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# 142 Friday, May 5, 2006  -  "WHY ARE YOU HERE?"
I came home from the Christopher Reeve Paralysis Act rally all excited,
eager to tell Gloria what happened.
Instantly that feeling was swept away, like an Autumn leaf in the fire.
"Chris (my brother-in-law) said you need to get an experimental medication
for Barbara."
What?
"The doctor said if anyone wanted to see Barbara"-my wife paused, glanced at
me briefly-"They should come down now." She did not say "for the last time",
but the words hung in the air.
My sister Barbara was in the City of Hope hospital for cancer and leukemia
treatment. Most recently, my brother David had come down from Washington and
given blood for adult stem cells, a grueling 11 hour ordeal.
Experimental medicine?
"As a side effect of the leukemia, she has Veino-Occlusive Disease, (VOD)
blood clots on the liver," said Barb's husband Chris on the phone, "It is a
life-threatening condition. If her liver goes, everything begins to shut
down.
"Anyway, there is an experimental medication called Defibrotide, and it is
inbetween clinical trials. The company that makes it is in Italy. The City
of Hope is asking the company to provide some of the medicine for Barbie,
and that means the Food and Drug Administration (FDA) has to approve."
"Let me talk to the doctor," I said.
"I have to warn you, this doctor may not have the best bedside manner in the
world," Chris whispered. Then he turned away from the phone.
"Uhm, my brother-in-law wants to help us get the experimental medication-can
you talk to him?" I heard him say.
"No," she said.
This was 8:30, so I went to bed.
By two I was on the road to Los Angeles.
I remembered Barbie's twin, Brucie. I had two memories of him. One of him in
a sailor outfit, smiling, so beautiful.
The other was the last.
I was eleven years old, when I found Brucie, motionless, face down in the
crib. His infant face was blue. I got a neighbor, and she began doing
artificial resuscitation on his back, pushing down with her palm.
She wanted me to do it, and I could not.
To my shame, I ran from the room.
At the ICOC subcommittee meeting, I whispered to Susan DeLaurentis that I
could not stay very long, had to go see my sister.
"Why are you here?" she said, putting her hand on my shoulder, like don't
worry, we can take care of this.
This is important, I said lamely, we have to get good egg donation standards
in place.
Which was perfectly true.  The safety of the egg donor came first. But we
did not want standards in place that were so restrictive we could not get
the eggs needed to do research--  which might lead to cure for people like
Barbara.
"Go, go, be with your sister," she said.
"I'll be there at 2:00," I said, "But first I have to talk to Michael
Friedman."
Dr. Michael Friedman worked on the Independent Citizen's Oversight
Committee.
He was also President and Chief Executive Officer at the City of Hope
hospital.
"He's not here, I don't think he is on this committee," said Susan, picking
up her Blackberry.
"I also want to talk to Dr. Stephen Forman," I added, "He is the department
chair, or something, also at the City of Hope.:
Susan called up Amy Daly, and Melissa King.
They hunted up numbers and emails for both doctors, and said they would
locate him. I called Dr. Friedman's office, spoke with his associate Lisa,
and left a message.
In the public comment period, I made some inconsequential comment, sat back
down.
There was one more person I wanted to see.
At last committee chair Bernie Lo called for a bio-break.
Now most people on a bathroom break will either head directly for the
facilities, or maybe chit chat on the way, get some snacks from the table,
stretch-
Sherry Lansing, I knew, would have her cellphone out before she left the
table.
She finished the conversation she was having, got out her cell phone.
I followed, waved.
She waved back, smiled, realized I wanted something, paused.
"I need a favor," I said.
"I'll call you back," she said to the person on the phone.
"So all I want is for Dr. Friedman to ask the doctor to extend me every
courtesy, let her know I am not some wacko troublemaker," I concluded.
"Maybe I should talk to her myself," she said.
