Quantcast
Utah

Illness prevents teen from being able to eat

Comments

Return To Article
  • metisophia
    June 22, 2010 1:06 a.m.

    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!

  • Truthseeker
    June 22, 2010 1:33 a.m.

    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.

  • srw
    June 22, 2010 5:52 a.m.

    Thank you, Doug, for letting us know about Gentrie.

  • Florwood
    June 22, 2010 6:58 a.m.

    So proud of IHC for doing the right thing. Maybe this is how they get touted as holding down medical costs in Utah.

  • texor
    June 22, 2010 8:11 a.m.

    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.

  • shamrock
    June 22, 2010 8:30 a.m.

    @Texor:

    Is there some reason you couldn't do the research yourself?

  • roselady
    June 22, 2010 8:34 a.m.

    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.

  • Humm??
    June 22, 2010 10:11 a.m.

    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.

  • johntakarl
    June 22, 2010 11:51 a.m.

    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 help......

  • So. Cal Reader
    June 22, 2010 11:52 a.m.

    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.

  • patriot
    June 22, 2010 11:59 a.m.

    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.

  • phantom
    June 22, 2010 12:34 p.m.

    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.

  • Silence Dogood
    June 22, 2010 12:39 p.m.

    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.

  • phantom
    June 22, 2010 12:40 p.m.

    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.

  • EEJ
    June 22, 2010 12:45 p.m.

    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??

  • 42istheanswer
    June 22, 2010 1:15 p.m.

    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.

  • So. Cal Reader
    June 22, 2010 2:23 p.m.

    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.

  • nehimomma
    June 22, 2010 2:56 p.m.

    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 get.

  • nehimomma
    June 22, 2010 3:02 p.m.

    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...

  • Fiscal Hawk
    June 22, 2010 4:19 p.m.

    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.

  • J in AZ
    June 22, 2010 4:30 p.m.

    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.

  • Shirly
    June 22, 2010 4:43 p.m.

    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 me!

  • drumboy12
    June 22, 2010 4:53 p.m.

    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.

  • katamb-midvale
    June 22, 2010 5:03 p.m.

    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.

  • KtotheL
    June 22, 2010 5:07 p.m.

    @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.

  • nehimomma
    June 22, 2010 5:51 p.m.

    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.

  • marilives
    June 22, 2010 6:01 p.m.

    Does anyone else find it crazy that this procedure costs $300,000.00?

  • KtotheL
    June 22, 2010 7:12 p.m.

    @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.

  • MadAir
    June 22, 2010 7:16 p.m.

    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.

  • BostonTerry
    June 22, 2010 7:33 p.m.

    My check is on it's way.

  • Pertti Felin
    June 22, 2010 7:51 p.m.

    What a country you live in - that allows her citizens to languish and suffer in this way instead of helping them out.

  • J in AZ
    June 22, 2010 7:51 p.m.

    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 some good.

  • ArmyBrat
    June 22, 2010 8:34 p.m.

    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!

  • Charles12niner
    June 22, 2010 9:12 p.m.

    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.

  • Suz
    June 22, 2010 11:22 p.m.

    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.

  • nehimomma
    June 22, 2010 11:38 p.m.

    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

  • nehimomma
    June 22, 2010 11:42 p.m.

    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.

  • formerUT
    June 22, 2010 11:56 p.m.

    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!!!!!

  • anti-liar
    June 23, 2010 5:11 a.m.

    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.

  • Necia
    June 23, 2010 11:32 a.m.

    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.

  • Gastroparesis Awareness Advocate
    June 23, 2010 3:42 p.m.

    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.

  • Gastroparesis Awareness Advocate
    June 23, 2010 4:30 p.m.

    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.

  • Jessie03
    June 24, 2010 11:22 p.m.

    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 research myself.

  • beachbel
    June 25, 2010 11:04 a.m.

    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.

  • Claire6034
    June 29, 2010 8:36 a.m.

    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.

  • 42istheanswer
    June 29, 2010 9:19 a.m.

    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.