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November/December 2000 Volume 9, Issue 6 Inside this Issue Twin States News Grief & Multiple Loss Depression Health Resources For Women HCV -Beyond the Liver HIV & HEPC Updates Calendar Whats New With Twin States New Members needed for New Hampshire Community Planning Group The New Hampshire Community Planning Group (CPG) serves a critical role in planning the populations to be targeted to receive HIV prevention services and in defining the programs to be offered for these populations in NH. It is vital that the CPGs membership reflects the HIV epidemic in NH. In order to accomplish this, it is not guaranteed that all applicants will be seated. CPG membership involves attending a 4-6 hour meeting once a month and participation in other tasks, including committee work. Generally, members spend about between 10 and 20 hours a month on CPG work. Assistance with transportation and childcare are available if needed. In addition, members who are not employed in HIV prevention are eligible for a stipend of $100 for each regular CPG meeting they attend. If you are interested in potential membership, please call Denise Rondeau, Public Health Co-Chair, at 603/217-0290 or Buzz Prejean, Community Co-Chair, at 603/650-7520 to discuss. Also, please review the current year's meeting dates to assess your ability to attend: 11/20, 12/18, 1/22, 2/26, 3/26, 4/20, 21, & 22(retreat,) 5/21, 6/18, 7/16, 8/20 and 8/24. All meetings will be held in Concord from 4:00 to 8:30PM. Telephone Support Group Our Telephone Support Group will continue in November as we work on setting up the new On-Line Support group for 2001. Call in on Tuesday, November 21st at 8:30 PM and give Peg as the chairperson. Any questions, call the TSWN office at 888-338-TSWN. MEET A NEW TSN BOARD MEMBER- Mary Chaffee Last month TSN added several new board members. This issue, meet our new co-treasurer, Mary Chaffee. "I am a mother of 2 teenagers and a native Vermonter. I have been a RN for 24 years and have worked at the VA in WRJ, Vt. in several different capacities during this time. Over the last 4 years I have spent a great deal of time and energy learning about Hep C and providing education, support and treatment follow-up to my patients and their families. I started a Hepatitis Support Group in May of 1999 that is open to the community. The group meets the third Thursday of every month from 6:30- 8:00 at the research building of the VA Hospital in WRJ, VT. This is a very upbeat group and has provided a chance for people to learn more about this disease and talk with other people about it. I have had different speakers and topics including nutrition, spiritual aspects, and Hepatitis Doctors. I will arrange speakers on any topic that the group is interested in. I will be starting a liver clinic at the VA in mid November and I am involved with research for Hep C. Both of these areas needed and I am excited to get them going." Return to top GRIEF AND MULTIPLE LOSS Being Alive Newsletter/Los Angeles Sandy Jacoby Klein and reported by Michael Kalla As more people die as a result of AIDS, the emotional aspects of grief and loss become more complicated. Multiple losses occur in many communities and, when they occur, cause increasing rejection, depression, anxiety, isolation, abandonment and anger. This can lead to self-destructive behavior and increased morbidity and mortality. So it becomes essential to identify the needs of those persons surviving these losses, to understand the characteristics of multiple loss, and to teach coping skills. Multiple Loss Syndrome consists of three elements: - - Grief that people feel, - A response similar to post traumatic stress syndrome, - Burnout affecting a person's ability to be present. THE GRIEF The resolution of grief is exacerbated by repeated losses that occur over a brief period of time. It is also complicated by society's attitudes toward homosexuals, IV drug users, and minorities (those communities that are more frequently impacted by AIDS). Grief is rarely validated when relationships are not acceptable. The non-acceptance of these relation- ships in society has encouraged the formation of communities that have become unusually tight knit in many cities. And because of this closeness, the multiple losses have been even more devastating with some people burying more than 50 friends within a few years. OTHER RESPONSES It's difficult at best for the unaffected to relate to the multiple losses caused by AIDS. Perhaps it is best compared to a disaster situation where large numbers of a community are wiped out at one time. In these episodes, we see the impact, the recoil, and a post-traumatic period of recovery. In Multiple Loss due to AIDS, there are very important differences including the fact that the deaths are not stopping it's becoming commonplace to die in one's 30s and 40s. Long term planning and future goals are no longer