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January/February 2001 Volume 10, Issue 1 Inside this Issue Twin States News Bone Pain in Persons with HIV Empowerment A Guide to Good Medical Help SPRC Feature: Female Ejaculation Calendar HIV/HCV Updates WHATS NEW With Twin States REGISTRATION BEGINS FOR MAY COUPLES RETREAT TSWN is now accepting applications for the Couples Retreat scheduled for May 4th-6th at the Golden Stage Inn in Proctorsville, VT. The retreat is for heterosexual couples where one or both partners are infected with HIV or HCV. The cost is $25 for the weekend. TSWN has been offering weekend retreats for couples for six years. You do not have to be married or living together to qualify as a couple. The retreat offers a chance to meet new friends, attend some very helpful workshops, relax, eat wonderful food, and remember why you're a couple. TSWN has exclusive use of the inn, so confidentiality is not an issue. Space is limited so register early. For more information call 888-338-TSWN. To register fill out the form on page 9. 6th ANNUAL WOMEN'S RETREAT SET FOR JUNE 29TH - JULY 2ND The 7th Annual Women's Retreat will be held on Friday, June 29th through July 2nd, 2001. The 3-day workshop will be held at the Blue Gentian Lodge in Londonderry, Vermont. The Lodge features a swimming pool, hot tub, rec room, and TVs in every room. As usual there will be a variety of workshops and activities to educate, entertain and rejuvenate body, mind and spirit. The cost is $50 for the 3-day retreat, which includes food, lodging and workshops. First-time participants are eligible for $40 scholarships. The registration fee is $10 for all attendees. Partial payments are accepted at any time. Space is limited, so please register early to reserve your spot. For more information call 888-338-TSWN. To register, fill out the form on page 9. HOMEMAKER FUNDS AVAILABLE FOR WOMEN WITH HCV IN VT AND NH We are pleased to announce that private funding sources have made it possible for us to offer homemaker funds to women with HCV in Vermont and NH. Previously only women in VT with HIV could take advantage of this program. Women are eligible for up to $400 per year to pay for cleaning, cooking, and other homemaker services. For additional info or an application form, call our office. TSN PEOPLE NEWS We're happy to announce the birth of Dawn's grandson - Jacob Nathaniel was born on October 6. Congratulations! Return to top BONE PROBLEMS IN PERSONS WITH HIV We recently received a call from a woman who had excellent T cells, undetectable viral load and good percentages. Unfortunately, her bone density test indicated she had the bones of a very old woman, even though she was in her early 40s. We've been trying to find as much information on this topic as possible. There isn't a lot out there to date. However, as one physician noted, it will most likely be a big topic at the Infectious Disease conference in February. In the mean time, we found the following article from Project Inform Sept. 2000. There are a growing number of reports of bone problems (avascular necrosis and osteonecrosis) among people with HIV. These problems are caused by a lack of blood supply in the bone, which leads to the deterioration and death of bone tissue. Generally, bones try to repair themselves. But bones that support a lot of weight, like the hip, can weaken when this condition occurs. This may cause the bone to fracture or collapse. This condition can also lead to severe pain and inflammation or overgrowth of bone in and around the joints (osteoarthritis). While still relatively uncommon, people should be aware of reports of avascular necrosis that have led to hip fracture or dislocation. Symptoms or pain associated with avascular necrosis also commonly affect the shoulder and/or knee. Avascular necrosis is different from osteoporosis, a general term for a progressive loss in bone density that results in skeletal (bones that make up the framework of the body) weakness. What causes avascular necrosis in people with HIV is not known. Some attribute the problems to anti-HIV therapies. Others believe it may be linked to the metabolic abnormalities (e.g. lipodystrophy, changes in body composition and changes in the way that the body stores and uses fat and sugars) that have been discussed in previous issues of PI Perspective. In HIV-negative people, corticosteroid therapy (e.g. prednisone), alcohol abuse, Gaucher's disease (a metabolism disorder) and connective tissue disease are all associated with avascular necrosis. Other diseases that may result in avascular necrosis include diabetes, atherosclerosis (thickening and hardening of the arteries), fatty liver and pancreatitis. Detection and Diagnosis Early detection of avascular necrosis is related to better outcome. Magnetic Resonance Imaging (MRI) is most commonly used to diagnose avascular necrosis. It is especially useful in early disease when the hip or other bone collapse may still be preventable. An X-ray or CT scan is sometimes used to rule out advanced stage disease. By the time avascular necrosis shows up on a common X-ray, it is