NKF "People Like US" Conference in DC May 4-6

Just to let all know! Hubby Ralph and I attend the conference and it was really great! We met many people from all over the country. Some were Transplant recepients, others on Pd, others on traditional 3 times a week hemo, people on daily hemo, as well as a few like us on Nocturanl.
We had programs on how to tap into the Power of People Like US, Training and Educational Sessions on how to best advocate on issues affecting our health and lives of loved ones. There were experts on communications, governmental relations and patient advocay with strategies and tips on becoming persuasive and effective spokespeople, influencing public policy, how to communicate with elected and governmental officials and working with the media
Kim Carlos-President of KC Consulting shared her experiences and guidance on becoming an empowered and proactive patient/family advocate.
Kent Thiry-Chairman & Chief Exec Officer of DaVita -talked about the improtance of the current pending legislation before the US Congress (seeking to improve the quality of care for ESRD patients as well as the financial stability of Medicar’s ESRD program.
There was a training workshop on effective communicating with national and local legislators and media- this included role playng.
We were able to me with 2 Congressmen and one Congresswomen who are on the Congressional Kidney Caucus. They are with us on increasing awareness of kidney disease and to coordinate federal efforts to prevent and manage kidney disease.
Some of the Guest speakers we met at the Capitol Hill Reception were Vince Curatola (Sack) from “The Sopranos”
Keith Fahnhorst from the San Francisco 49’s
The next day we were pretty tied up with dialysis(since we could not bring our machine{SOMEDAY})
We did get to the NKF Clinical Meeting Exhibit Hall-this was truly amazing-there were many companies there (around 300) from Davita and others to Pharmacutical companies. The ASKYS machine was there but I really wanted to see the Nxstage but that was not there.
It was a great trip and very worth all the information that was provided.
I know do some lobbying in NY State on another issue so it will be easy for me to just move to the national level.
One thing I hope happens is that NKF will send us the e-mail addresses for all attendees by state so we can work on Congress by state.
I was asked to speak last friday night at a NKF annual dinner about our life and how we manage. When the meeting was over our local TV medical reporter asked if I would be willing to help do a piece(segment on nocturnal). Of course I said yes! So I guess I starting already!
Sorry this is so long but I really wanted to let you all know about the conference.

Bill Peckham- I met a man from Spokane Wa his name is Duane Sunwold, he will get in touch with you to work on things with the Northwest NKF.

I have also created a we site if you wish to look at it.

Hi y’all,

Pat, I’m so glad that you were pleased with your experience and found it valuable. :smiley:

The legislation that Kent Thiry was talking about is the Kidney Care Quality and Improvement Act of 2005 (S-635, HR-1298). What this bill needs right now is more sponsors–and all of you can help!

Go to the Legislative Action Center on this site (http://capwiz.com/meiresearch/home/). From here, you can click the link on the bill to send a request for sponsorship to your Congressperson and your Senators, or even send a letter to your local newspaper (click the “Media Guide” tab to do this).

The more sponsors the bill has, the better its chance of getting passed. So, even if you can’t or don’t want to go to Washington, you can still do something to help kidney patients anywhere in the U.S. You can also call your Senator or Congressperson and ask to meet with him or her when they’re in their home office. I just did that today myself!

Way to go Patricia!!

Thank you for the report. I’ve been wondering how it went. I will look for contact from the person you met from Spokane. His Congresswoman is McMorris and is one of the three Washington State Representatives that has yet to sign on to HR 1298. I’ll be in DC twice in the next three weeks - I’ll be meeting with aids early next week and I hope I can use my meetings next week to set up meetings with actual Representatives when I’m back on the 13th and 14th.

What I’m hearing is that we need to push hard now for HR 1298 and S 635. What I’m hearing is that there is a window of opportunity and if it is open (there is some concern about that) it will be open for a short time, hopefully things will line up and the Congress will take action on the Bills this year.


Great Job! I am glad your experience was so positive. You have inspired me to get off my duff and start advocating again.

Bill, do you have any target dates we should be working on to get this passed?
I had my dialysis center givel me 4 dialyisers (Kidney’s) that there would have used for training purpuses (sp) and I am making appointments with Clinton, Shumer, McNulty and Sweeney at their local offices. I will have a prepared statement and give each a “Kidney” and tell them this is how dialysis patients survive. I will ask them to please put their names on the bills and become cosponsors so the bills can be passed THIS YEAR!!!
Anyone else that has any ideas, let me know. I do know from working with NY State Legislature that the more “in your face” contact you do the better the chance the bills will pass.

