New Paper: Delayed Diagnosis, Health Plan Hurdles Undermine Treatment for Rare Vision Conditions

A new policy paper from the Vision Health Advocacy Coalition outlines policy solutions for more accessible, patient-centered care.

WASHINGTON, Aug. 1, 2023 /PRNewswire/ -- Patients living with a rare vision condition often lack access to a medical specialist, timely medication coverage or even an accurate diagnosis, a newly released paper from the Vision Health Advocacy Coalition explains.

About one in 10 people in the United States lives with a rare disease. For many of them, that disease is a rare vision condition. These diseases can be disruptive and debilitating, yet public awareness remains surprisingly low.

Patients with rare vision conditions face several major challenges:

Long diagnostic journeys and inadequate access to treatments. Diagnosing a rare disease can take years. Patients often have to see multiple health care providers before they receive their diagnosis. The paper argues for increased health care provider education. Providers need opportunities for greater engagement and more inclusive policy conversations about access to treatment for rare disease patients.  

Access barriers for genetic testing. Rare vision diseases tend to result from inherited genetic anomalies. But genetic testing can be expensive and may not be covered by some patients' insurance. The paper calls for insurers to cover genetic counseling as part of their overall treatment plan. Patients can gain a better understanding of genetic testing and their results by working with a genetic counselor.

Geographic, socioeconomic and racial inequities. Qualified specialists are often concentrated in major cities, leaving some patients with significant transportation challenges. Many patients and their caregivers cannot take time off work for appointments and treatments. Historically marginalized and uninsured populations have faced these and other challenges. The paper argues that insurance coverage of telehealth would allow patients to access specialists from across the country if necessary.

Utilization management. Sometimes, health plans use utilization management tactics to reduce insurers' cost, often at the expense of patient health. Utilization management can be particularly harmful for people with rare vision conditions, given the need for timely and effective treatment. The paper calls for policymakers in all states to ensure that regulatory policy encourages accessible medications for rare diseases.

Resolute policymaking and increased awareness can encourage innovation and patient access, the paper concludes.

READ: Addressing Unmet Needs for Patients with Rare Vision Conditions

STATEMENT FROM KIMBERLY SEROTA, COALITION DIRECTOR: "Patient and provider awareness, access to innovative treatments and telehealth are just a few solutions that will improve care for patients. Personalized and timely care for rare vision patients should not be rare."

The Vision Health Advocacy Coalition promotes patient-centered policies that make services, devices and life-changing treatment more accessible for people with vision conditions.

SOURCE Vision Health Advocacy Coalition