Pulmonary Hypertension News Forums Forums PH Care and Treatment Are you familiar with Merck’s copay assistance for Winrevair (sotatercept)?

  • Are you familiar with Merck’s copay assistance for Winrevair (sotatercept)?

    Posted by jen-cueva on April 24, 2024 at 2:49 pm

    Are you excited about starting Winrevair (sotatercept) but need the drug company’s assistance? Below, I am sharing Merck’s Access Program. This program is ready to help manage insurance and offer affordability options.

    Of course, other copay assistance resources exist if this doesn’t work with your insurance for some reason. Plus, I know specialty pharmacies, like Accredo, usually do a great job working with our PH teams and insurance.

    Once you begin this new treatment, please share how this resource helps you pay for your treatment. Also, sharing your out-of-pocket cost, if you choose to, will help others. What copay assistance programs worked for you?

    https://www.merckaccessprogram-winrevair.com/hcc/affordability

    Rivegauche610 replied 1 month ago 4 Members · 12 Replies
  • 12 Replies
  • Carol Volckmann

    Member
    April 24, 2024 at 5:14 pm

    Thank you Jen! I will be talking with my Pulmonologist Friday to see if I qualify, when I can start etc… This site you posted is very helpful. Thanks 😊 again!! I will let you know after my meeting Friday.

    • jen-cueva

      Member
      April 26, 2024 at 1:36 pm

      I’m so happy that you found this link helpful, @Carol Volckmann. Please let us know what your pulmonologist says about starting this new treatment.

      I had my follow-up yesterday with my PH doctor, and he wants to wait a bit before we discuss this for me. But I also agreed with him. He said they are transitioning the people on pumps first if they qualify.

      However, it’s an option he will discuss with me when we think I need a change or additional treatment. With my kidney disease and other health concerns with PH, we have to be cautious.

      Please have a great visit and then enjoy a lovely relaxing weekend, my PHriend. 💜

  • Carol Volckmann

    Member
    April 26, 2024 at 4:25 pm

    Hi Jen, I was jumping the gun. I don’t have my appointment until Tuesday. From what I read and what my Pulmonologist told me, it looks likely I would qualify – on the pump, taking oral Tadalifil and Ambersentin (2 of the orals that qualify) and my platelets count is okay (that one concerns me as it is close being too low).

    I can certainly understand why being cautious is really wise changing to a new med. There are issues with every drug and each person is different.

    I will let you know where I stand after my Tuesday meet. You … have a sunny 🌞 weekend filled with some laughter and joy along with good warm cuddles with Manny – toes in the sand ⛱️🌟 maybe? Thinking of you dear sweet friend! 🤗❤️

    • jen-cueva

      Member
      April 29, 2024 at 12:13 pm

      Hi @Carol Volckmann, no worries, my PHriend. You were just so excited about seeing your pulmonologist! Winrevair(sotatercept) will be a game-changer in our PH community. So far, I’ve only heard positive news about it. 💜🙏

      Reading on some social media groups, most report the same side effects as other PH treatments. I have read about headaches, flushing, and sensitivity to sunlight so far. So, that doesn’t sound bad, especially for those like you who would transition over from a pump.

      Yes, please do come back and update us after your appointment tomorrow. We will be thinking of you.

      You know me well. Saturday, I watched our niece play softball outside. Then, on Sunday, I put my toes in the sand for a few minutes. It was a beautiful weekend, and I wanted to take advantage of it. 🌞

  • Carol Volckmann

    Member
    May 1, 2024 at 12:02 pm

    Good morning @jen-cueva I did have my appointment with my Pulmonologist and we have decided to put a hold on Winrevair. One side effect that has occurred in a few on the trial is bleeding. Even though my PAH is stable I do have some minor bleeding caused by my Scleroderma mostly in my gut which in turn has lowered my blood count and needing occasional blood and iron infusions.

    Dr Leary would like to wait to see the data of Winrevair over the next several months to a year and I do agree – wise to wait and see over time and with many more folks on the new drug. At least 2 of his patients have signed up and are waiting for the prescription to go through. They do not have other contributing medical issues that would put them at risk.

    I hope this information will help others as they look at the pros and possible cons. It will certainly be a wonderful game changer for many.

  • Carol Volckmann

    Member
    May 2, 2024 at 8:22 pm

    Just want to add to my previous post. The most serious side effect they have found with Winrevair is bleeding in the gut and/or brain. Small bleeds they can handle, massive bleeds – not good. As I said above I already have issues for bleeding. Most people don’t. Again, will see what the data says in 6-12 months.

    • jen-cueva

      Member
      May 3, 2024 at 12:13 pm

      Hi, @Carol Volckmann . Thank you for sharing your experience and adding the information to the forums. Bleeding is a serious concern, and I’m glad to hear that your pulmonologist is taking it into consideration. It’s crucial that our specialists don’t rush into treatment and exercise caution.

      We all come to the table with a unique PH journey, and the addition of coexisting conditions further complicates things. As we learn more about new treatments, there may be options available to us in the future. Even if that’s not the case, it’s still exciting to see advancements being made in the field. We can look forward to more new treatments that will hopefully benefit others.

  • Joanne Sperando

    Member
    May 8, 2024 at 2:34 pm

    I’m curious why some folks are saying “transition” when I have read that this is strictly a med that would be added to your existing drug cocktail, not replace it. I was also wondering if blood thinners are removed or reduced with the possible bleeding side effect? Anyone know about that?

    • jen-cueva

      Member
      May 9, 2024 at 3:07 pm

      Hi, @Joanne Sperando. I am not on this new treatment. However, I’ve heard from a few others, for example, who transitioned off their Remodulin and transitioned to this. But they will continue with their other treatments.

      I would guess that your question for blood thinners would be based on each individual. Because many are on blood thinners to prevent clots, I would assume they wouldn’t stop that. But this is so individualized, right?

      These are excellent questions. Hopefully, some other forum members can share their experiences so we all learn.

  • Joanne Sperando

    Member
    May 14, 2024 at 2:39 pm

    Thanks Jen! It’s all so new.

    • jen-cueva

      Member
      May 16, 2024 at 1:16 pm

      Yes, because it’s so new, many specialists are preceding with caution on patients they have in mind. In your case, I hope this is an option for you soon, my PHriend, @Joanne Sperando.🤗

  • Rivegauche610

    Member
    June 10, 2024 at 11:36 am

    Might be prudent to take into consideration the fact that a Swedish company, Cereno, has developed something that blows Sotatercept out of the water. Ignore the subreddit where this is found and just marvel at the research this person did: https://www.reddit.com/r/pennystocks/s/3drpElzvAA

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