Hepatitis C Survivor  

Ignorance.  Complete Ignorance And From Unlikely Places

Written By:  Teri Gottlieb

You know, I could do an entire series of articles on the ignorance that we run up against in the HCV arena. This just may very well be the first of many. Every so often, something in the Hepatitis C world fires me up. Today was one of those days. Today it was this article from the Las Vegas Review Journal that someone posted on one of the Hepatitis C groups.  I want to address some of the BS in this article:

​The article is in green...  My comments are in red.

Posted: Mar. 14, 2010 | 12:00 a.m.

Soon after Patty Aspinwall was diagnosed with hepatitis C, the nightmares began.  For months her sleep was unsettled, she said, because she saw the man that she had come to believe was the embodiment of evil, Dr. Dipak Desai, chasing her.  "Sometimes I still wake up gasping for breath," the 56-year-old grandmother said Thursday as she recalled what her life has been like in the two years since Southern Nevadans learned that clinics owned by Desai were at the center of a hepatitis C outbreak.   

Aspinwall said her sessions with a therapist and anti-depressant medication "no longer make the nightmares a nightly thing."  But sometimes they reoccur. Desai is "trying to catch me ... so I have to run," she said.  It was Desai who scheduled Aspinwall for a colonoscopy at the Endoscopy Center of Southern Nevada on Shadow Lane after she complained of diarrhea.

In February 2008, local health officials revealed that authorities investigating a cluster of hepatitis C cases had observed nurses at the Shadow Lane clinic reusing syringes in a manner that contaminated vials of medications and, they believe, infected patients with the virus that attacks the liver. According to clinic staffers interviewed by city investigators, this practice was done at the direction of Desai and other administrators to save money. Seven cases, including Aspinwall's, were genetically linked to procedures that took place on Sept. 21, 2007, at the Shadow Lane clinic.  

"Not a day goes by that I don't think about what's happened, how it's affected my husband and me," Aspinwall said as she sat with attorney Billie-Marie Morrison in the law offices of Craig P. Kenny & Associates. "My entire life has changed -- work, family, health, everything."  As a Clark County grand jury opened a criminal inquiry last week into the hepatitis C outbreak, the Review-Journal spoke with four people who say they contracted the sometimes deadly infectious disease at Desai's clinics. All four have lawsuits pending against Desai, other clinic personnel, and medical and business enterprises that worked with the clinics.  

What Aspinwall, Kenneth Nogle, Megan Gasper and Alynne Griffiths have to say about their lives today is largely the stuff of nightmares.Those who are married break off sexual intimacy to ensure the disease isn't passed on to a loved one.  
This is ridiculous.  There is no chance of HCV being transmitted sexually by a heterosexual couple in a monogamous relationship.  NONE.  

A grandmother cooks with surgical gloves and kisses her four grandchildren only on the top of the head.   
WHAT?  Really?  Does this person have HCV or Leprosy?  There is absolutely no reason for this kind of precaution.  HCV is spread by blood to blood contact not by kissing or cooking.  

An engaged couple worries that getting pregnant means having an infected child. Fourteen hours of sleep can't fight off the exhaustion caused by the virus.  

A 12-month treatment regimen with only a 40 percent chance of success, so tough that doctors compare the side effects to those caused by the most powerful chemotherapy, has failed.  
This is totally not the case.  In some cases, yes, treatment is rough but comparing it to the most powerful chemotherapy is a blatant exaggeration.

Family members, who fight to control their anger at doctors and medical personnel associated with Desai's clinics while trying to be supportive to those near and dear, say they feel helpless as relatives fight the disease.

A cop's battle: Teresa Wigley is proud that Nogle, her 25-year-old son, became a Las Vegas police officer. But she is at turns angry and crestfallen as she recalls his struggle with a yearlong treatment regimen that included interferon, a potent substance sometimes capable of beating back hepatitis C. "The people at that clinic took my son away from me," she said. "He used to be so high energy, go, go, go. He was 175 pounds of muscle, lifting weights and running every day, and then he went down to 140 something on the treatment. He could barely get out of bed. It just tore me up.  "I had to be strong for him and couldn't let him see me cry. He slept 14 hours a day. ... He had to quit college because of this. That's how much energy he had. He used to be able to work full time and go to UNLV full time without any trouble.  "One doctor told him he probably had only 20 years to live and that he couldn't ever have children," she recalled. "I wanted to hunt that doctor down."
Again, just ridiculous.  Most people with HCV don't even get diagnosed for 20 to 30 years.  Only 20% of the people with Hepatitis C will go on to have serious liver disease.  And there is nothing that says a man cannot father a child when he has HCV.  NOTHING. The virus CAN, in fact, be passed from mother to child during the childbirth process but not from the father to the child.  

