Body Positive Interview
Valerie Michele Hoskins is editor of Body Positive, and is a consultant who specializes in providing electronic and print publishing services to not-for-profits.
Can you talk a bit about some of the issues facing people living with hemophilia and AIDS?
Terry Stogdell: Hemophilia is genetic, so we are born with hemophilia. It's not acquired in any way like HIV. Blood products are what generally makes our lives a little easier. For instance, today I had an ankle bleed. My ankle was swollen. I infused $3,000 worth of a blood product so I can get around for the day. It's very expensive, and I spend about a quarter of a million dollars a year for blood products. Another issue facing hemophiliacs living with HIV concerns taking protease inhibitors. Since we have prolonged bleeding, we are now not only using a quarter of a million dollars in blood products, plus taking all our HIV therapies, but we have to use more blood products than we would normally have to infuse, so paying for blood products is even more expensive. Everybody I talk to who has hemophilia and HIV is on protease inhibitors infusing more blood products than they used to. So, that's one issue.
The other issue concerns the fact that ninety-eight percent of us are Hepatitis C+, and when you start taking the antivirals, then your liver count goes up. If you are Hepatitis C+ and you've got HIV and you take all these drugs, then generally, you get liver failure or progressive liver disease. Many people don't want to go on antiviral or protease or cocktail therapy because of their Hepatitis C count or because their liver count is already really high. So they wait and their viral load gets so high, like mine, that it takes forever to get it back down. It's really hard to make decisions about treatments when you add these complications.
BP: Why are more men born with hemophilia than women?
TS: It's because of the genetics. Generally, women carry the gene and pass it on to males. But if a man with hemophilia, like myself, had a female child with a woman carrier of the gene, then that female child could be born with hemophilia. It's not impossible, but it is rare.
BP: People have the impression that the our blood supply is now completely safe. Is this a correct assumption?
TS: There's a horrible virus in the blood supply called Parvo, and we don't have all the facts about what effects it has on us. One of the side effects of Parvo viruses is severe arthritic pain. So if a person has hemophilia and is very arthritic, nobody is going to check for exposure to the Parvo virus. Physicians are just going to assume that the arthritis stems from the hemophilia.
Another problem with the blood supply concerns Jacob Crutchfield Disease (CJD) or Mad Cow Disease as some people call it. Blood products manufacturers have been recalling blood products, several blood products in the last year. They say that they are recalling blood as a precautionary measure because there's no proof that it's transmitted in the blood. I've had a lot of friends who died with dementia, and I wonder if it was HIV-related or from Mad Cow Disease. The only way to tell if you've been exposed to CJD is through an autopsy. You're already dead by the time they find out if you've been exposed to it and I've heard that it may take up to 20 years before you even begin to show symptoms or signs of the disease.
Hepatitis is still an issue. There's no screening for Hepatitis C. In the past, this was primarily viewed as a problem that affected hemophiliacs who needed blood supplied, about 20,000 people nationwide. You have to realize that if a loved one, a friend, or just anybody gets in a car accident and they need blood, the blood supply can transmit hepatitis from a single transfusion. People are under the impression that the blood supply is heat-treated now, that the screening process is more thorough and better, that the blood supply is safe. The reality is that the blood supply is safer. In no way would I call the blood supply safe.
Right now, there is a bill that we are trying to get passed -- Senate Bill 358. If this bill is passed, The U.S. Federal Drug Administration (FDA) would be required to regulate blood screening and the U.S. government would be held accountable for regulating the blood supply, something which they never did. They were supposed to regulate the blood supply, but neglected to do so. This resulted in several thousand hemophiliacs contracting HIV and dying. Senate Bill 358 would require certain manufacturers in the blood products industry to financially compensate people who contracted HIV through blood products, their siblings, their children and their spouses. It would compensate them $125,000 per infected individual and give them Medicare benefits to help offset some of their medical costs.
BP: Would Senate Bill 358 only regulate manufacturers to screen blood for HIV or would it also cover screening for Hepatitis C and other blood-related illness items?
