J in AZ, the surgery is approved for adults & has been shown to be successful in
children younger than her. IHC is biding time to when she can be recissed from
the policy or she dies. Either is preferrable than actually paying for the
procedure. & think for a moment how you would feel loosing your stomach
completely & living on a liquid diet. It might be a relatively "normal" life,
but it would be very difficult. Fiscal Hawk, the private company has
incentive to make money, whatever the cost. Letting a customer die is in their
own profit interest. The government has no profit motivation, & techincally
should be motivated to care for the people. Not how it always happens, but the
argument that a company's best interest is treating someone is naive.
Hi Gentrie.My daughter, Sarah, also has gastroparesis. She is 23 years
old and has gone through everything you have. She was due to graduate college
in May but she had to come home in January because she was so sick. She also
hasn't eaten or drunk anything for 6 months and is on a feeding tube 24/7.Fortunately for us our insurance company didn't argue about the gastric pacer
surgery and so she had that almost three months ago. It hasn't really had a lot
of effect yet, but we know that it can take up to a year to really start to
work, so we are trying to be patient and pray each day that she will get a break
from this crippling disease.Hang in there Gentrie, you can make it and you
can get better. Perhaps your parents could get your story out to the media,
perhaps through television. Just tell your story and hopefully shame the
insurance company into allowing you this very much needed surgery. Sue them if
necessary. What they are doing is inhumane and shouldn't be allowed to happen.
We are praying for you.
Good luck Gentrie; I hope the gastric stimulator works well for you! I have
gastroparesis too and live on a feeding tube. I have had trouble with
insurance companies not wanting to pay for what I need too. You may want to
check out the Oley foundation online. It is a great resource with ideas,
donations, and a forum where you can connect with other teens who have the same
disease. It has helped me a lot. Best wishes.
My sister-in-law, a mother to five children, has been suffering from
gastroparesis for the last 3 1/2 years, and in that time has suffered
incessantly not only with the disorder and all that that includes (nausea,
stomach pain, vomiting, painful bowels, fatigue, weight loss, weekly ER trips
for rehydration, feeding tubes, etc) but also with a plethora of misdiagnoses of
bulimia and clinical depression to outright telling her that it's all in her
head. It wasn't until the family met someone by chance with gastroparesis that
she was able to finally get a correct diagnosis. Because it took almost 3 years
for her to be correctly diagnosed, though, her body had been literally slowing
dying and shutting down and has just made it that much more difficult to treat,
which doctors are still trying to figure out how to do exactly. My point is
that I am grateful for this article shedding some light on this disorder for
anyone out there who may be in the same position. I am also grateful for the
helpful information given from some of the comments and intend to do more
Here is a way to explain what Gastroparesis is like...Remember the
last time you had the stomach flu... now picture being told, at the height of
that flu, that it will never go away.Imagine having to avoid fat,
fiber, fresh fruits and vegetables because you cannot digest them and fearing
every bite of food will cause nausea and pain for days.The National
Institute of Health estimated in 2004 that 5 million Americans suffer from
Gastroparesis and an article on medscape from 2008 places the number at 4% of
the population or 1 out of every 25 people being affected in one way or
another.Awareness is extremely low and there are few treatments
available and the Medical Experts have concluded that this girl's best chance at
any quality of life is a Gastric Pacemaker, they are not asking for our
validation but our help.
I suffer from Gastroparesis and have for over 20 years so I think that I can
help shed a little light on the issue at hand.For those that think
that a gastric stimulator (aka-gastric pacemaker) is a dangerous thing, it is
not. Wires are placed in the stomach and led to a small pacer located under the
skin. The pacer sends small electric currents to the muscles of the stomach to
make them contract so that the stomach can grind the food then pass it along to
the small intestine for digestion. Unlike having a stomach removed, a Gastric
Pacemaker is a reversable proceedure.Gastroparesis is incurable, but
a pacer can greatly reduce nausea and lead to a better quality of life and
control of symptoms.My heart goes out to this girl and her family
and I hope that she gets the treatment she needs and deserves.
