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.
“Addressing Unmet Needs for Patients with Rare Vision Conditions,” a new policy paper from the Vision Health Advocacy Coalition, pinpoints common barriers and potential policy solutions.
There are 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 and undergo several diagnostic assessments before they receive their diagnosis.
- Health care provider education is an important step forward. Providers should also have opportunities for greater engagement and more inclusive policy conversations about access to treatment in the rare disease space.
Access barriers for genetic testing.
- Rare diseases, including rare vision diseases, tend to result from inherited genetic anomalies. More than 70,000 genetic tests exist, but patient and provider awareness of the options is still limited. Genetic testing can also be expensive and may not be covered by insurance for some patients.
- Rare vision patients need their 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 located in major cities, leaving some patients in rural areas with significant transportation challenges. Many patients and their caregivers cannot afford the travel costs or cannot take time off work for appointments and treatments. Historically marginalized and uninsured populations have faced these and other challenges.
- Some geographic and socioeconomic challenges can now be alleviated through telehealth. With insurance coverage of telehealth, patients could access specialists from across the country if necessary.
- Sometimes, health plans use utilization management tactics to reduce insurers’ cost, often at the expense of patient health. Utilization management can be particularly harmful to people with rare vision conditions, given the need for timely and effective treatment.
- Several state legislatures have recently passed laws to curb prior authorization and step therapy requirements. Policymakers in all states must ensure that regulatory policy encourages accessible medications for rare diseases.
Resolute policymaking and increased awareness can encourage innovation and patient access. Unmet needs for people with rare vision conditions are multifaceted and widespread, but solutions are within reach.
Learn more by reading “Addressing Unmet Needs for Patients with Rare Vision Conditions.”