usually irreversible. The amount that avascular necrosis impacts bones that support weight is the most reliable predictor of outcome. Treating this condition often involves surgery. Symptoms of Bone Disease Individuals experience different symptoms with avascular necrosis. When the hip is affected, people often experience groin pain. This sometimes results in limping and a limited range of leg motion. A distinct feeling of a `click' in the joint often occurs when moving from a sitting position. Almost all people with avascular necrosis affecting the knee report severe pain and tenderness in and around the knee. When the shoulder is affected, people rarely experience pain because the shoulder is not a weight-bearing bone. However, movement of the shoulder is usually restricted. Early intervention with surgery may offer the best chance of preventing serious dysfunction of the hips and knees. Bone transplants may help support the hip as the body tries to restore the flow of blood to the damaged area. Another approach that shows some success is cutting through the bone (osteotomy) to change how the joints function and to redistribute body pressure away from the hips. Crutches must be used for several months after both transplants and osteotomies. Yet another option is to drill out parts of the hip to reduce the pressure inside the bone. About 75% of people who undergo this procedure avoid hip replacement in the future. Hip and knee replacements are usually done only for people with severe pain who also have osteoarthritis. As avascular necrosis appears to be an emerging problem, there needs to be more awareness of it. Research is underway to better understand what causes avascular necrosis in people with HIV. More information should be available in the near future. Return to top SELF EMPOWERMENT BY KIMBERLY AND TOM GOODWIN The self-empowered individual will tell you it takes practice to become self-empowered. Yes practice! Practice making conscious choices and taking positive, healthy actions, whether they be mental, emotional or physical. Review the following empowering habits. Are your choices self-empowering? Familiarize yourself with your internal dialog and replace the negative with positive self-talk. It has been said that our minds think at 500 to 600 words per minute! Whew! And it is safe to say that NOT all those words are positive or empowering. Start listening, you may be surprised. Being aware of the times and situations that you commonly engage in negative self-talk can be empowering. After all, once you are aware you can then choose to substitute positive, confident and empowering thoughts. Avoid blaming external forces for feeling bad and negative thoughts. If you are stuck in traffic and frustrated, do you blame the other drivers, the city for poor planning, etc.? Why? You have the ability to choose your reactions. Albeit, often not consciously. But on some level you do. Perhaps you could now choose to make time stuck in traffic more useful. What are three actions or beliefs you could adjust to change your reactions to commonly upsetting situations? For example, in traffic, always have one of your favorite tapes available to listen to, or leave earlier or later to avoid the traffic. Spend the extra time reading, drawing, writing or doing something you enjoy. Avoid blaming yourself for not being in control or not doing it all right. If someone asked you directions to a place you have never been would you ridicule yourself for not knowing? No! You would do your best to direct them or suggest a place they could get directions. But, beat yourself up over it. No! Yet, many people looking for directions in their own life will beat themselves up for not knowing the way. It takes time to get familiar with the route, even if one has "been there and done that" Be patient and realize detours will occasionally come up. Be conscious of playing the victim and martyr roles. Too often empowerment is lost playing the "poor me" role. The victim and martyr game usually boils down to manipulation or is a form of self-abuse. Both of which stem from fear. We beat ourselves up because we think we deserve it for some reason. "If I were more..." or "If only I did this or that," then we would deserve better. Or, maybe we are trying to insure our way through manipulation: Making others feel bad, so they will give in to our wants. Recognize your payoffs for being stuck. Investigate what you get out of staying in a negative situation. There are often several. For example, when you know you need to let go of a dead end job and find something better, but resist. What benefits are you getting out of not going out and finding something better? Some might be you won't have to confront fears, you will not waste time looking for another job, do not have to explain a lack of education or why you are leaving the other job, will not have to listen to others ask you why, or maybe you are afraid you might get another job that is worse. Once you recognize your payoffs, you will have the ability to notice patterns and develop effective ways to deal with the negative payoffs. Determine