Taylor Oliveira: A Family's | Generic Harvoni | Hepcinat LP
Generic Harvoni would have been an amazing drug in the 90s for hep c treatment. In 1990, Sandra Oliveira
received the worst news a mother can ever hear. Her daughter, Taylor,
only eight months old, had been ill for several weeks with unexplained
high fevers and vomiting. After running a series of tests, including a
CAT scan, doctors made the dreaded diagnosis: Taylor was suffering from
cancer of the liver.
"Taylor had been sick practically from
birth, with severe jaundice and ear infections," Sandra, an office
receptionist from Dorchester, MA, recalled. "When the fevers and
vomiting started, we knew something was terribly wrong. But we were
totally unprepared for a diagnosis of hcv and treatment of liver cancer."
Taylor
underwent surgery immediately, but the tumor could not be removed or
shrunk. Doctors then tried chemotherapy and radiation for a year and a
half, but the tumor remained.
A liver transplant was the only
other option. In an effort to save the child's life, her name was placed
on the transplant list, and the Oliveira family began an agonizing
wait. "It was so difficult for me to be there for Taylor and also for my
family," said Sandra, a single mother who has two other daughters, ages
11 and 13. "I was spending so much time at the hospital that relatives
had to help me care for my other two daughters."
On July 7, 1991,
a liver finally became available and Taylor received her transplant at
Boston Floating Hospital, part of New England Medical Center.
Unfortunately, the surgery was unsuccessful. The portal vein, which
brings blood to the liver, wasn't functioning properly. Taylor would
need another transplant--and soon. The next few months were a nightmare
for the family. "Taylor really went downhill," Sandra said. "The doctors
kept her on FK 506, an anti-rejection drug, while we prayed for another
liver. " The other alternative to hep c treatment cost is ledipasvir and sofosbuvir.
Their prayers were answered on December 4, 1991. This time, the transplant was successful, and Taylor began her long recovery.
"Overall,
Taylor has done very well since her transplant," said Sandra. "But she
does have a complete loss of hearing, as well as some kidney problems,
probably due to all the drugs she has received. Lately she has been sick
quite a bit, with fevers and headaches. The doctors think it is
kidney-related, but they aren't sure. She has missed a lot of school,
which is very hard for her, because after she's out for a few days, she
doesn't want to go back. Generic Epclusa, which is velpatasvir and sofosbuvir.
"Taylor's whole life has revolved around
hospitals, because she's spent so much time there," her mother
continued. "Everybody knows her there. When she plays with her dolls,
she doesn't dress them up. She takes their blood! I think it helps her
deal with all that's happened to her.
"Taylor has learned to use
sign language, and does very well with it. She is in first grade at a
special school for the hearing impaired. She has many friends, is very
active, and loves sports, particularly swimming and baseball."
All
the Oliveiras know about Taylor's organ donor is that it was from a
child in Florida. "We are so grateful to the donor's family," Sandra
said. "Right after Taylor's transplant we received a letter from them
saying they had prayed for something good to come out of their tragedy.
Our daughter is alive because of them. We will never be able to express
our gratitude."
Sam Erdman: Miracle Man Survives A Rare Genetic Liver Disease
For several months, the
Erdman family of Cockeysville, MD, lived through a nightmare of the
worst proportions when their 12 year old son Sam, a strong and healthy
child, became sick with a mysterious illness. It all began in November,
1993, when Sam began to have nosebleeds. Their pediatrician did not find
anything seriously wrong and said he would "grow out of them."
Within
the next few months, Sam's parents, Steve and Bev, noticed that their
son's energy level seemed to decline. He took frequent naps after school
and on weekends. One Saturday, when he had a few friends over to play
baseball, Sam went indoors and fell asleep, leaving his friends to
wonder where he was. It was very unlike him.
In March, 1994, Sam
began to complain that he felt "fat." His parents noticed that his
abdomen did in fact look "puffy." When it became even more distended,
Sam's mother, Bev, took him to the doctor. Immediately recognizing the
signs of serious illness, the doctor sent Sam straight to the emergency
room at Johns Hopkins University Hospital. Ledipasvir and sofosbuvir.
