I know that we have very different experiences with our ILD. I had a look on an American PH news site and see that they have been testing an oral spray which has given quite favourable results for PF sufferers. Wonder how long it will take for UK to get it! Here is an extract from the article. It would give those of us with this co-morbidity a better quality of life.
May 25, 2022 News by Marisa Wexler MS
Tyvaso DPI Approved by the FDA for PAH and PH-ILD
The U.S. Food and Drug Administration (FDA) has approved Tyvaso DPI, a dry powder, inhaled formulation of treprostinil, to improve exercise ability in people with pulmonary arterial hypertension (PAH) or pulmonary hypertension associated with interstitial lung disease (PH-ILD). Tyvaso DPI is now the only dry powder inhaler approved…
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Little-Lung-Lulu
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Not holding my breath! If it's an inhaler then hopefully not too expensive. x
Best I can see, the DPI (inhaler) doesn’t appear to have been submitted to either the EMA or MHRA for european and uk licensing or use yet. Treprostinil itself is currently licensed for use with PAH in the UK as an IV, but a single vial at the lowest dose of 20mg currently costs the NHS £1338. You can’t draw a straight comparison, but the dpi has a total dose of 256mcg a day, so 20mg would equate to about 78 days of inhaler, the good news being that hopefully means it won’t be considered prohibitively expensive for the nhs.
The inhaler won’t be available here until United submit a licensing request and the study data to the MHRA, have it approved on the basis of safety and efficacy, and NICE then sign off on it being financially viable for the nhs. Unfortunately, even if started tomorrow, my understanding is that’s also a process that can take quite some time, particularly if cost is a factor, but the MHRA licensing element (reviewing the study data and reaching a marketing authority decision) is meant to occur within 150 days from submission. Fingers crossed they submit soon and the data stands up to UK standards.
Thanks for your reply Charlie_G. I've got a feeling it's not going to be in my time. A lot of PF sufferers have the disease because the medical fraternity have prescribed medication that eventually causes scarring of the lungs. In my case Nitrofurantoin. It would be nice to know that we would get priority to avoid/improve the effect of the co-morbidity disease PH. xx
I dont know enough about this disease LLL but can say that its so disappointing knowing there is a medication that would help but you cant get it. Silly question, but do they consider testing these out on volunteers that are willing to take the risks ? I hope they can push this through quickly for the benefit of you all x
I think because the US healthcare industry is exactly that: a profit making industry. Which is why you have appalling numbers of people dying from perfectly treatable conditions like diabetes because they can’t get/afford insurance, and for most people, even with insurance there are still out of pocket costs on top that can total hundreds or even thousands of dollars for regular medication. Yes, these drugs are available, but the standard of evidence required to deem them effective is lower because the industry is driven by making as much money as possible, and only a reduced number of those that would benefit from the drugs get them anyway.
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