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On the Front Lines Against Hep C
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As the co-founder of HCVets with her husband Gary Lupole, Tricia Lupole is one of the most significant hepatitis C advocates and activists in the United States. As described on their website, “HCVets.com Educational Website & Support Forums are provided by past and present members of the United States Military with Hepatitis C (HCV) to assist fellow Retirees/Veterans/Active Military and Dependents with awareness to the hep C virus exposure methods during military service.”
Tricia’s husband, Veteran Marine Corporal Gary Lupole died on February 2, 2012 due to cardiac arrest brought on by terminal liver cancer due to the hepatitis C virus he contracted during his military service. According to Tricia, the Vietnam War never ended for Gary, or for many veterans and retired Military members with service incurred disabilities, like hepatitis C. They have experienced and continue to experience a profound lack of support from the Veterans Administration.
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A main goal of HCVets is to show how many soldiers have been infected by high-risk blood management procedures and technologies used by the military, including the notorious Jet Air Gun. In recent years, Tricia Lupole has been leading the battle for the members of HCVets to get the origins of their infections recognized by the Board of Veteran Appeals. With recent wins, the HCVets have seen individual cases vindicated, but the majority of cases of HCV infections among United States Veterans remain unrecognized and ignored. As a direct result, Tricia Lupole continues to fight in memory of her late husband.
He died having been forced to live his life in the shadows with a stigma that was not based in any reality.
THE FIX: As one of the top hepatitis C advocates in the country, what do you think about the current controversies, in regard to the pricing of Gilead’s new HCV drug regimens, Sovaldi and Harvoni?
TRICIA LUPOLE: Controversy surrounding high cost drugs for HCV treatment has been around for years over price controls and, ultimately, the rationing of care. Now, it has really begun to take root in the pharmaceutical industry. The subject was reignited when Gilead came out with Sovaldi and put out $1,000 pill when the drug was approved. Now, we have healthcare companies, like Humana, complaining that the increased cost is related to the new drugs and has decreased company earnings.
Principle advocates for price controls have more than 85 organizations that have come together, including unions, insurers and other benefit programs to form a coalition. They are lobbying Congress for a formal intervention to control the price, rather than settling through negotiations, as in the past. Insurers, trade associations, health insurance plans and hospital associations provide financial support for this coalition. To say they might have a vested interest in price control is more likely than not.
Presently, the total cost to bring a new drug to market is roughly $1.2 billion dollars. Such a huge cost is due in part to regulatory compliance necessities and litigation expenses. Many experts warn that price control interventions could undermine the investment that is critical in developing new cures. Policy should provide incentives and streamline regulation, fostering competition. Price controls would do the exact opposite. Industry players are perfectly capable of negotiating for themselves.
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With that point made, the new HCV drugs that are soon to be released are going to bring all these prices within the realm of affordability. It’s a short-lived window for these huge profits to be made by Gilead, and they certainly invested an enormous amount of money on the hepatitis C market. As a result, I am not surprised by the cost of these new drugs. Right or wrong, it would be an individual call probably based on party lines. Capitalism is what America’s about, even if I hate the cost of these drugs, it’s not all that shocking when placed in the greater context. It’s not going to be very long, however, before new drugs are approved that are going to equalize the costs of these drugs. I think you’ll find that HIV drugs went through a similar process of initial outrageous costs that eventually became manageable.
Considering the effectiveness of the new treatments, do you think the end of the hepatitis C infection crisis is on the horizon? Can you imagine a world where the virus is eradicated?
I can only dream of a world where the virus was eradicated. I see the possibility and the treatments are there. Hopefully, a vaccine will be available soon and that step would make the possibility of eradication much greater. I am cautioned to proceed slowly on the concept of eradication given the worldwide healthcare standards and the lack of protocols in third world countries, even in our own country, and the spread of the disease into unaware patients and the length of time it takes for this disease to manifest – over twenty years before you realize that you have this infection.
It’s a wonderful dream and it’s something I certainly pray for, but the fact remains that this virus is highly contagious when it’s introduced to the bloodstream. You can barely even see with a microscope the miniscule amount of blood it takes to transmit this virus. I am hopeful, but what I really want is for the system to get in place that will help ensure that nobody ever gets this virus again. Helping to create such a system specifically for veterans is a major goal of HCVets.
Does the V stand for both Vets and Virus as well?
