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  • What will life look like on Trikafta?

    Posted by jenny-livingston on October 29, 2019 at 10:07 am

    I’ve recently come across multiple posts from people who are eligible for Trikafta, but are concerned that with the increase in lung function that is predicted with this drug, they’ll lose disability (and the insurance coverage that comes along with it) and they’ll have to return to the workforce.

    Now, while improvements in health and the ability to work are in themselves very good things, I understand these concerns.

    When a person has been “sick” and on disability/SSI/Medicaid, and can assume with a fair degree of certainty that, due to their declining health, they’ll remain on those programs forever, when something life-changing comes along, there are a lot of emotions to process.

    For example, I recently thought, “I’ve never planned for retirement. Maybe that’s something I should consider doing now.” That thought was immediately followed by extreme uneasiness. Do I want to reach retirement age? Absolutely! But is it a little scary to realize I haven’t made appropriate plans for the future? Of course it is!

    Trikafta brings so much hope, promise, and optimism to our community. But along with that, there are feelings of uncertainty and even fear. I think it’s okay to feel those things simultaneously. We’re entering a whole new world; it makes sense to be a little unsure of things.

    Do you also have conflicting feelings about Trikafta?

    paul-met-debbie replied 4 years, 7 months ago 6 Members · 8 Replies
  • 8 Replies
  • ziv-gudes

    November 1, 2019 at 5:14 pm

    i dont think its far more good than orkambi/symdeko… maybe a little better but far from “live changer”.
    from my experience of 3.5 years with orkambi didnt change my live…

    • jenny-livingston

      November 4, 2019 at 1:21 pm

      The data shows that this new drug is far more effective than Orkambi or Symdeko. But as we know, not everyone reacts to these (or any) drugs the same way. It’ll be so interesting to see what changes are in store for the community!

  • rossigrl1

    November 3, 2019 at 7:42 am

    Hi Jenny, I was really glad to see you wrote this piece. I started on trikafta a year ago through the drug study. My results have been “life changing” as you said. I have had the discussion with family, friends and even my cf doctors about the effect on our mental health. With the good, came some unexpected bad. I developed an anxiety and slight depression. I had prepared myself my entire life to die by middle age. In an odd way, knowing I will live into old age now has been difficult to handle. I thought I was at the end of my career, I felt like I contributed all I could to my life and made the most of it. I never intended on a future. I have been a nurse for the pst 16yrs and mainly chose jobs that were per diem and never had a 401k or any kind of retirement plan. There is more more to my story, but you hit the nail on the head when you said “cfer’s are not prepared for the future.” For those on disability, their adjustment will be even more difficult than mine. My hope is that during this transition, mental health is discussed and at each clinic visit there are Therapists available, as well as social workers to help with the changes that will absolutely happen for everyone that has the opportunity to take this medication and start a whole new life!!

    • jenny-livingston

      November 4, 2019 at 1:27 pm

      Jennifer, since originally posting this, I’ve had more conversations with friends in the CF community as well as some of my healthcare providers. The things you pointed out seem to be on everyone’s mind! Mental health is so important anyway, but these changes (even if they’re positive) will certainly bring some unique difficulties with them. I just came from NACFC and this is something that was discussed there. It’s comforting to know that these issues are being given some serious thought by both the community and those who take care of us.

  • christina-kolassa

    November 5, 2019 at 1:36 pm

    Wow, wow, wow! I never thought I’d hear such a sad sentence… “I’ve recently come across multiple posts from people who are eligible for Trikafta, but are concerned that with the increase in lung function that is predicted with this drug, they’ll lose disability.” I will pray for the folks that have these thoughts. My son, Will has been on the drug for the last year. His life is new! It will bring you out of depression and darkness into the light of love and hope. Believe it!

  • elizabeth-rogers

    November 8, 2019 at 1:01 pm

    Honestly, being on disability has kind of been a blessing in disguise for me. Going into the workforce would be extremely difficult- I have no full time work on my resume at all. I’d also probably lose my health insurance, which… Would be bad. To say the least. I’d also lose the ability to further my career as a writer- having the time and ability to work on my novel and my short works has been amazing.

  • paul-met-debbie

    November 9, 2019 at 2:02 pm

    Improving on trikafta and losing your disability would of course be good news if you are young and your energy improves so much that indeed you feel fit and healthy again and are eligible for a new job. This is how I can feel and agree with Christina’s input.

    The worries that Jenny and Elisabeth mention, are about a situation in which you are out of the system for a long time, you improve a little or moderately on the drug, enough to risk losing (part of) your disability but not enough to do a full time job or really get access to the system again. In the eyes of the economic world, you will still “have” this disease and are they going to employ you, with your official disease and a “bad” resumé? In most cases in which you are not officially fully disabled and get maximum benefit, the official disability rate will be much lower than your real (earning)capacities so there will be a considerable financial gap for you to bridge some how.

    This is a weird situation that could require special considerations by the authorities that handle disabilty benefits.

    The question of course being: is this situation “special” enough in the eyes of the authorities for such considerations to be made? There are for instance many people that get fired without blame, have to do on social wellfare or some form of minimal income support for a long time and never get into the system again because suddenly they are too old or have been unemployed for too long.

    Perhaps we should look at a more comparable situation that we know about: how are patiënts doing in this regard after a lung transplantation? This could be more or less the same: you are feeling better, but still you will not be “officially” healthy (and have some real health impairments left), you were out of a job for a long time etc. What solutions came out of this situation? Would be nice to hear from these patients about their experiences in re-entering the system and dealing with disability rules.

  • christina-kolassa

    November 12, 2019 at 11:22 am

    After reflecting on my initial response to the article, I feel the need to apologize. I understand the change will create lots of emotions. I’m just so happy with the results we’ve experienced, all I could do was focus on the good. I know how important mental health for the patient is and I’m just the mom. I don’t know what it feels like to actually have the disease. All I know is that a positive outlook has been a blessing for my kids. (I actually have 2 kids with CF!) I hope that moving forward CF patients can forge a new trail when it comes to employment and future planning. We need to let the world know we’re warriors that overcame a life-threatening challenge that seemed impossible before the development of this drug! Thank you Vertex, especially Alex Abela, Paul Negulescu, Fred Van Goor, Sabine Hadida and Mark Miller!

  • paul-met-debbie

    November 12, 2019 at 2:26 pm

    Christina, your first reaction was perfectly understandable, your second one perfectly lovable.This all belongs to life.
    Bless you and your children.

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