Tuesday, April 2, 2013

An Open Letter to Comcast CEO Brian Roberts and NBCU CEO Steve Burke




Dear Mr. Roberts and Mr. Burke,

My name is Lou Melgarejo and I am a Comcast/NBCU employee. I have what I consider to be my dream job. I am a married father of three. I am first and foremost a family man. My oldest daughter is a beautiful, energetic, happy and incredibly intelligent 7 year old girl named Bianca. Bianca happens to be autistic.

The current autism diagnosis rate according to the CDC is 1 in 88 while a recent study suggests that the number could be even higher at 1 in 50 or 2% of school aged children being autistic. Our daughter Bianca is one of those 88, but we like to refer to her as being "1 in a million".

I am writing you this letter on World Autism Awareness Day so that I may enlighten you about our healthcare plan as it pertains to autism therapies. I do not believe for one second that the policy as it stands was created intentionally to harm or discriminate against autistic children. I believe that it was created with a lack of awareness. Hopefully this letter will make you more aware. I apologize for reaching out to you in this public forum, but calls and emails through proper channels proved futile.

I am requesting that Comcast amend its self-funded healthcare plan to include coverage of Applied Behavioral Analysis (ABA). As of my last conversation with Accolade on 04/01/2013, ABA therapy is denied because it is considered to be "experimental". This is simply not supported by science. ABA is the most commonly prescribed evidence-based treatment for Autism Spectrum Disorder with DECADES of research demonstrating the effectiveness of ABA for autism.

Bianca was diagnosed at the age of 4, but we knew from the time she was about 13 months that something was different with Bianca. She stopped responding to her name, she was very late to crawl and walk; she became engrossed in her toys, lost her words, stopped making eye-contact with us and isolated herself from other kids. We knew what the diagnosis was going to be before we even scheduled the appointment. We were realists, and we were prepared.

What we were not prepared for, was dealing with our health insurance. Based off of our difficulties in carrying a baby to term and my wife being high risk, our experience with the insurance coverage through Comcast was exceptional. Having our babies was an expensive undertaking, yet our insurance was there to support us and lighten the financial burden every step of the way. We remain very grateful for that coverage because without it we could have never realized our dream of starting a family.

That is why it seemed so strange to us that a company that had already invested so much financially and medically in our daughter would not want to protect that investment by providing her all the tools she would need to reach her full potential.

3 years ago our pediatric specialist prescribed ABA therapy for our daughter, deeming it "Medically Necessary". Unfortunately, as stated earlier, Comcast does not cover ABA. Even though we live in a state in which autism insurance reform has been around for years, Comcast does not have to follow the mandate because self-funded plans follow federal and not state mandates. There is no federal mandate requiring coverage of ABA therapy... yet.

I hope that you never have to experience a situation in which you are told your child needs a particular service and you cannot provide it for them. As a man, it pulls me apart from the very fibers of my being. I was raised to provide for my family. The out of pocket cost of ABA will not allow me to provide the therapy for my daughter. Imagine if you could how that would make you feel. Especially when you read studies like the Lovaas 1987 UCLA study that showed 47% of children in their ABA group achieved a normal IQ versus 2% of the children in the control group. Imagine how you would feel as you watch 32 states pass meaningful autism health insurance legislation forcing fully-funded plans to cover their employees for ABA therapy, yet you are penalized for having a self-funded plan.  Imagine how hopeless you feel when you see that the United States Surgeon General has said that the efficacy of applied behavioral  methods has been demonstrated for more than 30 years while the US Office of Personnel Management review panel concluded that there was sufficient evidence to categorize ABA therapy as a medical therapy... yet you are told by your insurance company that you are being denied because it is experimental. As a parent of an autistic child, that mixed message is both depressing and confusing.

The lack of coverage has forced me to look for work elsewhere in the hopes that I can get my little girl the help her doctor says is "medically necessary". Do you know that it was even suggested at one point that my wife and I get divorced because it would mean better coverage for my daughter by "cheating" the system? I have ZERO desire to leave my job. I have ZERO desire to divorce my wife. It is depressing to think that I could be forced into either position over something like better healthcare coverage for my daughter.

