DIABETES
INTERVIEW
NEWS                  a weekly e-newsletter for people with diabetes
Copyrighted 1996, Diabetes Interview
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Diabetes Interview newsletter #149

The Cure for Diabetes? Some Think the Simultaneous Pancreas-Kidney
Transplant is the Closest Thing

by Daniel Trecroci

"I consider myself cured of diabetes," states Judy Anderson of Princeton,
Illinois.

Anderson, who had diabetes for 22 years, had a simultaneous kidney-pancreas
transplant in July of 1990. Anderson, whose blood sugars got as high as 400
prior to the procedure, was in such bad condition as a result of her
diabetes that she had hemorrhaging of the eyes, kidney failure and severe
neuropathy in the legs. She was then placed on a waiting list at the
University of Wisconsin Medical Center and after eight months, she was
finally called in for her transplant.

"It's been just a miracle," says Anderson. "I have no diet that I have to
stick to. I don't have to take insulin shots. I only go once a month to
have my blood sugars checked, instead of having to prick my fingers four
times a day."

10-Year Study

From December 1985 to October 1997, 500 simultaneous pancreas-kidney
transplants were performed at the school's Division of Organ
Transplantation in Madison, Wisconsin. According to the September 1998
issue of Annals of Surgery, there was a patient survival rate of 96.4
percent, 88.6 percent and 76.3 percent after one, five and ten years
respectively. At the same time intervals, 88.6 percent, 80.3 percent and
66.6 percent had kidney function and 87.5 percent, 78.1 percent and 67.2
percent had pancreas function.

"The good news about this follow-up study is that people with diabetes, who
have kidney failure, are more likely to live much longer," states Hans
Sollinger, MD, PhD, chairman of the Division of Organ Transplantation at
the University of Wisconsin School of Medicine. "If they had gone on
dialysis instead, their chances of surviving for up to 10 years would have
been zero."

Sollinger points out that over 75 percent of the subjects in the
simultaneous pancreas-kidney (SPK) transplant follow-up study are still
alive after ten years.

Robert Leurquin of Green Bay, Wisconsin, was another participant in Dr.
Sollinger's follow-up study. Leurquin says that he had diabetes for 30
years, and was on dialysis for 19 months before he had the transplant
procedure. Leurquin does not consider himself "cured" of diabetes, but
admits to feeling much better.

"As long as I take my antirejection pills, then there is the possibility
that I'll never have to worry about diabetes returning," states Leurquin.
"Right now, I only have to go in once a month for blood tests. My blood
sugars are usually around 100 to 110. Before the transplant, my blood
sugars would get as high as 300, and as low as 35."

The Cure For Diabetes?

Lynda Pierce of Fremont, California, does consider herself "cured" of
diabetes, and is not ashamed to say so.

"I don't consider myself a diabetic anymore," states Pierce, who recently
had an SPK transplant done at the University of California at San Francisco
(UCSF) Medical Center. "It's pretty overwhelming. Before the procedure, my
blood sugars were in the 200s, and my kidneys began to fail. Now my blood
sugars are around 105 to 110 first thing in the morning."

Pierce had diabetes for 25 years, and had been taking NPH insulin since she
was 11 years of age. She was told of precautions she could take to prevent
her kidneys from failing, such as cutting back on protein and avoiding
Advil. About one and a half years ago, her blood pressure began to increase
and she went in for an angiogram. Doctors discovered that her kidneys were
failing as a result of her diabetes. Pierce remembered talking to somebody
who had a SPK transplant performed, so she started to do some research
online. She found out that UCSF did SPK transplants, and was placed on the
waiting list. On September 21, 1998, she got the call, and hours later was
on the operating table. Pierce's procedure took 10 hours and was performed
by Julie Melzner, MD, whom Pierce regards as a "goddess."

"Dr. Melzner was so conservative with the procedure, and she really babied
me in the recovery process," states Pierce, who says she has not taken an
insulin shot since the operation, and plans never to do so again. "The
benefits you get from the SPK transplant are wonderful, because of the
freedom in your lifestyle."
Deb Butterfield, executive director of the Insulin Free World (IFW)
Foundation, and a SPK transplant recipient herself, does not think that the
transplant procedure is a cure for diabetes.