TS: Manufacturers say they screen for HIV, but even if ninety-eight percent of tainted blood is caught and two percent of the virus slips through, people with hemophilia get exposed to millions of people. Every time that I give myself my factor, every time I use a lot number, I expose myself to up to 20,000 people. I may use a dozen lot numbers in a year, at 20,000 people in a lot, and if only 2% of the people get through, I'm significantly exposed. It takes 20,000 donors to make up one lot of factor. That's why so many of us got HIV. If one donor had HIV and they donated in that lot with 19,000 other people, or 20,000 other people, it would take only one donor to contaminate that whole batch of factor.
BP: ** What do blood supply manufacturers do with these lots after people make blood donations?**
TS: They spin it and separate it into different blood products. Another thing I would like to point out is that most people believe that the blood supply is supported by donations, but this is one of the few countries in the world where you actually get paid to donate blood. People can make money off it. Blood donation is usually a humanitarian deed in other countries. In the United States, companies target individuals who need money. Plus, individuals donate a pint of their blood that gets sold and then spun off into nine different blood products. The plasma industry makes huge profits this way and many donors aren't aware of this. The average person donates blood out of charity not realizing that the plasma industry is going to sell that blood to a person like me.
BP: I thought that when I gave blood it was kept in some plastic container somewhere, marked with my type, and when someone needed blood, they just administered my blood intravenously to the person.
TS: Some blood may be handled that way. It's interesting that in the 1970s and 80s, plasma collection occured in prisons and high risk neighborhoods. For many years, they used prisoners to get their blood to make our blood products. That's really not a safe place to be going. And that's just one area. They would also go to neighborhoods where people where considered high-risk for HIV to do blood drives to make blood products for us. Nowadays, the focus has kind of changed. From what I understand, blood drives are big on college campuses because college students need money and it's a less high-risk population.
BP: Now I find that interesting because drinking and drugging has been a major problem on college campuses. Some campuses are well known to be big party schools.
TS: I think it's truly hard to have a perfect blood supply. We're just asking for a much safer blood supply. Another huge issue that the hemophilia community would like to see addressed is the lack of a reliable notification system in the United States regarding contaminated blood products. Basically, the way people are notified now is that the pharmaceutical companies contact the home care companies. The home care companies then notify the patients. By the time patients find out about a contaminated blood product, it's already been infused in their bodies. Any time I or any of my friends have been notified of a recall in the last year, we've already infused the product in our bodies. We would like some kind of 800 number provided that we could call and check by our lot numbers. When we suggested this to plasma fractionators (??) we were advised that it would too expensive. We felt that it should be the cost of doing business. The plasma industry helps to fund a hemophilia summer camp in Northern California every year. We were told that the budget for that camp was about $100,000, the same amount that it would cost to fund a notification system. We were told that we would have to give up the summer camp for the kids in order to have an 800 recall notification system for consumers. This attitude has created a division between hemophilia advocates and the plasma industry. There's a lot of work to be done.
BP: As far as you know, are there people, who received contaminated blood in this country who tested HIV-positive during the past five years?
TS: The last I've heard concerning different cases and lawsuits was in late 1986 or 1987.
BP: In what year did you find out you are positive?
TS: I found out my positive status in 1985 -- as soon as they had a test. Ninety percent of us were already positive when we were tested. That's been part of the plasma industry's line of defense. They say, "We couldn't test for HIV because there was no test until 1985." Our argument to that is, "Did you screen for hepatitis? Had you eliminated the people with hepatitis, you would have eliminated eighty percent of HIV in the blood supply," and that would have saved at least a couple of thousand of us. Instead, they decided, not to do so because it would cut into their profits.
BP: Can hepatitis be considered an opportunistic infection or should it be considered an AIDS-defining illness?
