Another Perspective

Things They Don’t Tell You

Why are patients so often kept in the dark?

By 5.30.08

Send to Kindle

If you have a serious, ongoing medical condition, do not entirely believe anything any health care professional -- doctor, nurse, consultant, insurance representative -- tells you. I have been an ESRD patient (end stage renal disease) for nearly ten years, six in the 1970s, going on four most recently, and you'd think I'd know just about everything there is to know about my treatment and my benefits.

Wrong. I find out new things every day. Big things. And I'm not alone.

A few days back, I found myself in conversation on the phone with the office manager for an orthopedist. I was going to a new doctor for a look at a troublesome shoulder, and had to clear up some issues about insurance coverage.

"My husband was on dialysis for five years before he died," she told me. "But they wouldn't cover his dialysis on Medicare," she said. "Not right away. They made us get private insurance, and then we got Medicare later. And that always seemed silly to me, when he had Medicare already."

INDEED IT was silly. I explained to the nice lady that, by 1973, private insurers realized they had greatly underestimated the cost of covering ESRD. So they pressed Congress, and Congress and the insurers struck a deal. Private insurance would cover ESRD for the first 30 months; thereafter, Medicare would take over.

This woman and her husband got caught in the rules. Even though he had Medicare already, he had to buy private insurance for 30 months to qualify for Medicare for his dialysis treatments.

It took her all these years to find out why.

That's common. Why? Sometimes it's sheer ignorance on the part of health care workers. Sometimes it's suffocating political correctness imposed by privacy laws. I got caught up in an example of the latter.

AFTER TWO kidney transplants, I had exhausted my available family donors. I sent out a letter to friends, colleagues, fellow church members, and associates, explaining that I needed a kidney, and asking for anyone willing to donate. I got two volunteers.

One of them was the wrong blood type, but he was still willing to donate to a swap. Explanation: You need a kidney. Your wife wants to donate. She's the wrong blood type. The transplant team finds another frustrated couple whose blood types match up to yours. Wife A donates to husband B. Wife B donates to husband A. There are, of course, lots possible combinations. Some transplant centers have engineered three- and four-way swaps.

My donor was blood type B. I'm O positive. In the universe of blood types and organ matching, a couple of anomalies pertain. Bs can receive a kidney from any blood type. Os can donate to any blood type.

Now consider the logic. If Os can donate to anybody, what are the chances there will be some frustrated, unassigned O donor available for a swap involving me? Practically nil.

The hospital didn't tell us that. They put my donor through months of tests. They put me through months of waiting. They actually submitted our swap request to the regional organ bank, knowing that nothing would come of it. Smiling, encouraging all the way. And terminally dumb.

OF LATE, I have been researching the possibility of doing a special medical procedure which would allow yet another donor of mine to give me a kidney.

An O, like me, he had been eliminated from consideration because of an antigen-antibody conflict between our systems. I am, after two transplants, known as a "highly sensitized" transplant candidate. I have a "recalculated PRA" (protein reactive antibody) rating of 90 percent, meaning that nine out of 10 people in the population at large have antigens in their systems to which I have antibodies.

Last week, cruising the Internet, I found this article explaining protein reactive antibody ratings and chemistries. At one point, the article says, "Candidates with a CPRA value of 80 percent or higher will receive points in the kidney allocation formula."

In yet another article, I found that such transplant candidates will receive "four extra points."

In all these years, I have never heard of a point system in allocating kidneys. No transplant coordinator has ever mentioned it.

Plug "kidney allocation formula" into Google, and you'll get article after article explaining what the result of the formula is, and proposing changes to it. But "points"?

It took some digging, but I found it. As I expected, points get assigned based on age, location, waiting time, and the like. But then the complications start.

The complications are so complicated it makes me wonder: Has this system been developed, like so many other professional systems, simply to exclude public curiosity?

Whatever it is, I had never heard of it. It makes me wonder what other, large, important factor in kidney transplant still remains out there -- that no one has ever told me about.

Like this Article

Print this Article

Print Article
About the Author

Lawrence Henry writes every week from North Andover, Massachusetts.