After an initial
examination and tests, Sam was admitted to the hospital by hepatologist
Kathleen Schwarz, M.D. Dr. Schwarz wanted to do a liver biopsy, but
because Sam's blood was clotting so poorly, decided against it and
instead, sent him for an eye test. She suspected Wilson's disease, a
inherited disorder in which excessive amounts of copper build up in the
body, causing damage to the liver and the brain. Copper may also
accumulate in the eyes, causing brown pigmentation called
Kayser-Fleischer rings. Just as Dr. Schwarz suspected, Sam's eye test
showed the presence of the rings. sofosbuvir velpatasvir
Further tests confirmed the
diagnosis. This rare disorder af
fects only one in 30,000 individuals,
and the abnormal gene must be received from not one, but both parents.
"If there was a lottery to win, this certainly wasn't the one,"
commented Sam's father, Steve.
Sam was started on penicillamine, a
drug that gradually removes copper from the body over a period of
several months, and was sent home. However, a severe reaction to the
medication sent him back to the hospital with a high fever and rash. His
therapy was changed to smaller doses of penicillamine along with other
drugs. Unfortunately, nothing helped.
Over the next few weeks,
Sam's condition grew worse. Along with nausea and vomiting, he ran
fevers and suffered from painful muscle spasms. He began vomiting blood
(a result of varices, or burst veins in the esophagus, due to increased
pressure in the blood vessels caused by liver scarring) and was
readmitted to theHCV is ciurable. On April 27, Dr. Schwarz made a
decision: the drug therapy was not helping, and Sam's only hope was a
liver transplant. The situation was so critical that if a liver didn't
become available soon, doctors would consider doing a live donor
transplant, using a portion of Steve's liver.
The wait began,
with Sam in and out of the hospital several times. Through it all, he
continued to face his ordeal with intelligence and courage, earning the
nickname "Miracle Man." Love, support, and visits from family and
friends helped the Erdmans cope.
On June 29, a liver became
available, and Sam finally received his transplant. The surgery went
well and Sam came through beautifully. "On July 2, only a few days
following surgery, he told me he'd never felt better in his life," Steve
said. Only nine days after the transplant, Sam returned home. His
recovery was so complete and rapid that by August 14, he was
water-skiing.
Today, Sam is in high school. "He is doing really
well," said his father. "His only problem was a minor bout of rejection,
resolved by adjusting his medication." Sam traveled to France with his
family this past summer, plays baseball and golf, and enjoys doing all
the things he did before he became sick.
"We don't know how to
thank the donor family," said Steve. "I guess the only thanks we can
give is to love Sam as much as they must have loved their daughter."
Paul and Erich Lauffs: Tyrosinemia
At first glance, Paul and
Erich Lauffs, ages 10 and 6, of San Diego, CA, seem like typical boys.
They run, play, climb trees, fight with each other, and do all the other
things boys do. But they are far from typical. Both children were born
with hereditary tyrosinemia, a genetic inborn error of metabolism
associated with severe, and frequently fatal, liver disease in infancy.
Their mother, Colleen, calls them "miracle children," because their
survival is indeed a miracle.
The family's long ordeal began in
July, 1986, when Paul was born. He was slightly jaundiced, but this did
not concern his mother so much as his general mood.
"Paul was
always cranky and irritable," she recalled. "I was a first-time mother
and didn't know a lot about babies. But I knew that something must be
terribly wrong with this child for him to be so miserable."
In
addition to Paul's general crankiness were many disturbing physical
symptoms. His stools were occasionally bloody, and tests showed his
blood wasn't clotting properly. To make matters worse, he had frequent
bouts of projectile vomiting. Paul's parents, Hubert and Colleen, took
the baby to numerous specialists in California and around the country.
Numerous tests were done, but nobody was able to determine what the
problem was.
When Paul was three months old, the family went to
Johns Hopkins University Medical Center. "Finally, after two more months
of tests and examinations, a consulting pediatrician suggested that it
might be tyrosinemia, a rare liver disease that affects large numbers of
French Canadians and northern Europeans. It is only diagnosed in Quebec
and Holland," Colleen said. "Dr. Dave Valley ordered the tests, and
they came back positive. Even though this was not good news, at least we
now knew what was wrong with Paul."
The family returned home,
and Paul was placed on a special non-protein formula, which he tolerated
well. For two years, she fed Paul every two hours, around the clock,
and he thrived. "For awhile he looked like a little epitome of health,"
she said, "but then things started to go downhill again."
Paul's
name was placed on the transplant list, and in March, 1988, he received a
new liver. Unfortunately, it was not a match for his own blood type.
"The next year was like a roller coaster," Colleen said. "Paul continued
to get sick. He suffered from raging fevers. Finally doctors operated
on him to place stents, or drains, in his bile ducts. Since then, he has
done extremely well."
