you think about it that way um you mentioned the challenges you know diagnosis treatment access what do you think is the biggest hurdle right now for a rare disease patient in the US Health Care System yeah it's it's hard to pick just one um but I would say the diagnostic odyssey is probably the first and biggest hurdle um on average it takes rare disease patients about 5 to 7 years to get an accurate diagnosis and during that time they see multiple doctors they get misdiagnosed they undergo unnecessary tests and procedures um and meanwhile their disease is often progressing so that delay is just devastating um and a lot of it stems from just lack of awareness among providers you know primary care doctors aren't trained to look for zebras they're trained to look for horses right so um education and awareness is a huge piece of solving that um but then once they do get a diagnosis then the access challenge kicks in right because even if there is a treatment these treatments are often very expensive because they're for small populations and so navigating insurance coverage and reimbursement is another huge nightmare for families yeah no I can only imagine and I've heard that term the diagnostic Odyssey and it's just it sounds exhausting just just hearing about it let alone living it um with Rarity Health what are you guys doing specifically to try to alleviate some of these burdens or to help connect the dots for these patients yeah so at Rarity Health we are really focused on bridging the gap between the patients and the biopharmaceutical companies that are developing treatments um so we work with um biotech companies to help them incorporate the patient voice early in the drug development process so not waiting until a drug is approved to say hey patients what do you think but actually involving them in clinical trial design involving them in um you know developing the end points that matter to them um because a lot of times endpoints that matter to regulators maybe aren't the most meaningful things to patients in their daily lives so we help facilitating that engagement um and then we also do a lot of work around disease education and awareness campaigns to help shorten that diagnostic cycle um trying to reach providers try to reach patients who might be symptomatic but undiagnosed um and connecting them with resources so it's really about partnership and collaboration across the ecosystem that's so smart engaging them early on in trial design because you hear stories where a trial fails or it doesn't enroll because the protocol was just too burdensome for a family that's already dealing with a sick child so getting that input upfront seems critical um where do you see the future of rare disease treatment going I know there's a lot of talk about gene therapy and precision medicine is that providing a lot of hope it absolutely is um I think we are in a golden age of science for rare disease um with Gene therapies with Gene editing crisper technology um mRNA technology the things that are possible now um to actually cure some of these diseases not just treat symptoms but actually correct the underlying genetic defect is is mind-blowing um but the challenge again comes back to access and affordability right because these one- time Curative therapies come with a very high price tag um and our Health Care System isn't really built to pay for value over a lifetime it's built to pay for pills every month right so we have to rethink the reimbursement models um to make sure that this scientific innovation actually reaches the patients who need it absolutely that payment model reform is going to be key because the science is outpacing the economics right now it seems like um for anyone listening who maybe wants to get involved or help support the rare disease Community what what can the average person do yeah that's a great question um I would say first of all just educate yourself um you know rare disease day is coming up at the end of February every year um that's a a great opportunity to just learn share information on social media um donating to patient advocacy organizations is huge these organizations are often run by parents or patients themselves on shoe string budgets um and they fund Vital Research so finding an organization for a disease that maybe touches your heart or someone you know and supporting them um and then also advocating for policy changes you know there's legislation like the orphan drug act that incentivizes development for rare diseases making sure that those incentives stay strong is really important so letting your representatives know that you care about this issue um can go a long way that is great advice well Tiara thank you so much for the work that you're doing and for taking the time to share your insights with us today it's been a pleasure thank you so much for having me [Music]
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