I have a 4 year old daughter that's missing half of her intestines. She has
fought her entire life, on and off of TPN, tube feeds, and with 4 bowel
surgeries. At this point, we are being told by many doctors that there is
nothing more to do for her, to just keep up her TPN and wait for it to destroy
her liver. As her parents, we refuse to take this as an answer-- she is OUR
daughter, not a statistic.We have had to change the way we make
decisions the last year or so. It is no longer simply what is best for her, but
what can we live with if the worst happens.Until you have been a
parent, having to make the hardest decisions of your life in regards to your
child, please don't judge. This family is doing what they feel is best for
THEIR daughter. You haven't walked in their shoes or felt their heartache. You
don't have all of the information about Gentrie. Let them make the decisions
they feel is best for her and support them in it.
Given the options Gentrie has been offered so far, I earnestly hope that she and
her family will defy convention and carefully consider non-traditional-medicine
alternatives, if they haven't already. Such alternatives typically are not as
lucrative for the traditional health-care establishment (which not surprisingly
will scoff at them), but they have turned things around for some people, Parker
Jensen for example.
To the person who says nehimomma is delusional--let me clue you in:nehimomma actually has a CLUE what it is like to have a child with a life
threatening illness--and to have to battle with insurance companies (and UT
legislative members) who would rather people and children die than pay for
preventive or lower cost treatments and/or therapies (surgeries, services) and
invest in the "long term"--even if their numbers look bigger up-front.Is the government perfect or better? Who knows. But, I can attest to this:
they pay for treatments in Medicaid that most other insurance companies REFUSE
to pay for--in order to keep babies and children alive. Most insurance companies
either deny coverage for certain treatments (i.e. this story), or "cap" how much
a family can cost them. Nevermind the likely "behind the door" convincing of
employers to get rid of the more costly to insure employees (which usually can't
be proven)--thus helping to create the mess of a medical system we have in this
country.So--realize that when you call someone delusional--you truly
have NO idea what they have gone through--and you have NOT!!!!!
No doctor would choose TPN over a feeding tube...she's on the TPN because she's
not tolerating the feeding tube....so taking out just the stomach doesn't solve
the situation....they have to get her intestines working period...which the
gastric pacemaker can do.I realize most people have no understanding
of what this stuff costs....but tube feeding stuff is expensive, TPN is even
more expensive. In the long run it is cheaper for the insurance company to pay
for the surgery than it is the TPN. I promise she has already run up over that
amount in medical bills. Again TPN itself is over a $1000 a day. Why would an
insurance company want to keep paying for that? unless they are ignorant.
For anyone who has never been faced with there insurance company deciding they
are doctors and choosing who they will keep alive...has a lot of nerve saying it
just costs too much. Her parents pay there premiums...this isn't some never
heard of treatment...it's actually used all the time...but less often in
children.As for the person that suggests removing her stomach...If
that was going to work...they don't typically remove the stomach any longer in
these situations...they put a feeding tube in. What the gastric pacemaker
does...is also stimulate her intestines to work. Currently they are not...which
is why she is on TPN
Hang in there Gentrie may you feel better soon you are beautiful and some how
some way you will get well Hang on Help will come.
J in AZ~ You obviously haven't seen Gentrie in her current
conditions...she's dying as it is. If you can hook her up to the pacemaker, a
cheaper surgery than the removal of the stomach, and enable her to eat and live
a completely normal life...wouldn't that be the most optimal outcome. Doctors
have had %100 success with underaged children~that doesn't sound like death is
an option buddy. Maybe go spend some time volunteering because you sound pretty
shallow hearted my friend. Give heed to Pertti Felin's council~You'd do a lot
better in life.
Gentrie I also have Gastroparesis I hope they are able to find a way for you to
feel better quickly! I've experienced the constant nausea and throwing
everything up and hope you feel better soon!
It costs $300,000 because it is experimental and high risk. There is another
surgical option. A total removal of the stomach could be performed and the girl
could live a healthier life on a high calorie liquid diet. A professor in the
BYU Zoology department in the 1970's had that surgery and was able to live a
healthy and full life.Insurance, even health insurance, is about
managing risk and containing risk, not paying through the nose for any and all
high-risk, experimental, treatments in the hope that it might do the patient
What a country you live in - that allows her citizens to languish and suffer in
this way instead of helping them out.
