Kansas Governor Brownback: Please change the laws in Kansas and mandate Insurance companies to cover the cost of Jackson's lifesaving medical formula for PKU.
  • Petitioning Cigna

This petition will be delivered to:

Cigna
Kansas State Senate
Kansas State House
Kansas
Gov. Sam Brownback

Kansas Governor Brownback: Please change the laws in Kansas and mandate Insurance companies to cover the cost of Jackson's lifesaving medical formula for PKU.

    1. Jamin Tenbrink
    2. Petition by

      Jamin Tenbrink

      Lawrence, KS

Hi, this is my friend, Jackson. He was born June, 2012. Thanks to newborn screening, he was diagnosed with a genetic metabolic disorder known as PKU. Without adherence to a strict diet and his special formula, he may be at high risk for neurologic dysfunctions.

Phenylketonuria (PKU) is a life-long disorder currently without a cure. PKU is a recessive metabolic disorder, meaning both parents have to carry the gene; there is a 1 in 4 chance of these parents having a child with PKU. Those with this disorder, lack the enzyme phenylalanine hydroxylase, which is responsible for breaking down phenylalanine (PHE). This amino acid is essential for normal growth and development. Treatment consists of "diet for life." This is the standard of care for PKU. This diet consists of low-PHE/low-protein foods, along with life long use of medical formula. Without treatment or if the PKU individual has frequent abnormal phenylalanine levels for long periods of time, Phenylalanine can be neurotoxic to the individual which will bring them at high risk of suffering from brain and central nervous system damage, mental retardation, seizures, hyperactivity, eczema, along with behavioral and social issues. Thankfully with the newborn screening, most cases of PKU are caught early enough to prevent this damage. 

His diet consists of a new medical formula called Periflex Junior and he has to drink it everyday FOR THE REST OF HIS LIFE. Currently, his formula costs $990 a month through the home health agency and if he goes without it, the neurotoxic effects will start to take place.  Due to the new Affordable Care Act, insurance companies are going to try to stop covering on some things such as Periflex Junior formula so they can lower their insurance costs to stay competitive with the Affordable Care Act. 

His family just received news that his insurance company, Cigna, decided they would no longer cover the formula since he is over a year old.  The Collins family cannot afford to pay for the lifesaving formula without the help from insurance.  Currently in Kansas, there is no mandated insurance coverage for PKU products such as Periflex Junior due to HB 2255 which was passed in 1997.  These laws need to be changed and Cigna health care needs to be held responsible.  Ironically, if his mother orders the formula directly from the company that makes Periflex, insurance will not cover it even though it is considerably cheaper ($300/month) than to go thru the home health agency.  

Please help me fight against this family's insurance company, Cigna, and the laws in Kansas.  Something needs to change and it needs to change now!  His parents are doing everything they can and now its our turn to fight back.  His life shouldn't have to change due to this insurance company bullying and from regressive Kansas' laws. States such as Nebraska and Texas mandate that insurance companies cover the formula.  Let's help make Kansas one of those states!  We appreciate your support!

 

Recent signatures

    News

    1. Making progress...A letter from Jessica Collins

      Jamin Tenbrink
      Petition Organizer

      Today at 12:15 we received the amazing news that we were successful in our appeal for Jackson's medical beverage to be covered. The CMO that approved the appeal told our senior benefit specialist, "It is clear that medical beverages are required for the treatment of PKU." It truly is a struggle sometimes everyday to get others to understand what PKU is and how important his diet is and it's relationship to his quality of life. There will be some investigation as to why the provider of the medical beverage up charges the price so much, and I'm hopeful they can get this amount decreased. Although we succeeded with this appeal there are many families that have not been as lucky and still have to fight for their children's medical food/beverage everyday. I am still going to pursue getting Kansas to mandate insurance companies to cover all PKUers and newborn screening conditions that require medical food/beverage. I have all the hope in the world that this too will be successful. Thank you

    2. Status Update

      Jamin Tenbrink
      Petition Organizer

      Jackson Taking Action Against PKU - by Jessica Collins
      Just got off the phone with the benefits specialist for my employer....so he first tells me in all his 15 years of working there he has never seen such a detailed and well-written and informative appeal!!! This PKU momma obviously means serious business! The good news is, my employer is self-funded meaning they don't have to follow state laws, and they basically regulate what is and isn't covered, so in our case this is good since Kansas doesn't mandate insurance companies to cover medical food and beverage....(which is on my to do list to get that changed!). He said to stay optimistic and positive and hopefully the CMO will approve this, as there is no reason why it shouldn't be covered!!! It's a required treatment. We will get another update this Friday on the appeal status. Please continue to say prayers for our little man and all the others that need medical food and beverage coverage to treat their disorders. Thank you

    3. Good News!!

      Jamin Tenbrink
      Petition Organizer
      Jackson | Journal | CaringBridge

      This is why it is a PKU family's goal to continue to raise awareness and bring it to the lawmakers attention. There is approximately 20,000 individuals with PKU. Without medical foods our children and other PKUers would not be able to live the life and have the quality of life they have now.

    4. The IMPORTANCE of PKU FORMULA

      Jamin Tenbrink
      Petition Organizer

      My PKU life - Kevin Alexander
      http://www.youtube.com/watch?v=W2ipJAIiBc8

      My PKU Life

      My name is Kevin Alexander, I'm 33 years old, and I have PKU, also known as Phenylketonuria. This is my story. (If you'd like to connect with me I have a PKU Facebook page: http://www.facebook.com/pkulife.tv)

    5. Reached 2,000 signatures
    6. Take a moment to watch

      Jamin Tenbrink
      Petition Organizer
      PK-Who: PKU Documentary

      PK-Who is a documentary about individuals living with (PKU) Phenylketonuria and their challenges. This documentary seeks to raise awareness about the dire consequences these individuals face if this genetic disorder is left untreated.

