LQTS Genetic Testing and Ongoing Care

Hi Friends!

Does anyone have experience receiving care at Stanford, Cedar Sinai, or UCLA? If so, would you be willing to comment on your patient care experience? Possibly recommend a physician?

Also, has anyone run into issues getting insurance to pay for genetic testing? If so, do you have any tips?

Thanks in advance! 



by ar_vin - 2021-03-21 20:04:34

I don't know about Standford.

But my one experience at Stanford was awful. Stay away.

I was originally admitted and "observed" for two days. Poor nursing staff, less than stellar physicians, terrible overall experience.

There's a lot of hype around the Stanford name but I think you'd be better off at UCLA, UCSF or elsewhere.



Re: Stanford

by JayKay - 2021-03-22 11:20:10

Thanks ar_vin!
I've been having a lot of trouble simply booking an appointment at Stanford after having been referred. They keep telling me they'll call back with next steps, but never do. I was getting the impression that the office might be disorganized.

Glad to know the actual care may not be worth the wait. Maybe I'll go back to square one and see about getting referred to UCLA or elsewhere.
Thanks again!

Hope this helps

by Pinkit94 - 2021-03-22 12:36:11

If you think you have a genetic condition start by collecting all of your medical info and contact the md's/clinics directly. As far as getting testing approved by the insurance, try to call your insurance to see what they cover, under what conditions, and which labs/companies they prefer. If the insurance is not paying at all. Ask the doctors about what lab/company are they using, contact the company, most companies have ways to lower the costs or have the testing done for free. Alternatively, most of these companies have ongoing clinical trials, see if you can qualify for one. 

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