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How has PH Awareness changed over the years?
Has PH knowledge, treatments, access to specialists, patient quality of life, mortality, and caregiver support evolved since you or a loved one were diagnosed?
Patients and caregivers, please share how PH awareness has improved and affected you since diagnosis.
If Colleen Steele may name and quote you in a column on this topic, please include your consent and year of diagnosis within your comment. Thank you in advance.
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3 Replies
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What an incredible topic for discussion and an encouraging column, @Colleen .
I am incredibly grateful that, since my PH diagnosis in 2005, nearly 20 years ago, we have had so many new treatment options available. It’s encouraging to see the research being conducted for clinical trials that focus not only on treating the symptoms of PH but also on understanding and addressing the underlying causes of this condition.
For me, each time I thought I would need to transition to an IV treatment, a new oral or inhaled option would come out. These treatments are now being used to transition patients who can move away from IV and subcutaneous treatments to either oral, inhaled, or injectable therapies or possibly a combination of several options. Not everyone will have the opportunity and want to try others, but I am seeing fewer people with PH on IV treatments now.
(Anytime, feel free to use my thoughts in a column (diagnosed 2/2005)
I look forward to hearing from others and your future column piece, Colleen! -
I am not sure the information I found belongs in this but I need to get this info out there.
Please look over your 2025 insurance especially if you are on Medicare. Through PH News it stated a number of drugs were not going to be covered by Medicare. The drugs listed were not ones I am on, but I called our Medicare Drug Plan and yes, they were not going to cover what I an on: Remodulin IV, Letaris nir Ambersentin. The cost of these and supplies is over $150,000/year. I quickly changed our plan to perineum plan. If I had not caught this by Dec 7th I would be up the creek without being able to afford my drugs that are keeping me alive.
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Hi, @carol-volckmann ,great timing. I have this topic to post this week. I will copy your information to add to my post about this. So frustrating, to say the least!
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