My check is on it's way.
nehimomma,With a government health plan, instead of an insurance
company saying an expensive procedure is not covered, you would have a
government bureaucrat saying that if you want the surgery you'll have to fly to
India to get it. Just because the government is running it doesn't magically
make it free.
@nehimomma You sound delirious. The situation for Gentry is so sad. If my
position was swapped with hers I'm sure my reaction would be emotional as well.
The truth is modern medicine cannot have al the answers nor we should we expect
our insurance companies or Obamacare or whatever to solve these things for us.
Gentry is in God's hands now and he will do his will with her whether she lives
or dies. I hope that Gentry and her family kind find the peace that only He can
give. Faith in an insurer, government or any medical proceedure is
misplaced. God is in control. He will take care of Gentry. All we can do is pray
and offer what assistance we can to help the family during their time of need.
Does anyone else find it crazy that this procedure costs $300,000.00?
There is no suing of an insurance company because they paid for a procedure and
it killed the girl..that is insane. They don't want to pay for it...cause
they'd rather see her die...cause that's cheaper for them. And yes
I'm sure the pacemaker could kill her...more likely it wouldn't work...but
promise you you cannot live on TPN for years and years...that will absolutely
kill you...they already know that. Your liver will fail..and then you
die...period! Let alone the chance of dying with all the line infections you
end up having.
@Shirly No that's not what J in AZ is saying. Read the post again. The reason why IHC doesn't cover this type of procedure is because it is too
new, too experimental and too risky for them offer. If she dies in their care
now they could be held liable. If she dies with the experimental proceedure they
could be held liable. Damned if they do and damned if they don't.The
bright side is they can be held accountable for their actions if there is any
malpractice. When Obamacare rules there will be no one to litigate or to hold
accountable when things go wrong medically. The all-powerful government machine
is much colder and harsher than a private company will ever be.
But if she's 14, and it works for people over 18, it seems like a minimal risk.
It's not like she's 4 or 5 years old. Let's give this girl a chance by donating
money, and our prayers to soften the hearts of the decision makers at IHC.
I hope Gentrie gets better. I can't imagine having an illness like that.
However, many of these comments are ridiculous. Do you really think that
Obamacare (i.e. Medicaid and Medicare) would pay for unproven, non-FDA approved
procedures that likely will not help her? Do you know how many drugs and
clinical trials show "promising" results? The reason there are mulitple stages
for clinical trials is because many of them end up failing, and hurting people
in the long run. Fen-Phen is a recent classic example. It is possible tht this
surgery could really help her and save costs in the long run for the insurance
company, just like there are MANY experimental procedures that might help MANY
other people with varying illnesses, but statistically, people would be worse
off if they went through with them. IHC has the power to eventually make an
exception for her in this case. Under Obamacare, there would be no chance for
her to have this exception.
The pacemaker is her ONLY HOPE for getting better!!! It may work or it may not
but it is worth the try! She has no other options. So you are saying don't put
the pacemaker in... and increase her chances of dying??? Doesn't make sense to
The key word in this whole story is that the surgery is still experimental. That
means it is not proven. Clinical studies can be promising right up to the point
where all of the patients get sicker and then they are often worse off than they
would have been without the experimental procedure. The gastric stimulator
surgery is currently being treated as a humanitarian investigational device use
by the FDA. That means that it is very unproven and can be considered to have a
high risk of failure. Don't blame IHC for not being willing to pay for a
procedure that just might kill the girl.
nehimomma,It's in an insurance company's best interest to serve its
customers as well as possible- otherwise it will go out of business.The government has no such incentive to serve anyone.
And for those complaining about obama...so you flip out over the health care
reform and make it as hard as humanly possible to get done....go on and on
spouting about it's a free market...let the free market dictate.well
guess what..in a free market insurance companies let the sick people die. If
you really want that to stop happening...then we would have to go to a
government run insurance plan. You cannot have it both ways.It
amazes me the trust put into a insurance company...