what you want and act on it. Would you hire an employee then set them to work without giving them instructions or training? They would aimlessly shuffle papers, get bored and likely not accomplish what you wanted. Instructions and a plan, or at the very least a goal and practice is needed. The same is true with new situations and behaviors. Additionally, do you find you say things like "If only I had this, I could do that?" Stop! Stop waiting for things to just be handed to you. Do not sit back and wait for life to happen to you. Avoid the if only trap and take the needed steps to create what you want. Be aware of the way you communicate to others. Pay attention to the way you interact with people. Do you find complaining and criticizing is common? Remember like attracts like. Do you really want to spend your time with people whose main focus is negativity? Choose positive people and conversations! You will feel stronger, more empowered and it helps ward off negativity. Notice the gifts and lessons in life. Especially in bad situations. If you hate your job for instance, remind yourself of the things you have learned, friends you have gained, or the other pluses. This will empower you by allowing you to see the positive in the situation and other situations. Act as if: And you will become. It has been said "Act as if and you will become." Try it. It really works. Put your chin up, smile, think positive thoughts, remember happy times, and notice all you have to be grateful for and you will feel lighter, happier and more empowered. Whereas, if you frown, groan, grumble, focus on everything wrong in the world and think back at things you think you did wrong, how could you not feel down, lethargic and negative. Self-empowerment takes practice. But, the rewards make it worth it. Success to you! Return to top A GUIDE TO GETTING GOOD MEDICAL CARE Regardless of your specific condition, we all deserve the best possible care available. In order to obtain and utilize treatment appropriately, you will need to find an appropriate care team that you are comfortable working with; know your rights as a patient; and understand your responsibilities to your provider. Finding a care team: In an article written by Rick Sowadsky, he suggests that we ask a series of questions, as follows, before we even select our provider. How much experience do you have in treating HIV/AIDS, co-infection or HCV? How many people with these conditions have you treated? How much experience do you have in women's health? Approximately what percentage of your patients have your condition? How up-to-date are you with the latest treatments? Are you on a clinical trial committee/coalition? How many doctors on your staff are knowledgeable in treating your condition? What are their names? Are the nurses on staff trained as well? What is your treatment philosophy? Passive vs. Aggressive? Holistic vs. Western medicine, or a combination of the two? Do you work with mental health professionals? Is there a mental health professional on staff at your clinic? Your rights as a patient: You have the right to: Considerate and respectful care regardless of race, ethnicity, national origin, religion, age, sexual orientation, gender or payment source. Obtain current and understandable information concerning diagnosis, treatment and prognosis. Know the identity of the physician, nurses and others involved in your care, including those who are students, residents or other trainees. Work with the physician or nurse in establishing the plan of care, including the refusal of a recommended treatment, without the fear of reprisal or discrimination. Privacy and the expectation that all records and communication are treated as confidential except in the case of abuse. Review your own medical records and request copies of them. Expect that an advance directive (such as a living will, health care power of attorney) will be honored by the medical staff. Receive timely notice and explanation of changes in fees or billing practices. Expect an appropriate amount of time during their medical visit to discuss their concerns and questions. Expect that your medical caregivers will follow appropriate precautions including universal protection. Voice concerns, complaints and questions about care and expect a timely response. Expect that the medical caregivers will give the necessary health services to the best of their ability. If a transfer of care is recommended, you should be informed of the benefits and alternatives. Know the relationships your medical caregivers have with outside parties (such as health care providers or insurers) that may influence treatment and care. Be told of realistic care alternatives when the current treatment is no longer working. Expect reasonable assistance to overcome language (including limited English proficiency), cultural, physical or communication barriers. Avoid lengthy delays in seeing medical providers; when delays occur, you should expect an explanation of why they occurred and, if appropriate, an apology. Responsibility to Providers: As a Patient, You Have the Responsibility To ... Provide