TS: No. It is not an opportunistic infection and I don't think it should be considered an AIDS-defining illuess. Actually, there's different kinds. There's hepatitis A, B and C, and now the medical industry is talking about D, E and F. All these are different strains (??) of hepatitis. We're dealing with HIV right now, but in another five or ten years, I think we're all going to be dealing with hepatitis C, and it's going to be another problem that needs to be addressed by the Centers for Disease Control and Prevention (CDC). Maybe the pharmaceutical industry is waiting so that they can open a new market with a new drug down the road. Right now, the only thing around for hepatitis C, I believe, is alpha interferon.
BP: Making money is part of the bottom line of every business.
TS: Look at South Africa and its experience with AIDS treatments. They pharmaceuticals didn't aggressively push treatments there until they had a market to sell the drugs. I feel that this is their strategy with hepatitis, too. Nobody wants to address hepatitis: nobody wants to talk about it. It's a shame that many of the hemophiliacs walking around are going to want to have children someday. They're going to grow up and want to have families and children. Their physicians are going to say, "By the way, guess what, you're hepititis C-positive. You have to use a condom because you can spread this to your wife." It's going to be the whole HIV type of cycle all over again.
BP: Is hepatitis a natural progression illness if you're a hemophiliac?
TS: Yes. There's chronic hepatitis and then there's acute hepatitis, and somebody like you would probably get acute hepatitis or get hepatitis A from dirty water, food, or whatever. Hepatitis B and C are both blood-borne, and I believe they're both transmitted sexually, too. I'm not positive. Basically, almost anybody with hemophilia who has hepatitiis C and has been using blood products for 15- 20 years has liver disease. It's chronic. It's everywhere. There's hardly a person I know with hemophilia who hasn't been hospitalized with chronic hepatitis C, aggravated by the use of factor and all the impurities in the plasma. It's just hard on the liver. I've lost many friends just from liver failure who were positive, whose livers just couldn't handle their taking any more drugs.Another main message that I've been trying to get to people with hemophilia is that there's a lot of joint pain, so physical pain must be dealt with along with emotional pain. Many hemophiliacs with HIV are alcoholics. Many are chronically on pain narcotics, myself including. I take dilaudid (?). It's a real heavy narcotic. People who have liver disease have to be very careful when taking strong narcotics to held manage their pain because it could damage their liver.
BP: How does emotional trauma impact people's lives?
TS: It can be two-fold. People who just have hemophilia and not HIV don't want to be stigmatized. They don't want people to assume that they're HIV-positive just because they have hemophilia. Then there's the other people who are HIV-positive with hemophilia who don't want people to know the connection. If I had hemophilia and I was working at a restaurant, I wouldn't want people to know I had hemophilia because then they would find out I am HIV-positive. Many people who are positive don't even want their employers to know they have hemophilia.
Some of the other issues center around growing up with hemophilia. One day I might be in a wheelchair, and one day I'm on crutches, and the next day I'm not. When you're a kid, people make fun of you. They call you a faker.
BP: Why would you be called a faker?
TS: I don't know. As a kid, it's happened not just to me, but to several people I know. For one thing, there's pros and cons about having hemophilia. You get undivided attention from doctors and your family. I have many friends right now who are 18, 19, and 20 years old, who now seem to check themselves into the hospital, or wait until they're hemorrhaging so badly that they have to have morphine or Demerol for pain medication. If I start hemorrhaging ó like today I had ankle pain ó I just dose. I don't wait. If know that if I wait it's going to become more painful. It's going to take longer to heal. It's going to cost more money for blood products. It's better to jump on it and be quick, but a lot of people tend to wait.
BP: When you say you "dose," what are you doing?
TS: When I dose with factor, I have a bottle of powder and a bottle of water. I mix the water and the powder. The powder dissolves. I draw it up in a syringe, put a needle on it, and I stick it in my arm.It's not red. It doesn't look like blood. You would never know it's blood. It looks just like water.
