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    • #21561

      Hello wonderful forum members,

      Please excuse the brevity of my posts lately as I am still thoroughly enjoying life in Hawaii. The days are long because we’re up so early with the sun, but they’re also filled with beautiful scenery, spectacular colours between the contrast of lush green mountains and aqua blue waters, plus incredible seafood and coffee. I’ll post some photos below, but in the meantime, I wanted to share a resource with you that I’ve been hearing lots about.

      Has anyone heard of or used the Heathwell Foundation? Their website can be found here:  https://www.healthwellfoundation.org/

      I’ve been hearing of people using this resource to help with the cost of Ofev, particularly for those in the US. I wanted to share this in case it might be helpful for folks needing financial assistance for their anti-fibrotic medications. If you’ve used this foundation, or have any feedback to share, please let our forums community know. The more information we have, the better.

      Charlene.

       

    • #21586
      Bill Turnage
      Participant

      Hi Charlene,

      First of all, thank you so much for all of the valuable information and comments you and others make available for those of us dealing with IPF. Your Hawaii pictures are beautiful and I’m happy you’re able to visit.
      Regarding Healthwell Foundation, I have found it to be a valuable resource for getting my OFEV prescription covered. Healthwell approved a grant (that needs to be renewed annually) that helps cover my co-payment on the monthly prescription, while my secondary insurance pays the remainder. Without the grant, there is no way I could afford the prescription.
      I found their people to be very easy to work with in getting the grant application completed. I was able to do the whole process over the phone, just by answering a few questions.
      I’m sure everyone’s situation is different, but I definitely would recommend giving them a try. Their website is http://www.HealthWellFoundation.org and their phone number is 1-800-675-8416. I hope this is helpful for anyone needing this kind of help.
      One note about OFEV – my doctor started me with a 150mg dose, but I kept having recurring diarrhea. He changed the dosage to 100mg recently and the diarrhea has decreased significantly.
      I was diagnosed with IPF in July 2018. In May of this year, my pulmonary doctor determined that I was, unfortunately, in the rapid decline stage. When I asked him how much time he thought I had, he said likely six months to a year, so I’m taking everything one day at a time. Each morning I wake up I give thanks to God and tell myself “I’m still here.” I think we all agree that IPF is one nasty disease. Keep up the good work you are doing. Thank you.

      Bill Turnage
      Warrensburg, Mo.

      • #21606

        Hi Bill,

        Thank you so much for your kind words – it truly is a privilege to be part of such a special online community. Though, I certainly wish none of us were connected as a result this cruel lung disease.

        Thank you for your kind words about Hawaii – I am so glad I was able to come here, and will cherish the memories of this trip for a lifetime. It has been incredible 🙂

        Your experience with the Healthwell Foundation sounds similar to Jacki’s, and I’m so glad to hear that it has been a positive experience for you. I’m sure others will appreciate hearing how the foundation has assisted you. I’ve heard lots of people tolerating the 100mg of Ofev better than the 150, seems to be the “magical” dosage change that many need to eliminate the GI issues. Hang in there, and continue being grateful for each day – it does help! Feel free to write anytime.

        Sincerely,
        Charlene.

    • #21584
      Jacki Baum
      Participant

      Hey, I use Healthwell Foundation to help pay for my Ofev.  I live in Aiken, South Carolina and my Drs are at MUSC in Charleston.  The cost of Ofev is $10, 583.44 a month and my drug plan pays $10,054.27. Healthwell pays the remaining $529.17.  I applied in December, 2018 for this year, I have used this foundation for 2 1/2 years.  I have a grant for $9,000 which more than covers the difference.  They do ask for financial information, there is a cap on your income. However, it was my income, not our joint income which helps.

    • #21605

      Hi Jacki,

      Thanks for writing and sharing your personal experience with Healthwell Foundation. I haven’t used it, so any personal experience is appreciated. I’m so glad they seem to have helped you, and that you got the financial assistance quickly, or it seems that way, given your application in December of 2018. Stay well and thanks for writing… I am sure your experience will help others!
      Charlene.

    • #21618
      Robert Morrison
      Participant

      Hello Charlene,

      Absolutely spectacular pictures of Hawaii. I’m very envious. Someday I have to reread how you made it that far from your home. United requires me to carry enough battery power to cover twice the distance to my destination. I live north of Chicago so if I carry two double batteries for my Imogene One G3, I can only get to the west coast i.e., half way to Hawaii. But I digress… I have used Healthwell Foundation for several years but when I went to renew earlier this month for another year they told me it was closed. Said I had to go elsewhere. I am now working with Boehringer Ingelheim directly to get assistance with the co-pay. Fingers crossed. Enjoy your tropical adventure.

      Robert Morrison

       

    • #21625

      Hi Robert,

      Thanks for writing and for your kind words on my pictures! Hawaii was incredible – a vacation I won’t soon forget, and remain so thankful that I was able to get there and home without any medical crisis. In terms of that distance while using 02 – I am not requiring supplemental oxygen (yet!) 24/7. I typically only use it as needed, and always at night or during exertion. Some airlines have different requirements when it comes to 02 use – the airline I flew with required me to have a certain amount worth of batteries for my portable oxygen concentrator (POC) but I also had the option of using the aircraft’s oxygen if need me. This lessened the amount of battery power that I needed. Not sure if this helps? You can certainly pick my brain for more information when/as needed!

      Thanks for sharing re: the Healthwell Foundation as well. That is sad that they’re no longer able to help, as it sounds like a very helpful and supportive foundation. I hope B.I. has been just as great to work with re: your co-pay! I appreciate the update!
      Charlene.

    • #21826
      Marianne
      Participant

      Beautiful pictures of Hawaii.  Thanks for sharing.  I went there years ago.  Hope to go back some day.

       

      Marianne

    • #21830

      Hi Marianne,

      Nice to hear from you – thanks for writing and for your kind words about Hawaii. Gosh, it was just so beautiful… I think back to the memories of that trip so often, and it brings me a lot of peace. I hope you can return as well, such a beautiful place!
      Take care,
      Charlene.

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