discussed with enthusiasm, if they're discussed at all. DIFFERENCES FROM NORMAL BEREAVEMENT Multiple Loss Syndrome differs from bereavement in some important ways because individuals who face loss after loss cannot really be expected to bounce back. Each grieving process is compounded by the one before it. People who experience Multiple Loss do not have enough time between traumas to work through the many feelings of the grief process that lead to resolution. The focus seems to be on one major loss. After each new loss people seem to further grieve the loss that they consider most significant and that loss is dealt with as if that's the only one. When you have this kind of a process going on in there's no way to start the resolution because each loss has to have some type of a process that you walk through and come out on the other side. THE BURNOUT EFFECT Multiple Loss can be characterized by feelings of numbness, perhaps an inability to emote or feel feelings or the expression of one's feelings in new ways, by pessimism, cynicism, fatalism or insecurity. The concern is that if people feel this way, they may engage in irresponsible, self destructive behavior. One of my patients told me that he felt a "snowball effect" when these deaths began to happen back to back. "I began to feel overwhelmed and disloyal in the sense that I haven't done enough to pay tribute to each of my friends." We see a lot of anger and that seems to be the most prevalent emotion in this grief. We know that anger is also increased by the ravages of the disease process the contagion, the neurological complications, the protracted illness and certainly disfigurement. Along with anger, despair is a word that frequently comes to mind. These combined losses leave a sense that all the emotions one had are now removed. CHARACTERISTICS OF MULTIPLE LOSS There are many symptoms that we associate with pathological grief. These include:- intensified guilt or rage, - increased physical symptoms, - denial, - delayed reaction, - acting out of self-destructive behaviors. Most of the time these are unconscious. People don't realize that they're doing this and they don't realize that they're related to unresolved grief. Many people feel disbelief when others talked about so many losses and at one time wondered how any of their friends could know so many people or have so many acquaintances until it starts happening to them. Some try to cope by looking at the good side of knowing so many and have an increased sense of having loved and been loved by some really incredible people. There are also frequent complaints of a lack of connection to others, including an unwillingness to make new friends. When that happens and you become more isolated, then your support system diminishes and you find yourself trapped in this revolving wheel of feeling more alone and more isolated and afraid to go out. We also know that there are other losses than death. We mentioned loss of validation from society and certainly the loss of one's health, but we can talk about the loss of community, the loss of sexual freedom, of hope for the future, of dreams with a partner growing old together, loss of job stability, loss of family support, and loss of privacy and personal power because often, when HIV status becomes known, people are ousted against their will. I'd like to share with you some words from Mac. His best estimate is that lost 10 friends, 34 acquaintances and co-workers and 50 church members. He says, "I feel shell-shocked, angry, scared and numb. I isolate in defense. But there's no choice because doing nothing is not an option. I can't not care. Well, what has all this taught me? I have learned how to take better care of myself and my needs and really enjoy life and the people in it. Sure I help and I'm there for people right after I've taken care of ME." ANTICIPATORY GRIEF Anticipatory grief is a term used to refer to grieving before the actual death. This term can also refer to the apparent lack of grief reaction at the time of death. We know that death from AIDS is rarely sudden and it's prolonged character offers opportunities for anticipatory grief or "pre-death" bereavement. There still is no real clear cut evidence that this decreases the mourning that one goes through after the death, but we know that it can influence the intensity of feelings. It's also important to assess coping skills, suicide risk and other self destructive tendencies. Certainly, it's important to understand and reconnect people to support systems. Because of all the multiple losses over short periods of time, it's valuable to try to resolve each loss as fully as possible understanding the place that the person who died had in the life of the survivor. This process offers closure and it reduces the guilt and the confusion that are often experienced when a friend dies and you can't quite find a new place in your life for that person. We know that