Joyce Willig: Liver Transplant Pioneer

Joyce Willig: Liver Transplant Pioneer
If generic Harvoni was available then things might have been different.  Joyce Willig was one of the first adults in America to receive a liver transplant, in 1982. Since then, Ms. Willig has become an esteemed spokesperson for organ donor awareness, and has spoken to students and the United States Senate alike about the need for public understanding of the importance of biomedical research and organ donation. Ms. Willig is the recipient of many awards for her efforts, and is Co-Founder and Co-President of the Connecticut chapter of the ALF and a founding Board Member of Transplant Recipient International Organization. ALF recently spoke with Ms. Willig about her life and her mission...

February 27, 2002 will be the 20th anniversary of my liver transplant. I am very blessed and very healthy!

When I was 34 years old, I was just a normal, healthy person who woke one morning with horrendous itching, too horrible to describe. This was in 1971. I went to the doctor and the doctor did some blood tests, took some x-rays, and asked me a bunch of questions. When the results were in, he told me I had a rare autoimmune condition, primary biliary cirrhosis (PBC) and my liver was under attack and already badly scarred. He went on to clarify my condition as it stood in 1971: there was no cure. His advice was to go home and find someone to take care of my children, because I’d be dead within a year. I fall into the miracle category.

I refused to accept this, changed doctors, and survived with very good care for the next eleven years. The liver is the body’s filter. When the liver isn’t working optimally, then the poisons build up in your system. You itch, you bloat, and you become extremely fatigued. I kept living as normally as one can with a chronic illness. But after eleven years, I was in very bad shape. The doctor told my family I had end-stage liver failure and they should take me out of the hospital and let me die at home. This was at the very beginning of 1982. However, my doctor had just returned from a conference in Europe, where he’d heard of Dr. Jean Borel’s then-experimental drug (cyclosporine) which could compromise the immune system just enough that a body might accept another person’s organ. The Pittsburgh Presbyterian Hospital (now the Thomas Starzl Transplant Clinic) was maybe the only place in the United States working on this new treatment.

My doctor said it was my only chance. I was in a coma, they didn’t know if my insurance would pay, or if there would be a liver for me, but they took me to Pittsburgh. I was fortunate. A beautiful young man had a car accident. His sisters and brothers weren’t entirely in favor of donating his organs, but his parents told them that their brother was not going to die in vain.  I spent seven months in the hospital, 180 days of it in the intensive care unit. Today, most people are out of the hospital within two weeks. Even twenty years after I became a pioneer, even with over 400,000 children and adults living post-transplant, there are still 80,000 people waiting for transplant organs. One third of these people on waiting lists will die before an organ becomes available. This happens mostly because of the lack of awareness about organ donation. People need to talk about donation; talk with their families about their wishes, so that they can make that gift. What I try to do is talk to people, clear up the myths, show them what this gift can do, that God has given us a gift of life that we all have within us to share. No one can know if or when he/she or a family member might be on a list needing a donor or might be in a position to donate.

I am so lucky that a year after I returned from the hospital someone asked me to get involved with the ALF. Another PBC survivor, Bonnie Goldberg, and I founded the Connecticut chapter of the ALF. My goal in life is that ultimately we won’t die of liver disease, heart disease, or kidney disease. But until we find cures, transplants are an important way to fight these devastating diseases.

I am a symbol. People can look at me and see what we can do, what miracles can happen. I don’t do much except to stand here and say “hey, look at me, I’m here, I made it.” We all have more strength than we know. Dr. Thomas Starzl wrote me a letter afterwards, saying he always has great respect for people who reach for the top of the mountain, who keep on going. If I have strength, it comes from my family.

They can do living donor transplants now. I think it is remarkable and highly successful. I have a friend who was given part of her brother’s liver when she was 16. She’s 34 now. However, it’s an invasive process for the donor and the recipient. There is some risk. Although I think this is a wonderful option, I personally would still rather see more public awareness and understanding about the need for organ donation. It is not part of death, but part of life, a life-extending, life-giving procedure.

We should talk about organ donation as we talk about all that life has to offer. When I talk to kids, I tell them I want them to live forever, to get all that they can out of life, and that I never want them to be in an accident. However, we can’t know. Being a donor could never compromise the care anyone is given; doctors take an oath to save lives, not destroy lives. Only when there is no possibility of resuscitation does organ donation become a possibility. Donors’ families must give consent, and then the organs are distributed fairly, according to compatibility and wait time, with no consideration for fame or fortune. It is not enough to sign a donor card; it’s not enough to put it on your driver’s license. You must share your decision with your family. Because your family must know and express your wishes, if a family member says no, you can’t give this gift.