What is sad about this entire thing...is it costs A LOT of money to be on TPN
(which is how she is being fed). TPN costs about $1000 a DAY. Let alone all
the other supplies, tubing ect that comes with it and anyone with a line inside
there body..especially being fed TPN is a very high risk for a line
infection...that would immediately land them inpatient...most often in the ICU
which would cost more than the procedure....AND anyone who has a complete shut
down of there gut...often translocates bacteria into there bloodstream...which
then attaches to the line and so on. Not to mention...you will eventually have
your liver fail when you are on permanent TPN.All of this costs more
than that one procedure...which would put her back to as most normal as you can
Re: Phantom. Yes. Of course I will do "my part" & make my contribution, as all
readers should. The point I was trying to make is that it seems like time is of
the essence. It will obviously take much more time for these small contributions
to be made, rather than 1-2 corporations covering the expense themselves.
Glad to hear IHC, a "non-profit" organization, is denying paying badly needed
surgey for a customer that has paid their premiums in good faith. Her family
shouldn't have to pay $200-300 K while IHC fat cats pull in 7 figure salaries &
IHC gets away with not paying taxes. IHC should be taken ot task.
If enough people sent a dollar, or five or ten--whatever they could afford--we
could make this happen for her with little hardship to anyone. Where can we
send money, Doug??
Instead of hoping for the funds to be raised by some big company or someone
else, why not just give what you can. Go to the website in the article and
donate $5-10. Don't wait for someone else to do it.
How frustrating it must be to be in this girl's shoes, as well as her family's
shoes. My thoughts and prayers will be with you today. I certainly
hope that IHC can make a good decision on what they will do for this girl. I
know that several have complained about IHC in the previous comments, but after
having been on an IHC health plan and then moving out of state and being without
it....well, IHC is better than other things out there. I hope it's just a matter
of education on the part of the executive making the decision.
Instead of hoping the funds get raised, make a donation.Go to the site in
the article and share your resources to help this family.
If it were me as her father I would send a letter to OBama telling him to put up
or shut up. Here is a classic case of someone in need and his expensive
insurance plan ... is worthless.
Heart wrenching story. Let's hope that the necessary funds can be raised for the
surgery. Hang in there, Gentrie! With all the companies and corporations in
Utah, one would think at least one of them could cover the expense with the snap
of a finger.
Why can't some big hot shot from around here get in touch with Miley Cirus and
talk to her PR people about helping out. Obviously this girl is a fan and Cyrus
needs good PR. Or Obama can quit golfing and vacationing and donate the money
that we don't have to fork over as tax payers for his travel.... TOO bad it is
not a fund raiser for athletics or for hurricane relief hey? Dang people just
Obama care would not even think about paying for a procedure like this. It
would only cover what was on the already approved list and I'm sure this
procedure would not be on the list. Gentrie's family would be left to fund it
themselves anyway.Friends in Denmark say the Dr.'s ask them if they
want to know what should be done or what the government plan will cover. Think
it will be different here? If so, I have a really nice bridge to sell to you.
This young lady is my niece. In the last six months I have seen her go from the
laughing, teasing, couldn't hold still, literally living and loving her life
teenager to last week; when we had to literally hold her up just long enough for
family pictures at her brothers wedding. I live in St. George and every time I
go back down I wonder if I will see her to talk, laugh and hug each other one
more time. I know our economics are very hard, but if everyone that reads about
Gentrie could give a little or a lot to her website we would be so humbled and
grateful, after all she is only 14 years old. Think about what you would do if
she were your daughter, Granddaughter, niece, friend, etc. We could be her
insurance company for right now. I love you Gen.
@Texor:Is there some reason you couldn't do the research yourself?
Since Obama is still trying to convince the naysayers of his passed Obamacare,
he could use Gentrie as a real-life example of how she could have her surgery
without a $100-200k out-of-pocket outlay. If a proponenet of Obamacare could
set me straight on this, it could convince me to go along with the passed
reform. If not, it's what I suspected - another boondoggle. Gentrie, I hope
you can have your surgery soon.
So proud of IHC for doing the right thing. Maybe this is how they get touted as
holding down medical costs in Utah.
Thank you, Doug, for letting us know about Gentrie.
Gastroparesis is sometimes a side effect of diabetes. So sorry Gentrie!
Insurance companies never pay for things which might save money over the
longterm because they are betting you won't still be one of their customers
longterm. Our thoughts and prayers to you and your family.
And why don't Utahns want insurance reform? Every single one of you out there
who complain about health care reform legislation had better dig deeply into
your pockets to help out this beautiful young woman!