The Obama administration should respond to the Harvard letter

By Bill Peckham

With regard to the letter (see WORD document or web page and RenalWEB discussion) from the Steering Committee of the April 23-26, 2009 conference “ESRD: State of the Art and Charting the Challenges for the Future”, (the conference was held in Boston and was sponsored by the Harvard Medical School Department of Continuing Education).

Dr. Blagg's note to RenalWEB should be read before reading Renal Business Today's followup on the lack of response from the letter's recipients, Nancy-Ann DeParle, director of the White House Office of Health Reform, and Barry Straube, MD, chief medical officer of the Centers for Medicare & Medicaid Services. The RBT article makes clear that the docs who wrote the letter expected their support would have immediate effect and that they are disappointed that people don't seem interested in making the provision of dialysis better.

I'm glad the new docs are not the same as the old docs. Still let us remember. Scribner was booed. Scribner's ideas were ridiculed. Scribner was disparaged by the docs who preceded the authors. I think Scribner is owed an apology. However, I agree with the larger point, that the Obama administration should act on the letter's message. Scribner would not give a wit who got the credit and Scribner would undoubtedly be as charitable as Blagg in welcoming all comers to his point of view. Clearly, Scribner and Blagg are better men than I.

It's too bad this letter wasn't written 30 years ago. It's too bad that 30 years ago docs from National Medical and the esteemed Harvard Medical institutions were disparaging home dialysis and the need for more dialysis. It is too bad that they were doing this back in the late '70s when their support would have made a huge difference. It is too bad that when it mattered 30 years ago the east coast medical establishment came to a very different conclusion about volume control and instead focused on hemodialysis adequacy as measured by urea removal.

I have an urge to hold the East coast establishment in a headlock and force them to admit Scribner was right. I agree with everything in their letter and I am delighted that the conventional nephrology point of view is moving away from Gotch and towards Scribner. Hopefully, it's not too late.

Comments

[roberta mikles]

Bill, first, glad to see you back and that you are doing well.

Bill and others. I am surprised no one has responded to this letter considering we know how much power and lobbying money has gone out from the dialysis industry. Some may think just because of that there would be a response. Some might think because DeParle was a Davitian that there would be a response. Some would then think this is """just an important aspect of healthcare that needs to be addressed""""" that is the truth!

Maybe things will only move if one of those elected officials, government department heads, etc. are placed in a situation where they need dialysis and then, and, only then, will they realize that this 'life-sustaining' area of healthcare needs to be addressed. Of course, we continue to have a lack of oversight to ensure compliance with regulations and the newly revised Conditions will not take the place of an inspection. No one knows if their facility is providing care that is regulatory compliant. Continuing to receive call from all over the U.S. with incidents that go unnoted by staff.
The world of dialysis needs a total overhaul just as our healthcare system does and if the Harvard letter goes without response, then shame on our government. Speaking of Harvard, Dr. Lucien Leape has accepted the Florence Nightingale and Dr. Codman Award - Patient Safety Day - July 25th www.patientsafetyday.com
Roberta Mikles, RN
advocating for quality safe care

[Bill Peckham]

Hi Roberta - It's nice to feel like writing and to be able to dialyze overnight so I have time and energy.

One would think the letter merited a response.

I'd like to just say that we should hope someone on dialysis is elected to high office rather than hope someone elected to high office suddenly needs dialysis. There is no one I would wish CKD5 on.

[roberta mikles]

Bill, I, quite often, think, and truly believe, that those who have not experienced dialysis, or have a family member on dialysis, do not completely understand all the problems from lack of oversight of outpatient clinics to needing daily dialysis for better quality of life, etc.
Roberta Mikles, RN
advocating for quality safe care

[roberta mikles]

After receiving many emails and calls regarding the above mentioned letter, I wanted to further state the following. Many advocates, including patients, and non-patients, have been trying to get someone to realize the severity of infections within the dialysis-patient population. Having reviewed many surveys, from throughout the US, as well as speaking with many, throughout the US, there remain a large concensus that belives basic infection control practices being implemented, within many facilities, is greatly lacking. Perhaps, if we take a more simple look at this problem of acquired infections, maybe we can decrease the numbers of infections that kill patients or result in a decline in their quality of life. My recommendation is to start at the facility level and have an infection control specialist observe. I am sure the breeches in practice will be seen. Management staff, at each facility, must be thoroughly trained in infection control practices which will result in correcting those practices that place patients in harm's way. Management must be able to intervene, without getting caught up in facility staff dynamics, or getting caught up in the facility culture, as it exists, and be able to address situations with staff. Staff need to be better trained and educated in implementing effective infection control practices during their initial training and orientation. Perhaps, just perhaps, if staff start to implement effective infection control practices we will see a decline in the numbers of acquired infections.
Roberta Mikles, RN
Patient Advocate
www.patientsafetyday.com