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Doctor: Mr. Mendez?
Mr. Mendez: Hello doctor. How's Andy?
He's just fine. He's in a stable condition and is resting now.
Good, good. I thought he could have died after falling down the stairs in the house.
You know, this past year he's been getting more and more accidents and I thought this one could have been fatal.
I know what you're going to say doctor...he has Huntington's disease?
Yes, he has juvenile Huntington's disease. A nurse did a blood test on him just recently.
He is experiencing some of the earlier symptoms of it...I'm so sorry.
I was hoping you wouldn't say that. You know his mother also had Huntington's disease and...she died a few years ago.
I was expecting he wouldn't inherit it but (sigh) now that only means he has maybe a couple of years to live and that's just not a..that's just not a good way for a boy to live.
I understand.
He is experiencing some of the earlier symptoms such as abnormal voluntary movement, slow speech, awkward gait.
We can do everything we can to make sure he is as comfortable as possible through the course of this disease.
Usually the disease last anywhere between 10-15 years.
So we can do whatever we can in the meantime to make him more comfortable because eventually he will become more dependent on you.
Oh doctor, I just..I just love Andy so much..I..I wish he could have been tested when he was born.
Right, unfortunately Texas doesn't test Huntington's disease for newborns.
It's really such a shame because not really any other state seem to test on Huntington's disease.
I really..it really affects a lot of people. In the United States alone it affect 30,000 people and 200,000 are at risk.
So patients like Andy really only have a 50/50 chance of having this horrible dominant genetic disorder.
That doesn't make any sense! Texas..Texas tests for all these different diseases. H.D. doesn't make any difference.
You know, I just..I just hope children like Andy have a better possibility of life or maybe just living a better life makes a difference.
I just wish I could have know before and I could have been more prepared.
Mr. Mendez, I know that this is a really hard time for you but would you consider going with me to visit Senator Remington?
I'm sure she would have a sympathetic ear to our cause in order to, maybe make this into a law to have people who have a history of Huntington's disease, to have their children tested.
And this could save a lot of parents, families a lot of pain to help them prepare for it at the very least.
Would you be willing to do something like that?
Well, sure but what do we have to do to convince her?
Well, I am her mother's neurologist so I'm sure that she would be able to meet with me. And we can talk with her, maybe see if we can make this thing into a law.
Yeah, well that sounds very good and I'm just glad I can help.
Insurance Agent: Mr. Mendez, I was told that you wanted to meet with me today.
Well yeah, I just wanted to see how my insurance company would cover my medical bills now that my son has been recently diagnosed with Huntington's disease.
Okay. Well I see you have been covered from Blue Cross/Blue Shield for 18 years. And since Andy's symptoms have not started until recently, services cannot be denied or canceled due to the GINA Act.
Which protects him because we cannot discriminate against people will a higher risk due to genetic family history. So that's the good news.
Will the cost of my insurance increase?
Well since the test results are positive, you are going to have to expect your premium to rise at least up to $439 a month. That is when your policy is up for renewal.
Will Andy be able to receive some money? I just, just I know that in his later stages of his disease he will be completely be dependent on me.
Another option would be the Long Term Care Insurance. This option would assist with the cost of nursing homes and the cost of assisted living in home care.
It can be quite expensive. It runs at about $190 dollars a day and the average for the in home health aid runs about $21 a day.
Medicare will not pay for it since Andy's case is not really acute. But this option does give you the choice of a new provider since you would be considered a private pay consumer.
Now with the TLC insurance plan you need to be aware the annual cost is about $2,200.
As I said before, Medicare will not pay for it unless you become improvised while being enrolled in TLC or in certain cases you need to fulfill some requirements.
Medicare will also also cover the in home care and you also need to be aware the facilities you choose, the options will be limited.
So if you do consider this plan, which I definitely recommend for Andy at this point, typically people purchase it before the testing is complete.