What I’m hearing is that the success of the Bill is tied to the budget cycle. Without getting too into details I am only beginning to understand the Bill’s best chance to succeed will be this fiscal year - which for the Federal government means from now until October.

One thing I’ve come to understand is that for 1298/635 to get signed into law it will need to be attached to another, more important Bill. I haven’t heard anyone say 1298/635 will pass on it’s own and get signed by the President, although that would be great. I’ve heard the ESRD program described is “budget dust”. The ESRD program at less than 20 billion dollars a year is too small to be a priority for the Congress, the administration or the media . The way I understand the process is that instead the hope is that 1298/635 will become a small part of a larger Bill - for instance a part of a Bill that would legislate technical corrections to the big Medicare Modernization Act from last year.

So to become a part of a big Bill our Bill needs allot of cosponsors - the more cosponsors the better the chance that it will get through committee and/or become an amendment or even get thrown in during the conference that takes place between between the Senate and the House once they pass paired legislation. For instance once each chamber passes a Federal Budget the two chamber create a committee to hammer out details.

The challenge we advocates have is that our bill - HR 1298 and S635 is getting unbalanced in the Democrat/Republican count. Our Bills are getting too many Democrats and not enough Republicans. I am part of the problem in that Washington State where I live has 9 Representatives to the Congress and of course 2 Senators. So far 6 of my State’s members of Congress have cosponsored our Bills - all 6 of the Democrats. None of the three Republicans have signed on (both of my Senators have signed on - they are both Democrats).

I need to work on the Republican members of Congress from Washington. My big fish, the key person to get on board, is Rep. Doc Hastings a fiscally conservative Republican from Eastern Washington. If he got on board then maybe other like minded members of Congress would open their ears to Congress’s responsibility to meet the needs of people on dialysis.

The key, beyond numbers of sponsors, is having the right sponsors…which in today’s world means sponsors on the right. If the Bills begin to look like “Democratic” Bills I think their chance of success decreases.

There is no federally funded education program for people with kidney disease. Studies have shown that only about 25% of patients report having heard about any home dialysis options. S 635 and HR 1298 would fund education to Medicare beneficiaries to help them keep their kidneys functioning as long as possible, to help those facing kidney failure understand all treatment options (not just those offered at the clinic where their nephrologist practices), and help those on dialysis learn how to be active participant in their care. It would also provide funding for the Institute of Medicine study of the barriers to home dialysis. This should help the renal community know who and what to target to overcome these barriers.

In today’s deficit environment, We need to think of the costs and savings when advocating for this and any bill. Congress says it wants to fund only those programs that do not increase the federal budget (“budget neutrality).” Congress has expressed interest in saving money. So we need to show Congress that although some provisions will cost more, others will save money.

For instance, promoting home dialysis is a win-win for everyone. Research and ongoing data collected shows that home dialysis saves Medicare dollars. The annual costs per patient to Medicare for the period of 1998-2002 as reported in the USRDS 2004 annual report was $54,006 for hemo (both in-center and home) and $41,353 for PD, a savings of $12,653 for inpatient and outpatient services. Although the USRDS does not report home hemo separately from in-center hemo, several studies have shown that home hemo costs less than PD.

According to the 2004 USRDS annual report, PD saves Medicare Part A over $4,800 per patient annually on inpatient services and saves Medicare Part B over $7,700 per patient annually on outpatient services. I haven’t seen any studies that separate home hemo costs or savings into Part A and Part B, but this information would be helpful to advocate for home hemo.

I was in DC last week and what I heard is that there are key people whose support would help our Bills.
In the Senate Grassley; Smith; Santorum.
In the House McCrery; Johnson; English; Hulshof; Thompson.

The strategy seems to be that there will be a point when decisions have to made about which measures (that cost money) will make it in the budget and which will be left out, when that point comes and the Congress is making the final decisions then we want them to remember Kidney patients.

Our best hope for them to remember us is to get allot of cosponsors.

Not to sound defeatist but even if this Bill doesn’t pass there will be other Bills to advocate for, so opening up a dialog with your representatives is an investment in the future. Give your Representatives a call – if they are a sponsor thank them; if they’re not ask them to support you, ask them to support Kidney Care Quality and Improvement Act of 2005.