I had a sudden chill, a vision of what Sherry Lansing might be like if she
got angry. You do not reach the top in a male-dominated world like the movie
business without being very, very strong.
"No, no, it would be wonderful if you could just talk to Dr. Friedman, so
Barbie's doctor won't regard me as being in the way. I have to get the
experimental medication, which means I have to ask questions, be a nuisance
in general , and I just want to be able to-"
"Absolutely," she said.
Then I called Representative Pete Stark's office in Washington, DC, asked
for his legislative aide Debbie Curtis. She had personally helped us twelve
years before, with the FDA, when we had needed to get the medication Sygen
for Roman. It also had been inbetween the different clinical trials.
"I'm going into a meeting right now, send me all the information, okay?"
said Debbie Curtis. Her talent and energy had helped her rise; she was now
chief of staff.
Very much okay.
As I hung up, I thought how often the kindness of people had helped us in
this struggle. Pete Stark had not only helped us with the FDA, but he had
personally donated $500 to Roman's rehab, as had Senator Dianne Feinstein.
 "It's not technically a coma," said Chris as I washed my hands in the
hospital sink.
"But when you speak to her, she does not answer, does not respond?"
"No."
I hooked the straps of the paper mask over my ears. He showed me how to
pinch the part over my nose. The chemo and arsenic treatments had wiped out
her immune system, and we did not know if the adult stem cells just given
her were helping.
"You probably shouldn't try to talk or interact with her," Chris said, "She's
sleeping now, and we don't want to disturb her."
We went inside.
A curtain, and a nurse beside the bed. Someone had to be there 24 hours a
day now.
The bed was partially upraised, to help her breathe more easily. I moved
around so I could see her.
I took a sudden breath, having forgotten about Barbara's hair. It was
completely gone.
She was curled on her side in the foetal position, the sheets drawn up to
her neck. A tube ran into her nose.
I listened to her breathe for a while. Not very long.
"She's looking good," said Chris, when I came out.
"What?"
"She was terrible pain a couple nights, bending forward in the bed, and
groaning. I guess it was her liver."
I needed a computer, I told Chris.
We found one, and the person using it was generous enough to let us take her
place.
I wrote the letter to Debbie Curtis and Representative Stark, asking them to
intervene with the FDA once again, just as they had done twelve years ago,
when they had gotten Sygen for Roman.
Chris read over my shoulders, made a couple of corrections. We included the
name of the person who had written up the FDA letter, (Her title was
pharmacological investigator, if memory serves), the medication's name, and
Drs. Friedman and Forman.
We sent it off.
Chris's Mom and Dad were there. I had the chance to tell them what a
magnificent son they had, that I could not find words to express my
admiration for the love and loyalty he had shown my sister. His two brothers
were there as well, and their wives. They had come to help.
Then I was on the road again, heading back to Northern California.
Melissa King called, to reassure me that they had gotten through to Dr.
Friedman.
"Sherry Lansing called him too," she said.
Jo, a person from the California office of Pete Stark called.
"That Dr. Friedman is certainly a wonderful man," she said, "He is
completely knowledgeable about your sister's case, and said he will be in
touch with us if there are any problems with the FDA, and he understands the
urgency of time."
Chris called:
"The FDA is not going to be a problem," he said, "Everything is coming
together."
I thought about Sherry Lansing, Michael Friedman, Debbie Curtis, Pete Stark,
Melissa King, Amy Daly, Susan DeLaurentis, who had taken time from their
busy schedules, to help my sister in her hour of greatest need.
And I thought about the millions of other people suffering with incurable
disease, who do not have the luck of such amazing friends.
We needed stem cell research in every hospital across the world, and not
just this rinky-dink adult stem cell stuff, but the real thing, embryonic
stem cells, and Somatic Cell Nuclear Transfer, whatever it takes to give
everyone a fighting chance at a healthy life.
Now all we have to do was wait for the medication.
And hope it works.
By Don Reed

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