Hepatitis C: The Ticking Time Bomb of Kentucky's Prisons

By Michael L. Jones
LEO
January 31, 2001


Inmate Michael Paulley thought he had paved the way for other prisoners in the Kentucky penal system to be treated for hepatitis C when a federal judge forced the Department of Corrections to allow him to receive medical care for the liver ailment.

But one year later -- and several months after the state adopted a treatment policy -- Paulley and his physician, Dr. Bennet Cecil, claim nothing has changed for other inmates suffering from the life-threatening disease.

Cecil said Paulley's lawsuit probably saved his life, but he said Corrections officials do not seem willing to treat other prisoners who have the same illness.

"What (Corrections officials) say on paper and (what) they do in practice are two different things," Cecil said.

Corrections' medical director, Dr. Richard Kimbler, did not return repeated telephone calls seeking comment. And Corrections Commissioner Tom Campbell declined to be interviewed, referring questions to the department's public information officer, Pamela Trautner.

Cecil, who also operates the Hepatitis C Treatment Center on Dutchmans Lane, estimates that as many as 20 percent -- or 3,000 -- of the 15,000 inmates in Kentucky's prisons have the disease. That is a higher rate than the general population, he said, because people in prison tend to have engaged in behavior, such as unprotected sex, intravenous drug use and body tattooing and piercing, that put them at greater risk of being exposed to the hepatitis C virus.

Trautner said only 210 inmates have requested evaluation for hepatitis C since the policy took effect in September. Approximately 20 of those prisoners have begun treatment or will soon, Trautner said.

"This program is fairly new," she said. "Notices were posted in all the Corrections facilities, and we evaluated the inmates who asked to be evaluated."

Corrections' hepatitis C policy lists eight criteria for treatment, including: a positive hepatitis C test; consent to random drug testing; a liver function evaluation; a liver biopsy showing moderate inflammation; and a life expectancy (other than from liver disease) of more than 20 years.

There also are 18 reasons for exclusion, which include: clinical signs or symptoms of decompensated liver disease (cirrhosis); high-risk behavior in prison after diagnosis; and poor control of a major medical illness such as diabetes, hypertension and chronic pulmonary disease.

Cecil said it is unconscionable to exclude prisoners who have developed cirrhosis.

"The way hepatitis C works, one out of five people develop cirrhosis. Those are the ones in danger of dying. The ones that have cirrhosis should be treated. It's at that point the disease is life threatening," he said.

Trautner said there are instances when an inmate diagnosed with cirrhosis and hepatitis C can be treated. But that is not often the case, because the drugs prescribed for hepatitis C have side effects that can be immediately more deadly than cirrhosis. "The treatment is very aggressive and the drugs can be toxic."

Hepatitis C is a viral illness that causes liver inflammation. It has been identified by the Centers for Disease Control as the leading cause for liver transplants in the United States. About 4 million Americans have hepatitis C, which often is referred to as the "silent epidemic" because the virus can live in the body for 10 years to 20 years without any symptoms appearing.

The hepatitis C virus is spread through blood-to-blood contact. It can be contracted through blood transfusions as well as infected needles shared for drug injections and body tattooing and piercing.

The C virus is not related to those that cause other forms of hepatitis: A (transmitted by food), or B (transmitted through sexual intercourse or contact with infected blood).

More than 90 percent of the people who contact A or B recover and become immune. There are vaccines available for A and B, but not hepatitis C.

Some common symptoms of hepatitis C are extreme fatigue, jaundice, fever, itching and joint pain.

Paulley, whose medical condition and legal battle for treatment were reported first by LEO in June 1999, is now housed at the Kentucky State Reformatory in La Grange. He is serving a 20-year-sentence for burglary, being a persistent felon and statutory rape and is scheduled to be released in 2005. He was diagnosed with hepatitis C in 1993, when he was a prisoner at the Luther Luckett Correctional Complex also near La Grange. However, there was not a hepatitis-treatment policy for prisoners at the time, and Paulley didn't receive medical care for the disease until after he asked to be taken to the Veteran's Administra-tion Hospital in Louisville in 1998.

When he first saw Paulley as a patient, Cecil said he suffered from "severe, but stable cirrhosis (of the liver)." Cecil recommended treating him with interferon and ribavirin, which hampers the virus' ability to multiply. The combination of drugs has been shown to reduce the virus to undetectable levels in 40 percent of the patients who use it, Cecil said.

The treatment can cost up to $20,000, but -- from the beginning -- the state would not have had to bear the expense in Paulley's case. He served in the U.S. Army from 1972-74 and the VA was willing to pick up the expense. Corrections officials, however, refused to allow Paulley to be treated.