Hi Bill,
Thanks for the input.
I will be working on 4 from NY, Hillary, Shumer, McNulty (who is already on the Congressional Kidney Caucus, and Sweeney.
I am going to try to get an appointment at their local offices and present each one with a dialyser and a lettet about sponsoring the Kidney Care Quality Act. I hope to do this between this week and next.

Right now most of the co-sponsors are Democrats. We need to get more Republican co-sponsors or the bill will be seen as a Democratic bill instead of a bipartisan one. I’ve heard that there needs to be a larger Medicare bill to attach this legislation to or it will be unlikely to move forward. We do have until the end of the 108th legislative session which won’t be over for until December 2006.

Keep plugging away Pat. One thing to keep in mind is that Congress goes into recess for most of August so your lawmakers should be back home - for at least part of the time. One thing to consider is inviting your lawmaker to visit a dialysis unit. When I was in DC I heard about a patient in Iowa who invited Senator Grassley - who is the Chair of the powerfull Senate Finance Committee - to visit a unit and the Senator did just that … here is an article from the Sioux City Journal (this is from a Google cache - the Online Journmal is by subscription):

“Grassley visits Spencer Hospital dialysis unit”
By Russ Oechslin, Journal correspondent

SPENCER, Iowa – Even though his brother-in-law is undergoing dialysis treatments in eastern Iowa, U.S. Sen. Chuck Grassley, R-Iowa, told his hosts at the Spencer Hospital on Wednesday he has never spent an hour in a dialysis facility.

With invitations to visit and learn about six dialysis units across the state, the senator also had to admit to unit manager Carolyn Sheridan he picked Spencer’s because it fit his schedule between town meetings.

But Sheridan and her associates made the best of their 60-minute opportunity to educate the senator on dialysis issues and ask for more funding from the federal government.

Grassley’s education began before 8 a.m. by talking to dialysis patients in the midst of their thrice-weekly procedures.

Attorney Redge Berg, Spencer, has been in dialysis for about a year. Despite that, he continues to work every day. “I can hardly wait to get a transplant,” Berg told the senator.

Berg is scheduled for kidney transplant surgery later this month. All indications are that his wife Diane will serve as donor.

“I feel very fortunate, as so many people will never get a donor kidney. And I don’t know what I’d do if I didn’t have Medicare,” said Berg, who turns 66 next week.

Dialysis costs are between $100 and $130 per session, three times each week, plus the cost of medications, according to Kathy Mehan, a dialysis nurse.

Grassley also listened to Delbert Kooker, 77, of Cylinder, explain that the dialysis schedule really “messes up my fishing and gardening time.”

Grassley used the opportunity to explain that he has always been involved in discussions about donated organ distribution, and whether a national or regional system would work better.

Grassley explained that he intends to support the regional concept because experts tell him Midwesterners are generally healthier as they take better care of themselves.

Nurse Lisa Ducommun showed the senator the $15,000 dialysis machines, the water purification system and the artificial kidneys used in the process. She explained the costs of each – noting how difficult it is to keep costs in line with Medicare reimbursement.

In the Spirit Lake facility run by the Spencer Hospital, Sheridan noted that, because it is a stand-alone unit, all the expenses of operation, all utilities and even the cost of mowing grass must be covered by the billing. In Spencer, much of those costs are absorbed in other areas.

Sheridan questioned how a for-profit organization could serve the patient with the same quality of service at a profit and pushed for Grassley’s support on bills currently in Congress that deal with kidney care quality, education and federal reimbursements for treatments.

While Grassley didn’t address Medicare reimbursement directly, he did explain to patients and staff members that beginning in January all Medicare patients will have the opportunity to sign up for prescription coverage, to help cover what is now out-of-pocket expense.

Although it is a voluntary program, Grassley termed it “a no-brainer,” especially for those living at less than 160 percent of the poverty level or spending more than $3,600 per year on prescription drugs.

The senator also promoted the idea of health savings accounts for those under 65.

In a brief news conference before heading to a town meeting in Sibley, Iowa, Grassley explained that he would be “leaning against voting for the bill” on stem cell research which has just passed the House and is threatened by a presidential veto.

The senator termed himself “a 71-year-old embryo. And we need to understand that there is public funding for existing lines” of stem cells, Grassley said, adding that there is also a lot of research going on in the private sector.

“I lean toward a ‘no’ vote out of my respect for life,” he said.

