How are you doing on Trikafta? Benefits? Side-Effects?

I'm tagging a few members like @helen1000 @tinaesims @mtyler @cayenne @mdf, who have experience with Trikafta or are considering it, so they can share their experiences and connect.

@ckscoville, it's encouraging to hear that Trikafta is working so well for you with little to no side effects. How long have you been on it? You mentioned the cost. Do you know if the manufacturer of Trikafta offers a financial assistance program?

I am doing well on Trikafta. I’ve had no side effects. I’m blessed! I think it’s literally keeping me alive. Nobody has any idea of my CF unless I tell them. I’m on Medicare and Aetna. I met my 1100 deductible with Pulmozyme in January. Now everything is covered with no deductible. I was told that at this time Trikafta doesn’t have an assistance program.

@tinaesims It’s my understanding that Vertex doesn’t have an assistance program for Medicare or Medicaid recipients. Before the out-of-pocket expenses were capped at a lower rate for Medicare recipients, programs like Healthwell were often a lifesaver for financial help. They were for me.

For the benefit of anyone reading this who is not (or not yet) on Medicare, I should have noted that Foundations like Healthwell, the Patient Advocate Foundation for Co-Pay Relief, and The Assistance Fund can all be lifesavers by helping people tackle the enormous costs of drugs like Trikafta. At one point in my own CF journey before Medicare capped out-of-pocket expenses at a lower figure, while I was battling a nasty lung infection, the combined co-pays for just two of my drugs were over $2,200 a month! As I noted above, a grant from Healthwell, helped me tremendously.

Unfortunately my insurance company does not approve me for Trikafta. Vertex representative says that my CF mutation is not qualified for Trikafta. Is there any other way I can get the generic drug from other manufacturer?
My CF director is trying to put me into a trial for a modulator therapy.

Helen, I hope your CF director is successful. If you do get into a trial, please give us an update. I know that alternatives to Trikafta and other CF drugs are being explored all the time. While Trikafta has had the most "PR", it's not the only drug out there.

Helen, what's your current routine in treating your CF symptoms -- breathing treatments, medications, etc. -- in the absence of any modulators?

HI Pug, I do airway clearance three times a day. As my cavity was closed/ sputum has been negative for 12 months, I am completely off antibiotics for 1 month now. Thanks for asking.

This is a clinical Trial for Trikfata for non CF bronchiectasis patient. They will give you 4 weeks medication to see whether it helps with BE. It needs a CF mutation or Sweat test 30-60.

I wanted to share this with you. Check it out: https://www.withpower.com/go/v4gre34v

I’m Stevo 73 years old living in Monticello, MN and was diagnosed when I was 45. I was tested because of chronic pneumonia and infertility. I am on a Medicare Advantage plan and they have paid for Trikafta and Pulmozyme without any problems.

I injured my shoulder and can no longer use my vest treatment. My doctor and respiratory therapist have recommended I get a Valero system but my Medicaid Advantage program twice has refused to pay despite the fact that it’s use in the hospital improved lungs.

Has anyone else had a similar experience?