Insurance FAQ

Home > FAQ > Insurance FAQ

1. How successful are claims for PXE people receiving long-term social security benefits?
Social security benefits are not determined by disease, they are determined by disability. If you have evidence of disability that meets or exceeds that required by law, you are eligible for social security benefits.  Please read Pat Manson's article titled Are You Disabled? for more information.  [March 2006]

RETURN TO TOP

2. How should I appeal the denial of my insurance claim?
Print the PXE General Bulletin and specific medical bulletins for official documentation of the effects of PXE and the care required.

The following language can be used to describe PXE International:
“PXE International is the leading world authority and repository for information on pseudoxanthoma elasticum (PXE). There are only a few ‘experts´ on PXE in the world, all of whom are advisors for PXE International. PXE International has a registry of thousands of patients, epidemiological data on 600 affected individuals, 19 labs and 52 offices worldwide.”

If you would like PXE International to send a letter after your appeal has been denied, send a request to info@pxe.org. We can personalize a letter of support about your PXE which you can use in your appeal.

For strong and effective insurance help, contact the Patient Advocate Foundation at:
help@patientadvocate.org
700 Thimble Shoals Blvd.
Suite 200
Newport News, VA 23606
Phone: (800) 532-5274
Fax: (757) 873-8999

[January 2007]

RETURN TO TOP

3. What diagnosis code should my doctor use to characterize my PXE?
In the index of the ICD9 coding manual, PXE is coded as 757.39, however it is not listed by name under this code. Code 757.39 covers a number of congenital connective tissue disorders, none of which resemble PXE. However, the code is successfully used when filing PXE-related claims with insurance companies.  [March 2006]

RETURN TO TOP

4. Is insurance coverage of Macugen for PXE a violation of federal law because the drug has not been approved for PXE?
When a manufacturer applies to the FDA for drug approval, that approval is for the product´s use for one or more specific purposes or symptoms (e.g., inflammation, nausea, glaucoma, high blood pressure, etc.). A critical component of each application is clinical test data on humans showing its effectiveness for each use sought to be approved. As with PDT, Macugen was approved for AMD only. However, clinicians are allowed to use a drug for another purpose – an off-label use. In that case, the insurance company may reimburse for use of the drug, or they may not.

Why is this approval so narrow when many believe the product is effective for a wider range of symptoms or disorders? Because each approval is no broader than the application itself. If the application seeks approval for only one use, and thus provides data supportive of only one use, that is how the product will be approved–for only that use.

Why would a manufacturer limit itself to a narrower range of uses or purposes if it believes that the product will be effective for other uses, disorders, or symptoms? The manufacturer may have decided that the market is not large enough to recoup the millions it would have to spend to complete the additional studies, so it chooses not to do them. The payback for rarer conditions such as PXE is usually less certain. Doing the second set of clinical trials may be more difficult, and thus more costly, due to fewer patients, etc.

The manufacturer is restricted in its marketing of the product to its approved use only. If the manufacturer goes beyond the approval, it may be violating the Federal Food, Drug, and Cosmetic Act. So how can individuals with PXE be legally receiving Macugen if the treatments are approved only for AMD? Because the doctor, in his or her personal medical judgment, believes that these treatments help individuals with PXE and therefore has prescribed them. This is called prescribing for an “off-label” use or for an “unapproved” purpose. It is legal and quite common.

What about insurance? Some private insurers have covered Macugen for PXE patients, even though it is an unapproved use. Why? Because those insurers have reached the same conclusion that some prescribing doctors have—that Macugen is effective for neovascularization in PXE. This, too, is legal. Remember that a private insurance policy is a contract between you, the patient, and the insurer. The insurer can cover what it deems appropriate. The more often doctors prescribe an unapproved use, the harder it becomes for the insurer to deny coverage. And the larger the insurers who cover it, the more influence they have. Medicaid and Medicare—both federal benefits programs and not insurance companies—generally cover only approved uses. Therefore, individuals with PXE may have an uphill battle to get coverage for Macugen if they have no private insurance.

So how do individuals with PXE get Macugen, or any unapproved use, covered? Be an advocate in order to convince the decision maker to approve the treatment you want reimbursed. Print articles from websites describing how the treatment could help. Show your doctors articles on the subject from PXE International. PXE International often writes letters for individuals trying to get insurance coverage for treatments.

For strong and effective insurance help, contact the Patient Advocate Foundation at:
help@patientadvocate.org
700 Thimble Shoals Blvd.
Suite 200
Newport News, VA 23606
Phone: (800) 532-5274
Fax: (757) 873-8999

[September 2006]

RETURN TO TOP

Disclaimer
These are replies to general and specific questions which have been submitted to us in the past. Our responses may not apply to any particular individual´s situation and are not a substitute for medical advice given by a physician who is familiar with the individual´s case and who has examined the patient. In addition, the responses are updated on a periodic basis but may not be current.