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    • #28903
      Jen Cueva
      Keymaster

      As the near year comes in, so do the increased medical costs. For me, this means a new deductible to meet. Also, my bucket load of medications can be taxing on a budget. I stagger my refills when I can, but since many are for 90 days, the costs can be horrific.

      On Friday, as I was undergoing testing downtown, my hubby posted a view outside his waiting area. But he made a comment, new year and new copays. On our way home, I told him that I was planning to discuss this in the forums.

      I have 5 specialists, so trying to stagger those visits, too. How do y’all manage the new deductibles? Could you share your tips with us all? Often, I find that I am “robbing Peter to pay Paul” as the new year starts.

    • #28904
      Colleen Steele
      Keymaster

      @jenc Cullen’s Children’s Organ Transplant Association (COTA) fund has covered co-pays since transplant. That’s from all the money from fundraising we did when he was listed. Well, we are reaching the end of the bucket now and I’m getting really worried about how we are going to manage without that help. So, I’m following this post closely because I could use some tips too. What Cullen takes post-transplant is more than double what he took as a PH patient. The cost is astronomical!

    • #28915
      Jen Cueva
      Keymaster

      Hi @colleensteele, thanks for sharing your experience and concerns. I would also be worried once this stops. I cannot begin to estimate the total medication costs post-transplant. I have seen some show handfuls post-transplant. It is like trading one type of treatment to another.

      Have you checked into copay assistance programs like Needy Meds? Here are a few more to check out, Grant, and Penn.

      Maybe you can research those, and I am certain that there are many more. Do y’all have a social worker or post-transplant case manager for Cullen? I am wondering how far post-transplant these assistance programs cater to. I would hope life-long as I know the medications are pretty much ongoing, correct? I hope that if you find out more, you can let us all know,

      NeedyMed also helps others, not only transplant patients for those who are not pre or post-transplant.

      • #28925
        Colleen Steele
        Keymaster

        Thank you so much for the information @jenc. There might be enough in COTA to cover this year but I need to start researching assistance for the future. @cdvol3gmail-com thank you for sharing the heads up regarding Medicare. That information will be helpful to our members who also use it.

    • #28919
      Carol Volckmann
      Participant

      Costs for meds, supplies are hundreds of thousands a year and I cannot imagine Colleen what Cullen’s copay is. Jen finding out funding I know has saved us! I first started out with Caring Voice – they had to close due to their pay backs from the pharmaceuticals companies. Next it was PAF, then PAN. For the last 3 years it has been The Assistance Fund and they have been covering my co-pays 100% – they really have been helpful and pleasant to deal with. My medical costs are covered by Medicare and the supplemental ins., Pemera Blue Cross/Shield of WA – who says getting older doesn’t have some benefits! For those out there who are or about to go on Medicare don’t be sucked into their “new affordable” plan that costs less. Yes, it costs less but limits who you can see and where – be careful and read the fine print.

      Good luck in finding the rights foundation that works for you. They are out there and sometimes you have to keep checking them as they reopen for your illness. It is really tough. I have re-sign up every year and make sure I know when the window is open for PH. They do have many chronic diseases they also cover.

    • #28930
      Jen Cueva
      Keymaster

      Hi @cdvol3gmail-com, thank you for sharing some important tips for those on medicare. I know my mom tends to “mess” hers up each year. She always falls for the lower-cost plan. I reminded her to read and research first. Last year, I tried to set her up an appointment with a local medicare rep, she did not go. A few years before, I did that for my Dad, and he went and has a great supplemental plan. I believe he has Cigna or Humana.

      Thanks again; I always dread the new year’s copays and deductibles.
      But, as Manny says, I am worth every penny. I am grateful for any copay assistance plans. But, as you mention, many PHriends had CVC before they stopped.

    • #28953
      Colleen Steele
      Keymaster

      I read this quote on Facebook and had to share. It’s perfect for this conversation.

      “Your health is an investment, not an expense.”

      How do we all feel when it’s put into that perspective?

    • #28987
      John Alec Briggs
      Participant

      I have to make sure I have enough taken out of my pay the previous 12 months and put in my HSA to cover my deductible, which as with all of us, likely gets met in the first month. My employer changed from a FSA to a HSA a few years ago. The FSA gave me “credit” and took out my deductible in even amounts over 12 months. Then they switched to an HSA which you must fund first. That year in between was a nightmare, since my deductible was all due at once!

      For co-pay assistance I use The Assistance Fund. They have been incredible.

    • #28988
      Carol Volckmann
      Participant

      Hi Jen, I just remembered the name of Medicare’s plan that is less expensive BUT limits you – Medicare Advanced Plan. You can only do so much and have to let go when your advice is not taken. I hope your mom will listen this year – glad to hear your dad is has good coverage. I hope your tests last Friday gave you some answers – sending you love from PNW.

      Hi John, you’re right TAF The Assistance Fund is incredibly helpful. You just have to be right on top of it as the year end for your funding runs out and you need to re-enroll as soon as possible.

      TAF has nearly A to Z coverage for chronic diseases. They are truly amazing.

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