Since January 2012, CMS has implemented a ESRD Treatment Choices Model in 30% of the US. The goal was to increase home dialysis, increase kidney transplants. Home dialysis and kidney transplants in the US are FAR FAR below other developed nations. Only 12% use home dialysis and only 2.85 have transplants before dialysis and 29% ever get a transplant. "The U.S. was ranked 39th of 61 countries reporting to the USRDS in 2016."
A new report was just published to see if this "innovative" model was working to increase home dialysis and transplants and thus improve quality of life and other outcomes for ESRD patients. "there was no evidence of an impact of the ETC Model on the use of home dialysis modalities, transplant waitlisting, and living donor transplantation,"
While home dialysis increased a bit, it was across the board, not due to the ETC Model. I suspect it also increase due to COVID-19. The ETC Model also didn't seem to affect the transplant rates in the clinics that used it. There was a small increase in the deceased donor rates.
The report cautions, "While the evaluation findings in this report are based on two years of experience with the model, we caution that it is still too early to form conclusions about possible longer-term impacts of the model."
The "model" was basically changes to the reimbursement rates to incentivize home dialysis and transplant. Though I don't understand how dialysis reimbursement rate changes can incentivize transplants. As long as dialysis clinics are the primary information source for home dialysis and transplant information they will continue to not share information about transplant options. It is a HUGE equity issue. I strongly believe those of us on the forum are outliers. We have the financial resources to have web access and the ability/drive/whatever it takes to seek out information. People of color in the US are more likely to live in poverty and have higher rates of CKD. Often due to lack of access to health care. Undiscovered and untreated high blood pressure and diabetes disproportionately impact communities of color and poverty. People in poverty are less likely to have the resources needed for home dialysis.
Great information. About the home dialysis situation. I know that referring providers get an incentive to get people on HHD and have them stay. And it is a big chunk of change. Although I hate to admit it, I think that it affects how and when people get pushed to go on HHD.
The problem is much like national infrastructure for other things like electric cars, the HD centers and not set up to take a big influx of new people and have them successful. The process for PD is much easier to learn, and the patient is in and out of the center in a short time, with much less needed support. Unfortunately, PD is not permanent, Nd prone to infection, and patients will have to either transition to HHD or in center.
I know from coming just out of the training, that unless you have a very savvy caregiver, there is much more extensive one on one care needed for success for HHD in THE HOME. If the centers are being mandated to get people in and going through, it will only hurt the patient. Both in centers and Home in centers are short staffed or are going to a less 1:1 approach. My center right now is training 3 people at the same time to do HHD. I wish them the best. They will be fine incenter but wait until they get home. Yikes!
What should be happening is a bill that legislates paid in home, one on one care such as a traveling med tech to come out to the home. Fortunately, my center has one but they are being forced to take on more patients, and not hire more staff. Right now, I have my med tech who has been with me since the beginning, coming out every morning I do dialysis to place my needles and check pressures. After that, she leaves, and we are on our own. We are doing ok, had some disasters. But know I still have that support makes all the difference. I do not think this will continue with new patients.
As far as centers sharing information about transplants: The very first day I was there, the social worker came in and asked if I knew about transplant and what was my status. I am listed with 2.75 years on. She said she tries to mandate everyone to get listed. She gives you a big packet on transplant and there is information all over the clinic. They are only required to share information as needed with the transplant people and they actually do my blood draws required for staying on the list and they send them off and the report the results. They are very supportive of transplants.
Sounds like you got a good center. Since the two companies are so profitable, not every clinic does transplant outreach, especially to people of color. The horror stories are pretty scary.
My Clinic also makes us very aware of Transplant...Not sure what resources are not available to those in need as Medicare pays for Dialysis and Transplants, just need compliance...Home Dialysis is always offered to those who are Candidates, but it does require a certain level of storage space in the home, which some lower income may or may not have..Not sure it has much to do with being a Person of Color as much as it has to do with being a Person of Poverty...
Ummm it is now legally required for each clinic in USA to inform all new patients of each modality or treatment (PD, HHD, Transplant) even if not offered at their specific clinic. This has been a requirement since 2018? Was not the case when i started dialysis over 21+ years ago. They also hired techs right off the street with no training. While someone learning cosmetology is required to have more than 1000 hours of training, pass a test and be licensed to work, dialysis techs at that time needed no training or experience at all. We have come a long way since then!