No, because the HC stands for Hepatitis C and the V stands for Vets. The “V” is for vets and not for virus. The full name is HCVets Educational Website and Support Forums because we cover a broad spectrum of platforms for patients.
Gary was a truly wonderful man; a master electrician, a jack-of-all-trades. Gary and I would have been married 27 years our next anniversary but he died on February 2, 2012, at age 61.
Gary joined the Marines in 1968 during the Vietnam war. Medical records indicate he experienced many symptoms associated with contracting hepatitis C during service.
A couple of years after service, Gary became ill and broke out with blisters all over his hands and arms. Doctors actually diagnosed him with leprosy. He had to wear gloves to protect his hands because anything he bumped or touched would tear his skin.
Gary was later rediagnosed with Porphyria Cutanea Tarda (PCT), a liver disease associated with hepatitis C. However, we didn’t find out until 1993 that he had hepatitis C.
Gary’s liver biopsy revealed stage 3 disease, so in 1998-99, he was one of the first to take the newly approved FDA treatment, which consisted of a combination of interferon and ribavirin. Gary took the medications for a year but the virus didn’t quite clear from his blood. It was during this time that we were also involved in the hepatitis C support group offered by the Veterans Administration.
Gary had a lot of health complications after service. We didn’t know these illnesses were related to the hepatitis C. As we tried to figure out what was going on, Gary was literally dying before my very eyes. He was experiencing vascular inflammation that caused electrical shocks throughout his body hundreds of times a day. The VA was unable to explain Gary’s symptoms and didn’t find it necessary to notify him that he had hepatitis C for almost a year after they knew. Meanwhile, we were searching for answers as to why this was happening to him.
They didn’t notify him? That’s insane!
It is insane, and it has happened to far too many veterans. Right now, many still do not know that they have positive test results for hepatitis C in their files. When they finally told Gary that he had hepatitis C, it was during an examination by the VA that is done when you file a claim for help with medical costs.
During that examination, the physician opened up his records and said, “Oh, you have hepatitis C.” Our immediate response was like, “What?” And the physician told us Gary had tested positive a year before.The physician shrugged it off and said, “Yeah, you have hepatitis C. Oh, don’t worry. Most of us have it and it’s no big deal. You’re going to die with it and not because of it.” We listened to him and, at that time, we truly didn’t worry.
The VA decided it wasn’t really important to notify a vet when they tested positive. That was the general consensus: Why bother? Why tell them? After learning the VA knew, vets began filing tort claims and winning in the courts for withholding this information.
When Gary became disabled under social security, there were still no answers for his deteriorating health. It was unbelievable what he was going through at that time. Gary took the backpay accumulated from the social security claim and went to the Mayo Clinic in Rochester MN. The diagnosis included treatment with interferon. VA declined to participate by suppling clinical trial lab test and promised to help when the FDA approved the protocol. The VA later reneged on their promise. So he went before the Veterans Committee in Washington to get approval. Since we had their promise in writing, it pretty much forced the VA to give him the new treatment. What was positive was that Gary’s fight to obtain such treatment ended up opening the door for so many other veterans to receive treatment as well.
The treatment rate for veterans with hepatitis C through the VA remains extremely low. In 2011, only 14% of veterans that were eligible for HCV treatment actually received it. The perspective of the VA, at that time, seemed to be something like this: Why do we want to run around and find all these veterans with hepatitis C when we don’t have a good product to treat them with? It really just came down to the money and the cost.
With Gary, after a struggle, we got a year of treatment for him on the first combination of interferon and ribavirin, and we had a lot of hope at the time. After a year, Gary’s HCV viral load went from 8 million to 65,000. If he had stayed on the treatment for a couple more months, he might have cleared the virus permanently. But the VA had given him a year and literally cut off treatment despite the recommendations of the doctors to continue. One year passed and, according to them, that was it. Later, when pegylated interferon came out, Gary did the new combo treatment.
While on the treatment, Gary had a heart attack. Nobody knew why this happened to him. He also lost a great deal of his cognitive functioning and became extremely depressed as well, but he also was a Marine. He didn’t just take it, he made himself get up every day, and he stuck to his schedule. Gary went through so much.
