I have a clinical diagnosis of CMT

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Connect with telehealth genetic counselors ready to walk you through your diagnostic journey, a service offered through the HNF-InformedDNA® partnership.

Disclaimer: Please note that HNF does not endorse any specific genetic testing labs. Those mentioned in this breakdown do not include every genetic testing lab that has hereditary neuropathy panels.

This resource was created by Tara Jones, LCGC, member of our TRIAD Council and genetic counselor at Cedars-Sinai Medical Center. Tara would like to report that she owns stock in Invitae and Myriad Women’s Health, genetic testing companies.

I never had genetic testing

Do I Qualify for Sponsored Genetic Testing

There are currently a few labs that offer sponsored genetic testing for people who have symptoms of neuropathy.

What is sponsored testing?

Sponsored testing is FREE and does NOT get billed to insurance

Typically, the sponsor is a third-party company (in most cases a pharmaceutical company) that has a special interest in identifying more patients with a specific genetic cause. For example, the two tests available under sponsorship right now are paid for by companies that make a drug for ONE of the genetic conditions on the panel. They are paying a contracted rate for each test. It is important to know whether your personal information might be shared with the third-party company. To learn about this, you will want to ask the genetic testing lab.

What labs currently have sponsored testing?

Invitae

more info⇒

  • Must have sensory and/or motor neuropathy
  • Must be at least 18

Ambry

More Info⇒

  • Must have sensory AND motor neuropathy
  • Must be at least 18

GeneDx

more info⇒

  • Must have neuropathy
  • Must be at least 18
  • Must reside in US
  • How can I get tested?

At any point, if you decide to proceed with genetic testing, you may access our virtual CMT counseling service without a prescription by clicking on "Book A Call". This will allow you to schedule an Intro Zoom meeting (or call if preferred) with the HNF team to learn more about what matters most to you at this point during your diagnostic journey. During the call, you’ll be connected with our genetic counseling service to schedule an initial consultation and testing.

What are my other options for genetic testing?

Options

At any point, if you decide to proceed with genetic testing, you may access our virtual CMT counseling service without a prescription by clicking on “Book A Call.” This will allow you to schedule an Intro Zoom meeting (or call if preferred) with the HNF team to learn more about what matters most to you at this point during your diagnostic journey. During the call, you’ll be connected with our genetic counseling service to schedule an initial consultation and testing.

Cash pay

  • The most cost-effective labs charge between $250-1,000 for a multi-gene panel
  • You CANNOT file a claim for insurance reimbursement if you choose the cash pay route.
  • Some people choose this route because they do not want to wait longer for testing, or because they want to know ahead of time what they will be paying, so there are no surprises after the test is completed.

Insurance

  • Pay close attention to your policy’s Evidence of Coverage booklet to see if genetic testing is a covered benefitMany insurance policies only cover genetic testing for certain conditions (such as hereditary cancer risk)
  • You may need to know the CPT codes for the test (contact the lab directly)
  • Your test may only be covered under certain circumstances (such as to be used for family planning)

Prior authorization

  • Some insurance policies require that a request for the service is presented to insurance BEFORE the test is run
  • Some insurance policies WILL NOT offer prior authorization for a service not already listed in the Evidence of Coverage, which might mean that the test will NOT be covered
  • Remember, prior authorization IS NOT GUARANTEE OF PAYMENT. Once the test is run, the lab files a claim for reimbursement for the cost of the test. If it is determined that the test did not meet requirements for reimbursement (for example, if it is determined to not have been medically necessary), insurance may not provide any reimbursement to the lab. In this case, you may receive a balance bill, where you are responsible for paying the original price of what the lab charged your insurance for the test. This could be several thousands of dollars.

Financial aid

  • Many labs offer financial assistance to patients who cannot otherwise afford genetic testing
  • Aid is often based on family size and annual income; other pressing circumstances may be considered (such as a death in the family or excessive medical bills)
  • Most labs require you to choose insurance pay to be eligible for assistance
  • You may need to submit proof of income (such as W-2, pay stubs, or 1090 tax forms)
  • If you don’t have insurance, you might be able to apply for an economic hardship grant through the labLabs may be limited in the number of grants they provide each year
  • Interest-free payment plans may also be an option

How can I get tested?

At any point, if you decide to proceed with genetic testing, you may access our virtual CMT counseling service without a prescription by clicking on “Book A Call”. This will allow you to schedule an Intro Zoom meeting (or call if preferred) with the HNF team to learn more about what matters most to you at this point during your diagnostic journey. During the call, you’ll be connected with our genetic counseling service to schedule an initial consultation and testing.