BP:** So by dosing, you're replenishing?**
TS: Right. With hemophilia, if you actually had your liver replaced you wouldn't have hemophilia anymore because it's your liver that can't reproduce the factor 8. For me, it's factor 8. For some people, it's factor 9. There's different deficiencies with hemophilia, different factor deficiencies. I happen to have hemophilia A, which is factor 8 deficiency. There's three different kinds of hemophilia. There's mild, moderate and severe. I have severe hemophilia. With mild hemophilia, it would take a severe trauma or blow -- an auto accident, a baseball bat to the head, something like that to cause you to hemorrhage to need blood product. Moderates seem to bleed more often then the mild. With severe, I get spontaneous bleeds. With severe hemophilia you can start hemorrhaging without doing anything, believe it or not. I've had butt bleeds from sitting in bed. At other times I can whack my head on the wall and not bleed at all. You learn what you can do and what you cannot do, or what is your full potential. If I go play football and whack my knee and I'm in bed for two weeks, maybe next time I'm not going to play football.
BP: Are you an innocent victim?
TS: That term is used a lot in Japan. Five or ten years ago, people in the United States used it a great deal. No, I don't think that we look at ourselves as innocent victims. To me, to say "I got it the good way and my other buddy at ACT UP, he got it the bad way." is ridiculous. No, I can't buy into that. I'm not a victim. True, I got HIV through negligence on a lot of people's fault, but if I was a victim I would be under this little rock somewhere saying, "Help me, feel sorry for me." I'm empowered. I'm not a victim. I'm an activist. At one point I probably felt like I was a victim.
BP: Is Senate Bill 358 the same thing as the Ricky Ray Relief Fund?
TS: Yeah! Exactly! It's the Ricky Ray Relief Fund. In the U.S. House of Representative, we needed 214 votes for the bill and we got like 221, or something like that, so we don't need any more in the House. It's in the Senate that this bill is really weak. We recently got Diane Feinstein signed on, so we got Barbara Boxer (??) and Feinstein both signed on in California. We're worried about Tennessee, Alabama and Arkansas, where there aren't big concentrations of hemophiliac people and big concentrations of AIDS groups that can help us out.
The $100,000 settlement required to be paid to HIV-positive hemophiliacs from the specific companies involved in knowingly distributing contaminated blood products really isn't adequate. By the time I've put $50,000 away for my daughter's college education, put a down payment on a home, and buy myself a vehicle, I'm going to be broke again. Also, we're still responsible for our own medical bills. This is just outrageous, ridiculous. I can't even imagine why we're held accountable for our medical bills. Medical bills are a huge burden, and passage of the Ricky Ray Relief Act would really help out. It would really make a huge difference in everybody's life. You can talk to different people regarding the settlement, but no amount of money is ever going to be enough. If they gave me a million bucks, it's not going to give me my T-cells, and it's not going to knock my viral load down. The money isn't the issue: holding people accountable and making them change so that this type of thing never happens again is.
I have a daughter that's a carrier, and she can grow up some day and have a child with hemophilia. God forbid my grandchild has to use the blood supply that's out there now because I know my grandchild is going to get some blood-borne disease through the blood products. If we can keep pushing and influence the development of a better screening process for donors ó some kind of safety net in the system or some synthetic human-made recombinent blood products that carry albumin ó I would feel a lot better.
At this point Terry's 12 year old daughter, Desiree, joins the conversation.
BP: How has your dad's illnesses affected your life?
DESIREE: Well, I don't know. My dad has had AIDS since I was born, so I don't know a life of anything else. I don't really look at it as the things I can't do, but at things that I can do. Like, can kids be on the cover of magazines? Can they get an article? Can they go to an AIDS conference, and just kick some butt? I mean, they can't do that most of the time, and that's something that I can do.
BP: Do you go around and talk to kids about HIV?
DS: Yeah. In the third and fourth grade, I wanted my Dad to speak and do stuff like that, but then they [the school] told me I couldn't speak about that in class. First, I hesitated and then I got mad and frustrated, and banged my head on the wall. I thought that was the end. But, I mentioned that they have "Show and Tell." Guess what, everybody, my Dad has AIDS! You know how he got it? Blah, blah, blah! I would tell them about it, and then they would say, "but you can't do that!" I said, "Why can't I? There's no real rules for Show and Tell. I wasn't disobeying any school rules, so they couldn't punish me! And I could always tell my friend, who could tell a friend, who could tell a friend, etc. At first, people, like, cared. They didn't speak to me, but after that, I got lots of friends! And then if people didn't speak to me 'cause my Dad has AIDS, my friends would speak up for me.
BP: Why do you think people get weird about people who are HIV-positive?
DS: Just stupidity! They're not educated. What you don't know about, speak about, hear about, you don't want to know about. If someone says, "Guess what? There's an anaconda in your back yard." I'm going to go like, "oh, no!" I'm going to duck and cover! I'm going to be afraid of it even though I didn't see it and didn't hear it. People are afraid of what they don't know.
BP: Why are young people frightened when there's stuff about AIDS in the media? Is it because parents tell their kids things that frighten them?
DS: People use the AIDS virus as a reason to tell kids not to have sex. And it's like, why? Because I said so. And now, it's like, don't have sex. Why? Because you'll get AIDS. They automatically assume that if you have sex, you're going to have AIDS, yet if you use a condom, you can prevent it! They don't want to talk about that. They just want to go, like, there's a booklet at school, and it said, you won't get AIDS if you don't have sex. Don't have sex until you're an adult. Then you can choose. But what's the difference? You can get AIDS now or you get AIDS when you're 35? There's no real accurate AIDS education out there.
BP: If a person in your school found out that their parent has AIDS and is a hemophiliac, what would you tell that person?
DS: Well, first of all, I'd tell them, "Sit down. You need to hear some stuff. You need to know that it's not a death sentence. You need to know that your father can live through this virus." I would tell them to tell their dad to take good care of himself, because when my dad found out, he went through this do-every-drug-you-can-find I'm going to die anyway. I would tell them, "Care about your dad. If your dad doesn't care, you hide every single piece of liquor in your house, you hide everything!" I think that if someone does have AIDS, the best thing they can do is eat right and do the opposite of doing drugs. That's what's going to save their T-cells and prolong their life. When they get to a point, they can go on protease inhibitors. There's just so many ways that people screw it up like going into the depression hole.
BP: Which do you think is worse -- living with HIV or hemophilia?
DS: Well, both have their pros and cons. Hemophilia, is a pain in the butt because my Dad can't walk too fast when I go somewhere. He's got to sit down. Problems with his joints really get on my nerves, and he's like, "O.K., I'll treat tonight." And then the next morning, he wakes up, he didn't treat it, and his knee is about the size of this huge football." Then he won't be able to go anywhere with me. When I want to go to the mall or to my friend's, he tell me I have to ride my bike because he can't drive, because his ankle's sore, or whatever. That's a pain in the butt. If he's not going to pretreat, he'll get more infections. AIDS is annoying because I see that he has to worry about little infections and stuff. I see AIDS as more annoying than traumatic. I guess AIDS is worse, because I don't like annoying!
TS: You could live forever with hemophilia as long as you didn't get a life-threatening head bleed or something like that. If it's HIV, you have to think about an infection that could take you out. So from my perspective, it's easier to deal with the hemophilia.
DS: Easier to deal with if you would deal with it.
TS: I deal with it most of the time.
DS: Yeah, uh-huh.
TS: I don't do crazy stuff like white water rafting, rock climbing . . .
DS: Yeah, and don't treat for a week and let your knuckles get huge.
BP: Now, when you say, don't treat for a week, what does that mean?
DS: He didn't take his medicine, he didn't do his blood transfusion . . .
TS: . . . don't take blood transfusions, they'll think that . . .
DS: Sorry! I mean the factor!
BP: Terry, do you think Desiree's a special kid?
TS: Look at what her name stands for. It means longed for, like waited for forever. She is a carrier for hemophilia, and if she should choose to have children one day, she'll always be an advocate for the hemophilia community. She will always be an advocate for the AIDS community, too. I'm glad that she's taking the time and the interest to educate herself, because she could have chosen not to want to learn, and then she wouldn't be where she's at today. When I'm in my hospital bed sometimes, she's right there, telling nurses what to get me. So, yes, she's wonderful.
BP: Do you agree with what he said?