Do we need a famous spoke person?

Hi Everyone

I’m sure we all have seen the ads on TV or print where a movie star or a sports persons or a well know news person takes up a issue.

Do the folks on this page feel that if someone that was really well know would speak on behalf of dialysis, both pts and staff, and even companies. Would help get the face of dialysis on the TV? And help get the things needed to get more pts home and centers to stay open 24/7?

bobeleanor :idea:

will tell how my dr trip went later today Thanks to all

I know there are but they come out speaking in the media rarely…most likely they go to conventions to speak, but I think if more spoke through media channels like the television just maybe just maybe that would have an effect.

Hey Gus

Are you saying that people on dialysis have people who people outside of dialysis would know? And why can’t we see see them on TV or the print media? Can you give me a name or two?

The new ads I’ve seen on TV have Patti Labelle talking about diabetics. This is more of what I think would help. When I was in the home center . The company asked two pts to come in and tell there story. They have a film crew to film the spot. When I go to the center next week I will ask if they are running the spots. I think there were going to see if they could run these. But I have only seen 1 ad for a dialysis company.

bobeleanor :smiley:

Most celebrities I’ve heard about seem to get a kidney transplant pretty quickly. They don’t spend much time on dialysis.

Patti LaBelle is probably getting paid by the One Touch folks to tout their meter. I suspect most celebrities who are advertising products are not doing it for free.

Patients–even celebrities–who are on dialysis have privacy rights and should not be “outed” by anyone else. I hope that no one outs someone who hasn’t outed himself/herself. Most of the patients that have come out about kidney failure have had transplants. I suspect this may be because of some of the negative attitudes about dialysis that might keep them from getting jobs. Those that I know who have announced their kidney disease include:
– George Lopez, TV actor, was on dialysis and got a transplant from his wife when he had kidney failure. He is the current NKF spokesperson.
– Alonzo Mourning, basketball player, got a transplant from a relative when he had kidney failure. He was an NKF spokesperson
– Gary Coleman, actor on Diff’rent Strokes, was on PD, had a transplant, had the transplant reject and I believe has been re-transplanted. He served as an NKF spokesperson for a while.
– James Michener, the author, was on dialysis and chose to discontinue and died.
– Art Buchwald, the humorist, was told he he had kidney failure and in February 2006, chose not to do dialysis and entered a hospice to die. In April he was still alive and interviewed for National Public Radio. In June he left the hospice and when interviewed said his kidneys were working again. He didn’t say it (or may not have known this occurs occasionally), but apparently his was a case of acute kidney failure.

Ones that had kidney failure but didn’t let the general public to know about it include:
– Erma Bombeck had PKD and was on dialysis. She participated in local NKF affiliate fund raising events, but didn’t want it to be shared nationally. She got a transplant and died.
– Sandra Dee was on dialysis before her death, but I don’t believe many knew it until it was announced that she died recently.

Other actors/actresses have been spokespersons because of family members who have had kidney disease/kidney failure:
– Danny Glover for his father related to anemia
– Delta Burke for her grandmother who was on dialysis

What about Steven Furst

he’s on dialysis and is the co-host of KidneyTalk

HI everyone

Beth are you saying that being on dialysis is looked on in a negative way?
If so why? I 'm not ashamed of being on dialysis. It just something life hands people. I really don’t understand? :oops:

Hey Bill
His name did not mean anything to me, but I look him up and now see what he has done. Bill , when did you get active and what do you work for, kidney problems or dialysis or both?

I think what I am trying to say, would dialysis be helped if aired on tv? Like other health problems, cancers, aids, JD, Diabetes etc.

I recall when I was a child I was ashamed of my health problems. But I was a child and the world was a much different place. I wish sometimes that I had the information at my finger tips then as we do now.
bobeleanor :oops:

Some people don’t want others knowing about any health problem that they have. This is why when you go into the doctor there are strict rules about how private health information is shared. I don’t think anyone should be ashamed about having kidney failure, but people with kidney failure have been discriminated against. I suspect part of this is because people don’t know anything about it except what they hear on TV or read in papers. If you didn’t know, you’d think that everyone with kidney failure dies right away if they don’t get a transplant. We need to change the perception and it is always terrific when someone on dialysis does something to disprove the misperceptions.