    7. Facebook page

      Jamin Tenbrink
      Petition Organizer

      The family has started a Facebook page to raise awareness for PKU
      https://www.facebook.com/JacksonPKU

      Jackson Taking Action Against PKU

      Jackson Taking Action Against PKU. 335 likes. Jackson is a child of God. He was born on June 10, 2012 and 5 days later he was diagnosed with Phenylketonuria (PKU). PKU is 1 out of the 29 conditions that is screened through newborn testing.

    8. Great Article

      Jamin Tenbrink
      Petition Organizer
      Medical Food Coverage and Legislation

      For many families, their greatest monthly expense is the cost of formula used for tube feeding or specialized oral feeding. Children with a wide range of digestive diseases, metabolic conditions, allergic or inflammatory disorders, swallowing problems, craniofacial abnormalities, and other diseases or conditions require these specialized formulas as their full or partial source of nutrition.

    9. Update - formula cost and

      Jamin Tenbrink
      Petition Organizer

      The Collins family has been able to get the formula by buying directly from the manufacturer for the cost of $300/month rather that through the home health agency for the cost of $990/month! While this is great news, this doesn't change the fact that Kansas does not mandate medical food coverage by heath insurance companies. Taking care of a child with PKU is costly and time consuming. For example:

      Frequent lab draws and doctor visits
      High cost of alternative, low Phenylketonuria foods - Box of Noodles $10.99, Rice $21.49, Bag of cheese sauce mix $32.00
      Lifelong formula - now $300/month
      Constant measuring and calculating food

      The list goes on and on. Thankfully, the family had another interview today with a local news station which will air tomorrow (3/6) on WIBW news. I have also been told that a couple local radio stations have also been reporting the story! The petition is gaining momentum again and we are thankful for everyone's support.

    10. Reached 1,500 signatures
    11. First News Interview!

      Jamin Tenbrink
      Petition Organizer
      Topeka parents concerned about toddler's insurance

      By Kevin Boughton Published: Tuesday, March 4, 2014, 9:20 am A Topeka family is wondering how they will pay for necessary food for their son after they learned their insurance won't cover it. Jessica Collins' son Jackson has a rare condition called "PKU": Phenklketonuria.

    12. KSNT - Channel 27

      Jamin Tenbrink
      Petition Organizer

      The Collins family is doing an interview today with the local news station in Topeka, KSNT-27! I'm not sure when the story will air...we will keep you updated. Thanks for your support!

    13. PKU video for Rare Disease day which is today, Feb. 28th!!

      Jamin Tenbrink
      Petition Organizer

      This is a great video regarding PKU and a wonderful little girl named Morgan who lives in Detroit. Just like Jackson, Morgan and her family are dealing with the same issues as the Collins family.
      http://m.clickondetroit.com/news/Rare-Disease-Day-Morgan-Doetsch-battles-PKU/-/16732600/24741084/-/l0rlmaz/-/index.html

    14. First donation to promote this petition!

      Jamin Tenbrink
      Petition Organizer

      We've had our first donation to sponsor an ad to show this petition to more potential supporters. We are beyond grateful for the support we've seen over the last two days. Thanks for your donation and we hope there are more to come in the future!

    15. 1000 supporters in less than 24 hours!

      Jamin Tenbrink
      Petition Organizer

      Amazing! We are overwhelmed with everyone's support....from the USA to all over the world! I have contacted Ellen DeGeneres, George Takei, Huffington Post, Lawrence Journal World, Kansas City Star, Topeka Capital-Journal, Mix 93.3, Representative Paul Davis and Representative Tom Sloan from Kansas. I am anxious waiting to hear from SOMEONE...ANYONE! Please continue to spread the word and I hope we can make a difference not only in Kansas, but across the country.

    16. Reached 1,000 signatures
    17. Wow, 500 supporters in less than 12 hours!

      Jamin Tenbrink
      Petition Organizer

      We are so grateful for your support. I've contacted the Lawrence Journal World, the Kansas City Star, and the Topeka Capital-Journal for some media coverage. Please share and do the same for this beautiful family!

    18. Reached 500 signatures

    Supporters

    Reasons for signing

    • Amber Miliote FORT MILL, SC
      • about 1 month ago

      I also have a son with PKU and our state, South Carolina does not pay for medical food.

      REPORT THIS COMMENT:
    • Ken Smith LENEXA, KS
      • about 1 month ago

      Because i know other kids who have this, I guess they could have the dr hospitalize them every couple of weeks so they could get there prescription in the hospital and cost the insurance co 100% more. Brownback should and would sign it ,if one of his own kids were involved. I t may take marching with hundreds for the message to be responded to.

      REPORT THIS COMMENT:
    • Rayanne Dowell LAWRENCE, KS
      • 3 months ago

      I am so disappointed in Kansas and how they are treating children and families with PKU. We have 2 children diagnosed with PKU at birth.

      REPORT THIS COMMENT:
    • Patrick Elifritz PANAMA, OK
      • 4 months ago

      Shame on you for hesitating to consider covering his care.

      REPORT THIS COMMENT:
    • Deborah Jasper LAKELAND, FL
      • 6 months ago

      My son has PKU.

      REPORT THIS COMMENT:

    Develop your own tools to win.

    Use the Change.org API to develop your own organizing tools. Find out how to get started.