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Streamlining government
Here in the U.S., an effort is underway to reduce the size of government. Do you feel this has impacted your care to date?
What concerns do you have about closing or reducing the size of agencies that provide research, funding, or oversight of your care?
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13 Replies
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Considering how much we, and other seriously afflicted people, rely on government health-related agencies for information, for research, and for health care access through Medicare and other programs, this could be a disaster. Samuel, if you know of a way we can support push-back efforts against this moves, please let us know.
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I have great fears about these cutbacks on my health. Not only may Social Security and Medicare be gutted, but I also fear that research funding will dry up. I also want to fight back for my future.
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I feel once they get it sorted out and eliminate all the fraud there may be more that can be used on research. It appears now that everything is being cut out but the important items will be put back in place!
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No it hasn’t effected my healthcare to date and I think it will help in the future. I sure feel better.
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This is the second political based post from the poster. We don’t need politics in this forum. We all have much more important things going on in our IPF lives. If this kind of posting is going to continue please unsubscribe me now.
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I don’t see this as a political post, it is currently a fact of life and may eventually affect us more or less.
Stay well…
Steve -
Hi Sandyman,
Advocacy requires interaction with elected representatives. A significant part of that advocacy is speaking with those representatives about what concerns you. I am meeting with elected representatives over the next two weeks to address concerns in the PF community.
Sam
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I am in United Therapeutics Corp’s Tyvaso Oral Inhalation via Nebulizer Treprstinil or placebo clinical trial for IPF. I am concerned cutting funds to Universities that run these trials will slow down research for IPF treatments. The two antifibrotics approved to slow IPF were studied extensively through clinical trials and approved around 2014. I benefited from these trials since I was diagnosed with IPF in 2022 and taking Ofev. I am in the UTC Tyvaso trial hoping treatment through a nebulizer will be approved which will widen the treatment options.
Funding cuts should be looked at carefully. There is a saying which seems appropriate: “Don’t throw out the baby with the bathwater.”
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There is a vast amount of waste and corruption in our top-heavy government which will cause far more serious future consequences if not dealt with. However, at least initially, legitimate research will not feel much of an impact.
I had to survive on my own for several years in the Philippines where there was little help for ILD/IPF/PF – except O2. So if I have to do it again, I will…
Stay well…
Steve -
No, it has not affected my care, nor do I see that happening in my future. I’ve been a medical professional for 29 years and we have had the worse healthcare the past 16 years I have ever seen in my career. Our healthcare is already failing us…. in order for me to get Ofev it will cost me $11,000 month because my husband is still working and Medicare doesn’t cover it for me. How can it get any worse? The fear mongering needs to stop….this disease is scary enough.
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Sam, the relationship between politics and healthcare is obvious. The SOAR Act of 2024 is one example that affects many of us on this site. Please keep up your thoughtful posts. Steve
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Sam, I’m frankly terrified that funding for research will dry up. It has been promised to us that Medicare will not be touched. We have to hope that is true, but at this point it’s a little early to tell. At any rate, keep up the good work, and continue on being a voice. My health care has not been affected, but then I also pay a hefty premium for supplemental health insurance.
Carry on!
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I have heard through the media on several occasions that Medicare Medicaid and social security will not be affected by DOGE. They are looking for fraud and waste. I’m confident that legitimate research will continue. Anxiety over unsubstantiated rumors only enhances our ongoing struggles. I choose to take a day at a time and enjoy my days.
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