your medical caregivers with accurate and complete information, and convey your understanding about what is expected of you in regard to your treatment. If you believe you cannot follow through with your treatment, let them know. Meet your financial obligations as promptly as possible. Be considerate of the rights of other patients and medical personnel in the control of noise and respect of property at your appointments or in the hospital. Recognize the reality of risks and limits of the science of medical care and the human fallibility of the health care professional. Be aware of the health care provider's obligation to be reasonably efficient and equitable in providing care to other patients and the community. Become knowledgeable about your health care plan. Report wrongdoing and fraud to appropriate resources or legal authorities. Keep appointments and notify the clinic if unable to do so. Inform the clinic of the existence of, and any changes to, advance directives. Notify the clinic of changes in your condition or care situation. Resources The Coalition for Patient Rights at 1-888-44-PRIVACY (for confidentiality violations). AIDS Survival Project at 404-874-7926 (for advocacy-related issues). AIDS Legal Project at 404-614-3969. The Age Discrimination Act of 1972 prohibits discrimination based on age by any institution or health care provider who accepts Federal funds. The Americans with Disabilities Act of 1990 (ADA) prohibits discrimination against individuals with real or perceived disabilities in employment, public service, public accommodations, communications and employer-provided health insurance. The Health Insurance Portability and Accountability Act of 1996 prohibits the exclusion of an individual from the group insurance market for more than twelve months based on a preexisting medical condition. The Mental Health Parity of 1996 prohibits differential lifetime or annual caps on coverage for physical and mental illness in certain situations. Department of Justice at 1-800-514-0301 (for discrimination of medical care), TTY: 1-800-514-0383. Return to top AN SPRC FEATURE ARTICLE FEMALE EJACULATION One of the topics that continues to be raised at many of SPRC's Sex Positive workshops for women is female ejaculation-what is it, are there risks of transmitting disease in this manner, is it something to strive for. As to the latter question, that's a very personal decision that only the woman can answer. Below is the most up to date information we could find on female ejaculation. As this information was original sent out on the Sex Positive listserv, we've included a comment made by one woman. If you are interested in receiving the weekly Sex Positive listserv, send an e-mail to sprctswn@twinstatesnetwork.org with subscribe SP Listserv in the subject heading. Ejaculation Basics Ejaculate occurs from continuous stimulation of the urethral sponge (G spot). This causes the paraurethral glands to fill up with a clear, odorless fluid, which is sometimes expelled from the body through the urethra. Ejaculation can either accompany orgasm or simply be part of arousal. Ejaculation and orgasm are two distinct physiological phenomena in both women and men. Until recently, the medical literature dismissed anecdotal evidence, suggesting instead that ejaculation was urinary incontinence. It has now been chemically analyzed and determined to be distinct from urine in its composition, although in some women the ejaculate can be more similar to urine. The fluid may contain vaginal lubrication, cervical mucus, and fluid from the uterus and may have a similar chemical composition to male ejaculate (minus the sperm). How much fluid is ejaculated varies from women to women. For some, it's a small amount that's hardly noticeable. For others, particular some of the adult video stars, they can spurt streams of ejaculate into the air. The amount of lubrication produced is quite individual and is affected by menstrual cycle, age, health conditions and even medication. Some women that experience ejaculation may be concerned that they are "peeing." This is not the case. In fact, lots of women find it extremely enjoyable. To read more about how to stimulate the G spot, and female ejaculation, check out "The Good Vibrations Guide to the G Spot" by Cathy Winks (available for loan through the SPRC library). What are the risks? This is more difficult to answer. Unlike male ejaculate, female ejaculation has not been studied in terms of transmitting HIV, STDs, viral hepatitis or other diseases. In fact, a Medline search turned up zero citations for the term. Since the scientific community has only recently determined what's in female ejaculate, and lots of people-including women-are unaware that women can ejaculate- it's not surprising. However, it is a sexual fluid and therefore it's advisable to use protection when a couple is not "fluid bonded." For those not familiar with the concept of "fluid-bonded," this refers to couples who only share bodily fluids with each other, while using latex barriers with everyone else. For the partner who is stimulating the G spot with