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Stop HMO insurance companies from denying necessary medical treatment
  • Petitioned 8 year old need to see the specialist for Chiari Brain Malformation

This petition was delivered to:

8 year old need to see the specialist for Chiari Brain Malformation

Stop HMO insurance companies from denying necessary medical treatment

    1. Jennifer Solorio
    2. Petition by

      Jennifer Solorio

      Laughlin, NV

My 8 year old daughter Sarah was diagnosed with Chiari Type 1 Brain Malformation in May 2012. She had her first brain decompression surgery July 2012 in attempts to relieve the pressure on her brain and alleviate her symptoms in hopes of helping her lead a "normal" life. Her symptoms came back with a vengeance in September, just 2 short months after surgery. I have asked my insurance company to allow us to go the The Chiari Institute in Great Neck, New York and consult with specialists in the field. They have denied my pre-authorization request for the consult, stating that I should be "happy" they let me go out of network in the first place and have her first surgery at UCLA. Sarah used to have symptoms every 2 months, now she has them every day. She can't get through a day of 3rd grade without seeing the school nurse, needing medication or needing to come home due to headaches, stomach pains, nausea, or vomiting. The doctors at UCLA are stumped as to why her symptoms have returned, but the New York doctors have reviewed her MRI's and think they know the underlying problem. All I want is for the insurance to allow us to see the New York doctor, have him exam Sarah and run tests to check every aspect of her brain and the Chiari problems. From just seeing her MRI, the doctor in New York already feels that another surgery is needed to help her. Insurance will not approve even just the consult so we have decided to travel to New York and pay for whatever is needed out of pocket in attempts to get Sarah the help she needs. The actual surgery will be probably be over 100 K but we will make payments forever if it means relief for Sarah! If she does not get the relief, she will never lead a normal life. There is NO CURE for Chiari, but surgery is supposed to relieve symptoms. Sarah wants to be a brain surgeon and help people like herself, if she does not get the help she needs, she won't be able to make it through school, college, or ever hold a job if she can't get through a day without a headache that knocks her down for hours! Please help us get her to the Chiari Institute in New York. Help us change the health care system that allows the HMO insurance company to deny the needs of patients. These insurance companies should not be allowed to play God and decide what care a person gets! People deserve to have the best medical care for their issues, but insurance gets to decide what is best and most times it is mediocre care. I ask you to please sign our petition and help us show the insurance and the world that my daughter, and every individual deserves to find the best care possible for their medical needs! You can follow her story on Caring Bridge at http://www.caringbridge.org/visit/sarahbarnes1
We also have a fundraising page on Go Fund Me, located at http://www.gofundme.com/1bweu8
Thank you for taking the time to read our story and God Bless!!
ort this petition

Recent signatures

    News

    1. Grievance hearing decision

      Jennifer Solorio
      Petition Organizer

      The final decision came through... Health plan of Nevada has denied, yes denied my little girl to go to the specialist in New York :(

    2. Still waiting to hear...

      Jennifer Solorio
      Petition Organizer

      I just wanted to tell everyone thank you who continues to sign.. It's amazing to see all the support across the continents! I am hoping that I will be able to say the consult got approved soon! I should hear by Friday... In the meantime, please keep sharing, signing, and praying as Sarah remains sick almost every day .. We will still go to NY no matter what on Nov 14 th and will get answers from the doctors as to what our next steps are for her...

    3. Hearing news

      Jennifer Solorio
      Petition Organizer

      Feel like I just spoke to myself on the phone .. I had to present my case and basically got zero responses.... Then she said anybody have question? Everyone said no, and I was told answer in 5 business days.... Not really sure of anything... What I do know is my poor daughter is now vomiting because she is having a bad night and every day this is delayed she suffers more :(

    4. Travel changes...

      Jennifer Solorio
      Petition Organizer

      OK.. I have been a busy mommy this morning! The Chiari Institute is still not functional so our appointment has been reschedule for Friday, November 16th. I've called airlines, rental car, Ronald McDonald house and UCLA (I had to cancel the MRI scheduled there on the 16th) The good news is we got some flight credits for our next trip, YAY, our rental car rate is the same instead of more, and we are able to stay at RMH all 3 nights instead of having to stay in a hotel 1 night, another YAY! Now, I am staying confident that the insurance hearing today will be the biggest YAY of all and they will approve us seeing the doctor in New York! Prayer is working... please keep it coming!

    5. Grievance hearing tomorrow

      Jennifer Solorio
      Petition Organizer

      Well... The grievance hearing with the insurance company is tomorrow! Thank you all for signing and I have sent this in with the rest of my documents. Please keep spreading the word as no family, no child should have to wait on care from a doctor due to a health insurance company!

