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questions about help with RX costs
Hey guys I have been MIA for a while but I am still living the dream, what dream is the question 😉 I send my love to everyone, especially @Colleen-Steele and @jen-cueva I think about you guys and have been following from a far, Bless you and your families.
So I have a copay assistance to help with my Ambersenten which is so very helpful. My question is my mother who has Pulmonary Fibrosis and was just diagnosed with PH is using Tavaso (sp) she went through her first round of copay assistance and is looking for additional help to kick in. My questions are,
Why are these drugs so expensive?
Why do we have to go through a specialty pharmacy?
What happens if she can’t get co pay assistance do they not give her the meds if she can’t afford the copay? ( she is 84 and on a fixed income)
I am just frustrated, I feel its all just a game to them and they try to squeeze every dollar out of the system instead of thinking about the ones who need the help the most…. Anyway do anyone have some advice on how to play the game? Thanks in advance!
Cody H.
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5 Replies
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Hello Cody, I am so sorry you feel you have ru into a brick wall and it is so frustrating when your mom needs the right meds for her PH.
The biggest question is where your mom can get help with her co-pays are with the manufacturer of the drug, but also through Non- profit Foundations that get funding through various corporations, institutions, individuals etc. They support thousands of patients with rare and very expensive diseases.
I am on 3 different meds for MY PH, Ambersentin, Tadalifil (oral meds) and Trespostinil IV. The Assistance Fund covers my co-pays for the oral meds and Medicare covers IV meds under Part A hospitalization.
There are other fundations PAN Fund. You can go on line and check them out. Each one opens their coverage until the funds run out and will open up and again once they get more $$$.
I believe the Forum has a list of different fundations with grants.
To answer your other questions “why costs are so high” my answer would be they get what they can! And the “Special Pharmacies ” they have a network of nurses, pharmacists, supplies to support all the medications and delivery system etc… best I can come up with.
Don’t lose faith, I am 79 and been on these meds for 18 years and pan to be around for a long time.
Sending you positive energy!!!
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Thank you for your reply and suggestions. We have been able to work things out for now till the end of the year. We are very grateful for this. @jen-cueva Life is good for the most part, I guess its all in how you look at it. We try to enjoy each day just dealing with the events as they come and look on the positive side.
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Hi, @Cody Hanson. I’m incredibly grateful you have it taken care of until the end of the year anyway. It’s unfortunate that many copay assistance plans must be reapplied each year. With so many cuts, the number of grants they offer during and post-Covid has been more difficult since, and I hope many will begin to open more slots each year.
Yes, sir, it is all in our mindset. Life is good, challenging but good. Looking for the positives always helps. Take care, and enjoy the rest of the week and your weekend. Thanks for updating us.
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Hi there, stranger, @Cody Hanson! It’s wonderful to hear from you. But I’m sorry about your struggles trying to help your mom with her Tyvaso copay. @Carol Volckmann offers some incredible information. I’m hopeful it will help you.
How have you been besides living the dream? hehe
I agree these treatments are so costly; your mom shouldn’t go without her Tyvaso if she has Accredo as her specialty pharmacy. I suggest you call them and ask for their help, too.
Also, I’m sharing a link to PHA, which has various financial assistance programs. Maybe one of those will benefit you and your mom. Please keep us posted. We are here to support you both, Cody!
https://phassociation.org/patients/insurance-and-treatment-access/financialassist/
phassociation.org
Español FINANCIAL ASSISTANCEWith or without insurance, pulmonary hypertension (PH) treatments can be costly. If you need help covering the co-pay for your pulmonary hypertension therapy, you might want to take some or all of the following steps. This list represents … Continue reading
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Hello @Cody Hanson I have been MIA for a while too and I am sorry for the late response. You have received excellent guidance from others. All I can add is my sympathy and understand about what you are going through. I’m also caring for my aging parents and talking to Medicare tomorrow is on my to-do-list. Their out of pocket for medications is outrageous and I’m hoping there are better options for them then what they have.
How are things going since you posted the question about the cost of medications?
We will always be here for you, whether it’s about life with PH or just life in general. We support one another!
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