their finger or fist, it is recommended that a glove be worn for protection. During vaginal or anal penetration, a condom and so forth. Like all bodily fluids, unbroken skin is the best protection. One woman's thoughts on female ejaculation: Note: The video "Fire in the Valley: Female Genital Massage," mentioned below, is one that we've used at various women's Sex Positive workshops. Interested in seeing the video? Call Margo at 802/226-7807 or e-mail. You can also order the video from http://www.erospirit.org, Good Vibrations http://www.goodvibes.com or any other company that sells quality and educational sex materials. It is rather interesting that our patriarchal society would negate the idea of female ejaculation. Incidentally I did a little field research when I went home and I don't believe that female ejaculation HAS to come only from stimulation of the G-spot. It took a lot longer, but lasted longer with only direct alternating with indirect clitoral stimulation. Using the techniques in Fire In The Valley in succession without penetration until penetration was exactly what was wanted, then starting the whole cycle of techniques of Fire In The Valley over again was phenomenal. I think it all goes back to the book Extended Sexual Orgasm called ESO for short that talked a lot about the rise and falls of desire that raises the levels of orgasm to exciting new heights and that by prolonging orgasm you can create a totally different experience. I can't find my copy anywhere, but will be interested to see if it talks about female ejaculation. I looked in my bookcase and now I know why, I no longer have the original book called ESO: How You and Your Lover Can Give Each Other Hours of Extended Sexual Orgasm, originally printed in 1982 by Dr. Alan P. Brauer, a psychiatrist, who is the founder and director of the Brauer Medical Center in Palo Alto, CA. His wife Donna Brauer is the assistant director and a co-therapist. Together, they have conducted sexual enhancement seminars for more than six thousand professionals in the field of sexuality. What I DO have is their second book, written in 1990 and it is called ESO Sexual Ecstasy Program, Better Safer Sexual Intimacy and Extended Orgasmic Response and when I flip to the index there is no specific thing called female ejaculation, but it is interesting because they include a history of what the old ideas surrounding female orgasm were. Gilbert V. T. Hamilton a physician and pioneer American sex researcher, published a study in 1929 of one hundred married men and one hundred married women. These were some of his comments regarding female orgasm, Four of the one hundred women "will have anywhere from two to three to a score of orgasms to the man's one" but he chose to discount that evidence: these multiple orgasms, he thought, were "not fully satisfying,""incomplete," and "spurious, probably clitoral, minor climaxes." I think he was just jealous! Return to top GENERAL & HIV/HCV UPDATES REMINDER: If you haven't gotten your flu shot, it's not to late. According to the CDC, the flu season is off to a slow start and vaccine delays meant putting off getting the shot. However, it is important that people with weakened immune systems be given the vaccination. The CDC is saying is that if many high-risk people get vaccinated, now and in the next several weeks, they will be protected from the many complications that result from the flu. Please note that a recent study has shown that the flu vaccine does not accelerate HIV infection. Got Dry Skin? Keep It Wet Whether it's weather or meds, dry skin can be painful, itchy and even unsightly. At this time of year, you can just flip a magazine, watch one of the home shopping channels, and see a wide array of products-ranging from a few dollars to triple digit figures. So what works best? According to the experts, "The most important thing people need to understand is the only thing that makes skin dry is the lack of water -- not the amount of oil in the skin," explains Dr. Stephen Webster, a dermatologist. "If you have dry skin and you put Vaseline on it, all you have is greasy dry skin," "So the key is to try to use moisturizers to hold moisture in the skin." According to Webster, "When a person gets out of the shower or bath, they should, within three minutes, apply a moisturizing lotion to the skin while it's still wet." "That holds the moisture in the skin." And Dr. Roy S. Rogers III adds that wet skin means just that: wet skin. "I even tell my patients, 'No towel!' " "Take your hand and brush the excess water from the skin and apply the moisturizer to seal the water next to the skin." Without natural humidity to keep skin moist, water escapes from the body. "Your body wants the humidity to be 70%, when the skin gets supple and smooth and pliable," Rogers explains. "When the humidity goes down to 10%, however, you become a hot water radiator. You're losing water through your skin and into the air, so you need to replenish it through bathing or showering, then brushing away excess water and then sealing the water next to the skin with a moisturizer." People also need to