So if you want to be sure Andy is taken care of, that is something I would definitely recommend.
Senator Remington, it's so great to see you again.
It's great to see you too!
Here is Mr. Mendez, the man I have been telling you about.
Hi, nice to meet you.
Nice to meet you too.
Please have seat.
Thank you.
I'm really sorry to hear about Andy. I have heard that you wanted to add Huntington's disease to the list of disorders we screen newborns for.
Well yeah, we believe that even though Huntington's disease is considered to be a rare disease, it affects every race equally.
And I feel that in the last few years, Huntington's disease have had even more cases presented.
Usually patients who have Huntington's disease tend to have more risks towards accidents because, unfortunately, they have involuntary movements, mental deterioration,
and this really leaves them dependent on their caregivers. And this is what we are seeing with Mr. Mendez and Andy here.
I've already seen it in Andy's case and it's just terrible. It's like losing a part of Andy every time.
I just know that in his later stages of his life he will just be completely dependent on me.
Can y'all tell me more about this disease? I thought that symptoms for Huntington's disease only showed up later in the adult life.
Usually this is the case. It happens between the ages of 30-50, middle-aged people. But one of the things that we see on occasion is it does happen in kids as well.
And with Andy's case, this happens with a defect on Chromosome 4. What this does is Chromosome 4 is really responsible for the great part of the central nervous system.
And if that is mutated at all it can really lead to some destructive symptoms.
One of the things that I was thinking of doing is we could at least have a law that is required for doctors to mention that the child does have the 50/50 risk (for families who are expecting) and could be affected.
Eventually, maybe the law could upgrade to where it's required for all people who have a history of Huntington's disease have their newborns screened.
That way it would cost way less of the taxpayers money. It's not testing everyone because it is a relatively rare genetic disorder. It only happens whenever it occurs in families who already have it.
So I think that would be a good place to start if there were to be a law in place.
I agree. I think that this is a good choice for the citizen's of Texas because, it is true that not all families, the majorities of families, won't have the disease in their history
and may not want their tax money spent on testing newborns then having the history. Especially if they do not need the test for the disease.
That leaves the money available to be used on other things that affect more of the majority of the population. Which will make people happy, which is what we need to consider.
Senator, what if you think we did a PSA featuring Mr. Mendez's story? I think that the people would really listen and advocate this all if we made this all about Andy.
I think that's a great idea! Not only will it give insight to a family that's affected with Huntington's disease,
but it also shows an even rarer case of a juvenile being affected which is really important considering we are adding the disease to the newborn screening list possibly. So I think that's something definitely y'all should work on.
Alright. Well I just wanted to thank you Senator for letting us visit with you and we'll get right on that so thank you for your time.
No problem! It was a pleasure talking to y'all.
Hi. My name is Carlos Mendez and I am the father of a son with Huntington's disease.
My wife died two years ago from Huntington's disease. After our son Andy was born, she started to show some of the signs of the disease, such as small involuntary movements, general clumsiness...
We didn't know anything about it at first, but we noticed it began to increase over time. We discovered she would have..I mean we discovered she would have Huntington's disease.
It became a shock to my wife when she found out. She never would have thought of having it. The genetics did not favor her.
Once we knew she had it, we knew that Andy would a 50/50 chance of also having it.
He wasn't tested when he was born because it was not one of diseases that test Texas required for it's newborns to be tested for. When I found out that Andy had it, it hit me really hard.
Caring for my wife for the last few years was hard, but with the hospice it became a lot easier by the fact my wife knew her fate many years before.
How can I help my son deal with the fact he's going to die earlier than anyone else?
I wish I had more time to prepare for this, I wish my wife and I knew so that I could get her advice before she passed away.
There is a bill written that requires Huntington's disease blood test in newborns who have a family history of the disease.
Please call, write your local congressman, to let them know you want this bill to be passed.
It will help more families like mine to prepare for the illness and cherish the time they have left with your child.
They are more than the disease.