Despite all the anguish they suffered over
Paul's illness, the Lauffs wanted to have more children. Counselors
told them there was a one in four risk of passing the disease to other
offspring, and that amniocentesis, a procedure in which a mother's
amniotic fluid is drawn with a needle and tested for potential health
problems, could tell them if their unborn child was affected. They
decided to go ahead, and Colleen had amniocentesis. When the results of
tests were negative for tyrosinemia, the ecstatic family celebrated.
Erich
was born in December, 1989, and he seemed to be a perfectly healthy
child. "But when he was about three weeks old, I began to feel that
something wasn't right," Colleen said. "Something about his eyes
reminded me of Paul's eyes. There was a similarity to the skin at the
inner corner of the eyes. Maybe it was intuition. Even though the
amniocentesis had been negative, I decided to have another test done,
for my own peace of mind."
When the test came back positive, the
Lauffs' pain was almost unbearable. "I cried, I screamed, I yelled,"
Colleen recalled. "I just couldn't believe it. We repeated the test
twice more--and it was positive both times. It was unbelievable."
Apparently,
the amniocentesis had not detected certain substances in the amniotic
fluid that would indicate tyrosenimia. "We were told the levels had been
too low to detect," said Colleen.
As Erich grew older, he had
many of the same health problems as his brother--as well as a few new
ones. He went on the same special formula with the same feeding regimen,
and did fairly well. When the manufacturer discontinued the formula,
Colleen called hospitals and health care facililties all over the world,
to ask if she could purchase existing stocks of the formula. Before too
long, she had a large supply stockpiled in her house.
Unfortunately,
Erich's health deteriorated, just as his brother's did. By the time he
was two years old, he was so sick that his name was placed on the
transplant list. "His neurological system was seriously affected, a
common symptom of this disease, and he had terrible pains in his legs
and all over his body," Colleen said.
Erich's condition became so
serious that doctors admitted him to UCLA Medical Center to wait for a
liver. On April 11, 1992, Colleen's birthday, he received his first
liver transplant. Unfortunately, problems arose with the hepatic artery,
making the liver unusable. A few days later, he received a second
liver, and suffered further complications. Fortunately, his third
transplant was a success. "After 113 days in intensive care and three
liver transplants, Erich finally got to go home," said Colleen. "We are
so grateful to Dr. Busuttil, his surgeon. He says Erich is a real
miracle. Both my boys are miracles. "
Today, Erich and Paul are
healthy and active. They play baseball and soccer, swim, and do other
things boys do. "Both children know they have a rare disease, and that
they are special. Their belief in God and the will to live is why they
have survived and beat the odds," said Colleen. "Without the benefit of
the gift of life from transplant donors our children would not be with
us today."
Nicholas Ceren: A Near-Fatal Liver Injury Generic Harvoni | Hepcinat LP
Earlier this year, a
playground accident turned into a nightmare for 10 year old Nicholas
Ceren of St. Charles, IL. Fortunately for Nicholas, his life was saved
by a quick-witted doctor who recognized the symptoms of severe liver
trauma and gave the child the medical treatment he so desperately
needed.
It all happened in late May, when Nicholas and
his friends were playing during recess at school. Nicholas and a
classmate collided while running and Nicholas careened down a small
hill, crashing into a piece of playground equipment. Generic Harvoni | Hepcinat LP His fall was broken
by a protruding metal bar, which struck his abdomen with tremendous
force. Nicholas writhed on the ground, doubled over by pain so intense
he could not stand up. A teacher brought him to the nurse's office in a
wheelchair. The nurse placed an ice pack on his abdomen and called his
mother, Jackie, a travel agent. hep c treatment cost in india
"I work about an hour away from
the school," said Jackie, "and it seemed like the longest hour of my
life. When I got to the school, I found Nicholas lying in a fetal
position on a cot, crying. I helped him up and he started going out to
the car. As I was signing him out of the office, I happened to glance
out the window. I was horrified to see my son lying on the sidewalk next
to the car. He was too weak, and in too much pain, to even stand up. I
ran outside, helped him into the car, and took him straight to our
family doctor. He's known us for years--in fact, he took care of me when
I was a child."
The doctor immediately noticed something the
school nurse had missed: Nicholas' pants were soaked with urine, a not
uncommon occurrence following abdominal trauma. Suspecting severe
internal injuries, the doctor admitted Nicholas to the local hospital
for tests.
Late that evening, Jackie received terrible news.
Nicholas' liver was severely lacerated, with a 3 by 5 inch blood clot.