In 2006, the VA diagnosed him with cirrhosis and told him that he could never take the treatment again because he would not survive it. Gary was seeing specialists that the VA approved for a few years and was screened for cancer every six months, but in 2009, they refused to schedule appointments with specialist or provide cancer screening. When they finally saw Gary in November of 2011 and screened him, they discovered the masses in his liver and diagnosed him with cancer two days before Christmas.
On February 1, 2012, Gary went to the cancer doctor and was told that he had six months to live. Corporal Gary Lupole died the next day on February 2, 2012. Up until the very end, the VA refused to admit that his death and what he went through was service-related. Despite letters from VA doctors that stated that Gary had the condition since his service, they denied the connection. After everything Gary had gone through, it was a bitter pill to swallow.
Gary died in my arms, and I believe I have a form of PTSD (post traumatic stress disorder) because of what happened, but I am doing better today. However, it was a very difficult medical journey for us. The total of his medical bills alone was well over a million dollars in ten years. Gary had Medicare, but that still left 20% of the costs on us— destroying us financially.
Did you contract hepatitis C as well?
Yes, I did. I am not sure how long I have had hepatitis C, but probably since the 1980s. We were married in 1985, and lived together for a while before then. Gary’s higher iron content in his liver due to the PCT, caused his hair to grow very quick. Gary could shave in the morning and have stubs by noon. As a result, he kept a full beard and just shaved his cheeks. His skin was frail and he would sometimes nick his face with the razor. Well, I used Gary’s razor and most likely that this is how I contracted hepatitis C. I remember cutting myself and there must have been blood exposure. We didn’t know about the hepatitis C back then— nobody knew because the virus wasn’t recognized. We didn’t know that any precautions needed to be taken.
Hepatitis C is not transmitted through sex or seminal fluid unless there is an exchange of blood through open wounds or trauma. Otherwise, there is no real proof of sexual transmission, and this is one of the great falsehoods presented in the hepatitis C community. Hepatitis C is blood-to-blood, period. In order to get funding, action plans made the virus an STD, but it really isn’t in the traditional sense of the definition and this has been proven.
HCVets.com is a service site provided by past and present members of the United States Military with hepatitis C. What is the mission of the site?
There is a simple mission to the site. It is to provide past and present members of the US military with awareness of HCV disease exposure methods for veterans during military service. We believe that veterans have a legal right for medical assistance when it comes to hepatitis C. We want them to know how they contracted the virus so they can be given compensation for their service. Such compensation is included in the contract that they sign when enlisting with the US military. That contract is very clear: should anything happen to you when you are in the service, we will take care of you. That is the promise of the United States Government to the veterans. I believe such a promise should be upheld regardless of the cost. The VA is dodging this responsibility and it is disgraceful to watch.
A major way hepatitis C spreads to the general population is that veterans, upon returning home, would donate blood on a regular basis. The American blood supply became riddled with the virus.
The Department of Veteran Affairs stated, “One in 10 US veterans are infected with HCV.” Why is the infection rate three to five times higher than that of the general population? Why was there such a greater risk of HCV infection associated with the military?
The start of the HCV epidemic can be traced back to World War II and an outbreak of health issues in troops that received an experimental yellow fever vaccination. They didn’t know what was going on then, but they kept the blood. In 1977, researchers tested the blood samples and discovered positive results for something they could not quite identify, but they knew it was a form of hepatitis. They actually labeled the stored blood that was infected as hepatitis Non-A Non-B. This has proven to be the first record ever of hepatitis C.
The HCV epidemic took off because of the conditions for storing and processing blood that existed during the Cold War, during Korea, during Vietnam and beyond. When it came to both blood products and vaccines, they lacked the ability to sterilize the surfaces of the needles, injection guns, and other instruments. They were not guided by the strict standards of safety in place today. Since hepatitis C is such a strong virus outside of the body and can survive for months on external implements, this unknown epidemic took off in the military and eventually spread beyond.
When you are in a theater of war, blood is common. Perhaps the worst form of transmission were the injections with needles, lancets and finger sticks that were reused. Even if they were not supposed to be reused, such precautions often became secondary in war. This particularly became a flagrant problem with the injection guns and the repeated use of vats of vaccine solution, like for tetanus. Once the vats became infected, that was it. As a result, the infection rates among veterans are much higher than what is being said. Some studies have shown an infection rate of up to 30% in veterans from those eras, but those studies have been squashed. The blood in Vietnam, in particular, was contaminated beyond belief and treated in ways that fostered the spread of that contamination. Blood that wasn’t used in Vietnam was processed and turned into blood products that were infected with hepatitis C. It became a vicious circle that spiraled out of control.
The Vietnam and post-Vietnam veterans account for close to 80% of the veterans infected with the hepatitis C virus. A major way hepatitis C spreads to the general population is that veterans, upon returning home, would donate blood on a regular basis. The American blood supply became riddled with the virus.
It wasn’t until 2001 that the industry came out with a product that killed hepatitis C on the surface. Until then, the virus could survive for weeks. We even have record of the virus surviving in an external situation for nine months. The CDC denies such findings, but even their two-week window led to many more infection opportunities.
In 1997, the military finally discontinued the use of the old Jet Gun— the hydraulic air gun that exposed countless number of troops to hepatitis C. Eight hundred American soldiers were lined up at a time, one right after another, and the gun was almost never cleaned and the 50-milliliter vial being used became a source of infection. This gun was faulty, but a newer version was reinstituted that supposedly was safe— but that was not the case. HCVets moved against these new injection guns and took action in Washington.
HCVets gave a presentation on the dangers of Jet Guns to the FDA Industry wanted to produce new Jet Guns with a blank liability when it came to any dangers. We fought against this and the respected nonprofit PATH whose tagline is “A Catalyst For Global Health” voiced similar concerns. We showed the FDA that even these new supposedly safe Jet Guns transmit blood, presenting a huge risk to soldiers, and they need to be licensed with regulatory oversight.
I was amazed that the World Health Organization supported our position as well. I have the whole transcript that shows how truly dangerous these devices are, The military claimed Jet Guns were safe despite obvious evidence to the contrary.
Although the military put safety practices in place for using needles and syringes, the medical providers were still reusing the vials. The vials were not only being reused with the Jet Guns, but on the battlefield as well. Reusing vials is a problem all over the medical establishment to this day.
New York tried to pass a law that would forbid the reuse of vials and the FDA shot them down. Why? The pharmaceutical companies were against the law. Reusing vials actually helps to bolster their profit margin.
What do you think of the CDC’s recommendation that every baby boomer in America be tested for hepatitis C? Is raising awareness for mass testing part of your mission?
Oh, absolutely! It’s one of our main missions. I am very pleased that the CDC has begun to address the hepatitis C epidemic. However, it is just a bone to avoid the admission of how high the risk is to those in the military; the veterans and their families. Awareness is fine, but it is also tied to a government attempt to avoid compensation for the millions infected while in the military.
True awareness will only happen if medical providers are educated. All federal institutions ranging from the military to prisons to juvenile delinquent homes to asylums; all of these institutions and their high numbers of infected populations are not included in the CDC estimates of the infected people in America—3.2 million is an incredibly low number that fails to even begin to address the true extent of hepatitis C epidemic. There is a realization that we cannot treat all of the infected at once so let’s not acknowledge that they are infected with the virus. As a result, how far the CDC campaign goes will be dependent on a schedule of when treatment for such populations will be affordable. With the pricing of the Gilead drugs, that’s not even close to a possibility today.
How many Americans do you think at this point in time are infected with the hepatitis C virus? The CDC number of 3 to 4 million is thought to be underestimated and the actual number closer to 6 to 7 million. What do you think?
I know this is hard to accept, but I truly believe the number to be three times that, if not more. The numbers are much higher than expected and such findings back the HCVets belief that there is a lot more going on here than is being revealed.
You are saying that close to 20 million Americans are infected with hepatitis C. That’s a hard figure to swallow.
Yes, I am. When you consider the baby boomers alone and the lack of precautions during and after the Vietnam War, you can imagine how fast the virus must have spread. No detergent killed it; Alcohol doesn’t kill it—the reality has been kept from the public. When you realize what the pharmaceutical companies have gotten away with and what the government has failed to address, it is just tragic. So much of this epidemic could have been prevented with education and awareness programs. It did not have to be this way.
With HIV, two of the key moments that came to define the awareness raising campaign were Ryan White and Rock Hudson. Ryan White came to define the way the stigma of HIV could hurt a young innocent boy. Rock Hudson took everything to the next level because a beloved American actor died. Is it going to take a famous Hollywood actor or a bunch of wealthy white men dying from hepatitis C before action is taken?