Unlike Aspinwall, Nogle's case of hepatitis isn't one of the seven genetically linked through testing by public health officials to Desai's clinics. Nor is his case one of the two acute cases identified by the Centers for Disease Control and Prevention linked to either Desai's Shadow Lane clinic or the Desert Shadow Endoscopy Center on Burnham Avenue. Health officials say an additional 106 cases are "possibly linked" to Desai's clinics, though no names have been released.  Morrison, Nogle's attorney, says his case, like those brought by Gasper and Griffiths, is solid because his only risk factor was getting treated at a Desai clinic.

As Nogle played Wednesday with his dog Dunkin behind the Mountain's Edge home he shares with his fiancée, he said the fact he could laugh at the beagle's antics proved he was feeling better.  "I don't think I really laughed again until recently," he said. "My weight's up to about 155 now.  But I still have to get tested pretty soon to see if the treatment really worked. I worry that I'm going to need a liver transplant in 20 years."  Nogle, a training officer, injected himself in the stomach with medication from October 2008 until October 2009. He said he simply willed himself to get through the numerous side effects including chills, fever, headaches, fatigue, weight loss and depression.  "I took vacation when it got real bad," he said.Nogle ended up at Desai's clinic in November 2006 following a trip to the University Medical Center emergency room.  "I had blood in my stool and was worried," he said. "The ER doctor looked up there and said he couldn't see anything."  The colonoscopy was performed by Desai. The results of the procedure showed he had hemorrhoids.  

In early 2007, Nogle, a regular blood donor, made a donation.  A letter he later received from the blood service said he could no longer do so because tests showed he had antibodies for hepatitis C.  After seeing some primary care doctors, they recommended he see a Gastroenterologist.  Nogle said he went back to the Endoscopy Center for a retest, which came back negative. "I lived for more than a year thinking I didn't have it."Then came the news conference on Feb. 27, 2008, when public health officials urged people who had procedures at the Shadow Lane clinic to get tested for hepatitis and HIV. Through testing, Nogle soon found he had the disease. There was more bad news: The hepatitis was already eating away at his liver.  
There is no way that HCV could do that much damage in two years time.  HCV is a very slow moving virus.  If this man has liver damage, he's probably had HCV for at least 10 years.

"It was so hard telling my girlfriend," he said. "She got tested right away for it, and she doesn't have it. She has to get tested regularly. ... 
No she doesn't.  Not unless there is blood to blood contact.  

We want to have kids but are afraid the disease could be transmitted to the child."  
The "disease" can only be transmitted from mother to child. Not father to child.  

Dr. Richard Chudacoff, a specialist in obstetrics and gynecology, said because hepatitis C can be transmitted sexually, in vitro fertilization, a process by which egg cells are fertilized by sperm outside the womb, is the safest way for someone in Nogle's position to have children.  "Only the nucleus of the sperm is used; there is no virus that way," Chudacoff said.  
Obviously Dr. Chudacoff is ignorant when it comes to Hepatitis C.  The HCV virus is NOT found in sperm and HCV is NOT transmitted sexually.  Hepatitis B IS transmitted sexually.. He has his hepatitis' mixed up!  UGH  

A determined woman: Megan Gasper, 34, and her husband, Thomas, a 35-year-old Henderson police sergeant, say their two sons, ages 6 and 8, have helped bring joy into their lives at a very difficult time. Not long ago, Megan Gasper found out that her year long treatment for hepatitis had failed.  "It is still fun to watch them grow up," she said, tears welling in her eyes as she sat with her attorney Robert Cottle in the downtown law offices of Mainor Eglet & Cottle.  "But I don't know how good a mother I am sometimes. My temper can be short because of the medication. You're moody. I'm in a fog. It's hard to concentrate. It's hard to get out of bed."  Thomas Gasper, who held his wife's hand, said he doubts his anger about what happened to Megan will ever go away.  "I'm a police officer," he said. "I want to see justice done."  The illness has strained their relationship, but the Gaspers are determined to make it work.  "We've gotten counseling," he said.  Megan Gasper, whose case is also not among the genetically linked cases, said the couple's Mormon faith has helped them.  "I'm commanded to forgive," she said. "But I'm not going to forget."  In early 2006, Megan Gasper was having digestive problems. Her primary care doctor sent her to the Shadow Lane clinic for a colonoscopy. She remembered that the place was crowded and dirty, a place she wouldn't have gone to if her insurance didn't mandate it.  It was determined that a mass needed to be removed and she was referred to a surgeon. The mass was removed. After treatment, she went in for a colonoscopy at the Burnham Avenue clinic. She was cancer free. Less than a year later she received the notification letter from the health district recommending she have a blood test. When she found out she had hepatitis C, she said, she became kind of hysterical. "I'm an ultra long-distance runner," she said. "I could run 50 miles. I was always in great shape."  Doctors felt that because of her young age and the progress of the disease she had to undergo treatment.  "It's as bad as I heard chemotherapy was," she said. "It really hits you."  At best she gets four hours of sleep a night, she said.  Thomas Gasper does all he can to give his children a normal upbringing.  "I'm still coaching sports with them," he said. He doesn't like taking his children to the doctor, and it's not because of the time.  "I don't trust them," he said. "I'm afraid of what they can do."  Now on a daily injection of interferon as well as anti-viral pills for another 18 months, Megan Gasper isn't sure what the future holds.  "I'm scared," she said.

