Why aren’t chronic illnesses such as ckd treated with the urgency that Covid was/is when things ckd and cancer are an epidemic of public health in their own right.
I understand progress in medicine takes time, and that breakthroughs are being made but it still realistically seems things are far away.
After seeing the medical community and governments rally around pouring billions of dollars into fast tracking solutions to Covid in many different ways (financially, logistically, clinically, etc) argument aside in concerns to efficacy bc I understand not all the solutions to Covid are successful or bulletproof, it makes me ponder why that same attitude isn’t applied elsewhere.
Why not apply this sense of urgency to other medical causes? Frankly I see thinks such as ckd and cancer and a host of other chronic illness as a pandemic of general health. So why not declare war on these terrible diseases like they did with Covid?
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Covid is contagious and kills quickly, the other diseases you mentioned are not contagious, have a lot of research being done on them and are much slower progressing illnesses. They don't need the same urgency as Covid IMO. Covid is a worldwide pandemic.
I have Stage 4 CKD, cancer, and an incurable autoimmune disease and I'm not riled up as you clearly are.
Life is about priorities. The entire world could die of Covid, the entire world won't be wiped out in weeks, months, or a year from the other diseases. Covid attacks everyone, the other diseases don't. That is why the research and money was put into creating the vaccine and distributing it, and having some fools still not take advantage of it.
I disagree, one of the illnesses I mentioned, cancer, can progress very quickly. It’s circumstantial for how fast something progresses as is the case with many things.
I get why Covid had the response it had but I just don’t see why that same amount of interest isn’t in other things. Globally, chronic kidney disease directly resulted in an estimated 1.23 million deaths in 2017, with an additional 1.36 million deaths attributable to cardiovascular disease resulting from impaired kidney function. I would say that’s a lot of deaths in one year. Nothing to scoff at for sure. Cancer kills about a half a million a year. The “yeah but this thing is worse” approach just seems a bit shortsighted. That’s like saying alcoholism treatment shouldn’t be invested in as much as drug addiction treatment bc heroin kills more people. Why not attack both? Both alcohol addiction and drug addiction wreak havoc on peoples lives and sure one may cause more issue but the other is not that far off.
Also, just because something progresses slow shouldn’t take away from the urgency to cure or treat it especially when the projected number of chronic illness such as ckd or cancer is potentially going to continue to increase in the number of cases and diagnosis and putting more of a burden on healthcare and Medicare. I view it differently I guess. I think there should be more of a group effort based on finding solutions the same way Covid was. It’s been proven possible to do so why not apply the same thinking to other chronic illnesses?
I wouldn’t say I’m riled up, I don’t want the impression to be I typed my post with a beet red face with steam pouring outta my ears 😂. I get it’s hard to read emotion through text but I meant it in a more analytical way. I think it’s okay to be frustrated with a lack of progress but still maintain sensibility. I also think that you have come to terms with your illness and accepted that currently nothing much can be done in the way of outright curing things which affects your viewpoint differently.
I’ll leave it with this. My post wasn’t meant to be a debate over Covid itself, I’m just saying it would be nice if there was the same amount of effort that was put into Covid research and solutions into other mainstream issues. I don’t see any harm in wanting or advocating for that.
I also have to disagree when you say other diseases don’t atrack anyone. Cancer, ckd, autoimmune disorders can attack anyone any time as you know sometimes unlucky genetics can cause pkd, cancer, or immune disorders.
I NEVER said they can't attack "anyone" I said they don't attack EVERYONE like covid.
Cancer and the other diseases are not CONTAGIOUS and people do not die of cancer as quickly as they do of covid. It only seems that way because it isn't always diagnosed early.
You misunderstood most of what I wrote (probably because it differs from your viewpoint) and I didn't read beyond the first paragraph in your 2nd post it's too much and life is too short. I'm done with this.
That’s fair I didn’t realize you meant it that way. I thought you meant it in a general sense not compared to Covid specifically. I’m humble enough to admit that. It’s kinda sad though you claim I made a conscious choice to not understand you bc I had a different viewpoint yet you claim you wouldn’t read my post after the first paragraph because because “it’s too much” when really you probably had some kind of preconceived idea about what you THOUGHT I was going to say 😂😂
You took this into a debate with Covid though and my point was the response to it was amazing and I just wish we had more of that. Idk if you think I have some kind of negative connotation
to Covid when it’s in fact the contrary. Maybe that’s what prompted you to become a bit heated but I think the effort put into it was good but why not put that effort into other things too? That’s my point. But you just went off into explaining why the response to Covid was necessary when I never said it wasn’t. I just think that that same response could apply to other illnesses too. You don’t?