the survivor may also be grieving the loss of the role of caregiver. Those who are grieving need to find venues to express their feelings to recognize their own losses and not be ashamed to share them. RESOLUTIONS Now that you've heard all of his background and some depressing ideas about grief and bereavement, what can we do about it? We can stay involved with friends and outside support systems in order to maintain a forum for discussion for all these feelings and stresses. Self expression with good listeners is one of the best predictors of grief recovery. How about taking an occasional HIV/AIDS vacation? This means time away from the constant reminder of the disease. Or if you check with your doctor first, maybe by not taking all those medications for a very short period of time. We can light a candle to represent loss and take a moment to remember those who had meaning in our lives. You can also light a candle for those living with HIV or for those who love someone with AIDS. This represents the continuing reinvestment in life and in hope. Be aware of and apply as many as possible of the long term survivor attributes that were identified by Dr. Solomon in 1988. For instance, perceiving the treating physician as a collaborator and not interacting in a passive, compliant mode. Have a commitment to life in terms of unfinished business, unmet goals, or even as yet unfulfilled experiences and wishes. Find a new meaning as a result of the disease itself. Accept the reality of the diagnosis of AIDS in conjunction with the refusal to perceive the condition as a death sentence. Long term survivors have the ability to withdraw from taxing involvements and to nurture themselves. They are assertive and have the ability to say "NO". Develop rituals such as the AIDS Quilt to symbolize the magnitude of the loss. Participate as fully as possible. Active participation has a connection to personal empowerment. Learn to focus your anger so that it can empower you instead of depress you. Acknowledge the anger and act it out in a helpful way. Dance. Sing loudly. Learn how to draw. Use this to explore underlying emotions that you might have neglected. Volunteer to help someone less fortunate than you. Pay attention to self-care including grooming, exercise, nutritional support, fluid intake and rest. Understand that you always have choices and learn how to make the best ones. This creates a sense of control because it identifies the things that you can still be in charge of. You can't change the occurrence of the illness or of death but you can change your attitude toward it. Be realistic about setting possible outcomes for yourself. Learn to find a new place in your life for those who have died so that their specialness can continue to enrich you. Hold onto your sense of humor. George Bernard Shaw said that "Life does not cease to be funny when people die anymore than it ceases to be serious when people laugh." Religious activity, afterlife and spiritual beliefs keep you connected to others, so explore your own beliefs and challenge your own assumptions. There are special concerns for gay people who are bereaved. And these concerns are compounded by the multiple losses faced by the community in relation to HIV and AIDS. The mechanisms for coping with this can be explored with knowledgeable understanding clinicians who are well informed about grief, AIDS and gay issues. The loss of significant others is painful, but the pain can be eased by keeping your sense of humor, by caring and by acceptance. As Robert Cody said "Have the courage to live, anybody can die." Return to top DEPRESSION IS IT WINTER, THE APPROACHING HOLIDAYS, THE BLUES OR IS IT DEPRESSION? The loss of sunlight can make one feel sad and lethargic. Even in the best of circumstances, the holidays are a hard time for lots of people. People with chronic illness tend to report a higher incidence of depression. In fact, in people with HCV, there is more and more discussion in the literature that the virus itself can cause depression and even panic disorder. In 1999, Dr. Trisdale reported that clinical depression can be mistaken for: advancing HIV disease; over half of all people with HIV are likely to end up with clinical depression; women are twice as likely to suffer from depression as men; and that clinical depression is one of the leading causes of non-adherence to HIV medications. The high incidence of depression in women is not yet clear. Is it due to women's hormonal cycle or a woman's role in society? Scientists are just beginning to work out the relationships between sex hormones and the brain chemicals involved in depression. One common but often-overlooked cause of depression in men (and some women) with HIV is low testosterone. People with HIV should have their levels checked as part of any evaluation for depression. A study at Columbia University found that three-quarters of HIV-positive men with major depression who had deficient or even "low normal" testosterone levels showed improvement "equal to that achieved with standard antidepressants" when given supplements of the hormone. Other contributors to depression are overall malnutrition or deficiencies of B vitamins (especially B-6 and B-12), very common in people with HIV. So how do you know if it's just the temporary case of the blues or if it's depression that requires intervention? Depression is not something that lasts a day or two. It is a feeling that can last for months or even years. It affects changes in your body chemistry and your brain. It can change your outlook on life. Some symptoms to look for in yourself or someone you care for are over-eating or under-eating, oversleeping or insomnia, crying jags, emotional over-sensitivity, social isolation, low energy and fatigue, a feeling of being 'slowed down' or less motivated than usual, low self esteem, an inability to concentrate, loss of interest in sex; loss of interest or pleasure in activities; loss of concentration or memory problems; a persistent sad, anxious or "empty" mood; feeling guilty, hopeless or worthless; or thoughts of death or suicide and a feeling of lack of pleasure or joy called 'anhedonia.' A common misconception about depression is that you must have suicidal thoughts or plans to be 'really' depressed, and although these are certainly symptoms of depression, many depressive people never experience them at all. What are the causes of clinical depression? People with depression typically have too little or too much of certain brain chemicals, called "neurotransmitters." These brain chemicals may cause, or contribute to, clinical depression. Depression can also be caused by medications. The combination therapy for HCV is well documented as being a culprit. Some of the drugs being used by people with HIV can impact mood as well. It is important to tell your doctor about all of the medicine you are taking. It would be helpful to have a conversation with your doctor if you suspect that any of your medications are causing depression so a plan can be put in to place to resolve the depressive symptoms. People with negative thinking patterns (low self-esteem, worrying too much or feeling they have little control over life events) are more likely to develop clinical depression. Difficult life events -- divorce, financial problems, moving to a new place, the death of a loved one, or a loss - may trigger an episode of clinical depression. Wonder if you are suffering from depression? Ask yourself the following questions about your feelings for more than the last two weeks. Rate your answers by: Never, Rarely, Sometimes, Very Often, Most of the time Do you feel sad, blue, unhappy or "down in the dumps"? Do you feel tired, having little energy, unable to concentrate? Do you feel uneasy, restless or irritable? Do you have trouble sleeping or eating (too little or too much)? Do you feel that you are not enjoying the activities that you used to? Do you feel that you lost interest in sex or experiencing sexual difficulties? Do you feel that it takes you longer than before to make decisions or unable to concentrate? Do you feel inadequate, like a failure or that nobody likes you anymore? Do you feel guilty without a rational reason, or put yourself down? Do you feel that things always go or will go wrong no matter how hard you try? If you find yourself with a number of Cs, Ds and Es, it might just be that you are suffering from depression. How can you treat it? In the March 2000 issue of POZ, Maia Szalavitz writes in Beat the Blues, " Depressed people often resist getting treatment, and HIVers are no exception. In addition to "I'm not crazy," "It's my own fault I'm miserable," "Nothing's gonna help" and other routine rationalizations, HIVers have a special zinger to fling at folks who tell them to get over it: "You'd be miserable, too, with a life-threatening virus." Well, get over it -- untreated depression has serious health effects and can even shorten your life, not to mention just being a big bummer. What might surprise the downcast is the news that depression is very treatable." If the depression is diagnosed as mild or moderate, everything from psychotherapy to exercise to pets can help. The main issue is can you mobilize to take these actions? If you can get yourself to your support group, the gym or the dog run, all well and good. But if, as Emily Carter describes in "Woman on the Verge," even finding a pair of clean socks in the morning (or late afternoon) looms as an overwhelming task -- you may need to start an antidepressant. Phil Bialer, MD, who started the AIDS psychiatry unit at Beth Israel Medical Center in New York City, advises that even before you shop for St. John's Wort or start a daily jogging routine, first get a psychological evaluation. "It's a very complicated illness," Bialer says. "It's important to have a mental-health worker as part of your treatment team." Many practitioners recommend weekly visits with a psychiatrist, psychologist or social worker for four weeks, with at least one 30-minute consult every month thereafter. Ongoing monitoring is especially important if your treatment of choice is pharmacological. Medication can help 80% of people with depression, and the other 20% often respond to other treatments such as ECT (electro-convulsive therapy, which is no longer the frightening 'shock' treatment of the past). New medications are rapidly being developed and more people now than ever before can find some kind of relief. The state of the art treatment for depression is a combination of medication and a particular type of therapy called 'cognitive-behavioral' therapy. The most commonly used medications are the SSRI's (Prozac, Paxil, Luvox and Zoloft), which work on the brain chemical serotonin, and a drug in another class called Wellbutrin (brupropion). Also commonly used are novel antidepressants called Effexor (venlafaxine), Serzone(nefazodone) and Desyrel (trazodone). People's reactions to each drug are highly variable and it may take a little time before you find the right one, but most people can find one that relieves depression without horrible side effects. If these drugs don't work, you can also try the older drugs called tricyclics: Elavil (amitryptyline), Norpramin (desipramine), or Pamelor (nortriptyline). Another class called MAO Inhibitors is usually used only as a last resort because it requires a special diet to avoid foods that could kill if they interact with the drug. Unfortunately, some HIV medications also interact with antidepressants, particularly Norvir. It can increase the blood levels of SSRI's and tricyclics dramatically and should not be used with Wellbutrin. It also causes very large increases in Serzone and Zoloft levels and moderate increases in Prozac, Paxil, Desyrel, Effexor and all tricyclic levels. There have been reports of cardiac and neurologic problems using Serzone or Prozac with Norvir. Be sure to tell your psychiatrist about every medication you are taking if he or she wishes to prescribe antidepressants as other HIV medications may have interactions as well. People often fear medication because they worry about becoming addicted or being stigmatized as mentally ill because they take psychiatric medicine. Antidepressants are not addictive-you don't feel the need to take more and more of them the way you do with drugs like cocaine or heroin, and they don't cause a 'high.' What they do is restore your ability to feel pleasure and not to drown in sadness. And, as to the stigma: Is it more crazy to leave a condition untreated or take medication which can help? Anyone who denounces antidepressants on principle either hasn't suffered this illness or has no compassion for those who do. People who have endured more than two bouts of depression are usually recommended to stay on medication indefinitely because research has found that this greatly cuts the chances of recurrence. People in recovery from addictions should not avoid anti-depressants for fear that they are a "slip" or "relapse" -- untreated depression is far more likely to lead to a return to drug abuse than doctor-prescribed non-addictive medications are. You may also have heard that the SSRI drugs have bad sexual side effects and that they can kill your sex drive or your ability to experience orgasm. But by changing the dose or medication, most people can find something that keeps depression at bay while allowing sexual pleasure. While there are several herbal remedies for depression, the leading one St. John's Wort, these can have very negative interactions with medication being prescribed for other conditions. Therefore, before starting on any treatment regimen, talk to your provider. Combining talk therapy with medication produces better results than either technique alone. A support group (chat group on Wednesday night, 12-step group) can be as helpful as a professionally led group in most cases. If you chose to do individual therapy, Freudian, Jungian, insight-oriented therapies have not been found to help depressed people. Cognitive techniques work by helping people to reframe their thoughts and take actions to directly fight the condition. Learning about your childhood may be interesting, but for most people, it doesn't relieve depression. Cognitive therapy isn't fancy or complicated and isn't usually required for long periods of time. In fact, some of the slogans in AA like "One Day at A Time" and "Make a gratitude list," actually refer to cognitive techniques that help fight depression as well as alcoholism. Finally, having a pet and getting regular exercise, which kicks the endorphins, a natural anti depressant, into gear, can be beneficial. If you have not been exercising regularly, be sure to talk to your provider first. Never had a pet, but think you might want one, talk to your local animal shelter about what might be the best pet for you. VT/NH SCREENING PROGRAMS FOR WOMEN Women who are living with chronic and life threatening conditions, like HIV and hepatitis, don't always obtain the necessary screenings for breast and cervical cancer. The reasons why can include: not having the money; not thinking about their entire health picture as they are so focused on the HIV or HCV; tend to only see a specialist who is primarily focused on a specific disease and not necessarily thinking of mammograms; or they just simply forget. Vermont and New Hampshire each have programs to help women with either no insurance or a high deductible obtain necessary screening and testing. LADIES FIRST/VERMONT Vermont is ranked in the top 10 states for breast and cervical cancer deaths for the past three decades. The VT Health Dept. has a federal grant to help reduce breast and cervical cancer deaths. The program offers free mammograms and Pap tests to women 40-64 years of age with limited income. (In 1998, a two- person household could earn up to $27,000). Even if a woman has insurance, Ladies First can pay for the gap between the cost of the annual screening and her insurance. Women can use their current provider, as long as they are registered with Ladies First (nearly all physicians and nurse practitioners serving VT women are already participants). Once enrolled, the woman receives reminders for her next free screening. The Health Dept is also sponsoring a program, Every Woman Matters: "We want to bring lesbian health issues out of the closet." Using a special brochure, the Ladies First services are working to bring more lesbians into the program. To learn more about Ladies First's services call Kate at 1-800-508-2222 or TDD 1-800-319-3141. Foreign language interpreters are available. Ladies First can even assist with finding a doctor or arranging for transportation. LET NO WOMEN BE OVERLOOKED, BREAST AND CERVICAL CANCER SCREENING/NEW HAMPSHIRE The NH program is offered through designated clinics and sites throughout the state. Services are available for women 18-64 who have no health insurance or a high deductible and are 250% below the poverty level. For more information about the program call 1-800-852-3345 X 4931. Return to top BEYOND THE LIVER: OTHER CONDITIONS ASSOCIATED WITH HCV If you have HCV, are co-infected with HIV and HCV, you've probably heard a lot about potential liver problems. However, there are other conditions that do appear in people with HCV. Depression is a leading one, with many women reporting having it for some time, as well as during treatment. Does HCV cause the depression? The jury is still out on this one, but there are some good indications that it might. Treatment with inteferon does cause depression and some providers prescribe an anti-depressant along with the combination therapy. Some studies are indicating that panic disorders might be associated with infection as well. Other conditions that are commonly noted with HCV include rheumatoid arthritis and fibryomaglia. In the last month, it has been reported that persons with HCV that are 40 and over, have a three fold increase in diabetes type 2. A note of caution, just because there are a number of conditions listed below, it doesn't mean you have them. If you have symptoms, talk to your provider before you self-diagnosis. Osteoporosis (Thinning of Bones) and Fractures: As liver disease progresses, bone loss may be accelerated. This is seen more frequently in persons with advanced HCV, especially those receiving medication for other conditions. Note that bone thinning has been associated with some of the medications used for HIV. Membranoproliferative glomerulonephritis: A specific type of kidney damage, it can occur when immune complexes of HCV lodge in the kidney and cause inflammation. It's often detected when a routine urinalysis shows protein in the urine. Rarely leads to kidney failure. Often responds to interferon. Cryoglobulinemia: The signs of this condition are skin rash, fever, kidney damage, and ulcerations on the fingers and toes. It's caused by antibodies that the body manufactures against the HCV. Treatment may include interferon, steroids, cyclophosphamide, immunoglobulins and plasmapheresis Thyroid Disease: Very common in the general population (2 to 3 percent) and even more common in persons with HCV (5 to 20 percent). Usually, it's an underactive thyroid causing the problem, but in rare cases, the thyroid can be overactive. Signs of underactive thyroid include cold intolerance, sluggishness, dry skin, coarse hair, a change in voice, mental confusion. Signs of an overactive thyroid include palpitations, sweating, heat intolerance, jitters, tremor, poor concentrating ability and hypertension. Underactive thyroid is treated with hormone replacement such as levo-thyroxine, while overactive may involve radioactive iodine, beta-blockers and propylthiouracil. Skin