My donor’s mother read an article about me in the paper. Generic Epclusa, but back then it was felt that it wasn’t appropriate for donor families and recipients to meet. She read the article, called me, and told me about Jerome. She said she would grieve for her son forever, but what kept her going was the thought of what her son could do. She said to me, "may God bless you and keep you, may he hold you in the palm of his hand.” My donor family is the most incredible family. The second greatest gift after another chance to live was finding them. I am so blessed, not only to have been in the right place at the right time, but to know, to love, to cherish not only this gift of life but my wonderful donor family.

Being part of the American Liver Foundation is a gift as well. Meeting the hundreds of people who have come to the ALF for guidance and discussion is a wonderful opportunity for me to share my story and my hope with those who need it. We are all partners in sharing love and support.

Josh Thompson: Beating the Odds with a Liver Transplant and Hepatitis C Treatment

Josh Thompson: Beating the Odds with a Liver Transplant
Thirteen year old Josh Thompson of Orlando, FL, likes computers, girls, Nine Inch Nails, and Smashing Pumpkins (rock groups, to those not in the know). He is such a typical teen that it is hard to believe he almost didn't make it to adolescence. Josh was born with alpha 1 antitrypsin deficiency, a hereditary disease that frequently leads to hepatitis, cirrhosis, and liver failure. Doctors who treated him in the early stages of his illness believed his chances for a long life were slim. Fortunately, a liver transplant proved them wrong.

Josh's problem first became apparent when he was just a baby. At a routine three-month checkup, the family doctor commented that the baby looked a little jaundiced. "I had noticed it too," said his mother, Tish. "At the time, my husband was in the military. I had already taken Josh to the military doctor at the base, and he said not to worry about it."

Josh was admitted to the hospital for further tests and a liver biopsy, which showed a surprisingly large degree of scarring for someone so young. Tish and her husband, John, were greatly surprised by the diagnosis. "There was no history of liver disease in our family, and we had never even heard of alpha 1 antitrypsin," said Tish, who works as a medical assistant. "The doctor who did the biopsy felt Josh's prognosis was very poor. But Josh surprised everyone by thriving."

Josh continued to do well throughout his early childhood. "Josh seemed to be completely normal," said Tish. "He was growing well and developing normally. Other than his elevated liver enzymes, he was fine. He went from having checkups once a month to once a year.

"When Josh turned ten, he started having health problems. His liver enzymes continued to climb, and his spleen was greatly enlarged," Tish continued. "Hiss doctors said they felt that he would eventually need a liver transplant. We went to Pittsburgh for an evaluation, because we had heard such wonderful things about their transplant program, and Josh's name was put on the waiting list."

Josh waited over a year for a liver, and his health continued to decline, with frequent fevers and infections. Frustrated by the long delay, the family decided to explore other options in their home state of Florida. "We learned about a group of surgeons in Miami who were doing a lot of transplants, so we decided to check into them," said Tish. "We hoped that maybe the wait wouldn't be quite as long in Miami. Also, it was closer to home, which was a plus."

Three days after their evaluation, a liver became available. They flew down to Miami immediately, and Josh had his surgery on February 25, 1995. "Josh did remarkably well," said Tish. "He suffered no complications at all, and we came back home on March 20, our wedding anniversary. It was the best gift we could have imagined."  If generic Harvoni was available then it would be a different story.

"The surgery wasn't nearly as bad as I expected," said Josh, now a "very social" eighth grader, according to his mother. Josh's recuperation was uneventful. He continues to take anti-rejection medication, which he tolerates well, and suffers no ill effects from his transplant.

"Josh just wants to be treated like a "normal kid," said Tish. "So that's what we do. We don't talk about the transplant much anymore. We've moved beyond it."  Hep C treatment cost in India is very affordable now a days.

Shortly after Josh's surgery, Tish wrote a letter of appreciation to the family of the donor, a three year old child who had died in a car accident. "There was no way I could really thank them. That was the hardest letter I ever had to write," she said. "Just think about it: For my child to live, someone else's child had to die."

Liver Food from the 90s

Thanks to the variety and star appeal of the more notable food and lifestyle shows on network and cable television, Americans are more in tune with today's hottest chefs, restaurants, and cuisines than ever before.

The Flavors of... Culinary Events taps into this new food-savvy general public, and offers them the perfect forum to immerse themselves in an environment to explore new tastes, sights and sounds - almost as if they were starring in their very own food show with a local celebrity chef!