I may be wrong but it seems you somehow had it made up in your mind that I had some kind of issue with the Covid response and chose to write me off. You even mentioned something about people not taking advantage of Covid treatment calling them “fools” despite me not mentioning anything about that subject matter whatsoever.
I think a big part of the issue of cancer/CKD is in the understanding and treatment of the underlying causes, especially CKD. It's been shown that diet can slow the progression of CKD so would it be best to begin educating people at a young age about diet? And then providing an alternative to the low cost food choices of fast food places? When that's all you have around you and you are pressed for time, you are going for the cheeseburger. It used to be there was Home Ec classes in HS where you could learn how to cook, etc but no more. If you are poor and live in a food desert then your choices are limited but even so, education should play a greater role so these chronic illnesses can be avoided BEFORE they become an issue.
Thank you for your open mindedness in determining who the fools are. You must be proud of your breadth of knowledge which must come from many years of studying not only the disease but the vaccine.
Yes! I have stage 4 CKD, an uncurable retina dystrophy that's slowly making me blind, hearing loss, an uncurable autoimmune disease. Having gotten the vax kept me from the hospital when BA.5 hit me in July.
Personally I think the approach to various diseases like Cancer, Heart Disease, CKD comes down to the proper screenings to early detect those disease before they wreak havoc on a person's system. If more people had those screenings which do get funding, then the number of deaths might fall.
Well not wanting to get into politics here but there is a lot about covid .....you are on right track 😉 there are medical professionals trying to stay focused but are working with hands tied rt now...you are forced to be patient I know... don't give up do research too ...it helps knowledge is power and helps ..you are not alone in what you stated .....
I agree. Research and awareness is everything. I think some people took my post as a dig on Covid treatment in some way but my point was simply saying it’s been shown with Covid we as a society can tackle issues fiercely as a collective so why not apply that same rigor to other ills of the world?
I wouldn’t be surprised if you DID rip on the treatment policies of covid. The simple fact of how this (now endemic) pandemic has been handled is disgraceful. In the two plus years of dealing with this, I have heard 99% of the time- ‘get vaccinated, wear masks, social distance, etc.’ , and 1% of the time- ‘Eat healthy, get vitamin D, exercise, get outside and get some fresh air, etc.’ . There was basically ZERO information on being proactive with your health (other than getting the vaccine), which IMO, is unacceptable. I also hear your frustration about CKD. I have followed Dadvice, who has a great story about his journey with CKD, and is chalked full of great advice. He says that America is far behind the other countries in the world as far as their approach to CKD.
Very true. There’s barely any emphasis on being healthy overall and diet. The same people who shill vaccines are the same ones that admitted when they were diagnosed with ckd, no real diet or proactive measures were implemented outside blood pressure and diabetes control through medication 😂
There are some doctors out there that focus on healthy diet and exercise but most just wait for you to develop a problem and treat it with pharma instead of being proactive about preventative medicine. Some will see this response as me saying pharmaceuticals are not important or warranted bc they don’t want to understand what is being said.
I agree with doctors not being proactive enough. My first nephrologist just said ‘eat healthy, and drink a glass of water in the morning. Nothing about how important hydration is to ckd, no mention of what type of diet to be on to be proactive. Just read test results, and told me what stage I was at. I fired him, and am on my second doctor now. So far, so good. I understand that it is completely up to me to deal with this disease once I leave her office. The information on what to eat, how much, and all the nuances of diet are difficult to navigate. It doesn’t surprise me that people feel lost and alone. Forums like this are a blessing. I had a tibial plateau fracture, which accounts for 1% of all fractures, and can be life changing. I found a forum specifically for tpfs, and it was a life saver. There is not a lot of information on them, and once the OS does the surgery, you’re pretty much on your own. I do follow Dadvice, which has a wealth of info on it, along with many videos that are helpful. That guy found out he was stage 5 after having a heart attack, and was told if he didn’t do dialysis he would be dead shortly. He completely changed his lifestyle, and is now up to I believe stage 3b. Quite the accomplishment!
If you're talking about finding a cure for CKD, cancer etc, why bother when they can make much more money treating the illness than by curing it. Until we move closer to socialism and away from Capitalism it will never happen
Are there any socialist countries today that are working on tackling these issues with mass amounts of govt spending? I’d be interested in researching that for sure.
Take a trip up Canada way and ask those living at the border where they go for treatment. If Canadians want treatment within a reasonable amount of time they cross the border for help.