apply a good moisturizing lotion two or three times a day, both doctors say. In addition, to avoid dry skin, r suggest you: * Cleanse your skin, but don't overdo it. It's enough to wash your face, hands and feet and between the folds of your skin once a day. Your trunk, arms and legs can be rinsed daily, but don't use soap or cleanser on these areas every day. Too much cleansing removes the skin's natural moisturizers. * Limit the use of hot water and soap. If you have "winter itch," take short lukewarm showers or baths with a non-irritating, nondetergent-based cleanser. Then immediately apply a water-in-oil type moisturizer, and gently pat your skin dry. * Humidify. Humidifiers can be beneficial. However, be sure to clean the units according to the manufacturer's instructions to reduce molds and fungi. * Protect yourself from the wind. Cover your face and use a petroleum-based balm for your lips. * Avoid extreme cold. Cold temperatures can cause skin disorders or frostbite in some people. See a doctor immediately if you develop color changes in your hands or feet in association with pain or ulceration. If you develop extreme pain followed by loss of sensation in a finger or toe, you could have frostbite. * Avoid excessive heat. Do not keep the heat in your home above 78 degrees. Besides adding to your heating bill, high temperatures deplete moisture from the air and contribute to winter itch. Also, avoid using heating pads or placing your legs in front of the fireplace for long periods of time. * Protect your skin from the sun. Winter sun can be as dangerous for the skin as summer sun. It can lead to premature aging of the skin and skin cancer. When outdoors for long periods, use a sunscreen with a protection factor of 15 or greater. * Exercise. For skin with a healthy glow, 20 to 30 minutes of aerobic exercise three times a week. * If problems persist, see a doctor. If you have persistent dry skin, scaling, itching or other rashes, or skin growths that concern you, a dermatologist should be able to help. So what type of moisturizer is best? According to the experts, the lower price ones can be effective-it's all how you use them. Note that if it has a fragrance to it, this might be a source of irritation to some people. If it's a new product for you, do a small test patch on your skin before lathering up and having a total body itch. DOUBLE JEOPARDY: CPS has recently issued an updated version of their excellent handbook for persons with HIV/HCV. There are a number of significant changes between the first edition and this one. Not only is there now a section on complementary therapies, but they also have a section on peglyated interferons. If you need a copy immediately for a client, both the VT PWA Coalition, 800/698-8792 and TSWN, 8888/338-TSWN, have copies available. IF YOUR NEW YEAR'S RESOLUTION IS TO REDUCE THE NUMBER OF CIGARETTES YOU SMOKE: If a lot is bad then a little should be better. But when it comes to cigarettes, that logic goes up in smoke. A new study says heavy smokers don't reap much health benefit -- in the form of cutting down carcinogens -- by scaling back their tobacco use. The result, experts say, suggests that helping these profound addicts quit cold turkey is better than trying to wean them gradually off cigarettes. "No studies have shown that nicotine fading works very well." "Stopping smoking altogether is a better option than trying to cut down." The science on quitting smoking is clear: The body recovers fairly rapidly from the harmful effects of tobacco once you stop using it. And since the extent of damage is linked to how much tobacco you've taken in, it makes sense to assume that reducing intake will be beneficial, too. "We know there's a dose response, and that people who smoke more have a higher risk." AIDS DRUG LINKED TO HIGHER RISK OF KIDNEY STONES: Indinavir, the popular AIDS drug, causes more kidney stones than previously thought--and at a younger age, according to Canadian researchers. Investigators found that the overall prevalence of indinavir-caused stones was 28%--7 times higher than the 4% manufacturers claim in the product insert. Age may be a factor. About 28% of study patients (44 out of 155) taking indinavir developed kidney stones while on the drug, and the average age of these patients was 37 years. CERVICAL CANCER VIRUS MAY SPEED HIV PROGRESSION: A study of laboratory-grown cells suggests that the human papillomavirus (HPV), which is associated with cervical cancer, may increase HIV progression. The researchers discovered that HPV-infected cells produced growth factors and proteins that stimulated the immune system that could reawaken latent HIV infection in immune cells. Their report notes that the HPV-induced growth factors spurred the HIV-infected cells to start producing more copies of the virus. The authors conclude, therefore, that active infection with HPV could speed HIV disease progression. HIGH CANCER INCIDENCE IN PERINATALLY HIV CHILDREN: Children infected with HIV around the time of birth face a significantly higher cancer risk than uninfected children, according to a report of 35 children of 1,331 HIV-infected children observed for a median 6.5 years developed 36 malignancies at a median age of 5.6 years (range, 0.3 to 13.0 years). Among the 1163 vertically infected children, the cumulative incidence of HIV-related tumors was 4.18 per 1,000 children per year, the report indicates. The death rate in this group was 54.4 per 1,000 children per year. Among the 569 vertically infected children prospectively followed from birth, the HIV-related tumor rate was similar (3.57 per 1000 children per year), , though their death rate was higher (69.8 per 1000 children per year). The most common tumor was non-Hodgkin's lymphoma (NHL), and many children with NHL responded satisfactorily to chemotherapy. 