Keratoconus often requires lifetime management, which may carry significant costs that cover different components of patient care, from treatments, such as cross-linking to medically indicated contact lenses. Educating yourself on the different treatment options, keratoconus treatment costs, and which of those are covered by insurance can help keep out of pocket costs lower.
Navigating Insurance Coverage for Keratoconus Treatments
Research has shown that people living with keratoconus could be expected to pay more than $25,000 for cost of care over their lifetime post-diagnosis. One survey even found that 46% of patients pay more than $1,000 annually for treatment costs. The majority of these costs can be attributed to specialty contact lenses used to correct the distorted vision, which are often more costly than typical soft contact lenses that are used for routine vision correction. Additionally, people with keratoconus can also pay more when visiting an eye care practitioner who specializes in keratoconus contact lens fitting.
Insurance companies typically only provide coverage for products and procedures that have received FDA approval. For example, the epithelium-off (epi-off) cross-linking procedure performed with FDA approved Photrexa drug formulations, which includes Photrexa® Viscous (riboflavin 5’-phosphate in 20% dextran ophthalmic solution) and Photrexa® (riboflavin 5’-phosphate ophthalmic solution), and the KXL® is the only FDA approved cross-linking procedure for the treatment of progressive keratoconus that is covered by insurance. To learn more about the difference between these procedures, click here.
Evaluating Keratoconus Treatment Options
While working with your doctor can help identify the best treatment option for you, FDA-approved keratoconus treatment options include:
Soft Contacts – While contacts may not treat the underlying disease, in many cases, they can improve your vision. Mild and early cases of keratoconus can be managed through traditional non-specialty soft contact lenses if the degree of corneal distortion is not too severe. Typically, in these cases, soft astigmatism correcting contact lenses are required. Depending on your insurance plan, the cost of soft contact lenses for keratoconus may not be fully covered. Daily disposables for soft contacts on average can cause $55-95 per box (8 boxes/annual supply).
Intacs® – These are thin, plastic, semi-circular rings, which are surgically inserted under the surface of the cornea. When inserted into the keratoconic cornea, they flatten the cornea, changing its shape. Intacs for the treatment of keratoconus is usually covered by major medical insurance companies. Patients should ask their eye surgeon and health insurance company for details.
Corneal Cross-linking (CXL) – CXL with Photrexa eye drops and ultra-violet light from Avedro’s KXL device is the only minimally invasive FDA approved cross-linking procedure to treat progressive keratoconus. It works by creating new collagen cross-links and leads to the stiffening of the cornea to slow the progression of the disease. Approved by the FDA in April 2016, 50 insurance carriers now cover this corneal cross-linking procedure.
Rigid Gas Permeable Contact Lenses (RGPs) – These rigid contact lenses are made of durable plastic that can transmit oxygen. Scleral lenses are gas permeable lenses with a larger diameter designed to cover the entire cornea plus a portion of the white of the eye, called the sclera. Hybrid contacts are RGPs surrounded by a soft lens lining or skirt. RGP lenses should be fit by a keratoconus specialist and the associated costs can be hundreds or even thousands of dollars. Many insurance plans do not cover RGPs based on the premise that they are ‘cosmetic’. On average these lenses can cost between $75-325 per lens (2 lenses/annual supply).
Corneal Transplant Surgery – A corneal transplant may be the only treatment option available if the cornea becomes dangerously thin and/or vision can no longer be corrected with contact lenses. During the surgery, the cornea is removed and replaced with a donor cornea. A corneal transplant is covered by most insurance policies but can cost between $13,000 and $27,000.
Understanding Your Options
Support and advocacy groups, such as the National Keratoconus Foundation and the Keratoconus Group, provide additional resources and personal insights into navigating keratoconus treatment costs and insurance coverage issues.
The National Keratoconus Foundation created a Keratoconus Insurance Reimbursement Form to help introduce and explain keratoconus to insurance companies and clarify the treatment options that are necessary to treat and manage the condition. This document, when filled out and submitted by a doctor or their office staff, may help attain reimbursement for FDA approved keratoconus treatment costs.
In addition, there are several financial assistance options for patients without health insurance, Medicare or Medicaid coverage. Check with your doctor to see if they offer financial assistance or are willing to establish a payment plan to help manage cost of care.
After receiving a keratoconus diagnosis, it’s important to work openly with your doctor and be upfront about any insurance or payment questions you may have, as they may have other options available to support your journey with keratoconus.
 NKCF presentation. Slide 16. Mayo Clinic Survey. Publication pending.
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