I write to you both in the hopes that you understand the anguish and stress that this situation lends itself to. I ask you both as fathers and family men to please address this coverage gap in the Comcast/NBCU healthcare package. I encourage you to show the world that Comcast and NBCU are world class operations by joining other companies that have already voluntarily elected meaningful autism benefits. Companies such as: Microsoft, Cisco, Deloitte, Intel, Capitol One, Wells Fargo, DTE Energy, Yahoo, Time Warner, Home Depot and White Castle.

It won't even break the bank. Claims data from across the country indicate health insurance premiums rise about 32 cents per member per month. Wouldn't you chip in 32 cents if it meant children would have a better shot at reaching their full potential? I know I would.

I invite you to spend just a few hours with my daughter. See for yourself how smart she is, how close she is to blossoming, how great a kid she is. Bianca is pure potential. She just needs a little help. She needs the therapies that have been prescribed to her.

In the NBCUniversal Values, Integrity is listed first. Under the "Integrity" heading it reads, "Do the right thing and treat people right".

Please treat autistic children right and amend our healthcare plan to include meaningful autism benefits. I can arrange for a team of experts in the field to meet with the proper representatives. Show me that Comcast Cares. You gentlemen have the power to positively affect change for what must be THOUSANDS of employees and their families by simply changing the current policy.

Sincerely,

Lou Melgarejo

PS: I really do love my job and my coworkers. Please don't fire me.
The face of pure potential.

31 comments:

  1. This comment has been removed by the author.

    ReplyDelete
  2. AWEsome. Let's send it to T-mobile next, okay?

    ReplyDelete
    Replies
    1. Well... the hope is that if we can get Comcast to do the right thing that the other ERISA healthcare plans fall in line.

      Meaningful autism benefits should be touted proudly by the companies that offer them. It is such a good PR move to do when you are not MANDATED to do so. When you do it because that is what is right, it shows that your organization has integrity and character, it attracts better people to work for you, it makes for happier employees. It is a win/win.

      Delete
    2. I LOVE this post! Both my husband's and my employer's plans are self-funded as well. His work won't even listen to us, even though in our state anything a self-funded plan would not cover would be reimbursed by the state. My son needs ABA as well and we are looking at alternatives until there's (hopefully) federal mandate for coverage. Good luck!

      Delete
    3. *APPLAUSE* I love this letter, kudos to you for being brave enough write it and send it to your employers! You have a beautiful family and a beautiful autistic daughter, and your right all she needs is a little help. Your in my thoughts and prayers!
      My brother , who is now 30, was diagnosed with autism in the early 80's. I back when we were little things would have been different, more awareness, more knowledge for therapies and therapies that were more accessible. That's why now I'm am trying to get the word out so more children can get the help they need. Some they can have a chance to be all they can be.
      Whatever you do, keep your head up and stay strong. I for one will continue to pass along your videos and anything else I can to everyone I can.

      Delete
  3. Lou, I commend you for taking a stand for your amazing little girl!! She is so blessed to have such an amazing advocate as a dad! You can add Newell Rubbermaid to the list of Fortune 500 self-funded companies who previously denied their employees ABA coverage for their children with autism until this year. My name is Kathleen Leard & my husband works for Newell. I co-authored legislation for critical insurance coverage in the state of GA- a bill that would require a mandate to cover ABA. When it did not pass legislation in 2009, I made it my personal mission to lobby my husband's company to get coverage for my son. I am happy to report that effective January of this year, Newell Rubbermaid made the RIGHT choice to offer this critical coverage for our son. I hope that Comcast/Xfinity will follow suit- you must be persistent!! You said it best- your daughter IS the face of pure potential!! ROCK ON LOU!!

    ReplyDelete
    Replies
    1. THANK YOU NEWELL RUBBERMAID!!! And THANK YOU Kathleen for your advocacy as well!

      Delete
  4. Petsmart also needs a copy of your letter!

    ReplyDelete
  5. Lou,
    My daughter is now 14 years old and had it not been for ABA (which was privately funded) she would not be in her public school with a 3.8 GPA. This year, she was a cheerleader and when her name was announced at a pep rally, every student in the school stood up and chanted her name! ABA gave my daughter back her potential! ABA is the only autism therapy that has imperical data to support its effectiveness. Keep fighting Lou! Our kids deserve necessary and appropriate services!