Cecil and Paulley's attorney, Alan Rubin, said Corrections administrators were worried that his case would set a precedent that would force them to treat all prisoners with the disease.

In a May 10, 1999 letter to Cecil from Dr. E. Thompson O'Neal, then medical director of the Corrections department, "fairness" was cited as the reason for not allowing Paulley to use his status as a veteran to obtain medical care. "It is certainly not acceptable to allow one inmate to receive special treatment that is denied to others," O'Neal wrote.

The agency was in the process of writing guidelines for "universal" care of inmates with hepatitis C, O'Neal said in the letter. "I appreciate your impatience with this process, but you must understand that in your case the issue is not cost but fairness. Prisoners with more resources, money or influence cannot be granted better food, housing or medical care than those without those benefits."

In late 1999, Rubin filed a lawsuit on Paulley's behalf. In January 2000, federal Magistrate C. Cleveland Gambill ordered the Corrections department to let Paulley be treated. Gambill's decision was upheld by U.S. District Judge John Heyburn II in March.

Cecil said Paulley has responded to the drug regimen over the last six months and he may conclude treatment in about two months.

"So far it's a success," Cecil said. "After six months, the virus is at undetectable levels in Mr. Paulley's system. The true test will come after we discontinue the treatment. If the virus does not (start reproducing again), it's been a total success."

Paulley's experience did lead to Corrections guidelines for treating inmates with hepatitis C. Cecil insisted, however, that the state has resisted his attempts to help other inmates suffering from hepatitis C.

"I've made requests to see 70 veterans who might have hepatitis C," Cecil said. "We made appointments for them, but Corrections never sent out the prisoners. I don't know why they would not let the prisoners come to see me unless they were afraid of the cost."





Outlook Bleak

For Other Inmates

Paulley said he feels fortunate to be treated, but it makes him uncomfortable when so many others around him are still suffering from the disease.

"This place is loaded with men who have (hepatitis), and they are being denied life-saving treatment," Paulley said in a November interview in the prison's visiting room. "There are horror stories you wouldn't believe."

Donald Neidlow is one of those stories.

Neidlow, 48, is in the third year of a 10-year sentence for first-degree assault. He will be eligible for parole in another three years.

A former IV drug user, Neidlow found out he had hepatitis B and C in 1996 after he had been arrested and charged in Bullitt County. The Bullitt County Jailer sent him to the Kentucky Corrections Psychiatric Clinic, which adjoins Luther Luckett Correctional Complex, for a psychiatric evaluation before he was sentenced on the assault charge. When he was returned to the Bullitt County Jail, Neidlow said he was placed in isolation.

"I don't know what the reason was," Neidlow said. "Apparently, the disease ain't that bad. They got us among everybody here (at the Kentucky State Reformatory), and at (the psychiatric clinic) I ran around in the population. Only in the Bullitt County Jail, they stuck me in the hole by myself."

The Corrections Department does have a "Serious Infectious Disease" policy to protect staff and inmates from the spread of hepatitis B and C and HIV. It says an inmate who is diagnosed with a serious infectious disease should be housed in a way that will "control and reduce the risk of transmission of the disease." Corrections personnel also are directed to take other precautions such as wearing disposable gloves when dealing with a prisoner who has a blood-borne disease.

Neidlow, who is also diabetic, has been diagnosed by Corrections doctors with cirrhosis of the liver caused by hepatitis C. He has lost 34 pounds in the last six months, and he suffers from fatigue and frequent vomiting. The Kentucky Parole Board, in some instances, can approve an inmate for parole for medical reasons, but Neidlow is ineligible because he was convicted of a violent crime.

Because of his illness, Neidlow says: "I sleep for days at a time. It does me like that. I get to where I'll throw up. I can't go to chow hardly, because it embarrasses me to get sick in front of everybody. And then I got to walk around really easy. Eighty percent of the time it's like you got the flu real bad. It makes you feel like the pits."

He said he has asked to have the hepatitis treated but "my doctor gives me the same old answer. I can't get treatment because I have cirrhosis. ... They have not given me the first pill, the first drop of anything, but a big bunch of crap. I'm sorry for talkin' like that, but you're sittin' in that cell all day and all night thinkin' about dying when you don't necessarily have to be dying. ... First, they got me in here and I couldn't get the treatment because it was in the experimental stage. Now, the excuse is that I've got cirrhosis. ... What else can it be besides money? I'll sign anything they want."