"It is not a cure for diabetes because of the ongoing need for
immunosuppression," states Butterfield, whose IFW Foundation provides
information to people interested in pancreas and islet cell transplants.
"For anybody who has been through the procedure, however, like myself, who
no longer has to deal with day-to-day management of diabetes problems, the
transplant is tantamount to a cure."

Butterfield originally had her transplant in April of 1993.

"I was freed from taking insulin injections, and it was just wonderful,"
states Butterfield.

Three months later, however, Butterfield's SPK transplant was rejected. She
went back to her native organs and back on insulin.

"I had diabetes again, and that was a really difficult thing for me,"
states Butterfield. "Those three months were enough to let me know that I
never wanted to have to live the diabetes lifestyle ever again."

In August of 1994, however, Butterfield had another SPK transplant
operation, and has not had any incidence of rejection since then. She
suggests that the ultimate cure for diabetes will exist in discovering some
way to regenerate the beta cells of the pancreas, so that immunosuppression
would not be necessary. In the meantime, Butterfield says that
immunosuppressants like Cyclosporine, Neoral, Prograf and Cell Cept are all
effective antirejection medications, and taking them on a daily basis
certainly beats the alternative of having diabetes.
Dawn Scherer of Stevens Point, Wisconsin, agrees.

"I know I have to take medications every day, but at least I don't have to
poke myself twice a day like a pin cushion," states Scherer, who had her
SPK operation done by Dr. Sollinger on May 20, 1997. "I don't have to take
blood pressure pills anymore, and I don't have to take insulin. In fact,
the only shot that I've had since the operation was a flu shot just last
week."

Scherer had diabetes for 28 years, since the age of 4. Despite her daily
routine of taking NPH and Regular insulin several times every day, her
condition had gotten so bad that she had to get both legs amputated below
the knees, and had to eventually go on dialysis.

"I'm not the type of person to give up, but when I went on dialysis, I
almost wanted to," says Scherer.

Scherer was then placed on a waiting list for the SPK transplant operation
at the University of Wisconsin School of Medicine and, like much of the
other recipients of this procedure, she was called in one day, and had the
operation the very next. The procedure took 14 hours, but after it was
over, she was free from taking insulin.

"Instead of having blood sugar readings as high as 380, and as low as 16,
they now seem to stay around 80 or 90 all of the time," says Scherer.

Terri Garner of Castro Valley, California, thinks that every person with
long-term kidney and neuropathy problems associated with diabetes should
consider the SPK transplant procedure.

"People with diabetes should just go for it," states Garner. "All of the
things that I did in the 28 years of treating my diabetes just don't
compare to how I feel right now."

Garner had her SPK transplant done on June 18, 1998 at Stanford Medical
Center in Palo Alto, California. Three months later, she had an HbA1c done,
and it registered at 6.6 %.

"Prior to the transplant, my HbA1cs were always in the eights," states
Garner, who, despite following a routine of taking Regular and NPH insulin
every day, could never seem to get her blood sugars below 150.

"I haven't taken insulin since the transplant," says Garner. "I still test
my blood sugars twice a day, and they usually read 80 or 90 in the morning,
and 110 to 140 two hours after dinner."

Does Terri Garner consider herself cured of diabetes?
"I certainly feel cured," she says. "I eat a lot of protein, and I eat
cottage cheese for lunch everyday. I couldn't eat cottage cheese when I had
diabetes, and I forgot how much I love it."

Fred Wegner of Sun Prairie, Wisconsin, had his SPK transplant performed by
Dr. Sollinger on October 27, 1993, after being on the wait list for one
month. He had diabetes for 35 years prior to the transplant, and was
declared legally blind in 1989 as a result of retinopathy complications.
Additionally, he had three and a half toes amputated, and began suffering
severe neuropathy about 15 years ago.

Today, Fred Wegner considers himself cured of diabetes.