    ReplyDelete
    Replies
    1. Agreed! Thank you for sharing and I am so happy to hear of your daughter's success and acceptance from her peers.

      Best wishes to you and your family!

      Delete
  6. Brave and beautiful - way to go.

    ReplyDelete
  7. I am overwhelmed and I commend you for taking a stand and writing this letter.I believe if more people followed your lead and spoke up and spoke out, things would change. THERE IS STRENGTH in numbers. Kudos!!!

    ReplyDelete
    Replies
    1. Thank you Regina. You are absolutely right. I hope that other Comcast/NBCU employees will now feel free to speak up.

      Delete
  8. Good for you. I work for Time Warner and am grateful we have coverage but the coverage stops at age 9. Don't we all wish our problems went away at 9 yrs old. I've shared your story on my FB page as well via CARD. Keep up the good work and always remember from one parent to another..... YOU'RE DOING A GOOD JOB! God Bless.

    ReplyDelete
    Replies
    1. Thank you so much for the support! My family is extremely grateful.

      Delete
  9. Very well said, Lou. It just doesn't seem right that some children are denied coverage while others are covered simply because of where a parent happens to be employed. I hope that Comcast does the right thing and join all those other self-insured companies who voluntarily agreed to provide coverage for behavioral treatments.
    Claudia Pringles
    Montpelier, Vermont

    ReplyDelete
  10. I already told you on FB but my husbands company Claire's (the ear piercing place!) does not offer it and will flat out deny any claim related to a 299 Autism diagnosis. I hope it works out!

    ReplyDelete
    Replies
    1. Thank you. I appreciate it and hope that Claire's and the other ERISA plans out there start to cover these therapies soon.

      Delete
  11. Awesome letter. I think you are correct, there is a lack of awareness. My son is 10 and has autism too. It bothers me that there seems to be more money spent by corporations for prevention instead of money spent to provide services for the children and adults already here. I hope you get to keep your job….

    ReplyDelete
    Replies
    1. So far so good Pamela. I appreciate the support very much!

      Delete
  12. Awesome letter, Lou! The tide is turning. I know, it is not fast enough for our kids who are growing up while we spend our energy fighting our own employers, our own states, our own country, for necessary treatments. Companies are being sued. Judges are on our side. Florida Medicaid was ordered to cover ABA for anyone under 21 who needs it. Other states will follow. We need to keep pushing it & we need more parents to stand up & fight!

    ReplyDelete
    Replies
    1. Thank you Tammie. I believe Michigan also had a similar situation happen. It is well past the time for us to stand up and be counted.

      Delete
  13. I hope that you will be able to get the insurance coverage for your daughter and that the awareness raises for ABA so that other children can have this advantage in life. Thank you for taking a step forward and helping your daughter and others for the future.

    ReplyDelete
  14. Hope this link gives you a little additional ammunition:

    http://www.marketwatch.com/story/updated-federal-court-strikes-down-blue-cross-of-michigans-denial-of-applied-behavior-analysis-therapy-to-children-with-autism-2013-04-01

    ReplyDelete
  15. As a mother to an amazing 6 year old autistic son, i feel your pains. my husband and I had to start our own business in our to get tax breaks to help towards our son's therapy. I commend you for standing up! Cant wait to share this with my autistic circle of parents. *kuddos!!*

    ReplyDelete
    Replies
    1. It never ceases to amaze me that the people who truly need the path of least resistance often experience the most.

      Thanks for the kind words and for sharing!

      Delete
  16. Lou, I read & shared this back in April when you first wrote it...just stumbled across it again today.

    Maybe you've written a followup, but I haven't read it, so what ended up happening? Did they change their policy?

    ReplyDelete
    Replies
    1. I have not written a follow-up, but I have heard back from NBCU. Steve Burke has seen the letter and they are currently in the process of reviewing changes to their benefits package for 2014. On the list of things they are reviewing, is improved autism benefits.

      Unfortunately, despite repeated attempts to get them to invite my friends at Autism Speaks to come in and give a presentation and show them the data so that they can have an easier time with the decision, they have yet to ask for said meeting.

      I am keeping my fingers crossed that they do the right thing on their own, but I am not too optimistic.

      Delete