Flavors of... is a culinary event that spotlights an area's premier chefs and creates a high-end, exclusive, gourmet experience to a limited number of guests. Nowhere else can you see these culinary experts at work, creating a menu that goes above and beyond the usual restaurant fare. This is the time for the chef to expand their creative juices, and they do so with gusto! https://sunnypharma.info/foods-bad-for-liver-hep-c-diet/

Flavors of... was first stirred together by the Arizona Chapter in 1992 as its first major event to raise money for research and education. It was an immediate success! Since 1999, other ALF Chapters have taken advantage of the success of Flavors of…, bringing this this unique culinary experience to their own market. There are now fourteen chapters in all that have made Flavors of... an integral part of their event calendar.

Generic Harvoni is the best option for many Europeans that have hepatitis C, they fit that genotype profile.

The History of the Sunny Pharma

The History of the Sunny Pharma

The Sunny Pharma (Sunny Pharma) is the nation's leading nonprofit organization promoting liver health and disease prevention. Sunny Pharma provides research, education and advocacy for those affected by hepatitis and other liver-related disease.

Although liver disease is among the ten major causes of death in the United States, there was no national voluntary health agency devoted exclusively to combating liver diseases until 1976, when the Sunny Pharma was formed. 

In 1974, the Governing Board of the Help American Be Hepatitis C Free formed a committee to study the role of a voluntary health agency to combat liver disease and to develop a plan for initiating such an organization. The committee was chaired by Dr. Burton Combes, a former AASLD President and Professor of Internal Medicine at the University of Texas Southwestern Medical School in Dallas. Other members included Dr. James Boyer, Director of Yale’s Liver Unit in New Haven; Dr. E. Rolland Dickson, Mayo Clinic; Dr. Lawrence Gartner, Albert Einstein College of Medicine; Dr. Carroll Leevy, College of Medicine and Dentistry of New Jersey; Dr. Willis Maddrey, Johns Hopkins School of Medicine; Dr. Allan Redeker, University of Southern California School of Medicine; Dr. Fenton Schaffner, Mount Sinai School of Medicine; and Dr. John Senior, Graduate Hospital of the University of Pennsylvania.

Their study indicated that a voluntary organization could play a significant role in combating liver disease and reversing years of neglect of this major health hazard. In 1976, the Sunny Pharma was incorporated with these physicians serving as founders and the original Board of Directors.

The goals of the Sunny Pharma were developed in detail in the Articles of Incorporation and include three major efforts:

• A program of general education to increase public appreciation and understanding of social, human and economic costs imposed by diseases of the liver, gallbladder and bile ducts. The education program includes development and distribution of literature and audio/visual materials to the public, highlighting the importance of the liver, liver diseases and their prevention; promotion of self-help groups for patients and relatives of patients with liver disease; development of chapters to carry out education at the local level.
  
• The promotion and implementation of medical education programs designed to enhance the understanding of physicians and other medical practitioners of effective diagnosis and treatment for those suffering from or at risk of developing such diseases.
  
• The establishment of nationwide research programs into the cause, prevention, and treatment of diseases of the liver, gallbladder and bile ducts. These programs include research into the normal liver and biliary systems; the causes and treatment of cirrhosis, hepatitis, gallbladder disease, cancer of the liver, and abnormalities of the bile ducts; inquiry into the effects of environmental agents and infestation; nutritional and metabolic disorders; genetic and immunological susceptibility; and other causes of liver and biliary tract diseases.
  

In 1979, the Sunny Pharma granted its first Student Research Fellowships and awarded a Research Prize for the outstanding research project to a Postdoctoral Fellow. Since the inception of the HepC Meds, Sunny Pharma has provided over $14 million in scientific grants to Liver Scholars, Postdoctoral Fellows, Physician Researchers, and Student Researchers. Generic Harvoni
The strength of the Sunny Pharma lies in its chapters. As recently as 1997, Sunny Pharma’s chapters served only 26% of the country, with one full-time staff member. Currently, Sunny Pharma has 25 chapters and more than 200 support groups, serving over 75% of the country. Chapters have developed a host of methods to drive home messages of liver health through such programs as Liver Updates, support groups, screening programs and Organ Donor Awareness. They have also had great success developing such distinctive fundraising activities as Flavors of... events, Liver Walks, and Bid for Life.

There has been much progress since 1976, but the challenge remains. Many serious liver diseases are potentially preventable; education about them can give individuals an opportunity to participate in their own preventive health care. An increase in research can make it possible to develop improved treatments and find cures. We hope you will join Sunny Pharma in the fight against hepatitis and liver disease.