A few years ago a dialysis patient rode his bike from CA to FL. People were amazed and impressed. He wasn’t a celebrity…just a teacher. It got a little press, but not nearly as much as when Alonzo Mourning got his transplant and continued to play basketball. This makes the general public believe that getting a transplant cures kidney failure. One of the things we hope to do with this site is to show patients and professionals that people with kidney failure who are on home dialysis can live full lives.

Maybe it would help grow home dialysis if some of you had stories in the news (paper, radio, TV). From the Legislative Action Center you can put in your zip code and find the national and local news media that you could contact to let people know that home dialysis is a terrific option.

I would say my first step to getting active was joining Dale Ester’s Dialysis_Support listserv email list (now a Yahoo group )
in I think 1996, that was about a year after I started working through the carpenters union. My first goal was to get internet access while dialyzing. One thing lead to another and I ended up on the Trustee Board of my provider the Northwest Kidney Centers in December 1997.

In the summer of 1998, the West Seattle Kidney Center opened about fifteen blocks from my house – it was the first center that I know of that offered internet access at every station and a couple loner laptops for dialyzor use during treatment.

I have gotten a lot out of being involved as a Trustee. I advocate for people on dialysis but I also feel I have a duty to work for CKD education and disease prevention. I am proud that the Northwest Kidney Centers is ramping up a CKD program for the Seattle community. NKC’s vision is to be the model in the renal field and I think that means providing world class CKD5 care and work on CKD 3 and 4 issues. It makes no sense to me for Medicare or NKC to show up suddenly at the onset of dialysis we need to get involved sooner.

I also look forward to the day that I can share with you my passion for research and tell you all about what we are doing here in Seattle to advance the state of knowledge.

And I do think that it would bring hope to people facing dialysis if dialysis was portrayed on TV in a comprehensive way - that being under dialyzed is very hard but being well dialyzed is just inconvenient. A famous person could get that message through but rather than hoping, that a Hollywood A list type goes on dialysis I think we should hope that one of us gets famous. How about it Bob … do you have any desire to go into acting?

Or we can all hope that Steven Furst gets some meaty roles and wins back to back to back Oscars all after switching to high dose home hemo.

Have you heard of the rock band the Kinks? Check out the most recent KidneyTalk and hear Peter Quaife talk about his experience on dialysis:

And next Tuesday I will be the guest on KidneyTalk - I was interviewed back in April when I was at a California Dialysis Council meeting in Palm Springs … I’ll be interested in listening just to remember what I said.

What would be nice is that these kidney dialysis celebrities get a chance for a role maybe in a movie about their life from beeing normal good feeling independent person without dialysis to the point of loosing their kidneys and starting a whole new life with ESRD…a movie would be great, would educate, inspire, and motivate the public about what’s going on in the renal community…

Hi Everyone

While I was in my home training center ,pts were brought to shot what I thought was to be a TV spot. I will ask next week.

Is there a week in the yr. that is set up to tell people about dialysis?

I would not have any problem going on air letting people about dialysis. I need to get more into the pages that you good folks post on this board.

bobeleanor :smiley:


Just click on the renal support network page. thanks, It is now bookmarked.

bobeleanor :smiley:

March is Kidney Month. During Kidney Month, organizations do a lot of public education about kidney disease, early identification, and prevention. Here’s information from the National Kidney Foundation:

There used to be an National Organ and Tissue Donor Awareness Week in April. However, in 2003 Bush made April National Donate Life Month.

There is no week or month highlighting how people can live good lives on (home) dialysis. I doubt anyone has promoted this idea. Maybe its time has come.

And don’t forget about World Kidney Day. The first World Kidney Day was earlier this year and the next World Kidney Day will be March 7, 2007 - Mark your calandar.

Ooops. Forgot that one. But again, it’s on detection and prevention which are laudable goals and much needed. However, I want people to recognize how home dialysis can give people who need dialysis more freedom to live their lives around dialysis rather than living their lives for dialysis.

“Lola” I LOVED that song! Thanks for the link Bill. That is one Podcast that seems to come through loud and clear. Can’t wait to hear you on Kidney talk! :stuck_out_tongue: