Another message from my e-mail:

Dear Friends:

Lots of folks have written to me for more information about HCV PRISON NEWS, following the posting of my prior message about them. So here's some more info about them:

They have a web site at http://www.hcvinprison.org

They also have newsletter "Hepatitis C Awareness News" that they send out to prisoners to help educate them on hepatitis C, and how to protect their livers while they are incarcerated. They also try to give them resources, etc., to help them in their struggle to receive care and to help them understand their disease and what type of care should be given to them so that the DOC Doctors can't continue to deceive.

To have someone you love placed on their mail list, send your request to:

Hepatitis C Awareness Project
PO Box 41803
Eugene, OR 97404.

They also send out free information packets on hepatitis C which include very important things they need to know.

Again, this organization provides information which is vital to the well being of incarcerated people with hepatitis. Hepatitis is one of the most widespead crises in our prisons today, and the more information we have, the better prepared we are to deal with it, from whichever side of the bars we find ourselves.

If your loved one doesn't have hepatitis now, that's no guarantee they won't come home with it, because prisons are hotbeds of hepatitis, and the "doctors" don't always tell prisoners they have it - that way they don't get pressured to treat it. So this is an issue we all need to be educated about, and I hope everyone will learn as much about this as they can, so that if you should find yourself fighting this monster, you will be armed to do battle, and know HOW to go about it.

I can tell you from personal experience that if you don't understand both the disease and the battle you will have to wage against the prison, you - and YOUR LOVED ONE - are going to lose that battle. Don't let denial of the fact that this could happen to YOU, let you ignore this topic, because denial doesn't have to be permanent, but death through medical neglect does.

See how my brother died of untreated hepatitis in the Arkansas Department of Correction at http://www.geocities.com/bloodcows I warn you that there are some pretty gruesome photos of him on his death bed on this site. His was a nightmare of a death, which took 3 HARD years to accomplish, and one which my family will NEVER recover from witnessing.

Sometimes this site gets more hits per hour than Yahoo provides for a free site, and they take it down for an hour here and there, so if you get one of those messages, please try back later. Everyone NEEDS to be aware of the information on that site - not just about my brother, but about the prison that sold his infected blood to be made into medicines which have sickened and murdered millions of people all over the world.

PLEASE GET INVOLVED!! Let's fight to keep this from happening to ANYONE ELSE, EVER!

If you want info about this organization which is not contained in this message nor found on their web site, please contact Phyllis Beck of the Hepatitis C Awareness Project/National HCV Prison Coalition at PKBeckinOR@aol.com

Peace and blessings to all,

LINDA TANT MILLER
PRISON REFORM UNITY PROJECT (PRUP)
http://www.prup.net

Thank you for posting this Bonnie.

Freedom Angel,
Thank you so much for your post! It scares me to death because my finace was told he has Hep C two months ago when he had tests done because of our uncoming (hopefully!) marriage. He was afraid to tell me, afraid of my reaction! I want to stand by him and I desperately want to help him! They said he would receive treatment but he hasn't seen it yet. In fact, he hasn't been able to get his vitamins for the last two weeks. This last weekend he was very tired and didn't look well when we visited. He hasn't been writing much and he says it's because he sleeps alot! He's always tired!

He's 27, will be 28 on December 13th! He's to young to die! I don't know what to do! Is there anything I can do??? Anyone I can contact? He is very frustrated and that makes it worse! He has 8 years more to serve. He's at Calipatria. Have you heard anything about their policies? Any info would help. I don't know if these things usually take this long or if he's being jerked around! Any info you could give will be greatly appreciated! I am writing to the HepC Awareness Project and getting him on their mailing list also!

I'm feeling pretty paniced right about now!!! My stomach felt like the bottom fell out as I looked at your web site! I hope others heed your warning! This is not a good place to be in!

Thanks again.

A 44 year old inmate just died at Mt. Olive prison in West Virginia from Hep C. He passed away at the prison hospital, I wonder what kind of treatment he received there?

Thanks to all of yall for sharing. I can not speak for any one prison except the one my dad is at and in Springfield medical center for federal prisoners i can say they get no treatment yet are put there to die just as my dad is doing this very second. He has been there for 16 months with no medicine at all and i was told that there is no medical cause for treatment which in short means he is too far gone in the eyes of the B.O.P. and D.C. as well. They refuse to treat you if you are too early in the Hep.c Or too late in the Hep. C this is their way of saying they are in the right yet we all know they are just killing off are loved ones. I will not give up on getting help for my dad nor should any of you.
I talked to a lady named JACKIE WALKER with the National Prison Project and she will try to help family & inmates with Hep.C to recieve treatment. She is not working for the B.O.P., so it is worth a shot, it can not hurt. If anyone would like her name or phone # feel free to ask. as i am not sure if i can post it here cause i am new to the PTO. Stay Strong. Chandra

Enjay,
There is a lot of good info. that Linda provided about the Hep C Awareness Network and website. If you can print out the information and share with your fiance'--they include info on things one can do to maintain health [including the use/non-use of vitamins]. There are virtually millions of men and women with Hep C who have had it for decades and have not had any liver damage due to this infection. Key is getting liver testing every 6 months to make sure the liver is remaining healthy--often this is is not done in the prisons!

PA is one of the few states that treats prisoners with active and liver damaging Hep C. It is interesting to note that several prisoners refuse treatment! BTW, the treatment is NOT fun--one of the severe side effects is depression with suicidal ideation and for that reason anyone w/a hx. of depression/suicide attempts, etc.... is often excluded from treatment. The PA DOC website also provides information about the cost of treatment per prisoner per year--it's not cheap, that is for sure. I'll get the URL and send it in another post [I'm too tired to dig for it right now].

One thing to keep your eye out for--PA is considering for the first time, to do a liver transplant on a prisoner who is in end-stage liver disease due to Hep C. The cost? About $250,000 to $500,000. The prisoner is doing a 5 year bid for a robbery.
The reporters from The Inquirer are following this story so hopefully we will hear more about this--remember what happened when a CA prisoner got a heart transplant a year or so ago? If they do transplant this PA prisoner there is sure to be backlash!!!!

Pitt study of drug therapies for chronic hepatitas C is funded The University of Pittsburgh Medical Center (UPMC) has received two grants totaling nearly $900,000 to study drug therapies for chronic hepatitas C, a serious liver disease that often necessitates transplantation when other treatments fail. The grants will enable approximately 50 Pittsburgh area residents with chronic hepatitas C to receive medical treatment at no cost. Hepatitas C affects approximately 170,000 Americans each year, half of whom develop a chronic form of the disease. Nearly 80 percent of these patients fail to respond to treatments currently available.

Both grants enable patients who qualify and participate in the studies to receive treatment and associated medical tests at no cost.

For more information, call Bill Roland, 648-3200.

Pegasys Plus Ribavirin Produces Highest Sustained
Virological Response (SVR) Rate Ever Achieved for
Patients with HCV Genotype 1

By Ronald Baker, Phd
" http://www.hivandhepatitis.com/hep_c/news/041902a.html
The double combination of Pegasys (peginterferon
alfa-2a) plus ribavirin produces some of the best
clinical results ever seen for patients with chronic
hepatitis C, especially for those with genotype 1,
according to data from an international, multicenter,
randomized Phase III trial presented today (April 18,
2002) at the 37th Annual Meeting of the European
Association for the Study of the Liver (37th EASL) in
Madrid, Spain.
Highlights of Study Outcome
The Pegasys/ribavirin double combination produced an
overall 61 percent sustained virologic response (SVR),
the highest SVR ever reported in a prospective trial for
a pegylated interferon using an intent-to-treat
analysis. "Overall" means all genotypes included. These
patients received Pegasys 180 micrograms (mcg) once
weekly and ribavirin 1000-1200 milligrams (mg) daily for
48 weeks.
Patients in the study with genotype 1 (the most
difficult strain of HCV to treat) achieved a 51 percent
SVR. This represents the highest SVR ever achieved among
this population of patients. The trial results
demonstrate that those with genotype 1 need standard
dose ribavirin (1000-1200 mg daily) plus Pegasys (180
mcg weekly) in order to achieve the best clinical
outcome.
Patients in the trial with genotype non-1 taking Pegasys
and low dose ribavirin (800 mg daily) for 24 weeks
achieved a 78 percent SVR. Previously, this patient
population achieved a 78 percent SVR only when on
therapy for 48 weeks. "These data are important because
we know that for certain patients, we can use a lower
dose of therapy and cut the treatment duration by half
without sacrificing efficacy," said Donald Jensen, MD, a
US investigator in the trial and director of Hepatology
at Rush-Presbyterian-St. Luke's Medical Center in
Chicago.
Study Objectives
The primary goals of the Pegasys/ribavirin Phase III
trial were threefold:
to compare the effectiveness and safety of the double
combination of Pegasys plus ribavirin when used for 24
weeks versus 48 weeks;