They still hire techs off the street. There is no degree required. My kiddo was offered a job and turned it down. While there may be a legal requirement, there are still enormous equity problems in ckd care. We didn't get rid of racist egfr until last year. I just love how middle class white folks keep saying there is no racism in ckd care. The stats show that isn't true.
Yes, the racial disparities are horrendous in many areas. They can hire off street but required to complete training and become certified within 6 Months (I think) to continue employment.Blessings 😊
in a lot of cases especially the ones ive seen personally a rich white doctor will pencil out a person of poverty and or color in favor of a white male or female with private insurance and money.ive gone head to head with an administrator over that and gotten the royal brush off.
I have a web friend who was not accepted for a deceased transplant. She was Not approved for the list. They told her they would do a live transplant. She worked with an organization that only helps people of a certain religion get transplants. Less than a year later she gets a deceased kidney, without ever being on the wait list. She currently traveling around the world. Money CAN buy a kidney.
I think Donors can request who their kidney goes to...She was either the same Religion or maybe she was on their list..Was this transplant done in the US ?
Somebody might have Donated to her specifically...She wouldn't have to be on the List...Just like if somebody matched you and wanted to Donate to you, there is no List
It was a deceased donor, not a live donor. Rich people are somehow able to bypass the list to get deceased donor kidneys. I don't know how she did it, other than this religious organization got it for her.
We've been very blessed - my hubby was transplanted in inner city hospital, VCU in Richmond, VA . The doctors there are mostly non-white; yet, they were colorblind and age accommodating when working with my white and "old" spouse. So very grateful. The mid Atlantic region is very multicultural now - our doctors are either Asian, Southeast Asian, or of African origin. The white population will soon be the minority group in the commonwealth. And the region is an economic powerhouse - the international mix is good for everyone. I truly hope that the day will come when everyone is respected and valued no matter their race, sex, age, etc. There is much room for improvement.
The biggest problem with Transplant is their is not enough Donors...I wish they could get the Artificial Kidney Implant ready to go...wouldn't help everyone , but could surely help most...Sad that they can't get the funding they need, largely due to Dialysis Lobbyists fighting them at every turn...and they Donate to Politicians and in return they keep Dialysis Centers in a very lucrative buisness...I think most Surgeons.. of every Race.. would be delighted to save so many lives from this horrible disease
We have two donor problems in the US. First we are an opt in country. Many other developed nations are opt out dinars, everybody is a donor unless you opt out. In the US, nobody is a donor unless the opt in. Also, the US system is so disorganized that many good organs go into the trash. We need a complete overhaul of the transplant process. That's about as likely as universal health care in my lifetime.
Yes! I'm a big advocate for the Artificial Kidney Implant. It would benefit so many people, including those who aren't eligible for a transplant. And that device also doesn't require the recipient to be on immunosuppressants. It would be a huge improvement over current dialysis approaches.
I'm a white, well off, female and while I had been active on the list I lost too much weight while in the hospital so now I'm inactive while I try and regain. I was on PD for 6 months until it failed, sent me to hospital, and now I'm in center hemo. Yes, I believe people of poverty are discriminated against. Yes, they might have Medicare but unless they can afford the immunosuppressants they will never see a transplant. The cost of health care in this country is ridiculous.
I'm surprised they put you inactive for losing too much weight. I've had a terrible time getting on the list because of my weight. Two of the three programs in my state won't even see you unless BMI is below 30. Mayo says they go up to 40, but mandate bariatric surgery first and meeting a specific BMI weight before transplant. Everyone with a BMI over 40 is considered morbidly obese or having class 3 obesity. At 220 I was considered EXACTLY THE SAME as someone who was 1220. I already have no colon, an ileostomy and dehydration and malnourishment so I'm not a candidate for bariatric surgery. I've never seen a BMI low limit for transplant.
My BMI right now is 18. I weighed 95 before hospital and now weigh 85 and that’s with gaining some weight. I’m only 4’9” with a very small frame. I need to weigh about 90 to 95 to go back to them and be re-evaluated.
Patients should get listed or aware of transplantation when their GFR hits 20. Not at the dialysis center. Unfortunately, many low income patients only find out they have ESRD at the hospital..
Yep. We are the only developed country without universal basic healthcare. There used to be two, then apartied fell. People without access to healthcare don't get annual physicals or blood work.
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