9 of 13 treated with a standard protocol remained in complete remission a median 48 months after treatment. Other cancers, including splenic sarcoma, Hodgkin's disease and leiomyoma of the gallbladder, responded less well to treatment, though one child who developed hepatoblastoma at age 5 was alive and cancer-free at age 17. "The risk of cancer was significantly higher but not restricted to symptomatic and/or immune-compromised children." Cancer-directed treatment should be given promptly to these patients, who have a fair chance to survive their tumor in view of potential highly aggressive antiretroviral therapy-associated improvement in survival and quality of life." HCV INFECTION INCREASES MORBIDITY AND MORTALITY IN HIV PATIENTS: For HIV patients on potent antiretroviral therapy, coinfection with HCV results in delayed CD4 recovery, and a 3-fold increased risk of disease progression and death. Dr. Telentiand & colleagues collected data on 3111 participants in the Swiss HIV Cohort Study who were starting potent antiretroviral therapy. The team followed these patients for 3 to 4 years and determined all causes of death. Of the 1157 coinfected patients, 1015 had a history of intravenous drug use. Dr. Telenti's group found that progression to a new AIDS-defining clinical event or to death was independently associated with HCV infection among these patients. Coinfected patients progressed more rapidly to opportunistic disease and death, Dr. Telenti said. "We were a bit surprised that death in this group, even today, is not driven by end-stage liver failure, as one would expect," he added. This association remained even after controlling for a number of confounders including lifestyle. " Even in patients who were compliant with their treatment regimens, "there was more morbidity and there was a delay in CD4 recovery," Dr. Telenti added. "Of all abnormalities, the one that was most striking was a delay in the CD4 recovery after the initiation of highly active antiretroviral therapy." Because of this, Dr. Telenti speculates that there are factors "we don't understand about the biology of HCV and the lymphoid tissue." CHANGING DIET CAN HELP AUTOIMMUNE DISEASE: Getting rid of bread, cutting down on fats and adding fish oil to your diet could help control diseases such as rheumatoid arthritis, lupus or multiple sclerosis, where the body's immune system fights its own tissues, researchers suggest. Lieberman, from the University of Bridgeport School of Human Nutrition in Connecticut, presented a review of studies documenting the effects of dietary changes and nutritional supplements on a variety of autoimmune diseases. ``What makes New York bagels so good is that the grain has been genetically modified to increase gluten. This makes for a chewy bagel, but it also puts a tremendous amount of gluten into the system,'' Lieberman explained. Citing a study in which rheumatoid arthritis patients improved on a gluten-free diet--no wheat, rye, oats or barley--Lieberman reported similar results in the patients she treats. Very low-fat diets, with 20 grams a day or less of fat, have been found to help people with lupus, multiple sclerosis, scleroderma and rheumatoid arthritis, Lieberman said. In one 34-year study of multiple sclerosis patients on such a diet, 95% survived and remained physically active. Defaulting from the diet, even after 5 to 10 years adherence, reactivated the symptoms, she said. Fish oil is another super performer, Lieberman continued. It has been found to be of clinical benefit in a variety of conditions, including rheumatoid arthritis, lupus, psoriasis and osteoarthritis. ``While dietary changes, such as eliminating gluten, get quick results for rheumatoid arthritis patients, supplements may take 3 months or more. As the inflammation is naturally decreased, patients can often reduce their medications and, over time, some can let go of them altogether,'' she explained. EXERCISE BENEFITS FIBROMYALGIA PATIENTS: Patients with fibromyalgia can boost their strength with weight training just as healthy women can, Women with fibromyalgia who completed a 21-week strength training program also reduced their depression and fatigue, but their pain levels did not change, the researchers report in the Annals of Rheumatic Disease. Pain in the muscles and tissues surrounding the joints is the primary symptom of fibromyalgia, a chronic condition often accompanied by