Moderator:  Last but not the least, we’re going to meet Maria. 

Male Speaker:  Oh, I’m back again.

Female Participant:  The prettiest team I've ever seen.

Male Speaker:  All right!

[Laughter]

Male Speaker:  Our group consists of Diane Kasgerski, Jimmy Card and me, Greg. And we’re introducing to you, Maria.  She is an 18-year-old who moved about five years ago with her family from a small panhandle town, from the panhandle to the Tampa Bay area.  She has a history of asthma.

00:30

So, the family is sort of familiar with healthcare, at least a little bit.  We do not have a good idea about how severe or whether she was hospitalized or not but she is familiar with healthcare.  Well, she started having some seizures, and lo and behold, she was diagnosed with a brain cancer, an unexpected brain cancer. 

So, the family sits down and the first question is what’s next?  This is done in the emergency room.  They went to Tampa General and Dr. Urban’s group got a CT scan of the head and found out brain cancer and said, “Your child has brain cancer.”  So, what do they do and what does that mean for Maria and her family?

01:02

So, they go to their primary care physician to try to get some of that information.  They have to rely a little bit on him.  This is a tight-knit Latin family and they get information from a lot of people but they’re really sort of allied with the authority figure of their primary care physician.  So this is kind of a private source of information that they get and at the same time, however, we learned that Maria is a very computer-savvy 18-year-old.  So, she has already Googled 'brain cancer'.

01:31

And she is getting a lot of information and probably a lot of misinformation.  And besides that, she has her soccer team and friends at school who maybe providing input as to what is going on.  Certainly, a lot of support for Maria.  And so, following that initial visit with the primary care doctor, they were referred to a specialist and part of this is obviously determined if they have any kind of health insurance, who’s in that network and who’s not a network provider.

02:01

Again, Maria is researching who’s got the best results for brain cancer.  So, the next decision is, where are they going to go.  Now, in the Tampa Bay area, I mentioned that they could go to the primary care provider who may refer to an oncologist at St. Joseph’s at Tampa General or the big dominating cancer center, the Lee Moffitt Cancer Center.  So, they’re going to go there and the specialist is going to give them treatment options based on what we already know.

02:28

Hopefully, they got the CT scan or the MRI or whatever they got in the Tampa General emergency room and took it with them so that’s not repeated again.  Practically speaking, it was probably repeated again.  But anyway, to get more information, the next question or the next issue the family has, the decision they have to make is based on what the specialist tells them. 

We don’t really know what kind of brain cancer she has.  Not all brain cancers are created equally and in order to know what the best treatment is for you, we need a little bit more information.  So, the next decision the family has to decide is whether they’re going to follow this individual’s recommendation.

03:03

Again, they were referred there by their primary care doctor and guided a little bit by their health plan and whatever information they need.  In this particular scenario, we decided that this youngster had to have a brain biopsy to find out exactly what kind of cancer she has.  The question is whether to do that or not.  They have to decide if they’re going to follow those recommendations, the risk of having something like that is not zero. Or do they just kind of fly by the seat of their pants which ought to be at least another option.

03:30

Maybe not a very good option but another option they have to do.  And, once a diagnosis is made, then they follow certain treatment options.  In this particular case, an 18-year-old with a brain cancer, there is information out there through the Children’s Oncology Network about outcome based on what kind of diagnosis it is, what treatment protocols.  There is some information.  But, what would happen if the age is a little different or the diagnosis is a little bit different? 

03:57

You can get little bits and pieces of outcomes maybe because the family has to make a decision based on what information they get regarding outcomes, location of the care site, if they could go Moffitt Cancer Center in Tampa or M.B. Anderson in Houston.  That’s obviously going to have an important impact on their decision and the course costs.  That’s going to be determined by what kind of healthcare they have.  I lost my train of thought.

04:27

Anyway they’ll have to make a decision about treatment now.  If it was a little bit different diagnosis, they may not have that information available to them and perhaps AHCA could provide some of that information regarding a wider range of diagnoses or at the very least, perhaps refer them with this diagnosis, you have an 18-year-old with brain cancer.  Where can I go to get the information and make those decisions?  And, then the decision tree just kind of follows the treatment based upon the diagnosis of what the treatment is.

05:01

If the doctor recommends surgery and radiation, do they want to do that?  I mean, there is a risk to surgery.  The radiation makes your hair fall out.  What about chemotherapy?  So, they need information regarding all of those things.  Now, a lot of that is going to come privately from the oncologist or provider of their health but there is a lot of information about these things on a variety of different websites.  They’re going to have to decide what’s real information, what’s information guided by their primary care doctor.

05:33

I think that’s all we have.

[Applause]