CXL Insurance Update & Tips

Through the efforts of patient advocates, industry, physician groups and NKCF, there are now more than 49 plans representing 120 million lives that offer cross-linking for treatment of progressive KC as a covered health benefit. And the number of plans that offer reimbursement for CXL is growing rapidly.

For an up-to-date list of plans, visit Living with Keratoconus.

Don’t depend on your doctor’s office staff to know the most up-to-date information about your insurance benefits. While staffs are familiar with most health plans, policy changes concerning CXL are taking place constantly. What was not a covered service three months ago may now be included as a benefit.

You must act as your own advocate.

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Here are some pointers if you are considering CXL:

Step 1: Understand what treatment your doctor has recommended.

If your doctor uses a non-approved device or does not use the epi-off protocol, you will probably not be covered for the service. Many policies include language like “FDA-approved protocol” in their medical policy. One Oregon health plan details what it will reimburse “. . . considers corneal collagen cross-linking (CXL) medically necessary for a patient with a diagnosis of keratoconus, and the requested procedure is for epithelium-off photochemical collagen cross-linkage using riboflavin and ultraviolet A, and the requested procedure is not for epithelium-on collagen cross-linkage. This is considered experimental and investigational for all indications.” (Moda Health).

Also, if your doctor recommends combined procedures like Intacs and CXL, or CXL and PRK (photorefractive keratectomy, a vision correction procedure), or some combination of CXL plus another treatment, you will likely not be covered and will need to pay out-of-pocket.

Step 2: Look at your health plan’s medical policy about cross-linking.

You can contact their customer help line, your employer’s benefits representative, or go directly to your plan’s website and review their Medical Policy or Summary of Benefits section. Type in the keyword “keratoconus” or “crosslinking” and see if your plan has published a statement on the procedure. The policy may have information about what additional tests or documentation are necessary. Several medical policies state that the plan will cover the cost of CXL for treatment of progressive keratoconus and then list specific testing that needs to be submitted to document disease progression. It may mean that you need to have the same test performed a few months apart in order to show a steepening of the cornea or some other indication of disease progression. Without submitting the requested test results, a claim is likely to be denied.

With this knowledge, your doctor’s office can help by making sure the appropriate testing is performed and documented, and perhaps getting a prior authorization. Pre-approval by your health plan does not assure that the treatment will be paid, but you will be in a better position to appeal if your doctor has informed them that CXL is medically necessary for your care.

    • If CXL is a covered benefit in your health insurance plan, and your doctor is a member of their provider network, you should not be expected to pay ‘in advance’ or out-of-pocket for the treatment.
    • If CXL is a covered benefit, your doctor cannot ask you to pay the difference between what he or she bills and what is reimbursed by the health plan. That should be a discussion your doctor has with the insurance company and not with you.
    • If CXL is not a covered benefit in your health plan, your doctor may ask you to pay for the treatment in advance, or may ask you to sign an ABN (Advanced Beneficiary Notice of Noncoverage) that says you understand that the insurance plan may not cover the service, and you will be responsible for payment.

All health plans have appeal processes when claims are denied. NKCF cannot intervene in your individual appeal for payment or reimbursement, but several patients have reported success after first being denied payment.

If you find that your insurance company has a negative policy (will not cover CXL) or does not have a written policy, or if they still consider CXL an experimental procedure, contact [email protected]. We can send an advocacy letter to the medical directors of your health plan informing them that CXL is the standard of care for the treatment of progressive KC and asking them to include CXL as a covered service.