Attack from within: Alynne Griffiths, 72, is afraid her hepatitis is snaking through her.  "I always try to be positive, but I'm afraid about what's happening inside me," she said. "I thought everything was going fine, and now I have to worry about this. I'm exhausted a lot now. It's not right."  She received two procedures at Desai's Shadow Lane clinic, first receiving a colonoscopy in September 2005 and then an endoscopy in March 2006.  "I went there because I had bad stomach pains," she said.  When she received a letter from the health district to get tested, she was sure she didn't have the virus. "I knew I had never done anything wrong," she said of the disease often associated with intravenous drug use, tainted blood transfusions, working with blood products and unprotected sex with multiple partners.  
Hepatitis C is NOT spread thru unprotected sex with multiple partners.  

Griffiths, the former owner of an art gallery, doesn't like to talk about what has happened.  "She finds this very unsettling," said her attorney, Gerald Gillock, who sat across from her in his downtown office.  Griffiths still finds it difficult to believe her insurance carrier tried to send her to doctors associated with Desai for treatment of hepatitis.  "It took a year before they'd let me get another doctor," she said. "Why would they keep trying to send me back to people who made me sick?"  Her current doctor, she said, advised her not to get the taxing treatment for hepatitis C.  There was a 40 percent chance of success, which didn't sound too good, she said.  So she just hopes her body can fight off the disease.  
This woman is 72 years old.  She'll be 92 before the virus has a chance to do serious damage to her liver.  IF, in fact, it does at all.  

That's what Patty Aspinwall is doing as well. She also didn't like the odds of success her doctor quoted her, also 40 percent.  "My doctor says I'm pretty healthy right now," she said.  She's well aware that having hepatitis C means she has a lifelong risk of anemia, cirrhosis, liver failure and liver cancer.  "I can get pretty negative," she said. "That's why I'm taking anti-depressants and why I still see a therapist sometimes."  About a month after her Sept. 21, 2007, colonoscopy -- which showed that she had no problem with her colon -- Aspinwall said she felt nauseated.  In the weeks that followed, her husband noticed she was turning yellow.  Her primary care physician said she should go to the emergency room.  Blood tests taken at Mountain View hospital around Thanksgiving 2007 determined she had hepatitis C. "I started questioning everything about my life," she said. "I never used drugs, never did anything that were risk factors. I didn't want to talk with family and friends. I felt dirty. I got secretive. I didn't want to talk to anybody."  She couldn't concentrate at work, and she believes that had much to do with her being laid off from a telecommunications company last year.  When the FBI interviewed her about her experience, Aspinwall said she held up well.  Until it was over.  "A woman there told me how brave I was to talk about what happened, that I had a lot of courage," she said. "But I didn't feel brave. When I got to the car, I just broke down and couldn't stop crying."  
Lately, she said, as her health has rebounded, she's finding happiness again in sewing.  But Wednesday night, she had a difficult time sleeping.  "I go before the (Clark County) grand jury today," she said Thursday morning, the first day the panel started collecting information that is expected to lead to criminal indictments. "Let's hope some kind of justice is done."
Contact reporter Paul Harasim at pharasim@reviewjournal. com or 702-387-2908.

There are more than enough misconceptions going around about Hepatitis C, we don't need a reporter that didn't fact check to cause more of them.  It is information like this that perpetuates the stigmas that are going around about people with Hep C.  I contacted both Paul Harasim and the Las Vegas Review Journal to speak with them about the discrepancies in this article.  Neither returned my calls or e-mails.