The problem for Corrections is that it has a medical budget, which is set by the Kentucky Legislature, of $25 million. In published reports, Vicki von Bokern, a Corrections' medical consultant, has estimated that it would cost the department $25,000, including medication and testing, to treat each prisoner. If only 1,000 of the 3,000 men and women Cecil believes may be infected actually qualified for treatment, the entire medical budget would be exhausted.

That possibility became more acute several months ago when the Veteran's Administration changed its own policy concerning incarcerated veterans and will now only pay for half of the treatment.

Because of its limited medical funding, Trautner said, Corrections has to prioritize its spending. But, she said, all inmates receive proper attention.

"The Department of Corrections provides quality medical care to maintain the health of those confined in one of Kentucky's facilities," Trautner said. "Each facility has a primary care physician and a working relationship with the University of Louisville, the University of Kentucky and Jewish Hospital. All of these services are available to inmates."

But Cecil maintains that prisoners were not being referred to him even before the VA guidelines were rewritten.

Rubin, Paulley's lawyer, attempted to file a class-action lawsuit on behalf of the other prisoners last year, but Judge Heyburn ruled that the cases were so dissimilar that they would have to be pursued separately. Rubin said the latest inaction by the state may provide the basis for a future class-action case.

"I don't think that the cases are significantly different," Rubin said. "Prisoners are still not being treated. There are a lot of guys who have it. And Corrections is not following its own rules.

"I'm glad Michael Paulley is getting treated and doing better. But there are a lot of guys who are going to be dying needlessly before this is over."

Todd Edmonds believes he'll be one of them. Edmonds, 38, was released from the reformatory Dec. 29 after serving a 15-year sentence. Another intravenous drug user, Edmonds discovered he had hepatitis C in 1997 before he underwent shoulder surgery.

"When the test came back they called me up (to the doctor's office) and told me I had hepatitis C," Edmonds said in an interview a month before his release. "They lied basically. They said, 'You're not in no bad shape, it's not hurting your liver or your health none.' They basically told me that. I seen about six doctors and they basically all told me the same thing. Then when the federal court told them they had to treat us, then I'm too far gone. ... I got a letter (from a Corrections doctor) that said under the protocol I couldn't be treated. I didn't even know anything about the protocol. The letter said I couldn't get treated because I was too close to getting out."

Edmonds filed a grievance and wrote letters to Gov. Paul Patton, the U.S. Surgeon General and Corrections' medical director Kimbler. He said he received no responses.

Edmonds said he started experiencing cramps and stomach pains last year. He said he stopped taking the stomach medication the doctors prescribed to him when he learned it could cause liver damage. The whole experience left him frustrated.

"This is my second time in the penitentiary," Edmonds said. "I been out, in the last 18 years, three months, (maybe) two months. I ain't got no money to go pay for this. What do I have to do, go rob a bank? ... I don't like to sound discriminatory or nothing, but there are guys in here with AIDS/HIV that there is no cure for and they are getting top-notch treatment. ... To me whatever I do society can't blame me, man. (If I) go out here and kill hundreds of thousands of people, I'm considered as a murderer. (But) they can do it. There is some type of a medical term that can cover them for that. But it's still murder." LEO



Contact the writer at mlj@leoweekly.com





SIDEBAR:



Losing Patients

Dr. Bennet Cecil is passionate about treating veterans with hepatitis C. So he's scratching his head over VA's decision that only U of L doctors see new patients.



by Michael L. Jones



When Dr. Bennet Cecil joined the staff at Louisville Veteran's Administration Hospital in 1997, there were fewer veterans with hepatitis C treated there than at almost any other VA facility in the country. Now the hospital has the highest number of hepatitis C patients in the VA system.

Cecil currently is seeing 207 patients compared to an average of three hepatitis C cases a year at all VA hospitals. So Cecil was surprised last month when officials at the Louisville VA Hospital notified him that no new hepatitis C patients would be assigned to his care.

"They told me I could continue treating my current patients, but I couldn't treat any new ones," Cecil said. "New hepatitis patients are going to be treated by the University of Louisville. Before I came here, no one had been treating veterans for hepatitis. U of L was getting money to do it, and it wasn't being done. They might have had one or two patients total."

Dr. Dale Freeman, Louisville VA chief of staff, said the decision to divert hepatitis patients to the University of Louisville Hospital was made because a new gastroenterology/hepatology team is in place. Dr. Craig McClain, a gastroenterology professor and vice chairman of research at U of L's School of Medicine, was lured from the University of Kentucky last year in a joint effort by U of L and Jewish Hospital, which is also a U of L teaching affiliate. McClain is an expert in liver diseases, and he brought with him a 10-member research team.

