By Lawrence Henry on 5.30.08 @ 12:07AM
Why are patients so often kept in the dark?
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.
topics:
Health Care, Law, NATO, Medicare