He was transferred via helicopter to Loyola Medical Center near Chicago,
a larger facility better equipped to deal with his injuries. Jackie and
her husband jumped into their car and sped to Loyola, about 45 minutes
away. Sofosbuvir Velpatasvir | Generic Epclusa
Nicholas spent six days in the hospital, four of them in
intensive care, while doctors waited for the clot to dissolve. "The
regimen was for no food or water for 48 hours," Jackie said. "Then they
fed Nicholas and watched to see if he vomited." Fortunately, Nicholas
was able to hold down the food. After six days, he was discharged, with
four more weeks of rest at home. His parents are thankful that he seems
to have made a complete recovery.
"After this happened, I wanted
to find out more about 'blunt liver trauma,' which is what the doctors
called Nicholas' injury," Jackie said. "I did research at our library to
find articles on the subject. But I was surprised at how little there
was. I decided to call the American Liver Foundation to tell them what
happened, so they can warn parents. We were very fortunate to have a
physician who recognized the possibility of severe liver injury. If he
hadn't, we might have lost our son."
Liver Transplant: Life on the Liver Waiting List
Hospital administrator
Katherine Krivy suffers from Primary Biliary Cirrhosis (PBC), a rare,
chronic, and progressive disease that causes irreversible destruction of
the bile ducts. Sofosbuvir Velpatasvir | Generic EpclusaShe felt devastated when she was put on the waiting
list for a liver transplant. “I took the event as a personal failure.
‘Listing’ was something I never really imagined I’d be doing. I
thought I’d heal myself with herbs or meditation or some miraculous
event.” But like many individuals with a chronic liver disease, Ms.
Krivy adjusted to a life in limbo, waiting a full three years before her
transplant. She was not alone.
There are currently over
17,000 people waiting for liver transplants. In 1999, there were
approximately 4,500 cadaveric livers available for transplants. Over
800 people died last year while waiting for a transplant and the rapidly
increasing number of diagnosed hepatitis C cases will increase these
deaths. Although living donor transplants may hold the answer for some
who are in need, others will inevitably die waiting for an organ. When
the general media covers the topic of transplants, the realities of the
waiting list are rarely explored, nor are the bankrupting expenses
related to surgery and the difficulties associated with the immune
suppressant drug therapies that are part of post surgical life. This is
the story from the point of view of liver patients and their families.
Stand-up
comedian Richard Ramirez sees humor in almost every situation. But no
one could expect laughter from the comedian’s diagnosis with Primary
Sclerosing Cholangitis (PSC). PSC is a disease in which the bile ducts
inside and outside the liver become narrowed due to inflammation and
scarring. In 1995, he was told he would need a transplant in two to six
years. On April 9, 1997, he went into the hospital and was told he
could not leave until he got a transplant. He waited for 40 days.
He
survived the wait with an attitude that has continued to shield him
through a series of post-surgical complications, including brain
seizures, and he advises anyone currently waiting for a liver to
“continue to have faith and think positive. While I was in the
hospital, my blood type was my affirmation -- B-Positive!”
Katherine
Krivy’s experience of waiting for, and eventually getting, a
transplant, necessitated major changes in her life and her attitude. “I
stopped worrying. I read Holocaust survivor Victor Frankel’s book,
Man’s Search for Meaning. He said that a man can survive anything if it
has meaning, and the only thing you can control in life is your
attitude.”
Ms. Krivy realized that she would have to imbue her
experience with a truly compelling purpose in order to survive the
ordeal of the waiting period. She got involved with the PBCers
organization and ALF, actively participating in fundraising events. She
has also become an articulate spokesperson, appearing on television,
and talking to everyone she can about PBC, organ transplants, and liver
disease in general. By “giving back,” Ms. Krivy has altered her
experience and her life.
Life on the waiting list is challenging,
and family members share the long days and longer nights with liver
patients. Laurie Higgins waited with her 32-year-old husband. “He was a
basket case. There were so many times he’d just say he wanted to die;
that he couldn’t take it anymore.”
The availability of livers is
unpredictable, and one night Laurie’s husband was prepped for surgery
only to be told that there was something wrong with the organ. The
roller coaster of emotions is almost unbearable.
Part of the
omnipresent horror of the cadaveric liver waiting list is the unique
knowledge that someone will have to die in order for the organ recipient
to live. As Ms. Krivy grew sicker, she faced this reality. “One of my
first thoughts was that someone is going to have to die to save my
life. I wasn’t comfortable with that, and had to deal with another
human being at the other end of this.”