One thing that I did not know is that Senator Grassley has a brother-in-law on dialysis. This is something I have found while advocating - many people have a personal connection to kidney disease and unfortunately the number with a connection keeps growing. This article also points up something else I’ve experienced while advocating – most lawmakers will change the subject. It is common for them to switch to talking about stem cell research or some scheme to increase transplants – very few people want to talk about money.

When a lawmaker tries to change the subject try not to get sucked into another discussion. I try to bring the conversation back to my issue – politely but insistently. If I was there during Grassley’s tour, and if I had my wits about me, I would have asked the Senator a question – “ Senator why should the ESRD program be the only Medicare program with out an annual inflation update?” I think it is a good strategy to ask a lawmaker to explain the status quo because it puts our Bill in context.

Thanks for the info. I certainly will use this info.
I just need to get a few moments to sit and wright some things down before I go see the legislators.
I work 25 hrs a week, have a travel business and take care of Ralph with dialysis 6 nights a wee, besides watching and answering the message boards I try to put some thoughts down everyday.
Pat :roll:

Pat - there is a saying: If you want something done ask abusy person :slight_smile:

We just received a letter this week from Medicare telling dad that come January 2006 there will be no more medicaid coverage for drugs and he will have to go under the Medicare system. No choice was given. I believe this is going to end up costing the patient more but the letter didn’t give the details so will have to wait and see.

Just last night I was reading something about that.
Information will be forth coming.
I am at work now but sometime tomorrow I will send the info to you.

Everyone on Medicare and Medicaid should be getting letters about the new Medicare Part D benefit. Those with SSI or who get help from their state to pay their Medicare premium will get letters soon to.

Starting Jan. 1, 2006, drug benefits for those who are “dual eligible” (Medicare and Medicaid) will be paid through Medicare Part D. Medicaid drug benefits will end December 31, 2005 for those with Medicare too. Those with low income and limited assets won’t pay any premium or deductible, but will pay a small co-pay for each covered drug ($1-$2 for generics/$3-$5 for brand name) depending on their income. If he has to spend $3,600 of his own money out-of-pocket during the year, he won’t have to pay any more co-pays that year. Medicare estimates it will pay 95-97% of the covered drug costs for Medicare/Medicaid folks.

Others with higher income and somewhat limited assets will get extra help from Medicare and it’s estimated that Medicare will pay 85% of their covered drug costs. People with Medicare who have too much income or assets to get extra help will save less. There is a calculator on the Kaiser Family Foundation website (www.kff.org/medicare/rxdrugscalculator.cfm) that will tell you what percentage you will pay with Part D based on what you pay for drugs now assuming all your drugs are covered. The calculator is using a monthly premium of $35 (a previous estimate) instead of $37 so your savings will be a little less.

My recommendation is to review the plans and the drugs they cover when they’re posted on the Medicare website (www.medicare.gov) this October. Choose the one with as many of drugs as possible, keeping in mind that his needs for drugs may change over time and if he changes treatments. It’s not a bad idea to talk with the doctor about what drugs he might need in the future and look for those as well. Sign up starts November 15. If he hasn’t chosen a plan by December 31, he’ll be assigned one at random. He’s luckier than most because people with Medicare and Medicaid can change drug plans any time whereas most people can only change once a year. If his Part D plan stops covering his drugs, he can get a different plan. By the way, there must be at least 2 choices in each area.

Medicare Part D is not just for those with low income and limited assets. Anyone with Medicare can sign up. It’s just that those with higher incomes have a monthly premium ($37) plus a $250 annual deductible, and they pay part of their covered drug costs. How much they pay depends on their income and assets and how much their drugs cost. Although I would have loved to have seen something much less complex, I think anyone should save money if they sign up for a plan that they’ve researched to be sure it covers most of their drugs. Those who should save the most will be those with lower income that had no Medicaid or other drug coverage before.

Incidentally, those with drug coverage through a Medigap or employer/retiree plan should get notice about how their coverage compares with Part D. If Part D is better than their current plan, they might want to sign up by May 15, 2006 or during the first 6 months they have Medicare. Otherwise, they may have to pay a higher premium of 1% per month with no cap for months they delayed signing up.

What should people like us do. Ralph has Social Security Medicare part A & B as well as health insurance from when he retired from NY State local government (GHI) The GHI now covers what medicae does not as well as his drugs ($20.00) Copay. Not really sure how the new plan would work for us. Any ideas?