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Thread: Obamacare and Orkambi

  1. #1
    Junior Member
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    Obamacare and Orkambi

    Hi everyone! I am turning 26 in february (I'm off parents insurance) and wanted to know if anyone is on Obamacare and can still get Orkambi? I am having a lot of success with it. Additionally, is anyone on Obamacare and getting covered for pulmozyme, enzymes, TOBI podhaler?

  2. #2
    Hi Meg,
    It will vary from State to State and policy to policy so you will just have to see what the plans cover on the marketplace. We do have an "Obamacare" policy for my daughter, but we also have a healthcare policy for her through my husbands employer. Right now our copay for specialty drugs like Orkambi and Pulmozyme on the obamacare policy is 10% the cost of the drug (only limited by the out of pocket maximum of $4000 per year). For that reason we have not filled any specialty drugs through that policy, we fill them through my husbands work policy. But next year the obamacare policy is reducing the copay to $250 per month. So you really just need to look at the plans offered in your state and see what the copay is on specialty drugs.
    Teri
    mom to
    18 year old with CF (diagnosed at 8 years)
    16 year old no CF

  3. #3
    Super Moderator
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    Hey Teri,
    Not sure if you've checked, but it sounds like Vertex is making the copay real low, like $15 per month, through it's patient's assistance program.[
    QUOTE=2005CFmom;1048269]Hi Meg,
    It will vary from State to State and policy to policy so you will just have to see what the plans cover on the marketplace. We do have an "Obamacare" policy for my daughter, but we also have a healthcare policy for her through my husbands employer. Right now our copay for specialty drugs like Orkambi and Pulmozyme on the obamacare policy is 10% the cost of the drug (only limited by the out of pocket maximum of $4000 per year). For that reason we have not filled any specialty drugs through that policy, we fill them through my husbands work policy. But next year the obamacare policy is reducing the copay to $250 per month. So you really just need to look at the plans offered in your state and see what the copay is on specialty drugs.[/QUOTE]

  4. #4
    Thanks, we do get the copay assistance for both drugs! We had switched all of the specialty drugs over to my husbands insurance plan hoping to cancel our second policy once we know everything was covered. Sadly, we were unable to get my daughter to a CF center. They just wanted her to be followed by a regular pulmonologist (because she is so healthy they didn't think there was a need). Her pediatrician had warned us that this insurance was terrible for specialty needs and recommended that we don't lose our other coverage for her. So now we get her drugs through one plan, and her medical care through a different plan.

    As a side note my husband sees a pulmonologist in his work plan because he has bronchiectasis. He asked the doctor what would you do with a CF patient, would he refer them to a CF clinic. The doctor said no, and when my husband pressed a little further he said maybe once a year he would give a referral.
    Teri
    mom to
    18 year old with CF (diagnosed at 8 years)
    16 year old no CF

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