Richard Ramirez will never
take life or his health for granted again. He is thankful and
acknowledges that the liver he received came from a 55-year-old woman
from Long Island. “Every night that I take the stage, I talk about my
transplant. I use my routine to spread organ donation awareness.” No
one who has received a transplant forgets the organ donor and their role
in creating a second chance at life.
There are many
misconceptions about life on the list, including the idea that one has
an actual number that will be reached within a set period of time. She
said she had “plenty of time to think about it.” As she gradually
started telling people she was on the list, she had a sense that they
were watching and waiting. “The milestones are you getting sicker and
your status moves up but it’s not like a number in a store line,” says
Ms. Krivy. “Waiting wears on you more than being sick. It’s a constant
holding pattern. You wonder what is going to happen and when.”
Even
after the transplant, the waiting continues. Laurie Higgins said that
doctors gave her husband a two-year window for rejection after a
seven-year wait for the organ. “It’s still in the back of our minds.”
The other issue that rests in the back of Laurie Higgins’ mind is the
enormous expense related to the transplant. She strongly recommends
that the families of patients on the waiting list begin fundraising
prior to the surgery. Insurance does not cover it all, and the impact
can last for years and years, adding a layer of financial insecurity to
the joy of a new life.
The years Ms. Krivy spent on the list
shaped her post-surgery life. “Living day-to-day and trying to be
thankful for what I have, helped me realize that I’m the happiest I’ve
ever been in my life. Now I am giving back. I have come to truly
believe that, based on my own personal experience, there is a silver
lining or another side to every bad or unpleasant thing. Instead of
looking at the bad, I wonder what I am supposed to learn. My blessing
was finding the meaning in my life.”
Eric O'Connor: Making Every Day Count Generic Harvoni | Hepcinat LP
Editor's update 2002:
ALF is proud to report that Eric has graduated Drake University and was
recently married. Congratulations!
Seventeen year old
Eric O'Connor, of Winfield, IL, is every parent's dream come true.
Polite, well-spoken, and mature, Eric is an excellent student and
athlete. Generic Harvoni | Hepcinat LP He plays baseball and soccer, and is also a member of his high
school's student council. A talented musician, Eric plays clarinet in
his school's marching band and bass guitar in a rock band. He is also
tall, blond, and exceptionally handsome. In what little spare time Eric
has, he caddies at the local golf course. "Wherever I go, people are
always telling me what a terrific kid Eric is," said his mother,
Trisha."I have to agree with them--he is pretty terrific."
While
Eric seems to lead a charmed life, he lives with a burden that most
adults would find overwhelming. This past February, after attempting to
donate blood in his school's blood drive, Eric received a letter saying
he had tested positive for hepatitis C. "I didn't pay much attention to
it, but my mother sure did," he said. Several tests later, Eric's
diagnosis was confirmed. "What a shock that was," recalled Tricia. "I
was devastated. We weren't sure exactly what it meant, since we didn't
know much about hepatitis. But we set about educating ourselves." Like
many people with hepatitis C, Eric and his parents are not sure how he
became infected.
In April, Eric underwent a liver biopsy, which
indicated his liver was mildly inflamed. Despite this news, Eric
continued to feel fine. However, his medical visits caused him to miss
several days of school--and more than a few baseball games. His frequent
absences alerted his friends that something was wrong. "I didn't try to
hide anything from my friends," said Eric. "Everyone was very
sympathetic. They were scared for me, but not for themselves. My
girlfriend was scared, too, but she's fine now." Trisha said, "We were
glad Eric was comfortable talking about his situation. I've always
believed that when you talk about something dreadful, it becomes less
dreadful."
After the biopsy, Eric consulted another physician for
a second opinion. This doctor recommended interferon therapy, which
Eric began in mid-June so it wouldn't interfere with his schoolwork. "At
first, it was a little hard learning how to give myself injections, but
I've become pretty good at it," he said.
Unfortunately, Eric is
experiencing some side effects from the drug, particularly fatigue and
loss of appetite. "It's strange, because I didn't feel sick from my
hepatitis, but I feel very sick from this drug. My mom is upset because
I'm not eating, and I don't have my usual energy. I used to be able to
caddy 36 holes, play some baseball, then go out with my friends at
night. Now, I can't do more than 18 holes, and I'm falling asleep by 10
PM. But I don't mind feeling this way if the drug helps."