to compare the safety and effectiveness of two
different doses of ribavirin (800 mg vs 1000-1200 mg)
when taken with Pegasys; and

to provide additional data to submit to FDA for an
expedited review of Pegasys's approval application
(for approval as a prescription drug for the treatment
of chronic HCV infection)
Design of the Phase III Trial
A total of 1,284 patients at 99 sites in 21 countries
were randomized and given treatment as follows:
Group A: Pegasys 180 mcg once weekly plus ribavirin
800 mg daily for 24 weeks

Group B: Pegasys 180 mcg once weekly plus ribavirin
1000-1200 mg daily for 24 weeks

Group C: Pegasys 180 mcg once weekly plus ribavirin
800 mg daily for 48 weeks

Group D: Pegasys 180 mcg once weekly plus ribavirin
1000-1200 mg daily for 48 weeks
All patients were followed up for 24 weeks after
discontinuing treatment.
Patients were further stratified by HCV genotype (1
vs. non-1) and viral load (low vs high, defined as
less than or equal to or greater than 2 million
copies/mL, respectively, and by geographical region;

Treatment duration was blinded until week 24;

Dose of ribavirin blinded throughout the study.
Summary Results of the Phase III Trial
An overall SVR of 61% in patients treated for 48
weeks with Pegasys 180 mcg once weekly and ribavirin
1000-1200 mg daily;

Overall safety profile similar to prior studies
(depression, flu-like symptoms,
fatigue;

Genotype 1 Patients
• A 51%A SVR achieved with 48 weeks treatment,
1000-1200 mg ribavirin;
• Shorter duration of therapy and/or lower
ribavirin dose reduces efficacy;

Genotype Non-1 Patients
• SVR of 78% with 24 weeks of therapy and 800 mg
ribavirin;
• Increasing duration of therapy and/or dose of
ribavirin gave no increase in efficacy;
Shorter treatment associated with fewer SAEs and
withdrawals for safety

Lower dose ribavirin associated with fewer
• SAEs (24 weeks)
• ribavirin dose modifications
• Large decreases in hemoglobin
Key Charts on the Data Presented

OMG FREEDOM ANGEL!!!!!

Is Linda a member here at PTO?

I so love that woman!!! Can you invite her here?

Ken, Linda's brother Bud was a damned fine looking Marine. Bud died in Cummins Prison, of Hep C. His is another name I honour!

Linda, (if you're around) I'd like to introduce you to another damned fine-looking Marine; my significant-other, fiancé, (whatever one calls their love these days) Mr. Ken Connor.

Ken, go to Linda's "Bloodcows" site. Yes, some photos aren't very pleasant, but they sure are grittily honest! You and Linda would deeply understand each other!

Linda, help us out here in this forum, PLEASE!!! You are such a MAGNIFICENT WARRIOR!!!!

All My Love,
Menolly

Enjay;

Welcome to the Hep C family. You are one of the people we have just created this forum for. There is a "Welcome to the Hep C family post". Perhaps you'd like to read our introductions, and share yours also.

We are trying very hard to get as much info posted about Hep C as we can. We just opened the forum today. So come back, and READ every day. We are working on this!