Conditions: Can include: Lichen planus-reddish brown raised round spot, usually less than 1-2 centimeters in diameter, sometimes scaly and itchy). May flare during interferon treatment. Best treated with dermatological lotions/creams Lichenoid dermatitis scaly reddish flat areas, usually larger than 2 centimeters in diameter, occasionally itchy. May flare during interferon treatment. Best treated with dermatological lotions/creams Porphyria cutanea tarda (appears as blisters on sun-exposed areas or areas of trauma, usually on fingers and hands). Responds to iron removal by taking blood and treatment of the HCV. Autoimmune Conditions: Under normal conditions, an immune response cannot be triggered against the cells of one's own body. In certain cases, such as HCV, immune cells make a mistake and attack the very cells that they are meant to protect. This can lead to a variety of autoimmune diseases. They encompass a broad category of related diseases in which the person's immune system attacks his or her own tissue. Particular autoimmune disorders are frequently classified into organ-specific disorders and non-organ-specific types. Autoimmune processes can have various results, for example, slow destruction of a specific type of cells or tissue, stimulation of an organ into excessive growth, or interference in its function. Organs and tissues frequently affected include the endocrine gland, such as thyroid, pancreas, and adrenal glands; components of the blood, such as red blood cells; and the connective tissues, skin, muscles, and joints. Some autoimmune diseases fall between the two types. Patients may experience several organ-specific diseases at the same time. There is, however little overlap between the two ends of the spectrum. In persons with HCV, some autoimmune disorders result because of the infection itself and others as the result of treatment with combination therapy. Reported autoimmune disorders among people with HCV include: Diabetes Rheumatoid arthritis Fybromyalgia Idiopathic thrombocytopenic purpura (low platelet count) Autoimmune chronic active hepatitis (inflammation in the liver due to immune system Polyarteritis nodosa (inflammation of blood vessels-abdomen, liver and kidney) The following autoimmune conditions can occur during treatment with interferon: Hemolytic anemia (red cells break down) Pericarditis/pleuritis (inflammation of the lining of the heart and lung) Psoriasis Rheumatoid arthritis Systemic lupus erythematosis Return to top UPDATES: HIV AND HEP C Test Predicts Risk of Depression Due to InterferonOne of the more potentially debilitating side effects of interferon treatment is depression. A recent study in Italy has shown a successful correlation between a standard psychiatric test and patients most likely to suffer from depression while under interferon treatment. According to this study, the Minnesota Multiphasic Personality Inventory test used prior to interferon treatment was a reliable way to predict those patients at risk for depression after beginning treatment. BMS 232632, FIRST ONCE DAILY PI: New experimental PI, BMS 23532, is the first to demonstrate no effect on cholesterol and trigliceride levels in treatment-naïve patients after 24 weeks of therapy. BMS 232632 is a potent experimental anti-HIV drug now entering Phase III testing that is the first PI with once daily dosing The researchers conclude that BMS 232632 appears to have a favorable resistance profile that does not resemble the other PIs included in the study (isolates of the new PI Kaletra recently approved by FDA was not included in the study). Bristol-Myers Squibb announced during the 40th ICAAC in a meeting with community treatment advocates that the company also is ready to begin planning an "expanded access" program for BMS 232632. DIETARY FAT REDUCTION OF NO USE IN MANAGING HIV RELATED LIPODYSTROPHY: Researchers in Australia have detected no relationship between fat intake and parameters characteristic of fat redistribution syndrome (FRS). They suggest that dietary fat reduction alone would be ineffective in treating this disorder. Dr Marijka J. Batterham and colleagues of the Royal Prince Alfred Hospital in Camperdown evaluated serum and body composition parameters in 100 consecutive HIV-infected patients. AIDS. 2000;14:1839-1843. SOME HIV PATIENTS CAN BE WEANED OFF DRUGS: A new report published in Nature shows that people with HIV who are treated with antiviral drugs quickly after infection can teach their immune systems to suppress the virus without using drugs, indicating that there is a way for a small number of people to take drug holidays or stop treatment and still control their HIV infection, according to Eric Rosenberg, chief author of the study and an instructor at Harvard Medical School. Researchers will now try to find a way to help chronically infected HIV patients fight the virus using highly active antiretroviral therapy, or HAART, a combination