depression and fatigue. Researchers divided 21 women with fibromyalgia into two groups. Eleven women went through the strength-training program and 10 received no special care. An additional 12 healthy women went through the weight training program as ``control'' subjects. Two US experts on fibromyalgia treatment note that the study, while interesting, is flawed. ``To just use fibromyalgia patients and not do anything with them is not a good control group.'' He pointed out that the reduction of depression and fatigue seen in the weight-lifting group may have been a placebo effect, which is often seen in fibromyalgia patients who participate in any type of study. ``The question is, are these more general reductions in pain and fatigue and depression due primarily to strength training or are they due to a general sense of well-being from having participated in a study. ``The controls knew that they weren't getting special treatment. Exercise, along with medication and psychological therapy, is part of a comprehensive plan for treating fibromyalgia. While no studies have found that exercise improves pain, it has been shown to help patients function better, improve mood, and reduce fatigue. SCHERING PLOUGH APPLIES TO FDA TO SELL RIBAVIRIN SEPARATELY: On December 14, 2000 Schering-Plough Corporation announced that it submitted a supplemental New Drug Application (NDA) to the U.S. Food and Drug Administration (FDA) in November 2000 seeking approval to market Rebetol (ribavirin) capsules separately for use in combination with Intron A (interferon alfa-2b) for the treatment of chronic HCV. KIDNEY DISORDER MORE FREQUENTLY ASSOCIATED WITH HCV INFECTION: Patients with hepatitis C virus (HCV) infection are more prone to suffer glomerulopathies, or kidney-related disorders, than individuals with other liver-related illnesses. MORE RESEARCH CONNECTS IFN TREATMENT WITH PSYCHOSES IN HCV PATIENTS: A new study adds to the body of evidence that patients with hepatitis C virus infection can sometimes develop psychological symptoms during the course of being treated with interferon (IFN). Several studies have linked interferon therapy with an increased incidence of psychological disorders. "Among 943 patients who were treated with IFN for chronic hepatitis C between 1991 and 1995, 43 patients (4.6%) developed psychiatric symptoms during IFN treatment." Three of the patients had pre-existing psychological disorders and were eliminated from the study. An analysis of the remaining patients showed that they suffered from a variety of problems as a result of taking IFN. Twenty-one patients exhibited symptoms of mood disorder with depressive features, while several more were diagnosed with anxiety disorder. Other psychological manifestations included psychotic disorder with delusions/hallucinations, mood disorder with manic features, and delirium. "Women developed psychiatric symptoms significantly more than men," Hosoda et al. noted. Investigators reported that 25% of the patients stopped taking IFN due to these unfortunate side effects. Twelve of the patients began receiving therapy after they stopped taking IFN. They remained in therapy for more than six months after they had stopped taking the drug, according to study data. At the time the researchers' study ended, seven patients were still suffering from anxiety, insomnia, and mild hypothymia. Hosoda and associates concluded that IFN-beta therapy is significantly associated with long-term psychological disorders in patients being treated for chronic hepatitis C ("Psychiatric symptoms related to interferon therapy for chronic hepatitis C: Clinical features and prognosis," MODIFIED INTERFERON EFFECTIVE AGAINST HCV: An international team of researchers reports that peginterferon alfa-2a is significantly more effective than unmodified interferon at keeping HCV in check. The study included 531 patients infected with HCV who were randomly assigned to receive either unmodified interferon three times a week or peginterferon alfa-2a once a week for 48 weeks. At 48 weeks, HCV levels were undetectable in 69% of the peginterferon alfa-2a group, compared with 28% of the interferon group, according to researchers led by Dr. Stefan Zeuzem. 24 weeks after the patients stopped the treatment, levels of the virus were still undetectable in 39% of people who had taken the modified version of interferon, compared with 19% of those who had taken the unmodified form. The frequency and nature of side effects were similar in both groups. ``Peginterferon alfa-2a is a safe and effective treatment for HCV infection,'' Zeuzem and colleagues conclude. ``Frequently in medicine, more effective treatments are associated with more side effects." This is not the case with peginterferon alfa-2a. ``In addition, the patients will appreciate that this drug has to be injected only once per week instead or daily or thrice weekly,'' he said. In the second study, Dr. E. Jenny Heathcote, reported that peginterferon alfa-2a is more effective than ordinary interferon in patients with HCV who have already developed cirrhosis or some scarring of the liver. Return to top