by Annie Kennedy on September 1, 2008 - 10:17am

QUEST Vol. 15, No. 5

The Genetic Information Nondiscrimination Act (GINA) that was recently signed into law is an extremely significant piece of legislation for families affected by muscular dystrophy and other genetic conditions. To see why, here’s part of an e-mail exchange I had with a mother with a family history of Duchenne muscular dystrophy.

Dear MDA,

I am very excited about GINA; thanks to everyone who worked to get this passed. As the mother of three daughters who are carriers of Duchenne muscular dystrophy, I have a couple of questions. First, will insurance companies be able to make this a pre-existing condition under the coverage, therefore not denying insurance coverage but not covering services relating to the pre-existing condition? Secondly, if one of my daughters were to become pregnant, can the insurance company refuse coverage on the unborn child (as a pre-existing condition)? I guess I see the insurance companies getting around this by offering the coverage, but putting DMD as a pre-existing condition on the policy (which to me is the same as denying coverage). Can you clarify this for me? Sincerely, MDA Mom

Dear MDA Mom,

The passage of GINA accomplishes many vital things:

  • Genetic information cannot be considered a pre-existing condition.
  • GINA limits the genetic information that insurance companies can access or retain once you’ve permitted access.
  • GINA protects people from being dropped or denied insurance coverage due to genetic information.
  • GINA prohibits insurance companies from charging higher premiums based on known genetic risks.

The only instance in which an insurance company can legally request genetic information is if that information is needed in order to cover a specific claim. For example, if you’re having DMD carrier testing done and are seeking insurance coverage for the cost of the testing, an insurance company may request documentation of your risk by requiring copies of the affected family member's genetic test (in order to verify that the testing is warranted). However, the insurance company is not permitted to retain that genetic information once the claim is processed and cannot increase premiums or drop coverage as a result of the genetic information.

So, to specifically address your questions about your daughters’ known carrier status:

Can their DMD carrier status be listed as a pre-existing condition, and insurance coverage denied?

No. It is now illegal to deny insurance coverage of any medical services based on your daughters’ carrier status (including any cardiac care they may receive, etc.).

Can insurance coverage on any future unborn children be refused (as a pre-existing condition)?

No. Genetic information no longer can be considered a pre-existing condition.

Since you’re evidently extremely well informed and your daughters have had carrier testing, I’m presuming you’ve been working with a genetic counselor. If that’s not the case and you’d like to speak with a genetic counselor about any of these matters, please contact your local MDA office to be connected with someone who can assist you.

Complex equipment exemption passes

The passage of GINA is an excellent example of the power individuals and organizations can have when they work together.

Another good example is the recent passage of a Medicare Improvement bill that safeguards the rights of people who use high-tech assistive equipment, such as power wheelchairs with tilt-and-recline or automatic leg elevators.

The Medicare Improvements for Patients and Providers Act (MIPPA or H.R. 6331), which withstood a presidential veto on July 16 to become law, delays both a pay reduction for Medicare physicians and the start of a national competitive bidding program for medical and assistive equipment. Of particular significance for people with neuromuscular diseases is a MIPPA provision that exempts complex rehabilitative power wheelchairs and accessories from the competitive bidding process entirely, now and in the future.

This exemption was a primary focus of MDA advocacy efforts because the “one-size-fits-all” approach of competitive bidding — in which Medicare enrollees can obtain equipment only from one or two low-bid vendors in their area — would have created hardships for those requiring specialized complex equipment that might not be carried by their designated vendors.

MDA’s Advocacy Department currently is supporting several other pieces of legislation of importance to people with muscle diseases. To learn more about these efforts, check out the MDA Advocacy Web pages ( or call your local office (800-572-1717) for information and all the advocacy tools you’ll need to speak out.

Thanks to those who made time to Take 5 — five minutes — to contact their legislators about these issues. By working together, we can ensure that more bills with the positive impact of GINA and MIPPA become law.

Annie Kennedy is MDA’s vice president for Advocacy.

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