Will my insurance try to drop me if I try to get Kalydeco?

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Enzo2311

New member
So first off, would I benefit from it? I have two Delta F508 mutations.


Would my insurance hate me for life and try to drop me if I asked for it and my doctor agreed? Who should I ask, my general doctor or my pulmonologist?


Last time I had an FEV of 106%, I just got lung X-rays and they said everything looked normal (but that was by my normal doctor, I trust my CF doctors more lol). Ill be honest I am worried that my lung function has worsened.

I made a few stupid mistakes (smoked cigs for like 6 months, I would probably smoke a pack every 2 weeks, not excessive but none the less). I also would smoke medical cannabis (I am a legal patient in my state), I smoked it for about 6 months, then about 3 months ago I became an avid edible eater instead of smoking, but then for a brief 2 weeks I smoked cannabis because i couldn't afford edibles. But now I've invested in a desktop vaporizer. So no more smoking :)

But yeah, this is all kind of off topic.

But say my FEV went down to 95% or something, how would Kalydeco help me? How high can my FEV go?

Is Kalydeco like an antibiotic where you can only use it a few times before its ineffective? Like if I got it for a few months, but my insurance said no more and they took it away, would it be ineffective if i was able to get it years later?
 
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randford

New member
No worries. Please contact PARC the Patient Assistance Resource Center (PARC) at 1-888-315-4154 Monday through Friday from 8:30 a.m. until 5:30 p.m. ET or by email at parc@cff.org. They assured me that no matter what, no patient will ever go without Kalydeco.

Randford, 52 w/CF


Enzo2311 said:
So first off, would I benefit from it? I have two Delta F508 mutations.


Would my insurance hate me for life and try to drop me if I asked for it and my doctor agreed? Who should I ask, my general doctor or my pulmonologist?


Last time I had an FEV of 106%, I just got lung X-rays and they said everything looked normal (but that was by my normal doctor, I trust my CF doctors more lol). Ill be honest I am worried that my lung function has worsened.

I made a few stupid mistakes (smoked cigs for like 6 months, I would probably smoke a pack every 2 weeks, not excessive but none the less). I also would smoke medical cannabis (I am a legal patient in my state), I smoked it for about 6 months, then about 3 months ago I became an avid edible eater instead of smoking, but then for a brief 2 weeks I smoked cannabis because i couldn't afford edibles. But now I've invested in a desktop vaporizer. So no more smoking :)

But yeah, this is all kind of off topic.

But say my FEV went down to 95% or something, how would Kalydeco help me? How high can my FEV go?

Is Kalydeco like an antibiotic where you can only use it a few times before its ineffective? Like if I got it for a few months, but my insurance said no more and they took it away, would it be ineffective if i was able to get it years later?
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believingjesus

Banned
Enzo: First of all, I think you are like me. You worry WAY too much. You have a lung function of 106%! That is absolutely wonderful! You are healthy if you have that high of lung function. I would not worry about everything like you do and I need to eat my own words as I do the same. I have to tell myself to take a deep breath and trust God. He really has it all in His hands.

Secondly Randford, I have a question as you say CFF says no patient will ever go without Kalydeco. Dank has posted that he just wants pulmozyme but he can not afford the $300 a month that he has to pay to get it with his insurance. He has contacted CFF and they refer him to the patient copay programs the different pharmaceutical companies have. It does not cover the $300 and he can't afford it. He even asked his social worker at his clinic but to no avail. I don't understand when the CFF tells you that and then Dank can't even get help with pulmozyme. I don't get it.
 
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Aboveallislove

Super Moderator
Enzo, I think rand ford missed that you have ddf508 so you would not get scripted Kalydeco and no insurance company would cover. But around June there will be a combo of drugs (kalydeco and another drug together) approved for ddf508 whoch your insurance company must cover. So there is nothing to do now but wait.
 
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randford

New member
In fairness, don't take my word for it. The comment from PARC could be arbitrary. Perhaps they meant that they'd do anything they can to provide assistance and I just understood it wrong. But that's what one rep said to me. You folks no best!

believingjesus said:
Enzo: First of all, I think you are like me. You worry WAY too much. You have a lung function of 106%! That is absolutely wonderful! You are healthy if you have that high of lung function. I would not worry about everything like you do and I need to eat my own words as I do the same. I have to tell myself to take a deep breath and trust God. He really has it all in His hands.

Secondly Randford, I have a question as you say CFF says no patient will ever go without Kalydeco. Dank has posted that he just wants pulmozyme but he can not afford the $300 a month that he has to pay to get it with his insurance. He has contacted CFF and they refer him to the patient copay programs the different pharmaceutical companies have. It does not cover the $300 and he can't afford it. He even asked his social worker at his clinic but to no avail. I don't understand when the CFF tells you that and then Dank can't even get help with pulmozyme. I don't get it.
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believingjesus

Banned
That all leads back to the issue of when you can't afford your medicines and you don't qualify for Medicare because you are not technically disabled then you don't get your much needed medicines. Your health declines because you can't afford medicines that everyone with CF needs every day. This is a despicable situation. If people with diabetes qualify for disability and people with CF don't - ???????- it is beyond me the stupidity of the SSA.
 
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ethan508

New member
The law in my state for the past 12 years has included a provision that a health insurance couldn't drop you based on your usage or diagnosis. They could only drop you for non-payment of premium or dishonesty when applying (i.e. not disclosing your drug or health history). I thought the ACA made a similar policy nationwide. Granted you still have to be able to afford the premiums and co-pays, which is a discussion for another post.
 
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believingjesus

Banned
That is true. No insurance can drop you due to the Affordable Care Act. I applaud the ACA wholeheartedly. The insurance can not drop you because of Kalydeco. What I have been referring to with my previous post that was for another thread :) was that nobody with CF should suffer because they can not afford their medicine, period. There should be a way to that everyone got their medicines. At one time when my husband worked at another employer, prescription medicines were separate from the regular medical. Our share of each prescription medicine was 20%. As has been posted on here from another member of this forum - they could not afford the $300 a month just for their pulmozyme. That is more than understandable! This person still has to eat to stay alive. The PARC obviously is not going to do anything but refer someone to a copay program but that still leaves this person with a $300 a month share for pulmozyme. He can not afford it so he can't get it. Pitiful. That is why Medicare should be given to people with CF when they have no other insurance or the insurance is so horrible that they can not afford their medicines. It does no good to gripe though as obviously the Social Security Administration does not care or understand the disease of CF. It seems you have a plan Ethan that you think will work. I hope you always have plenty of money to afford your plan and that it does actually work for you.
 
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TreasureGoddess

Member
believingjesus, I'm not sure how to contact Dank, but let him know we got help through The Assistance Fund. We don't qualify for any of the prescription help or funds that the cff points you to. We were facing pulmozyme fees of $700/month and really getting desperate. Have Dank call the assistance fund. We now pay $10 copay for Pulmozyme monthly and it's such a relief. https://online.assistfund.org/
 
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believingjesus

Banned
Wow! Thank you so much! I will try to private message him and let him know. Maybe he saw this post, idk, but I will try anyway. Thank you so much! You may have helped way more than one person too! Thank you so much!
 
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