A keratoconus diagnosis can be surprising and distressing news – not only for the person with the condition, but also for their family. Once the initial shock wears off, the reality sets in that they will be managing their condition for years to come and need to understand their treatment options and the associated costs. Studies have shown that patients living with keratoconus could be expected to pay more than $25,000 for cost of care over their lifetime post-diagnosis,[1] while one recent survey found that 46% of patients pay more than $1,000 annually for treatment costs.[2]

Before corneal cross-linking became FDA approved, patients with advanced keratoconus often turned to corneal transplant to treat their disease. This procedure currently costs between $13,000 to $27,000 and has demonstrated a high failure rate, with some reporting 73% failure in 20 years.[3] These factors indicate that even after the transplant is completed, a patient’s journey with the condition might never be over.

Now, there is renewed hope for those living with keratoconus. Since the FDA approved corneal cross-linking in April of 2016 as an option to treat progressive keratoconus, an increasing number of insurance providers, are now covering the procedure.

As patients and their families evaluate treatment options, it’s important to understand the specific details of each option, whether it is a good fit for their individual condition, or if they are receiving an FDA-approved procedure. Once a course of treatment is determined, patients should be made aware of what the procedure entails and what the recovery process will be like.

We recently sat down with Dr. Jack Parker of Parker Cornea and Dr. Joseph D. Iuorno of Commonwealth Eye Care Associates. Together, they shared their expertise on what questions patients should ask to ensure the procedure they’re receiving is FDA-approved, and what they can expect during their cross-linking procedure.

How do you find out if a physician’s office is offering FDA-approved cross-linking and if the procedure is covered by insurance?

Dr. Iuorno: Visit www.livingwithkeratoconus.com and you will find excellent, up to date information about keratoconus and cross-linking. On the Patient Resources tab, you will find additional sources of information. In addition, you can ‘Find an Expert’ near you as well as look at insurance coverage in your area.

What should patients expect on the day of their cross-linking procedure?  How long is a typical procedure?

Dr. Parker: Cross-linking is an in-office procedure that takes about an hour. We start by gently removing the epithelium and then applying a riboflavin (vitamin B2) solution to the cornea. Then, we turn on a UV light that interacts with the riboflavin solution to strengthen the collagen makeup of the patient’s cornea, which can prevent the keratoconus from progressing. A couple of days after treatment, we usually prescribe an antibiotic and inflammatory eye drop, which is used for about a week.

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[1] http://www.nkcf.org/living-keratoconus/
[2] NKCF presentation. Slide 16. Mayo Clinic Survey. Publication pending.
[3] https://www.hcup-us.ahrq.gov/reports/statbriefs/sb86.jsp