"U of L is our affiliate," Freeman said. "This is one of the university's teaching hospitals. They provide most of our existing services. The new research team is something that they did not have before."

Cecil, 49, is an hourly paid employee at the VA hospital and also operates the Hepatitis C Treatment Center on Dutchmans Lane, which he opened in 1998. He does not currently treat veterans at his private clinic; instead, he refers them to the VA Hospital.

Hepatitis C is a viral disease that is spread through blood-to-blood contact; military personnel and veterans are susceptible because of exposure to blood during training exercises and combat. Cecil estimates that as many as 850 local veterans could suffer from the disease.

With such a large pool of potential patients, Cecil said, there is no reason he can't take on new cases. In fact, he recently added a full day to the four half-days he already worked at the VA in order to do just that.

"If U of L wants to treat patients, that's all right," Cecil said. "But to say I can't treat any new patients, that's dirty politics. I'm really upset by it to the point that I've had trouble sleeping. I'm worried about my patients."

Cecil contends the real reason behind the change is money. "They are trying to build their program at U of L and I have no problem with that. But instead of going out to get their own patients, they are taking mine."

McClain, who has been a VA doctor for 25 years, defended the approach the VA is now taking to treat hepatitis C patients.

With his team providing treatment at both hospitals, McClain said, the VA patients will benefit because they also will have access to other specialists in U of L's liver program.

"Our goal is to provide equal and comprehensive treatment at both locations," McClain said. "U of L and Jewish Hospital recruited my team, because they wanted to offer the best liver care possible."

Cecil believes that, eventually, VA patients will only be treated by U of L doctors. Freeman said that won't happen. He said Cecil is "not going to quit treating patients. He's got a lot to do."

Awareness of hepatitis C infection among veterans has greatly increased since Cecil joined the VA in 1997 because of the work of veterans' groups and a campaign started last year by then-Miss America Heather French to have veterans tested for the virus. (French, now married to Kentucky Lt. Gov. Steve Henry, remains active in veterans' affairs.)

Tim Thomas, a national VA spokesman, said the VA tested 113,000 veterans for the disease in 1998. From January 1999 to March 2000, that number increased by 100,000. And Thomas said he expects even more veterans to be tested and treated this year because of additional funding the VA has received from Congress.

Currently, Thomas said, the VA is treating 16,300 veterans nationwide at a cost of between $15,000 to $40,000 each.

Cecil, who earned his undergraduate and medical degrees (1973 and 1977, respectively) at the University of Louisville, said he became interested in hepatitis C treatment because of the influence of one of his medical school professors, Dr. Carlos Tamburro. Tamburro was one of the top hepatitis C researchers in the country and had also worked at the VA.

Cecil, who completed residencies in pathology at Duke University and internal medicine at Moses Cone Memorial Hospital in North Carolina, worked in private practice in Danville, Ky., and Louisville before joining the VA staff here following Tamburro's death in 1997. He opened the Hepatitis C Treatment Center the following year.

This isn't the first time Cecil has found himself at odds with the VA administration. (See related story on page 17.)

Last year, after Cecil led a crusade to get treatment for Michael Paulley, a veteran and a Kentucky inmate with hepatitis C, the Department of Veteran's Affairs launched an investigation to see if Cecil was profiting from his work at the VA. The investigators found that Cecil was actually losing money, because as an hourly VA employee he earned about one-third of what he made in private practice. The only repercussion from the investigation was that Cecil was told to remove statistics concerning his VA work from his Web site (www.hepatitisdoctor.com).

Cecil said that if he's not allowed to treat new hepatitis C patients at the VA hospital, he may resign and start seeing veterans at his clinic. But he hopes it doesn't come to that.

"I'm proud of the work we've done (at the VA)," Cecil said. "I want to stay here for the rest of my career and take care of veterans."

James Tullbane, a veteran with hepatitis C, is trying to organize other veterans in a show of support for Cecil's efforts to keep hepatitis C treatment available at the Louisville VA Hospital.

Tullbane, 50, said he received some treatment at U of L, after he was diagnosed in 1995. However, he said, he made no progress until he started seeing Cecil at the VA Hospital a little more than a year ago.

"I'm not going to give up on (Cecil)," Tullbane said. "I'm very scared, most people are. Before Dr. Cecil there weren't many options for veterans. Now that there is money involved, U of L wants to come in and take it.

"At U of L, you feel like a number. They wouldn't even let my wife into the examining room. Cecil lets my wife in and he talks to her as much as he talks to me. This is a family thing, and it makes a difference

when you're treated like that. The veterans don't want to lose him."

Contact the writer at mlj@leoweekly.com.