Navigating healthcare is challenging for most individuals and families, but for those with rare or chronic health conditions who are also living in underserved communities, the obstacles are exacerbated. While most patients with rare conditions experience delayed diagnosis and limited treatment options, underserved populations also struggle with hurdles such as lack of access to specialist care, limited local resources and support, and the crushing financial burden of managing their complex condition.

“The financial impact of healthcare is staggering for individuals with rare conditions,” said Tiara Green, president of Accessia Health, a US-based national non-profit 501(c)(3) organisation. “Affording health insurance is just the beginning, the cost of medical care is immense. Individuals must afford their copayments and coinsurances and pay for items such as travel, lodging and durable medical equipment. Patients with rare conditions need a true holistic support system that addresses the full spectrum of their healthcare needs.”

According torecent data,Americans collectively hold $220 billion in medical debt, with around three million people owing over $10,000 each. For those with rare and chronic health conditions, especially those facing inequities, this debt is likely to increase as they strive to afford even the most basic and essential care. That’s why patient assistance programs (PAPs) play a crucial role in bridging these gaps in care.

“Patient assistance programs have been around for decades; however, as we better understand the needs of patients, the way in which assistance is provided must evolve so that organisations are providing comprehensive services to individuals,” said Green.

Traditional patient assistance programs primarily focus on helping with medication costs, by covering co-pays which increase access to necessary therapies and medicines. However, the traditional scope is limited, often failing to address broader financial needs such as travel expenses, lodging and other non-medical costs. This is the gap that some charitable PAPs, like Accessia Health, are striving to fill. Accessia Health aims to provide a holistic approach to access care, not only to help alleviate financial pressures, but to provide advocacy, education and even legal aid, all aimed at increasing adherence to treatment plans and improving overall health outcomes.

“We recognise that patients with rare diseases have diverse and complex needs, which are not always addressed via traditional assistance,” said Green. “For some patients, clinical trials are the only available treatment option. For others, specific medical devices are critical to their treatment. That’s why we are looking beyond co-pay assistance and offering support for a wide range of medical expenses, including lodging during treatment, diagnostic and laboratory testing, durable medical equipment and other essential services. This holistic approach ensures that patients receive the comprehensive care that they need.”

As Tiara explains, a patient with cystic fibrosis may need specialised support and respiratory therapy equipment, while a patient with haemophilia requires regular infusions and physical therapy. Flexibility in funding is key for those being served. The nonprofit’s assistance model, calledYour Assistance, Your Choice,empowers patients to use their financial assistance on the healthcare expenses most critical to their healthcare journey. This type of flexibility allows individuals to allocate funds based on their own needs, reducing their financial burden and improving their overall quality of life.

Real-world examples highlight the success of this approach. Consider Amy, a patient diagnosed with hereditary angioedema, whose tongue and throat would swell to the point of requiring a ventilator in the hospital every few months. Through the help of financial assistance from Accessia Health, Amy was able to better afford her medication, treatment and travel expenses to see specialists. Thanks to the treatments and support from specialists, her quality of life has improved and her hospitalisations have been less frequent. Patients like Amy who are enrolled in comprehensive patient assistance programs, like those offered by Accessia Health, tend to experience better health outcomes and report higher satisfaction with their care because the financial barriers to receiving care are alleviated.

While financial assistance can be life-changing for some patients, for others gaps still remain, which is why many organisations now offer educational content, empowering individuals to understand their conditions and navigate the healthcare system effectively. In addition, case managers play a crucial role in guiding people through the healthcare system. They offer personalised support to help understand insurance and healthcare options and find access to financial assistance if needed. At Accessia Health, our free legal aid program, A.C.C.E.S.S®, helps individuals with disability legal aid, Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) claims.

“At the end of the day, we want to arm patients with the financial support and advocacy that they need so they can focus on their own health journey and treatment,” said Green.

With new approaches to financial support through organisations like Accessia Health, underserved patients battling rare and chronic health conditions now have access to life-saving aid tailored to their specific needs. To learn more about how Accessia Health can support you or your loved ones, visitAccessiaHealth.orgtoday.

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