RSN Inaugural National Patient Meeting

Health, Happiness & Hope: Inaugural National Patient Meeting

by Lori Hartwell

Renal Support Network (RSN) and the National Renal Administrators Association (NRAA) decided to team up and produce the first concurrent national patient/professional meeting. The vision is to bring opposite ends of the spectrum together in order to share experiences, goals, support and unity.

September 30 - October 2, 2004
Adam’s Mark Hotels & Resorts
Denver, CO

The goal of RSN’s meeting entitled Health, Happiness & Hope is to educate kidney patients and their families, provide hope for a better tomorrow and inspire them to achieve their goals. Not only are healthcare topics going to be covered, but also life issues and patient advocacy, because RSN wants patients to get involved, understand issues and advocate for their needs.

The RSN meeting agenda will include many topics but listed is a preview. “Health” is the subject matter on September 30th and will include topics such as Seven Secrets to Successful Care, Taking Dialysis Home, Living Donation, Taking the Mystery out of the Dialysis Machine and “Be an Expert” Lunch. “Happiness” is the subject matter for October 1st and will include topics such as Achieving Your Dreams, Financial Planning for Your Future, Getting what YOU Want from Healthcare Professionals and How to get a Good Night’s Sleep. “Hope” is the subject matter for October 2nd and will include topics such as Providing Hope: Ways to Help Fellow Patients, How to be an Effective and The Medicare Program and How it Works For You. We will have Casino night and Entertainment. Come and meet fellow patients and family members.

The Renal Support Network and its participants would like to have you come share this experience with us. Kidney patients, family members and friends are encouraged to attend this Denver experience and to communicate the message of Health, Happiness & Hope.

If you are a patient or a family member register early, before September 1, 2004, and the cost is only $65 per person for all three days! Visit, call 818-543-0896 or e-mail to request a registration brochure.

How did these two renal organizations get the idea to bring professionals and patients together to foster patient advocacy? There has never been anything like this before that I am aware of. Why now? Will they do more than hold annual meetings? The meeting agenda speaks of “real” communication bettween patients and professionals and patients speaking up for education and patient rights. Such is not welcomed by professionals in many units currently as confirmed by patient posts on all the renal boards. There’s beena big prroblem in this area. Is this a sincere effort for change or just another ploy for more reimbursements?

I have been a patient for over 35 years and have spoken at hundreds of professional and patient meetings across the US.

If a decade ago, someone had asked me if the patients and administrators would partner up to maximize resources and coordinate a conference together, I believe there would be some hesitation on my part that this would become a reality. In today’s environment, the renal community has a plethora of challenges at their doorstep. It is imperative that patients and renal care professionals team up to meet the quality care issues facing the renal community.

I have always believed the most effective way to hold a patient education meeting is by hosting it at the same venue as a professional meeting. You have many of your speakers already attending, professional meetings obtain funds more easily than patient groups and the patients will have the opportunity to visit an elaborate exhibit area that has numerous renal care vendors displaying their latest technology/services.

One evening, I shared my dream of patients collaborating with a professional meeting with the National Renal Administrators Association (NRAA) leadership. Upon discussing this idea with their board, the NRAA came back and said they wanted to give this unique collaboration a shot.

Patient advocacy, participation in their care and a dose of hope is needed in this country, as well as for healthcare professionals to understand the many issues/obstacles patients face. Renal care professionals are making a living while kidney patients are trying to make a life.

The vision of this joint meeting is to bring opposite ends of the spectrum together in order to share experiences, goals and support each other’s need. We all know that healthcare professionals are the life-line for the patients. They should supply the best quality care possible and be supportive and respond to patients’ concerns. This system should and must work both ways. Patients need to support healthcare professionals and all of the efforts they make in providing quality care with the increasing obstacles they face such as, the nursing shortage; reimbursement and new technology that will help improve care, but are unaffordable. The best way for the two groups to truly understand each others issues is to bring them together in a setting where they are equals.

I hope this answers your questions.

I hope you will join us in Denver and help make this meeting a success! If this format proves to be helpful to patients and professionals and hopefully it will become a tradition. Visit

Hi Josh,

I’m going to be speaking at Lori’s meeting, and am very excited about it! You should plan to attend!

You mentioned a “ploy for more reimbursement” in your post. In 1983, Medicare started to pay for dialysis using a “composite rate” meant to cover buildings, supplies, staff salaries, and lab tests. This rate was set at $130 per dialysis treatment, and was supposed to create an incentive for home dialysis (because it paid the same for home treatments, which cost less to do).

That was 21 years ago. Today, the composite rate is STILL about $130–which, according to a calculator you can find on the U.S. Bureau of Labor Statistics website (, choose “Inflation calculator”), is now worth about $68.

There is a nursing shortage, and it’s hard for clinics to find and attract good staff when their revenues are capped. Dialyzers are being reused. Techs have replaced many nurses in clinics, and staff turnover in the industry is probably in the neighborhood of 25-30% a year.

Clinics are now at the point where they lose money on Medicare-only patients and make a profit only on patients who also have private pay insurance, usually through their jobs. Some clinics have closed, though I don’t know if low reimbursement has been the reason.

It seems pretty clear, though, that all the fat has been cut from this industry, and we’re well into muscle and bone. Reimbursement updates are needed to permit quality care to be delivered–and we STILL need incentives to encourage home dialysis. Right now, more than 90% of dialysis patients receive in-center hemo.