Right, because the government is the answer. Almost everything this government touches, turns to crap. Capitalism has created the greatest innovations and advancements in every industry. Even China, which is a politically communist country, has a capitalist economy, along with every other socialist country. It’s not perfect, but it’s the best way we have today to get the innovations that make our lives better.
$$$$$ If doctors and dialysis centers can suck more money out of your and the government's pockets, why look for a cure? If I'm a shareholder of Davita or Fresenius, you think I want to see a cure? Uhm, I don't think so.
Yup, money is a heck of a thing unfortunately. A government would be stupid to pay for unsustainable methods of healthcare but I guess that’s where the money comes in to basically bribe people through lobbying since it’s “legal”.
Frustrating as all hell, but at least we kidney sufferers aren't alone....none of the other diseases have been cured either. And don't get me started with polio, smallpox, etc. etc.
I made mention of it before: Fresenius were the manufacturers of the ketoacidanalogue used in a multitude of trials demonstating that a ketoacidanalogue supplemented very low protein diet could slow disease progression towards dialysis stage.
Fresenius don't make ketoacidanalogues anymore. Indeed, no pharm co does.
I understand the frustration. I'd simply like to add my perspective that kidney disease is most often caused by an underlying condition - diabetes, high blood pressure, autoimmune disorders, etc. If there were "fixes" for the underlying conditions, there would be a lot fewer people on dialysis and seeking transplants. To add to the mix, we're born with a kidney and a spare and if that fails there is indeed dialysis and transplants which can keep people going for years. I can sorta see why kidney disease is ignored. So proper targeting of research dollars, particularly on underlying conditions, is critical in my opinion. Education is also huge.
Transplants are most likely being given to younger people as well as those who have caved to the vaccine requirement. A choice based basically on age and vaccine status may likely deem an inmate in a penitentiary a better candidate than a retired 70 year old grandfather. I would like to know it isn't so.
That truly isn't so. Transplants are also being given to senior citizens. My hubby received his this past June at age 71. Generally they receive older kidneys or kidneys with conditions that were previously discarded. The prime kidneys go, of course, to the younger folks since they have longer lifespans. I believe there's a person who has received a kidney in his late 70s on this group. (There are a fair number on Facebook which is amazing since most don't do social media.) My husband was transplanted as a diabetic 2 with a heart stent. So take heart (kidney?). You too can receive a kidney if you're compliant and meet their requirements. As one transplant surgeon said, "We would rather give a valuable kidney to a conscientious senior than a younger person interested in drinking and partying every night."
I agree 100% it's the underlying causes and the lack of good nutrition education...it doesn't when people opt for convenience over quality food choices.
Biden has dedicated more focus to cancer research. Maybe WE--not saying this forum is the only WE--but if the Collective WE can rally the celebs to promote more focus on kidney diseases, maybe politicians will notice us. And by the next election, the Collective WE can work to get a candidate to speak about it. Its a lot of work trying to get them to make one specific public health issue of the body an agenda item. But I know people who actually pounded candidates the last election on reparations data from slavery through Reconstruction through Jim Crow to now. It was impactful in getting clear dismissals and clear acceptance to make it agenda items.
Start tweeting candidates now. Stacey Abrams announced she is running for governor in Georgia. I'd think there might be a lot of kidney disease in her state. You don't just have to be from Georgia to lobby her. It will especially matter even if international people lobby her because the Democrats want to hold onto her for a long while she keeps herself free of political drama. And so far, she's clean as driven snow. I'd start looking for any locals up the ranks.
But as for celebs: Selena Gomez, George Lopez, Nick Cannon, and Sherry Shephard all have health issues connected to kidney issues. None of them are White though, but Selena is considered White. I make that point because the face of ESRD is POC more than White. That's another thing. Race and optics of importance. But Selena is transcendent and is able to represent as White for advertisers and those who tend to not care for highly POC health issues. Hence, you know...if its a poor persons disease, its not favorable for capitalists to invest in because poor people can't pay for the high cost of optimal treatments. While I know it effects all people and children, most of the dialysis centers are in poorer areas. That alone is telling.
Selena is huge and is capable of doing what Michael J Fox has done to advance Parkinson's research. She's capable of producing worldwide focus through various avenues. I bet she's been asked but probably hasn't been demanded. She probably has it slated for later in life to do on her to-do list instead of now. But she's be a game-changer if she led a health movement at her age. I think Michael J Fox was older than her when he started to lead.
Cancer is important and I don't want the focus removed from it. But I do feel your consternation about optimizing kidney diseases focus. There is a direct correlation in kidney diseases increase with the development of more stressful modern lives. My family came from agrarian living hence slavery to sharecropping and no one had kidney issues for generations I've found. Nor cancer until recently. But almost everyone of us has high blood pressure because of the racism and stress of modern so-called progress. Modernity is war on our bodies. Our jobs are mental torture. So we ate fast, processed mental stress, and didn't pay attention because everyone said you had to keep up to prove you were a worthy American. But I think that's the correlation in our country to why its a poor person's disease--even of White Americans.
I'm not sure the economic range of those who are active in this forum but I'd say most are erudite and probably middle class strivers.
But it was good to see Billions dedicate some focus to ESRD in how treacherous it is to get a transplant kidney fast. It was cynical but true about how the rich with kidney disease don't bother going through managing it; they just buy a kidney and hope it takes. And in "I May Destroy You", the clinician at the clinic doing intake kept drilling questions about hypertension and kidney concerns to the two young Black characters who sought mental health treatment. I thought that was far more impactful than any American representation in tv of pointing out kidney disease as a rising health concern.
But if WE want more influence, WE have to build it. Maybe by tweeting Michaela Coel by constanting tweeting her for promoting kidney disease and hypertension in her shows moving forward. Maybe ask her to commit to it as an ambassador for us. She's supposedly going to be in the next Black Panther. Start that way.
See if we can get Hollywood to script it more in tv shows.
Nick Cannon is a hot mess but he is capable of stopping the presses. And he needs good press/clean-up press. Just like any tragic celeb is good for it too. WE just need a new insurgency like ALS got. I had never heard of ALS until a few years ago from those bucket challenges. Go figure! I didn't own a tv but it was unavoidable to miss.
I rather not rant and whine about COVID stealing priority focus on the research totempole because that isnt a balanced comparison to even try to contrast. Apples and oranges. But if you were maybe seeking responses on how to energize kidney diseases focus here in this forum, stop whining and do exactly what you want and create lobby. I gave you some ideas to start with and they are big. But...Go Big Or Go Home!
I think everyone here and effected will join in.
I don't do social media due to anxiety reasons but I know I can do some heavy lifting other ways; maybe by consulting and designing concepts like I just did. What I'm saying is that someone has to start it and everyone ain't qualified to lead--including me. But everyone invested will find ways to SHOW UP on this because we all want more research focus than these slow-responding doctors we have who won't act until you are near the end. Makes no since in 2022.
The marginalization of kidney diseases even affects the legal system. I'm dealing with malpractice attorneys one after another denying my case because I'm only at Stage 1 from negligent surgical injury having had a high eGfr. The legal system too has to evolve in understanding the full spectrum and evolution of kidney disease and not making it a low payout risk for for attorneys to try cases. I had no idea kidney disease was low on the malpractice totempole as well even when attorneys say in print that your case has lots of merit. Kidney Diseases is marginalized in medical malpractice as if they still don't understand it without having high paid experts making it more common knowledge in the general social education of potential juries. I keep reading how low the payout is for it when kidneys affect the cardiovascular system just as much. I don't think they factor that part in. Or muscle wasting. Or pain I go through at Stage 1 because of injury. They really haven't educated the public or the judicial system of how medical injuries to the kidney cost a lot more than they lowball. Kidney Diseases aren't important yet and we have to make it important/popular/sexy for even the legal system to notice. They are effectively letting doctors and hospitals off the hook because their system still doesn't understand the complexity of it. I think the lawyers know exactly what we know but until the NKF and other associations impart Nephrology better in malpractice, the juries will continue to lowball kidney low on the totem pole for justice in not making them unattractive high cost cases for attornies.
Stacey Abraham’s is ‘clean as the driven snow’ ??? That’s rich! Typical hypocritical politician, telling people to wear masks, and doesn’t need to wear a mask herself? And when she gets called out on it, she cries racism? Claiming she was the true governor of Georgia, when she was handily defeated, even to this day! Yeah, she’s as clean as the driven snow. Politicians could give a rats ass about ‘international’ people; only their constituents who can vote them out of office. You don’t do social media, because of anxiety, yet you will gladly hop on here, and tell someone that they are ‘whining’? Not to difficult to tell that your a liberal.
I find it interesting how there has not been one thing the cdc or scientist has said about Covid to hold true. As midterms approach it will be more of “learn to live with it” . We were fed a lie of a cure for a virus.Well that did not come to be . No matter your politics you can’t deny that fact . Arguments of vaccines help is not what we were told at first . It was a cure . Mask , isolation ,shutdowns ,The virus did not care and will not . Mask up vax up hide it’s your right . A lot of people have seen the truth . I feel my health issues have taken a back seat to a lot of political control of the health system. Not to mention having a parent die of cancer alone in a hospital for a month . While I was triple vaccinated and had had Covid and told no one was allowed in his room. The Covid circus continues. Next time you want to tell me about mask or plexiglass I have a bridge in Arizona to sell you . Well I’ll sit back and wait .
That’s precisely why they are trying to cancel Joe Rogan. The man is curious af, and asks questions, which those in control do not like. Plus, Rogan has over 11 million listeners to each podcast, the largest podcast audience in the world. All he is looking for is the truth, and after what the MSM, especially CNN did to him with the whole Ivermectin reports, it’s no wonder people trust him more than the media! The ‘misinformation’ (God, I hate that word!) that Joe Rogan was purportedly disseminating, have now been proven right. Our government and the CDC have been the main peddlers of covid misinformation, especially that Lillie troll Faucci. Anyone who cannot see the political b.s. he’s selling, either cannot think critically, or doesn’t want to see the truth.
This may be an unpopular point of view but so much of what the federal funding is used for aligns with the needs of those who have most to gain financially. The radioactive isotope machines and the cancer clinics are all set up and thriving on insurance money. They don't do much good do they? People are not surviving longer as a result of these treatments. Covid fear has allowed the government to usurp small town businesses where people used to shop to the benefit of big businesses like mail order Amazon. The things happening behind the scenes responsible for manipulation of health care funds is frightening. I spoke with an ER nurse two days ago who told me that many people with Covid are flooding the hospital. She said most are not very ill, but they are scared. They don't need treatment. They just need to stop watching TV. I had Covid last year and being 74 years old with Lyme and a long term auto immune disease you might think I would have expired. I was in bed for 5 days. I am not sure about how many people died FROM Covid in the past 12 months rather than WITH it but you might want to compare the true numbers with the numbers of those who have died from acute illnesses like CKD. Except for symptomatic treatments and some surgical interventions consider yourself on your own for most diseases. They are not attracting big money players.
This is the sad truth. You’d think that more influential and wealthy people have been impacted by chronic diseases would fund research more often. For example George Lopez and Ariana grande had transplants but kind just left it at that. It does however seem that some big wigs are investing into anti aging research which would apply to organs as well but I’m sure if any breakthroughs happen, theirs gonna be a bunch of stipulations with that to turn it into the new money farming system that current treatments seem to have become.
Not all of those that died perished from Covid specifically. Some die and happen to test positive for Covid at the time, asymptomatic to boot in some cases. 900k people didn’t die because of Covid. Idk what the actual number would be it’s too skewed (I’m sure it’s still in the hundreds of thousands) at this point. But that is not the point,
The main idea was moreso “why can’t we mobilize the same way against other chronic illnesses that plague our society” it’s been proven possible it can be done with Covid as the example.
It is called Lobbying and Donating to Politicians...Dialysis is BIG Buisness..they have been working on the Implantable Artificial Kidney for decades, but really have to struggle for project money mainly because Big Pharma DONATE to Politicians and things ...like Implantable Artificial Kidneys...go to the back burner because they could mass produce them so everyone with kidney failure could have one for about 30 Grand and end the money train
Well, money will have a lot to do with it. And votes too.
That government doesn't step in and make CKD a priority isn't a vote loser. Sitting on their hands whilst Covid ran amok would be. They didn't know at the time that it wasn't exactly a mass murderer virus. But it could have been and so they acted
There is also huge amounts of money to be made from treating, but not resolving illness.
Imagine. You are the CEO of a company charged with maximising shareholder dividend. You have two products:
Product A: a cure for CKD
Product B: dialysis equipment and consumables.
Which (you are the CEO remember - you didn't get to be where you are by being a nice guy) will you promote and which will you bury. Indeed, which will you finance university researchers for?
You'd have to find someone in whose interests it is to prioritize human suffering. And who has the power to implement that interest. In order for human suffering to be prioritized.
There is God and He's sorted the problem out in his own way. A macro sort of way. But in the meantime...
Very insightful. This is the sobering take on the whole debacle. I’m an idealist but not naive, facing reality is sobering. What really hit me was when I researched into the bio artificial kidney and the Dr 10 years ago said it would take 10 years and a few days ago he did an interview saying it’s gonna take 10 years again while essentially grifting for money and donations.
Edited this comment as a sort of speak of the devil moment. Using MRNA therapeutics to repair heart function through tissue regeneration.
LOL if you want to see this in action on a daily basis look at the oil companies. They've lied and misconstrued their efforts in reducing climate change all the while maximizing profits. They are only one industry but they all do it, if not then we'd not have so many food poisonings from lettuce of all things. Sad part is someone is electing those self same govt weasels.
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Frustrated by Kidney Transplant Evaluation
Anyone tried Olive Leaf Extract
Low egrf, high creotine, everything else normal.
