DPC Group Conference

What happenned? This inaugural telephone conference was announced a little while ago and only three people showed up this morning at the appointed time. We, as a group of involved CKD patients and caregivers, should be ashamed of ourselves. Me included although I was there. I didn’t do enough to remind others of the group meeting. It wansn’t necessarily my responsibility, but everybody should do as much as they can to bring people together.

We need to come up with methods to better communicate with each other. I know there are many groups on the web where people can discuss issues, and the HDC forums are an excellent example. But here was a chance for people to actually talk to each other, hear each others’ voices and feel like they were part of a vibrant, real-time community. I just would have thought more people would want to participate.

I believe the DPC will try again and I sincerely hope more people will avail themselves of the opportunity to get together. SO even though there were only three people, I’m not going to look at it as a complete failure, but only the first step to something more successful. I hope to hear your voices at the next meeting, whenever that might be. And I promise to make sure I remind others the next time.

Sorry Rich,
I was really going to do it but sat mornings I go back to bed and sleep and catch up. I just forgot.
I will try to remember for next time. I would really injoy talking to others.
Our clinic runs a caregivers group once a month. We meet and discuss problems and try to help each other. We have a nurse and a social worker with us.
We even got together with spouces last summer at one of the homes and had a picnic.
It really does help.
As a result of these meetings the Center is going to start respite time for the cargivers. There are two young women that have young children, work and help their husbands with dialysis. These two ladies really need the time off. What the clinic will do is bring the spouse into the traning room for a week.
So we are getting some help.
Pat

Hey Folks

Rich , maybe you could tell me what dpc is doing to help US, not the companies get more $$$. But US. I had contacted this group some time ago on issues and to be up front came away thinking that this group is no different than the rest. The bottom line is more $$ for the companies.
bob obien

[QUOTE=Rich Berkowitz;14934]What happenned? This inaugural telephone conference was announced a little while ago and only three people showed up this morning at the appointed time. We, as a group of involved CKD patients and caregivers, should be ashamed of ourselves. Me included although I was there. I didn’t do enough to remind others of the group meeting. It wansn’t necessarily my responsibility, but everybody should do as much as they can to bring people together.

We need to come up with methods to better communicate with each other. I know there are many groups on the web where people can discuss issues, and the HDC forums are an excellent example. But here was a chance for people to actually talk to each other, hear each others’ voices and feel like they were part of a vibrant, real-time community. I just would have thought more people would want to participate.

I believe the DPC will try again and I sincerely hope more people will avail themselves of the opportunity to get together. SO even though there were only three people, I’m not going to look at it as a complete failure, but only the first step to something more successful. I hope to hear your voices at the next meeting, whenever that might be. And I promise to make sure I remind others the next time.[/QUOTE]

[QUOTE=bobeleanor;14940]Hey Folks

Rich , maybe you could tell me what dpc is doing to help US, not the companies get more $$$. But US. I had contacted this group some time ago on issues and to be up front came away thinking that this group is no different than the rest. The bottom line is more $$ for the companies.
bob obien[/QUOTE]

Rich,
Unless something has changed, I would agree with Bob’s assessment. I participated in this group’s early conference calls before they supposedly became independent of DaVita. Patients called in from all over the country and when it was their turn to speak, if they mentioned a grievance they were immediately told that they could not bring it up. It was like a big hook came out and yanked them away by the neck before they could speak. Personally, I was appalled at what went on. The DPC individuals leading the meeting insulted one guest after another in this way and it appeared to me that the meeting really was to discuss voting issues related to EPO, and not for the patients’ benefit although that’s what they kept saying, but for the corporations’ profitabilty.

Personally, I would like to take part in a true patient advocacy group- not a let’s help the corporations profit more group.I bet everyone of those patients who called in to those teleconference calls got off the phone and thought, “This is a patient advocacy group???”.

Yes patients should rally together and form a true national organization and state patient advocacy groups as well. I wouldn’t support a single one of the existing organizations as I feel they royally fail to do what they claim to do- advocate for patients.

I see dpc has come out strong for ending the ESRD entitlement. I have an idea - if we end the entitlement and have people stay with their private insurance until retirement, permanent disability or death then let’s limit reimbursement to Medicare approved rates after 30 months. That would save Medicare the same amount as the current dpc proposal. No reason for dpc to not advocate for this small change - totally revenue neutral from the perspective of their corporate overlords. I wonder what their reaction would be to this suggestion.