    6. Reached 250 signatures
    7. I think the Insurance company is scrambling.. I hope!

      Jennifer Solorio
      Petition Organizer

      This morning I received a call from Health Plan of Nevada, my insurance company.. The person in charge of my 2nd Level Grievance Appeal stated she "understands" that I do not want to go back to UCLA.. But that they have been researching and that The Children's Hospital of LA has pediatric doctors who "will do" surgery for basilar invagination after a Chiari Decompression surgery... She asked if maybe I was willing to go there.. Googling them not a single thing comes up as them being Chiari Specialist... and they don't take my insurance.. so why then would I go somewhere that would be pretty much the exact care we got the first time and not see someone who does ONLY Chiari, they are just "willing" to do Chiari.. Are they trying to destroy my daughters life??

    8. Reached 200 signatures
    9. Chiari Awareness Video.. what Sarah is suffering from..

      Jennifer Solorio
      Petition Organizer

      As I leave work, again, to pick Sarah up due to headaches at school, I ask that you watch this awareness video..
      http://www.youtube.com/watch?v=50nI45Qn878

    10. UA researchers engineer better treatment for brain disorder

      Jennifer Solorio
      Petition Organizer

      Just a short article on Chiari and the fight to figure out how to cure and help people who have this malformation.

      http://www.ohio.com/news/top-stories/ua-researchers-engineer-better-treatment-for-brain-disorder-1.316233#.UISa5E0zmCv.mailto

      UA researchers engineer better treatment for brain disorder - Top Stories - Ohio

      Mechanical engineers at the University of Akron are trying to improve the lives of patients with a potentially debilitating brain disorder by going with the flow. A nonprofit patient support group called Conquer Chiari recently selected the university as the site of its new national Conquer Chiari Research Center.

    11. Reached 100 signatures
    12. Consumer Advocate Office

      Jennifer Solorio
      Petition Organizer

      Whoo hoo! Step in the right direction (I pray) the Governors consumer health advocate office has opened a case for Sarah.. They will help us appeal decisions made by HPN so we can fight and WIN to get the proper medical care for her!

    13. Thank you!!

      Jennifer Solorio
      Petition Organizer

      I want to thank each and every one who has signed so far! I know it says 100 needed but how about we shoot for 1000! We have a grievance hearing with the insurance company on November 1 st and we are hoping that we can show them how badly my little girl needs to see an expert in the field.
      Please keep sharing and telling people to sign! It's time to end the rule that HMO companies have on people, it's time to start taking over the health care system and get help, the PROPER help that people need when it comes to medical needs! God Bless!

    14. Reached 50 signatures

    Supporters

    Reasons for signing

    • David Uribe RIVERVIEW, FL
      • 10 months ago

      I am going through something similar to this with my 3 year old daughter

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    • Cheryl Bostelman NAPOLEON, OH
      • over 1 year ago

      I've been told there are many groups out there that help to pay for medical expenses. I'll do some digging to see what I can find out on this in. I know of people that have used them to help pay, I'll start talking to them. No child should be denied the treatments they need by any insurance company. Our prayers are with all of you. A friend of mine had the same surgery at the same place in New York and she is doing remarkably well. I hope the same for Sarah

      REPORT THIS COMMENT:
    • Wendy Riley BULLHEAD CITY, AZ
      • over 1 year ago

      My daughter also has Chiari.

      REPORT THIS COMMENT:
    • Janice Adaway RIO RANCHO, NM
      • over 1 year ago

      Obamacare is trying to do the same thing. Denying the rights of the elderly, ill, and infermed should be a crime. The insurance companies, nor the federal goverment are physicians and should not hold the final card on someone's life, or death. It is a violation of personal privacy.

      REPORT THIS COMMENT:
    • Carol Music ROCHESTER, WA
      • over 1 year ago

      I have a very good friend who has this disease and I find it appareling that this child's future is being bounced around by an insurance company whose main concern is MONEY, not the health and well-being of a child - or anyone who needs health care that is NOT in 'their system'! When my sister was diagnosed with Leukemia in 1990 and a bone marrow transplant was her only hope, her insurance company had the 'balls' to say no because it was an 'experimental' treatment. Her dear friend had her lawyer husband send the company a very strongly worded letter about the legality of their decision and what would happen if they didn't OK the search for matching bone marrow and the transplant! Within a week, permission was given! If you haven't already, this might be a road to take! In the meantime I'll keep sweet Sarah in my prayers.

      REPORT THIS COMMENT:

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