The Medicare entitlement for dialysis and transplantation, long sought by the renal community, was passed in late October 1972. As an unanticipated obligation for Medicare, it was unwelcome. Still, the CRD (Chronic Renal Disease) Group that was formed to set it up worked hard to get it done before the July 1 deadline. Unfortunately, their consultations with nephrologists (me included) revealed we didn’t know the difference between health care and health care policy. They paraphrased our conversations into proposed regulations that couldn’t work.

Medicare was a fine entitlement, but guided by specific regulations unsuited to end-stage renal disease. When we saw these regulations, we were outraged. No direct payment to nephrologists!  

Phones rang all over the country. We assembled at O’Hare Airport in Chicago to organize our protest. Since I live in Baltimore, I was dispatched to Medicare’s home office as the messenger.

Making headway

Early discussions produced some practical improvements, but still no separate fee for nephrologists. By November, we knew we had to get an organization together. We met along with the American Society of Nephrology and agreed to create the Renal Physicians Association. I was left to lead it. I assembled a Board, as geographically diverse as possible, with private practice and academics represented. We had one transplant surgeon but no urologist, though the name of RPA was intended to be inclusive. Many of the early activists were included. Everyone had to be willing to pay his or her own expenses. Dues were set at $15 per year. Not entirely democratic, but a practical beginning.

We had meetings in Baltimore with Medicare, many with Philip Jos, the leader of the CRD Group, and some with his chief, Irv Wolkstein, who, with a small staff, was essentially the entire Bureau of Program Policy (that has multiplied into the hundreds today). They were not antagonistic, but tried to make the original Medicare rules fit ESRD – or force us to fit into Medicare rules. The sides agreed that a single monthly fee for the overall care of a dialysis patient was the solution to the physician payment problem, but I had to get AMA agreement for the arrangement.

Getting past the AMA

AMA was firmly against any capitation. I did some head scratching on how I could present this in a different form, and finally hit upon the explanation: Rather than capitation, it was like a global fee for normal pregnancy and delivery, or for elective surgery, including preparation and follow-up. AMA sent their letter of approval to CMS, and the “alternate method of payment” came to be. Irv saw to it that it was retroactive to the beginning.

At the same time we were negotiating this with CMS, John Capelli and his New Jersey colleagues filed suit against the Department of Health and Human Services. That at first led to some contentious meetings, but provoked acceptance, and the suit was withdrawn. Without that action, the Department may never have allowed what Wolkstein contrived for nephrologists.

More decisions ahead

There were problems with the complexity of dialysis and the elements included in it. Medicare had detailed rules about “durable medical equipment” which confused them and us. We decided they should not look under the covers of what it took to do dialysis.

Then we began to recognize we had an obligation to patients to be sure our members were as well informed as we could make them about dialysis technology, the internal changes produced by dialysis, and the stress patients felt. We became a professional organization, not just a trade representative. Norman Deane started annual clinical meetings, at first in New York, later in Florida, where we had a day of clinical progress, followed by a day of practice issues. Those meetings drew fewer than 100 attendees, but the reports went to all members. In those days we invited manufacturers to attend, but we had no exhibits. Some did attend, and we formed some important friendships without sales pressure.

With all these advancements and changes, the RPA needed a makeover. We had no staff, and no budget. As we spent more time approaching Congress, who alone could set our fees and change the program, we realized we needed a guide. We managed to employ John Grupenhoff, a former HHS official, now lobbying for health care groups. We could only afford one day of his time per month, but he was generous with advice and making contacts when he didn’t accompany us. I believe we were credible despite our lack of experience there, and we made small progress at a time to reach adjustments that helped facilities operate effectively.

Simultaneous with these activities, National Medical Care was opening dialysis units and growing, to the dismay of some of us, and the eager acceptance of others. Hospitals, in response to Medicare pressure, moved dialysis into outpatient settings.

Leadership changes

I served as RPA president for two years, and then Chris Blagg took office. He had been a partner through the past two years, and I remained on the Board and active in federal contacts, so it was a remarkably seamless transition. The work had been challenging to me both in time and involvement, but for Chris, coming from Seattle, it had to be more difficult. He had to step back from his devotion to home dialysis enough to support other positions RPA promoted for its membership. His Washington state congressional delegation was supportive, proud of being the fountainhead of dialysis care. Chris’s calmness balanced my impatience nicely.

Chris was followed after two years by John Capelli. We all agreed he deserved it, but he was fiery and outspoken, and we feared he would undo some of the precarious alliances we had. Our fears were unfounded. As our leader, John was firm but calmer, and no outbursts occurred, though he may have hinted they were available if needed.

When RPA began, it was viewed by the NKF as stealing their prerogatives, and they were quietly antagonistic. One RPA Board member was in line to become President of the NKF. They said flatly that he must leave our organization to do that. He did, believing together we could have broader influence. ASN, only five years old at RPA’s founding, was not supportive, also thinking we were poaching on their territory. After a while, we were able to see the different roles we play, and tentative collaborations began.

The good, bad of showing our outcomes

Over time, we were successful in gaining new programs. One we thought most important was a dedicated ESRD database. That took numerous meetings and succeeded when we pointed out the claims data used for the database would be valid, thus the data reliable. We looked forward to broad analysis of activities and outcomes. Then we discovered we had put a spotlight on ESRD care that our antagonists were using to demean us. Unintended consequences occur to everything, and we should have thought of that.

It was still a good thing, one that gave emphasis to the great changes in ESRD; our younger, healthier population was now older, sicker, experiencing more problems and facing shorter life than those highly selected early patients – and it was our fault, and many in Congress saw it.

In 1983, new legislation was about to formally recognize physician payment for dialysis as the MCP – Monthly Capitation Payment. And at the same time they cut the rate paid for dialysis, and started the approach that led to bundled payment 28 years later.

RPA grew, the income increased with more members and higher dues; we opened an office, first in collaboration with the American Society of Internal Medicine, who also shared lobbying duties. That was engineered by Louis Diamond, who was involved with ASIM. Later, in the early 90s, we got lucky with Dale Singer, who remains our Executive Director today. She created and managed an effective office and recruited staff to carry on the expanded work of RPA. Now there are practice guidelines that serve as a model for other specialties, training programs, webinars, regular communications, an effective full time lobbyist, and a regularly informative and enjoyable annual meeting.

RPA has become a solid, effective specialty medical society representing the clinical practice of nephrology and improving that practice. Of course I am proud.

In memoriam: former RPA presidents Deane, Dick Freeman, Jim Roberts, and Capelli who served well and deserve a place in our collective memory.