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Transplanting Hope for HIV Patients
In 1996, people with HIV–the virus that can lead to AIDS–found new hope in a cocktail of drugs known as highly active antiretroviral therapy. Average survival from the time of diagnosis jumped from eight to 35 years.
That was the good news. There was bad, as well. Although people with HIV are now living decades longer, they are dying of illnesses (known as opportunistic infections) they have contracted along with HIV.
“What is killing these patients is hepatitis C and cirrhosis, not AIDS,” says Nicholas Nissen, MD, assistant surgical director of Cedars-Sinai’s Comprehensive Transplant Center. In fact, liver disease is the fastest-growing cause of death in the HIV-infected population.
Hepatitis means inflammation of the liver. Of the one million people in the U.S. with HIV, 20 to 30 percent are co-infected with hepatitis C. A smaller percentage has hepatitis B, alcohol-related liver disease, or any number of other liver conditions. Like HIV, the hepatitis B and C viruses can be transmitted sexually, by sharing contaminated needles or syringes, or through contact with infected blood or bodily fluids. Hepatitis and other conditions of the liver can be deadly when they lead to cirrhosis, a condition of severe scarring of the liver. In end-stage disease, the liver is generally so compromised that it no longer removes toxins from the body. For these patients, a liver transplant is the only hope.
Thirty-nine-year-old Craig W. was diagnosed with both HIV and hepatitis B in 1989. For years he kept his HIV under control with antiretroviral therapy. For the most part, he experienced few problems from his hepatitis.
But in the summer of 2006, his liver failed. He was at work. Craig is an engineer and a senior-level manager with an Internet services company. “I was in a meeting in my boss’s office and I had to grab a trash can and throw up into it,” he says. “I got disastrously ill in the course of a just a few weeks.”
To determine how sick someone is, doctors use a numerical system called MELD (Model for End-Stage Liver Disease) that is based on lab test results. It ranges from a score of 6, which is not that ill, to 40, which is gravely ill. Craig had a score of 36. He was in the throes of advanced liver failure. Without a new liver, he would die.
Before the breakthrough of antiretroviral therapy, few surgeons considered performing transplants in people with HIV. They worried that the immune suppression drugs given to patients to prevent organ rejection might accelerate their HIV disease. Their immune systems were already fragile. It would be like pouring gas on a fire.
With antiretroviral therapy, people infected with HIV are far more stable. However, until recently, patients and clinicians lacked the necessary data to determine the safety and efficacy of transplantation and immune suppression therapy in this group. The lack of conclusive data led to denial of care by many transplant centers and third-party payers. It wasn’t until 2005 that Governor Schwarzenegger signed into law California Assembly Bill No. 228, prohibiting third-party payers from declining coverage for transplantation based upon HIV status alone.
To address the lack of clinical data, in 2003 the National Institutes of Health spearheaded an important study to look at the safety of liver transplants in HIV-positive adults with end-stage liver disease. The study intrigued Fred Poordad, MD. “Here in Los Angeles, we have a large population of individuals infected with the virus,” says Dr. Poordad, who is now chief of the hepatology section of Cedars-Sinai’s Comprehensive Transplant Center. “There was a real need for liver transplants in our community.”
As far as Dr. Poordad was concerned, the time was right to explore the scientific data. “Dr. Nissen was also a proponent of this,” he says. “Together we were able to convince our colleagues that this is an important arena.”
Cedars-Sinai became one of only two medical centers on the West Coast to participate in the NIH study, with Drs. Poordad and Nissen as co-principal investigators. The other center is at the University of California, San Francisco, where kidney and liver transplants are performed in adults and children with HIV. Twenty centers are participating nationwide, and will enroll a total of 125 liver-transplant and 150 kidney-transplant recipients. “We decided as a group to transplant only under the auspices of the study, to collect data in this field where–even today–little is known about the outcomes,” says Dr. Poordad.
As ill as Craig was, he was not yet a good candidate for the transplant study because he had a detectable viral load in his blood. That is, he had a countable level of HIV virus. His doctors switched Craig’s medications, hoping his levels would fall. He could do nothing but wait.
“I was such a mess,” he says. “At that point in liver failure, you are so far gone that your kidneys start to fail and the rest of you goes with it.” He developed ascites, a buildup of fluid in his abdominal cavity. At one point, doctors removed six liters of the liquid from his belly. “I immediately dropped four pants sizes,” says Craig, only half joking.
He could not sleep for more than minutes at a time due to what he calls, “severe unsettledness. Basically, your whole body is being poisoned because it is not removing toxins,” says Craig. “You just squirm.”
Eventually, his drug regimen kicked in. By February 2007, his viral load was as it is today: undetectable. The Cedars-Sinai transplant coordinator called Craig to tell him he had made it onto the transplant list. Perhaps not even 12 hours later, Craig received a second call: They had a donor.
Dr. Nissen performed the five-hour surgery. Within days, Craig’s jaundice disappeared. A few weeks later, a healthy-looking Craig stopped in to visit his transplant support group at Cedars-Sinai. They could not believe his transformation.
Surgeons at Cedars-Sinai have since performed several transplants in patients infected with HIV. Half of the patients are now more than three years post-transplant. “I am happy to say that our survival is excellent in this cohort,” says Dr. Poordad. “I credit our fantastic team of surgeons, hepatologists, infectious-disease doctors, and transplant nurses, and our incredibly diligent research staff, without whom none of this would be possible.”
Taking a break from work to talk about the transplant that saved his life, Craig shares the mixed emotions this new lease on life stirs when he thinks about those he has loved and lost to the virus. Two friends who were most dear to him succumbed to complications from AIDS. “They were not around long enough to have access to this clinical trial or this type of care,” he says. “So I have no excuses: I am enjoying my life.”