Prior Authorization Pitfalls: Delays and Barriers in Rare Disease Treatment

Prior authorization, a process requiring prior approval from insurance providers before certain medical procedures or treatments can be covered, has become ubiquitous in the U.S. healthcare system. While intended to manage costs and ensure appropriate utilization of resources, prior authorization can pose significant challenges for patients, particularly those with complex conditions or rare diseases.

A KFF survey of adults with health insurance found that roughly 6 in 10 insured adults experience problems with their insurance. These problems include denied claims, network adequacy issues, prior authorization delays and denials, and others. Among adults with more than 10 physician visits in the past year, 31% experienced prior authorization problems. This compares to smaller shares of moderate users of health services (3-10 visits) and low users (2 or fewer visits), who experienced prior authorization problems at rates of roughly 20% and 10%, respectively. About one in four (22%) adults under Medicaid experienced prior authorization problems in the past year, compared to 11% with Medicare and 15% with employer-sponsored coverage.

The most significant challenge in prior authorization is the time it takes; the process is often lengthy and bureaucratic. HCPs are asked to submit extensive documentation for their patients, including medical records, test results, and detailed explanations of the requested treatment. These requirements can be burdensome for some patients and their families, especially when dealing with complex medical conditions. On top of this, the review process in itself can be very time-consuming, with the possibility of denials and appeals causing further delays in treatment initiation. Even with all required documentation submitted, insurance providers may still deny prior authorization requests for various reasons, such as questioning the necessity of the treatment or suggesting cheaper alternatives. As a result, patients are often forced to go through an appeals process, which not only delays their treatment but also adds to their financial burden. This can lead to frustration and, in some cases, patients abandoning treatment altogether.

The combined effects of these challenges can significantly impact patient access to care. Delays in prior authorization may result in disease progression, worsening symptoms, and, ultimately, poorer health outcomes. The financial burden imposed by the prior authorization process can also compel patients to forgo essential treatments or opt for less costly but less effective alternatives. These barriers to care disproportionately affect vulnerable populations, including low-income individuals, those with chronic conditions, and patients with rare diseases.

What is the impact of prior authorization on rare disease patients?

Delayed access caused by complex prior authorization processes can significantly affect individuals with rare diseases. Rare diseases are notoriously difficult to diagnose and treat, often leading to extended delays in care. On average, it takes around six years from the onset of symptoms for a patient with a rare disorder to receive an accurate diagnosis. During this time, patients frequently undergo numerous tests, misdiagnoses, and sometimes inappropriate treatments, which can lead to a loss of trust in the healthcare system. An accurate diagnosis is crucial for properly managing rare diseases, as it opens the door to specific resources and interventions that can improve clinical outcomes. Unfortunately, as time passes without answers, the disease may progress, leading to more severe or additional symptoms. Alongside the physical toll, patients and caregivers endure immense emotional and mental stress as they invest significant time, energy, and resources into finding a diagnosis. Once a diagnosis is finally obtained, the lengthy and painstaking process of prior authorization adds even more burden to the already overwhelmed patients, who are left navigating administrative hurdles while trying to access the treatments they desperately need.

A survey by the American Medical Association (AMA), which queried 1004 physicians (40% primary care and 60% specialists), revealed significant concerns about the impact of prior authorization on patient care, especially in cases of rare diseases. The findings showed that 93% of physicians reported care delays due to waiting for approval, while 82% stated that prior authorization delays can lead to treatment abandonment. 34% of respondents reported that prior authorization led to a serious adverse event, including hospitalization (24%), permanent disability, or death (8%). These statistics highlight the profound challenges posed by the prior authorization process on patient care and outcomes for rare diseases.?

While prior authorization can help to control costs, it can also lead to increased financial burdens for patients. Denials or delays in prior authorization can result in out-of-pocket expenses that patients may struggle to afford.

How can the impact of prior authorization on rare disease patients be mitigated?

It is crucial to address the challenges and negative impact of prior authorization on patients with rare diseases to ensure timely access to care. Several strategies can be implemented to improve the efficiency of the prior authorization process and reduce the delays that often affect this vulnerable group.

Streamlining the prior authorization process: Insurance providers can streamline the prior authorization process by reducing the required documentation and implementing electronic systems to expedite the review process.

Prioritizing rare disease patients: Insurance providers can prioritize prior authorization requests for patients with rare diseases, recognizing the urgent need for timely access to treatment.

Educating healthcare providers: Healthcare providers can be educated about the prior authorization process and provided with tools and resources to help them navigate the system more efficiently.

Advocacy for Patients: Patient advocacy groups can play a vital role in advocating for changes to the prior authorization process and raising awareness about the challenges faced by patients with rare diseases.

Prior authorizations can be a significant barrier to timely access to treatment for patients with rare diseases. By addressing the challenges associated with prior authorization, healthcare providers, insurers, and policymakers can work together to improve patient outcomes and ensure that individuals with rare diseases receive the care they need.

How is Medmonk assisting patients with rare diseases??

Medmonk specializes in managing therapies that treat rare diseases, bringing unparalleled expertise to the patient experience. We are connected and contracted with 98% of pharmacies, buy and bill facilities, and infusion centers nationwide. This extensive network ensures seamless collaboration and efficient solutions. Our platform seamlessly integrates with pharmacy and provider billing terminals. This simplifies the hub, copay, and patient assistance enrollment process, ensuring a smooth experience for all users in terms of both medical and pharmacy benefits.

For more information on how Medmonk’s patient assistance programs can support your products and patients, visit Medmonk's website.

Author: Ashar Hasan, R.Ph., MBA , CEO Medmonk

Healthcare Industry Leader | Strategic Innovator