It is difficult because of the stigma attached to hepatitis C. HIV had its stigma as well, but hepatitis C seems to have the stigma without the celebrity. We marched on Washington DC in 2001 and continued the process until 2006. We put together legislative packages about the reality of the disease for the movers and shakers of this country. We found a lot of support, but very little tangible action. It just didn’t happen.
The media ignored the issue. We marched on the VA and the media ignored us. We formed a human chain and the media ignored us. Hepatitis C doesn’t sell papers. Sure, a big-time star could help, but would they be willing to reveal themselves? I just don’t see a Rock Hudson-like moment ever happening again.
In your experience, what can be done to help those infected with HCV?
People should not be limited by what is being offered as the so-called facts. For examples, the CDC limits the dates of the risk of transmission through transfusions to 1992 and before, but this clearly is not the truth. The worst punitive method of infection in our day and age comes with reused medical devices. Such devices are not being properly sterilized and the virus is being spread.
By empowering the patient, you stop the spread of hepatitis. The fact that must be recognized is that most people did not get hepatitis C through sex, drugs, and rock and roll lifestyles. This is a myth being propagated to avoid responsibility for all the other forms of transmission that have taken place and are still taking place.
Of course, drugs are a problem and need to be addressed. But needle exchanges are just the beginning. Of course, we should offer needle exchanges for drug addicts to stop such forms of transmission—but needles are just the beginning. Entire kits need to be offered because cotton balls can’t be reused, spoons can’t be reused, any drug paraphernalia that has blood contact can be a vehicle of transmission of the hepatitis C virus. Such forms of transmission will continue until this uncomfortable fact is accepted and acted upon.
Why is the CDC placing restrictions on awareness? Why aren't they acknowledging the extent of the danger? This failure baffles me. By accepting the reality of situation, we can move forward and address the hepatitis C epidemic in a manner that such a destructive epidemic should be addressed. Why is the CDC failing to address the stigma associated with HCV and the problems such stigma causes?
Back in 2001, Gary and I were attending a hepatitis C support group at the VA. We met a World War II veteran who was doing treatment for hepatitis C in secret. Nobody in his family knew he had it, none of his friends or work colleagues knew he had it, and this poor man was in complete isolation. Why? Because of the stigma. A stigma that should never applied to such a man who most likely contracted the virus from the yellow fever vaccine in the 1940s.
He never knew that information because we discovered it later. He died having been forced to live his life in the shadows with a stigma that was not based in any reality. After Gary and I met him, we were so hurt by what he was going through that we started HCVets that night. I wanted to make sure that man and anyone else like him would know that they are not alone, that he is not alone. Our favorite saying at the heart of the mission of HCVets is “We Know, We Care.”
Given “We Know, We Care”, what advice would you give to someone who was just diagnosed with HCV?
First of all, don’t panic. Don’t rush right out and treat. Do your research and learn your options. Find out what works best for your treatment and what works best for your genotype.
The virus is designed to keep the host alive for 30 to 40 years so it can continue to live. You’re not going to die right away unless you are exacerbating the effects of the virus with drugs and alcohol. Also be very aware that hepatitis C is much more than just a liver disease. The virus has been found in the cells of the heart and the brain and peripheral blood. It affects more than just the liver. Know that hepatitis C can also make you more susceptible to other types of disease because it weakens the immune system. Medically, some conditions to watch out for are heart disease, depression, diabetes, and thyroid imbalances.
Be very careful in terms of what prescriptions you are taking including antibotics. Find out how the prescribed drug will interact with the liver.
If you have cirrhosis or end stage liver disease, make sure to get an ultrasound level II and a test called AFP every six months. However, a MRI is much more revealing in terms of letting you know what is really going on. A problem is that everyone is so focused on treatment that there is not a lot of quality information out there about maintenance. The maintenance of your health during the in-between period can be as essential as anything else we have discussed.
We all need to focus on education for both patients and providers. There is too much bad information out there. The enduring legacy of poor medical services provided to people with hepatitis C in our country will not be forgotten and it must end now. If you have hepatitis C, don’t blame yourself. Don’t believe in the stigma.
If Gary Lupole were here with us now, what would be his parting words?
Tell a friend. That’s what he always said. Tell a friend to get tested. He would have tears in his eyes right about now and he would say, “Don’t forget. Tell a friend to get tested.”