"All I had to do after the transplant was switch my shots to antirejection
pills," states Wegner. "After five years, I feel great. I just went to the
University of Wisconsin School of Medicine last week, and they said,
'you're healthy, get out of here, and don't come back for another year.' "
Before the transplant, Wegner had blood sugar readings as high as 300.
Today, they are always around 85.

"If I don't eat a big breakfast, they might get lower," states Wegner.

UW Solution

In 1987, the Division of Organ Transplantation at the University of
Wisconsin performed the first pancreas transplant using a preservation
solution know as the UW (University of Wisconsin) solution. The solution is
used to keep the pancreas alive during transportation from donor to
recipient.

"I personally feel that the UW solution has contributed more to pancreas
graft survival than any other single invention" states Sollinger, who
mentions that prior to the invention of the UW solution, there was a very
high incidence of thrombosis, a condition in which the pancreas is not
accepted in the days following a transplant due in part to clotting of the
blood vessels. "Thrombosis occurred in roughly 22 percent of the patients
who received a SPK transplant. After the invention of the UW solution,
thrombosis rates dropped to around 0.3 percent."

SPK Criteria

One of the criteria for acceptance into most SPK transplant procedures is
that the candidate had to have suffered renal failure (dialysis-dependent
or advanced diabetic nephropathy).

Other criteria are :
* Low C-peptide levels.
* Low cardiac risk.
* A history of compliance, and
* The ability to understand the complexity of the procedure, and a
willingness to follow post-transplant guidelines.

Side Effects

Despite reducing the complications associated with diabetes management, the
SPK transplant procedure, like all other transplant procedures, is followed
by an imperative regimen of antirejection medications. For some people, the
side effects are very noticeable.

"If I don't shave at least twice a day and trim my eyebrows once a month, I
start to look like Smoky the Bear," says Fred Wegner, who, twice a day,
takes a combination of the immunosuppressants Sandimmune and Cyclosporine,
as well as taking the steroids Prednisone and Azathoprine once a day.
Additionally, Wegner takes sodium bicarbonate four times a day to fend off
pancreas rejection. "Sometimes, when I take the Cyclosporine, my face
breaks out and gets oily, and my hands start to shake."

Although she swears by the SPK transplant procedure, Terri Garner
emphasizes that there are side effects from taking the immunosuppressant,
Prograf, twice a day.

"I'm going bald," states Garner. "That's my only side effect, and I was
told that Prograf might do that to me."

Lynda Pierce says that Prednisone causes weight gain in most people that
take it. In addition to taking the steroid once a day, Pierce takes Prograf
and Cell Cept twice a day.

Robert Leurquin says that he has become more sensitive to the sun, and must
wear a hat whenever he goes outside.

"Maybe it's because I live in Green Bay, but since I started taking the
sodium bicarbs and the Prednisone, I really feel the cold in my fingers and
toes," states Leurquin.

Despite these common side effects, Dr. Sollinger stresses the extreme
importance of post-transplant therapy.

"Prevention of rejection is very important," states Sollinger. "You need
good immunosuppression therapy, and you also have to protect against
infection.
Some SPK transplant subjects, like Judy Anderson, say that they have had no
side effects after eight years of taking antirejection medication.

"Every day, I take 7 1/2 milligrams of Prednisone, 325 milligrams of
Cyclosporine, Trandate for my blood pressure and sodium bicarbs, and I
haven't had a single side effects in eight years," says Anderson.

But, at What Cost?

Leurquin has also encountered problems with employment and insurance as a
result of the SPK procedure. Leurquin worked in the mills prior to his
transplant, and his company's insurance carrier covered the operation, but
he became a liability.

"If you're not unionized around here, and you have a procedure like this
one, you're out the door within one year," states Leurquin. "I met a man at
the University of Wisconsin Medical Center who had worked at a firm for 20
years. Within one year of having his kidney and pancreas transplant, he was
let go."
According to Martin J. Irons, RPh, CDE, prices for immunosuppressant drugs
vary depending on the dosage.

"Prices are set at an average wholesale price plus a 20-percent markup,"
states Irons. "Insurance companies pay the pharmacies about 10 to 15
percent less for the same drugs."

