You Want What for a Genetic Marker Test?

[Craig Mattice]

A quick update. My neuro wished that I have them look into my new insurance company about paying for an Athenia genetic marker test to confirm or rule out Hereditary Spastic Paraplegia.

After waiting a month, I received a call from his office. The secretary has gotten a big run around and a lot of finger pointing between Lab Corp, and Optimum Choice/United Healthcare about paying for the test.

First off, the cost is about $7,000 of which I would have to agree in writing to pay over $1,000 out of pocket, get the test, THEN submit it for approval consideration with no guarantee insurance would pay.

Look, I'm not stupid and it is not that important to me to get this test as it is not going to improve my symptoms or progressive disability. I get the feeling it is more important in the mind of my neuro. If insurance isn't going to pay I sure the heck don't have the resources, much less the interest, to come up with the money out of pocket.

After all, my kids know all about this, the symptoms to be aware of, and the slight chance this may be genetic. I'm sure not going to expect them to get this testing, not the way this society and insurance companies exploit this knowledge. The results will follow them the rest of their lives and children's lives. To what end?

Any comments, advice, insight, experiences with this? I'm open to all.

[etchick]

I'm thinking about having this testing done. I called the insurance company and they didn't know if it was covered, but they said some genetic tests were covered but just have to be preapproved. I have a doctor's appt. next month and I'll have a script written for it and then I'll have them call the ins. co. (Why the ins. couldn't tell me of coverage is beyond me.)

The reason that I want to know is that my sister has what I have and she won't admit it. With the test results at least we would know and then she could start taking control of her own life instead of waiting for a miracle cure.

Take care,
Alisa

[olly]

hi craig.
sorry to hear you are being given such a hard time with this genetic testing.
as you said,it really does not make any difference to your current or future prognosis.
explain to your neuro about the insurance for the test and how his uncertain dx is effecting you.
but really,if he understands and giving into account your neurological history/progression he should have it down in your records as hsp.
hsp and pls is a clinical dx based on umn signs/symptoms and progression,you definatly fit the clinical picture.
if your not happy with this present neuro and he wont cooperate then i suggest you find a new neuro.
sorry i can not be of more help,i am not familiar with the medical insurance in the usa.
i hope you find a solution or some peace of mind ,you are in my thoughts.

[Craig Mattice]

Hi Caroline,

Thank you for your thoughts and comments. What's funny is this is the first time I've seen this neuro. He is in the same group I've gone to since 1999 presentation of initial symptoms. My first neuro, who was awesome, moved on to the lecture circuit, I fired my second neuro, and have been seeing their Adult NP Neuro Specialist for three years. My PCP requested I start seeing a "real" neuro MD, since my near fatal brain stem stroke this last December.

I will give this guy a chance as he is very thorough and just trying to do a very good job. I like him as a person and what can it hurt, I only go once a year unless I experience exacerbated and severe symptom onset.

I'm not worried about the insurance situation, I know how to play the game very well here in the USA.