It is unsettling when the political warfare that has gripped our country in recent years spills out of the halls of Washington threatening vast change. As a patient community, we are concerned about what the changing times mean for us as many of the details can represent life and death for us. The politicians and the other clickbait artists search for triggers that can generate a viral message, constantly driving our concerns. I thought it might be useful to take a step back and consider where we stand today.
The sky is falling -- we are doomed -... - Living with Fatty...
The sky is falling -- we are doomed -- well maybe not


I think we should keep politics out of these forums because there are always 2 sides
Politics affect liver patients directly. Access to healthcare and insurance, funding for medical research, policies that make healthy living more expensive and lead to higher rates of liver disease, all flow directly from politics. The whole point of advocacy is to affect policy so that it addresses the problem.
What was said by Str8jacket is not politics but the truth...we all need to be aware of what is going on with the government that will affect our lives and treatments...keep silent and you will most likely lose what resources that we have......
I am a historian. I have seen (and taught about) this scenario. The drugs that we see on the horizon are the result of years of dedicated research. That research is in imminent danger of ending as NIH grants are blocked (the courts can declare this illegal, but without Congress standing up to stop the coup, there is no way to enforce those orders.)
The VA is being gutted. Federal agencies from the CDC to the FAA are being decimated. Agencies that are tasked with ensuring the safety and welfare of all Americans are being dismantled. Medicaid, Medicare, and Social Security are being led to the chopping block as of today.
This is not "sky-is-falling" paranoia. This is the reality on the ground in the U.S. Your personal information including SS#s (and most likely banking info) has already been downloaded.
All of these things are reality. The courts are holding as best they cannot do it alone. We are the only ones who will save us. They have already started coming for immigrants. They are already attacking trans kids. If you do not believe that liver patients (and the ability to gouge us for exorbitant prices for any drugs that manage to make it to market) are not on that list (along with just about everyone else) then I would direct you to some actual history. The playbook has been written and is being followed meticulously.
Stand up and use the voice you have. It is the only thing that will save us. This is not a game. This is an overthrow of the U.S. government. The oligarchs don't care about the progress in liver disease treatments unless it can make them an obscene profit.
Medicare and social security are on a chopping block? I have not heard this.... source? You say it's not paranoia but that's what it sounds like...
The current House budget calls for upwards of $880 billion in cuts to include Medicaid. (academyhealth.org/blog/2025.... That is only one source of dozens. NIH funding and personnel have already been slashed (unconstitutionally ). Paranoia is unfounded fear not based in reality. The reality is that these things are happening already. We all want to cut fraud and waste. The exact opposite is happening. And any hope for further research with actual science has never been less likely in a regime that is undermining scientific credibility and resources at record speed. It's sad but true. There are so many news sources and good reporting out there that are tracking these things. Check out the BBC, the Guardian, and other international sources. U.S> media is corporate, but even some of them are starting to push back against the attempts at censorship. Read widely for the best picture.
The link above isn't working as it should. Maybe links on here are problematic? In any case, a simple Google search will lead you to dozens of reports that confirm this. Keep in mind that those cuts are specifically to allow for massive tax cuts for billionaires. This is not a secret or a conspiracy. The information is widely available.
Our entire Healthcare system is one giant mess and has been for some time. I wouldn't focus in on one specific area. I could talk about our Healthcare pitfalls for hours on end. Since the ACA working Americans are in between a rock and a hard place. I work for my coverage and it's practically useless. Most plans before ACA were actually beneficial. Now most of them are just a drain on your paycheck, nothing more... I'm sure you have a different opinion and that's ok too.
hi. It should always be okay to have different opinions. Sometimes that gets us to better solutions.
I couldn't agree more with the assessment that it is a mess! Since the ACA provides coverage to people who have no other coverage, and since employees generally access insurance through their jobs, how is it that the ACA made your private insurance worse? For-profit insurance companies have always sought to decrease benefits and payouts. The ACA required them to accept employees with preexisting medical conditions. When people don't have insurance, they utilize emergency rooms, which they generally can't pay for, and then we all collectively pick up the tab. It is grossly inefficient. Universal healthcare would solve all of that.
In the US, Medicaid/Medicare and Social Security are paid into through separate funds (and do not affect the deficit) and provide some degree of security for those who have paid into the system and are withdrawing their own money at retirement. Gutting those programs is stealing the money WE put into the system in a separate fund. That gutting is what the GOP just voted to do. People will die waiting for care or be denied care altogether when they do not benefit the system (i.e., generate profits). All of this is to provide tax benefits to the richest 1%. The elderly, our children, people with chronic disease--we are all expendable so long as they keep making profits. What a sad state we have come to. In the richest country in the world, it doesn't have to be this way.
I wish you well.
The trust fund issue is more complicated than that, in 1983, Congress set it up so that the trust funds are all invested in special treasury bonds. In effect, we the People are loaning our funds to Congress and they use them for other federal programs. The trust fund is now just a bookkeeping entry and when congress finishes bankrupting the country, who are you going to call to get your money back?
Hey at least we can agree to that, lol. So many people these days simply cannot abide someone having a difference of opinion. As far as the ACA goes, and I have no direct evidence for what I'm about to say but it makes sense to me, the ACA included a provision to levy an excise tax on American companies that provided what they called Cadillac plans to their employees, which to me was just a good insurance plan. This provision was repealed, but that was clearly their intent, to reduce those plans and/or use those fees to fund the ACA. I feel like they probably found another way to achieve their objective, especially considering how dense and complex the ACA is. I've had a lot of different jobs and before the ACA all my employer provided medical plans were great, usually a simple 20 or 30 dollar copay was the only bill I ever saw. Even my first job at a grocery store was like this. Its sad to think that my first little grocery store job had better medical insurance than my current job, almost 25 years later, which earns about 5 times more. There are no other options. The most "useable" plans start with a rather high dollar deductible, which of course your bear the brunt of that. With the health issues I've had it gets ugly. Maybe I'm wrong in what I assume. Maybe it's just a coincidence, but I've talked to many others that feel the same way. In recent years I've really began to feel like maybe we should just have universal healthcare. Maybe we can agree on that. Could it really be any worse than a for-profit healthcare system? Hard to imagine.
The 1980s saw massive deregulation of just about everything (under Reagan.) That drove up costs and reduced benefits for insurance as well as doing a bunch of other very undesirable things. I completely agree with the universal healthcare position! My mom lives in Canada and has liver disease. She would be dead if she lived in the US. The critiques about long lines and inadequate care are as far from the truth as you can get. She sees her doctor right away and gets excellent care--far better than mine in the US, where it took me more than a year to see a specialist for the sleep problems caused by long Covid.
Yes, we would pay more in taxes but far less in health insurance. There is a reason countries with universal healthcare aren't rushing to single-payer: their systems are superior.
Anyway, this sort of discussion is valuable in a time when so few are willing to engage in deep conversation. Keep up the good work! And please attend to the fast-moving changes that are increasingly dangerous. We must all stick together! We do not have to agree on everything to do that. We just have to care more about our democracy than our differences.
Peace to you all.