According to Irons, Cell Cept runs anywhere between $67.50 and $270 for 250
milligrams per month. Neoral runs between $46.80 and $187.20 for 25
milligrams, and between $190.80 and $572.40 for 100 milligrams per month.
Imuran runs at $37.20 and $111.60 for 50 milligrams and Prednisone is $4 to
$20 depending on the variety of strengths.

The IFW Foundation says that the cost of immunosuppressive therapy can
generally run between $8,000 to $12,000 per year if you do not have
insurance.
Leurquin, who is still out of work, has his Prednisone and sodium bicarb
medications covered by Medical Assistance of Wisconsin.

Fred Wegner, who is covered through CIGNA, says that he pays around $7 to
$10 in copayment fees for his antirejection medications, and that his
insurance carrier, CIGNA, paid for all but $1,200 of the SPK procedure.
Terri Garner says that her SPK transplant procedure was covered by
Lifeguard, and all she pays out of her pocket is an $8 copay for her
antirejection medication.

According to the IFW Foundation, the SPK transplant procedure also varies
in cost, depending on the center in which the procedure is performed and
the complexity of the patient.

"A good ballpark figure on the cost of a SPK transplant is $60,000 to
$90,000," states Butterfield. "A kidney transplant alone runs about $40,000
to $50,000, and a pancreas transplant alone runs about $50,000 to $70,000."

Janice Drexler of Neshkoro, Wisconsin, had her transplant done on October
27, 1995. She had suffered from diabetes for 37 years, and the kidney
transplant part of her procedure was covered through her husband's
insurance carrier, Network Health. According to Drexler, however, Network
Health did not cover the pancreas transplant part. To cover the cost of the
pancreas transplant, Drexler had to make a $25,000 cash payment, in
addition to money from a fund raiser and a donation from her mother's
friend that covered the rest.

Jen Smallin of Minot, North Dakota, says that Medicare paid for the kidney
part of her SPK transplant, but Kaiser Permanente had to pay for the
pancreas part.
Some insurance companies, like Medicare, will not cover the pancreas
transplant part.

"Medicare has no plans to implement a policy that would cover a pancreas
transplant," states Lola Jordan, customer service manager for National
Heritage Insurance Company, which is the program administrator for Medicare
programs in Northern California. "A pancreas transplant is still considered
experimental, therefore, it is excluded."

Larry of Kissimmee, Florida, who had his SPK done on July 23, 1995 at the
University of Miami Medical Center, takes exception to Medicare's policy
about covering pancreas transplants.

"Fortunately my wife's insurance covered my [SPK] transplant, but I've had
three close friends die from diabetes because their insurance would not pay
for their transplants."

Deb Butterfield says that getting insurance coverage for a pancreas
transplant is not that bad, as long as the candidate for the transplant is
persistent.
"Most of the time, you can win, even on appeal," states Butterfield. "It's
very rare to have an insurance company hold out when you fight them."

Butterfield says that part of the IFW Foundation's purpose is to help
arrange legal services for people who fight insurance companies over
pancreas transplants. There are some insurance organizations who still
refuse to pay.
"Medicare seems to be the only one who continues to say, 'No Way!'" states
Butterfield.

According to the IFW Foundation, there are over 50 insurance companies that
have covered pancreas transplants. The IFW Foundation says that the key to
getting coverage is to always request an evaluation to determine if you are
a candidate. If your transplant surgeon feels that you are a candidate, he
or she can write a letter to your insurance company explaining the medical
necessity.

Presently, there are well over 100 hospitals that perform kidney-pancreas
transplants in the United States. The waiting list is approximately 2,000
people.

For more information on where you can receive a simultaneous
pancreas-kidney transplant, or to find out which insurance carriers cover
such a procedure, you can call the Insulin Free World Foundation at (888)
746-4439, or log onto their Web site at www.insulin-free.org.

Although it might not be the "cure" for diabetes, a SPK transplant is
certainly regarded by those who have had the procedure as being the most
effective treatment of diabetes.

"As I speak to you, I am sitting here eating chocolates," states Butterfield.

For a subscription to Diabetes Interview email diabetes@pcspublink.com or call
(800) 488-8468.




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