(((((Huge Hugs)))))

All My Love,
Menolly

>>Subject: Vietnam Vets Warning of Hepatitis C Crisis
>>Date: Sat, 13 Nov 1999 12:30:33 -0500
>>
>>Vietnam Veterans Are Warning Of Hepatitis C 'Crisis'
>>
>>November 12, 1999
>>
>>Houston Chronicle
>>
>>In July 1998, Terry Baker and several of his buddies attended a leadership
>>conference for Vietnam veterans in Savannah, Ga. They noticed a booth
>>hosted
>>by a Washington health consulting firm offering free hepatitis C tests.
>>"My buddies said to me, "We will (be tested) if you will,"' recalled
>>Baker,
>>who lives in Middletown, Del. "And I was the one who ended up testing
>>positive."
>>It turned out that 9 percent of the 122 veterans tested at the conference
>>were infected with the potentially lethal liver virus, said Audrey Wright
>>Spolarich, a principal in the consulting firm, Health Policy Analysts.
>>It was among the first indications that the infection rate among veterans
>>is
>>far higher than the estimated 1.8 percent infection rate in the general
>>U.S.
>>population.
>>Subsequent studies confirmed that hepatitis C is a particularly serious
>>problem in the veteran community. In March, a one-day study of 26,000
>>patients at Department of Veterans Affairs medical facilities found that
>>about 8 percent were infected. And a study presented this week at a
>>medical
>>conference in Dallas found that 19 percent of 791 veterans using the San
>>Francisco Veterans Affairs hospital were infected.
>>With Veterans Day here, veterans' advocates around the country are
>>struggling to promote awareness of hepatitis C and to help veterans obtain
>>the medical care and social support that they need.
>>"When I was first diagnosed, I was devastated," said Baker, 47. "The doom
>>and gloom comes over you. I've always been a healthy individual and tried
>>to
>>take care of myself, and boom, I have a serious illness.
>>"Then I realized that more and more of us were coming down with the
>>illness — enormous numbers."
>>That realization prompted Baker to form an organization called Veterans
>>Aimed Toward Awareness, which is working with public officials and
>>advocacy
>>groups to educate veterans about the disease and to encourage those who
>>are
>>at risk to be tested.
>>"It's a crisis out there right now," said Ed Wendt, a Houston journalist
>>and
>>Army veteran who learned in 1994 that he had hepatitis C. Wendt, who later
>>was diagnosed with liver cancer, is awaiting a liver transplant.
>>Wendt said he was able to obtain the treatment he needed at the Department
>>of Veterans Affairs Medical Center in Houston, but he said many other
>>veterans have had difficulty working through the agency's bureaucracy.
>>"Sadly," he said, "a lot of veterans are not aware of how to fight the
>>system like I have done."
>>Moreover, it appears that many veterans are unaware that they are at risk.
>>In a recent survey of 500 veterans by Baker's organization, 74.8 percent
>>said they were "not very" or "not at all" concerned about their risk for
>>having contracted the hepatitis C virus. More than two-thirds (67.5
>>percent)
>>said they were unfamiliar with the disease, and 58.3 percent said they
>>were
>>unlikely to be tested.
>>Baker said his group is working with the American Liver Foundation and
>>other
>>organizations to develop public service announcements, brochures and other
>>tools to educate veterans about hepatitis C.
>>The reasons for the high infection rates among veterans are unclear.
>>Alan Brownstein, president of the American Liver Foundation, said little
>>research has been conducted on the question. Some experts, he said,
>>believe
>>that battlefield blood exposure may be a factor, particularly among
>>Vietnam-era veterans.
>>Hepatitis C is spread through contact with infected blood. A major source
>>of
>>infection is blood transfusions before 1992, when a reliable test was
>>instituted to screen infected blood from the national blood supply.
>>Research by Veterans Aimed Toward Awareness shows that field hospitals
>>performed more than 364,900 blood transfusions on U.S. personnel in
>>Vietnam.
>>In addition, soldiers, medics and nurses were exposed to blood while
>>caring
>>for the wounded.
>>In January, the Department of Veterans Affairs established two national
>>"centers of excellence" for hepatitis C treatment, one in San Francisco
>>and
>>the other in Miami. The agency also issued treatment guidelines for the
>>disease, which generally follow the standard of care developed by the
>>Centers for Disease Control and Prevention and the National Institutes of
>>Health.
>>Prior to the guidelines, Baker said, veterans who sought care at VA
>>facilities often were told that they had "nothing to worry about — go home
>>and we'll keep an eye on it."
>>Even now, he said, "each facility sometimes decides to make its own rules"
>>despite the national guidelines.
>>For example, Baker said, pharmacists at some VA facilities have been
>>unwilling to pay for the two costly drugs that, taken in combination, are
>>the most effective treatment for hepatitis C. As a result, he said,
>>veterans
>>served by those facilities don't have access to the treatment.
>>In Houston, Dr. B.S. Anand, a physician who treats veterans with hepatitis
>>C
>>at the Department of Veterans Affairs Medical Center, said he believes the
>>hospital has sufficient staff and budget to meet the need.
>>"The VA has now provided us with extra help in terms of personnel, and we
>>have the latest tests to diagnose the viral load, to get a sense of how
>>much
>>virus is circulating in the blood," he said.
>>Wolf Biedenfeld, president of the Houston chapter of the Vietnam Veterans
>>of
>>America, said many veterans face social problems that can compromise their
>>ability to deal with hepatitis C or other illnesses.
>>For example, he said, a veteran suffering from post-traumatic stress
>>disorder might be withdrawn and isolated, making it less likely that he
>>would seek medical attention.
>>Such personal issues also can complicate a veteran's attempt to
>>demonstrate
>>that his hepatitis C infection is service-related, which often is
>>necessary
>>to obtain free health care and disability benefits, he said.
>>A veteran who has been homeless or in prison, or who has been an injection
>>drug user, has other risk factors for infection that the government can
>>cite
>>as a reason for denying a service connection, Biedenfeld said.
>>"The government's general position is: "If we can find another reason (for
>>infection), we'll find it,"' Biedenfeld said.
>>Legislation introduced in Congress this year would make it easier for
>>infected veterans to establish a service connection for hepatitis C.
>>Biedenfeld, however, said the bill is languishing.
>>"Congress is in no hurry to create a new financial liability for the
>>government," he said.
>>Dave Lackey, a spokesman for Sen. Olympia Snowe, a Maine Republican who
>>sponsored the bill, said the measure has not been scheduled for a hearing.
>>He said Snowe is working to build support among her colleagues on an issue
>>that many know little about.
>>"These things take time," Lackey said. Baker, meanwhile, said he has
>>overcome his personal hepatitis C crisis — treatment with the drug
>>combination cleared the virus from his system. But he continues to speak
>>about the issue around the country and to lobby federal officials for
>>better
>>services.
>>"There are American heroes who are dying, even as we speak, from this
>>illness, and everyone is hemming and hawing about what they should be
>>doing," he said.