In
July, Eric was named to the Soul of Healing Trust Advisor. Among the goals of the council are finding cures for the many
diseases that affect the lives of thousands of young people and their
families--people like the O'Connors. These are goals that Eric
wholeheartedly supports.
"Having hepatitis C has changed my life,
but not my perspective on life,"Eric said. "I plan to go to college, to
continue with my life. Whether or not I have hepatitis C, I try to make
every day count."
Carolyn Powers: A Hepatitis C Patient Becomes an Advocate Sofosbuvir Velpatasvir | Generic Epclusa
Carolyn Powers
is a community activist dedicated to environmental issues. She is the
single mother of two grown daughters, and has hepatitis C. Recently,
Ms. Powers became an advocate for changing the regulations concerning
medical coverage of living donor transplants in her home state of
California. Sofosbuvir Velpatasvir | Generic EpclusaDue in great part to her efforts, Medi-Cal, California’s
Medicaid program, is altering its policies regarding living donor
transplants. As of December 2000, Medi-Cal will fund adult-to-adult
living donor transplants.
Until the day of my
esophageal bleed (bleeding of enlarged and ruptured veins in the
esophagus) I was in fantastically good health. My only complaint was
getting tired easily. The day before the bleed, I had been out on a
four-and-a-half hour horseback ride with a National Geographic writer.
The
next morning, I was dizzy. I felt like I was dying, so my roommate
called 911. The doctors gave me a nasogastric tube (a tube that goes
through the nose to the stomach) and I vomited two liters of blood.
They were screaming to transfuse more blood. One doctor kept telling me
not to worry, that I wasn’t going to die. But I didn’t understand. I
felt like the calm at the center of a hurricane. I found out later that
about 30 - 50% of people die during that first esophageal bleed.
In
the next day or two, they found that I had hepatitis C and told me I
would need a liver transplant or I’d continue to have bleeds and die.
They said I had a cirrhotic liver. Like many people, I associated
cirrhosis with drinking. I wasn’t in any of the risk groups so I’d
never thought twice about getting tested for hepatitis C.
It was a
very shocking process: the bleeding episode, the diagnosis. I was 54
years old and thought I’d be healthy into my 80’s or 90’s.
I had
just finished working for State Senator Steve Peace and was working part
time for former U.S. Congressman Brian Bilbray (R-CA). This was after
my divorce, and I had no health insurance. There are no handbooks on
what you do when you have a life-threatening disease and no health
insurance.
A local county supervisor helped accelerate things
and spelled out how I could get Medi-Cal. Medi-Cal rules don’t allow
you to make more than $700 a month. If you make more, they pay less for
your medical expenses; and the divorce left me owing money, not having
it.
In the beginning, my daughters teamed up and took over. They
made decisions about what information I was ready to hear -- what was
‘mommy safe.’ Teresa found ALF and the local San Diego Chapter. They
answered her questions, sent newsletters, and told her about support
groups.
That’s when I got hooked up with my UCSD Medical Center
Liver Transplant team. The man who will likely be my surgeon talked
about living donor transplants. My older daughter, Nadine, has my blood
type and was willing to look into donating part of her liver. We
explored the risk factors in adult-to-adult transplants. Some of the
earlier surgeries had donor fatalities, but that was more than ten years
ago. Only 300 or so adult-to-adult living donor transplants are done
in the U.S. each year.
My surgery was scheduled. But then I got a
notice that Medi-Cal did not approve my surgery. They would fund an
adult-to-child transplant but not adult-to-adult because they were stuck
on it being too risky to the donors, and perhaps unethical. It
bothered me that Medi-Cal had not even taken a look at living donor
transplants since 1996, and there have been so many breakthroughs since
then. There are now 17,000 on the liver transplant waiting list; last
year there were 14,000.
I was approved for a cadaver
transplant. 20 - 30% of people die while waiting three-to-five years
for a cadaver transplant in San Diego.
Unless the living donor
option is available it will only get worse and worse. I want to make
Medi-Cal accountable for their actions. Living donor transplants can
lessen the competition for cadaver organs.
Since then I’ve been
working with everyone, including U.S. Senator Dianne Feinstein’s chief
of staff. When Senator Feinstein was the featured speaker at a
luncheon, I was introduced to her and she hugged me and told me that her
staff would be on this until the criteria are changed in California.
She had received a tendon transplant; she understood.
Editor’s
note: There are numerous other states that do not cover adult-to-adult
liver transplants. Ms. Powers has committed herself to working with the
ALF and speaking out on behalf of those patients who are denied this
coverage.
