What's New?

Dealing with insurance problems for genetic testing

Begin the approval process!  Do not assume your carrier will not cover testing. Even if you are denied during the approval process, you can appeal (which is how we can educate and advocate to get testing covered!). Follow the suggestions in the "What are the steps to get tested?" section below to ensure the best pre authorization process.

Appeal.   We encourage all families to appeal denials during the pre authorization phase and the claims phase (after the test has been completed).

Common reasons to appeal:  "Not medically necessary", "Out of Network" (which results in higher out of pocket expense), "Not Scientifically Proven". We have materials specific to each reason for denial and can help make the appeal process easier.

CALL SADS FOR HELP.  Contact Joanne Robinson at Joanne@sads.org or call 1-800-786-7723 for materials or questions. We can also put you in touch with other families who may have successfully appealed your same carrier.

Who should be tested?

• All patients receiving a clinical diagnosis of LQTS from their physician and who hve not had a genetic test performed previously in a research laboratory.
• Anyone who was tested in a research study and who has family members who still need to be tested. (PGxHealth will confirm the results obtained through the research study free of charge if additional family members will also be tested)
• Family members of a person with mutation-proven LQTS (This is a less expensive, limited test that confirms the presence or absence of their "family" mutation(s). This test is only done after a "family" mutation(s) is identified in one person in the family).

If a family member or other relative (index case) was tested previously in a research laboratory and now other family members/relatives are seeking confirmatory genetic testing, PGxHealth will re-test the initial family member free of charge in order to verify/confirm the research finding and then proceed with genetic testing of appropriate family members/relatives seeking testing. This approach constitutes a substantial savings to the family since the FAMILION® Family Specific Test is less expensive.

How can I get tested?

Your doctor needs to order this test just like any other medical test. We recommend that you be evaluated by an electrophysiologist or a cardiologist who can then order the test. If you need a physician, we have a list of physicians around the country.

What are the steps to get tested?

1. You or your doctor can obtain a copy of the necessary forms from the company. You and your doctor will then go over the materials, fill them out, and fax or mail to the company.  the Informed Consent and the Payment Authorization forms. Once the forms are faxed or mailed, the company will assist each patient by working with their insurance provider to pre-authorize services and determine benefit information.
   Insurance coverage will be dependant on the type of insurance that you have, as well as your specific policy. The reimbursement environment for the FAMILION tests has improved significantly during the past several years. PGxHealth is devoting increasing resources to assist patients with reimbursement services. Several insurance companies now have supportive coverage policies for the FAMILION Tests, and according to PGxHealth, most insurance companies have agreed to pay at least a portion of the cost of the test.
2. About 4-6 weeks after sending your sample, your doctor will receive the results.
3. You should then meet with your doctor to discuss these results and get a copy of the report. (You should always ask to receive copies of your ECGs, test results, etc.)
4. If your test results come back positive, it is very important to discuss having other family members tested.

Companies that test for LQTS:

What about other family members and testing?

Your doctor will be able to help you determine if other family members should be tested. In general, if your test is positive, your children, siblings, and parents should be tested, too. This means they will have an ECG and then be tested for your specific mutation. This test is less expensive than the initial test.

Based upon the test results of your close family members, others in your family (grandparents, aunts/uncles, nieces/nephews, etc.) may need to get tested, too. You should compile a medical family tree for your extended family in order to make sure that a physician evaluates everyone who might be at risk for LQTS.

If you need a form (or instructions) to do this, click here--or we can send you a packet (Joanne or 1-800-STOP SAD).