The 'bloodcows' site is hard to look at and even harder to read the story.

Please let me explain the next few lines of post... I am not one that wants to scare anyone, but some people need to sometimes see the reality of the situation. This site is the reality of the situation for a lot of people with Hep C.

I watched my father die over a 13 year period. There really was not a treatment for Hep C when he was infected through a blood transfusion. Prednizone steroid treatment was the only thing available then. Heck when my father contracted this disease "Hep C" did not formally exist! He was diagnosed with non A, non B Hepatitis.

The photos on this site bring all the horrible images back to me watching my father in Intensive Care and through his final hours. The wasting and weight loss, the bloating and swelling, the bleeding, the final hours in a coma... I have been through all of this first hand and I would never want to see anyone have to go through this.

TEB, sweetheart.

NONE OF US want to see, or watch what these Hep C victims go through. I'm so sorry Linda's site have brought back the god-awful reality of what we the Hep c families have to witness. It takes a strong stomach, I know! Oh, I know, so very well!

But thesethings need to be documented! It is only with such brutal honesty, as Linda has, that the truth of this injustice will ever come to light!

The Cummins Plasma Unit in Arkansas, in my mind, is right up there with Nazi Germany's labs of Dr. Mengele. That same place that killed Linda's brother, also killed my husband. And the doctor who ran it, is still in charge of inmates' health, and indeed is in charge of at least ONE of our MEMBERS loved one's health right now!

(((((HUGS))))) to you Ken. I TRULY hope YOU never have to face this again, or go through it again!

All My Love,
Menolly