As you guys may know, I’m all in favor of an advocacy group that’s independent of the industry companies. But we also need to start somewhere in terms of meeting up with other patients. Some of us know each other (and I say that loosely) from participating in groups like HDC and perhaps machine inclusive groups, i.e., NxStage. But it seems that every opportunity we use to meet more people you may find a few more who think alike like you. I surely am not in this to make more $$$ for any particular entity. Even HDC must get money from sponsors to exist. It appears to me that patient advocacy groups are so splintered (if they really independently exist at all) that we always seem to be at square one.

I have never been involved with DPC, nor do I go to a DaVita clinic, but if it gives me an opportunity to coalesce with others to move toward common goals, then it might be worth investing some time to try. The key is not to let DPC control you for the benefit of the company, but to use the company’s resources to forward your goals.

[QUOTE=Rich Berkowitz;14950]As you guys may know, I’m all in favor of an advocacy group that’s independent of the industry companies. But we also need to start somewhere in terms of meeting up with other patients. Some of us know each other (and I say that loosely) from participating in groups like HDC and perhaps machine inclusive groups, i.e., NxStage. But it seems that every opportunity we use to meet more people you may find a few more who think alike like you. I surely am not in this to make more $$$ for any particular entity. Even HDC must get money from sponsors to exist. It appears to me that patient advocacy groups are so splintered (if they really independently exist at all) that we always seem to be at square one.

I have never been involved with DPC, nor do I go to a DaVita clinic, but if it gives me an opportunity to coalesce with others to move toward common goals, then it might be worth investing some time to try. The key is not to let DPC control you for the benefit of the company, but to use the company’s resources to forward your goals.[/QUOTE]

I know what you are saying. Just meeting other like-minded patients could open the door to greater things. I have only heard of one state patient advocacy group that is supposedly effective- MD… In a few other states, CO and AZ come to mind, patients have advocated to get legislation passed that benefits patients. My dream is to see every state form a patient advocacy group.

Re DPC, I would like to know just how independent they are from corporation control. Secondly, why do they still carry the DaVita name if they are now independent of Davita? Re DaVita, I was in two different DaVita units in totally different states. Both units were filthy and the care was substandard. We were given ice for our water from an ice machine that was full of mildew that anyone could plainly see. I find it hypocritcal that DaVita started a group that they say is a patient advocacy group when two of their own units, I’m sure there are more, would not have passed inspection, yet they bill themselves as the # 1 dialysis corp… And I would want the assurance that patients are not going to be silenced as in the previous DPC meetings before they became indpendent of DaVita.

So, I would like answers to these questions and others before I joined. Can you find out about this or lead me to someone who can? I want nothing more than to work with other patients for patient care/rights, but NOT in the manner of the previous DPC group. I want an honest group with no strings attached to corporate control.

Hi this Erich aka Riverdude.

I forgot my password, but felt a need to comment.

I’ve been associated with DPC for six months. They keep the name DaVita so that it is clear that it is an industry funded patient led organization. They are saying upfront that this organization is funded by DaVita and other corporate sponsors. As Rich pointed out HDC has numerous corporate sponsors as does AAKP, NKF, Renal Support Network and many others.

Because of DPC I was able to go to D.C. and tell three Congressman and thre Senators my personal story has I lobbied for HB 1193 and its companion. Because of DPC I will be attending a CMS conference sponsored by the National Kidney Foundation on Interpretive Guidelines - A Community Forum that is being organized with help from our own Beth Witten. When I’m there I will be representing DPC but telling “my” story. They have provided me with tremendous opportunities to advance the needs of all end stage renal disease patients.

I’ve met most of their board members who for the most part are ESRD patients. Yes there are some DaVita staff on the board. Most successful Non profit organization have corporate representatives on their Board of Directors. Their membership provides a direct link to the funders. Without the funders the organizations would not be in existence. Dori, how well would HDC meet its mission without corporate funding?

I don’t see dialysis suppliers as the enemy. Actually, I quite thankful that they provide the services and products that they do.

There probably is a need for a dialysis patient based advocacy group that is funded only by membership donations. Despite the thousands on dialysis, my guess is such a group would never get enough funds to bend a Congressman’s ear let a lone buy a plane ticket to DC. Such a group would most likely succeed on the backs of a dedicated few individuals who would put in thousands of hours. When they retired, such a group would quickly be forgotten.

So for me, my six months with DPC have been tremendous. I believe I am making much more of a difference now that I’m a member.

Erich Ditschman
theriverdude@sbcglobal.net