of three or more antiviral drugs that can stop HIV from replicating; quick treatment with HAART has been shown to suppress the virus to undetectable levels. Rosenberg and colleagues studied 16 patients who were recently infected with HIV, and two of eight patients who chose to stop HAART maintained low enough levels of the virus to stay off antiviral drugs through two respites from the regimen, though the other six showed returns to detectable levels of HIV. Bruce Walker of Harvard supervised the research, and is cautious, saying that they must monitor the lives of the eight patients and see if they live longer, but the study's authors are optimistic because they believe the patients benefited from treatment interruption before the regimen caused permanent damage to the immune system, indicating that stopping and restarting treatment could allow the body to produce enough CD4 cells to keep HIV under control for years. HIV PATIENTS URGED NOT TO DELAY TREATMENT: A study conducted by Dr. Barbara Turner of the University of Pennsylvania shows that some people who are diagnosed with HIV delay treatment for months. Turner and colleagues interviewed 3,500 HIV-infected patients diagnosed by February 1993 or February 1995, and found that one-third of the group delayed treatment by an average of one year. The author reports in the Archives of Internal Medicine (2000;160:2614-2622) that 21 percent in group A waited over six months to seek treatment, allowing enough time for serious AIDS-related complications. Latinos were more likely to delay treatment than whites, and those who had a regular source of care or Medicaid were less likely to delay treatment. ENCHANCEMENT OF HIV AFTER TEMPORARY TREATMENT INTERRUPTION: A study of five chronically HIV-infected subjects with antiretroviral therapy-mediated virus suppression and five untreated controls was conducted to compare the virologic outcomes of treatment interruptions. An interruption of therapy for 55 days, on average, showed that restarted therapy suppressed the viral load in four of five subjects by 33 days with no decrease in T cells percentage. The one subject who did not resume treatment maintained a low viral load, report the scientists from the Wistar Institute and the University of Pennsylvania. Journal of Infectious Diseases Online www.journals.uchicago.edu/JID (09/00) CO-INFECTION ALT NORMAL BUT 8/10 PERSONS HAD FIBROSIS Abstract # 175 from ICAAC: HCV and Liver Biopsies. In yet another of the now many examples of why ALT is not an adequate marker for determining extent of liver damage, Hoffman-Terry and colleagues performed liver biopsies on 24 HIV co-infected patients. 14 of the 24 had elevated ALT’s. On biopsy, 14 out of 14 with elevated ALT showed moderate to severe fibrosis and 8 out of the 10 without elevated ALT also showed fibrosis. 2/8 had severe inflammation +/- fibrosis. Author concluded: While our study population was not large enough to achieve statistical significance, biopsy proven inflammation/fibrosis was evident in all patients with abnormal ALTs but also 8/10 of those with normal ALTs. Once again directing patients and clinicians to suggest liver biopsy for everyone who is co-infected with HIV and HCV. In their conclusions the authors made an interesting observation among this small number of patients. They noted that those who did not have elevated ALT’s were those who had lower CD4’s. They stated that this might be due to a decrease in immune activity against HCV leading to less hepatocyte destruction and thus less release of ALT into the bloodstream. This will have to be confirmed in larger studies but it worth noting. HEPATITIS HCV INCREASES DIABETES RISK: People who are 40 years of age or older and infected with hepatitis C have more than triple the risk of developing type 2 diabetes, the type of diabetes that commonly occurs in adulthood. In the new study, Shruti Mehta and associates from Johns Hopkins University in Baltimore, Maryland looked at more than 9,800 adults who took part in a health survey. Just over 8% of the study participants had type 2 diabetes and about 2% had evidence of hepatitis C virus (HCV) infection. The rate of type 2 diabetes was notably higher in the HCV-positive group than in the HCV-negative group, the researchers note, except in persons younger than 40 years of age. In the 40 to 49 year age group, those with HCV infection were 3.1 times as likely to have type 2 diabetes as those without HCV infection. Previous studies have linked HCV to diabetes, but only in people with severe liver disease. These results confirm that type 2 diabetes occurs at higher rates even among patients with milder forms of HCV infection, the authors conclude. Further research is needed to determine exactly how HCV contributes to the development of diabetes. However, Mehta and colleagues believe that the findings are ''consistent with the inference that HCV infection causes type 2 diabetes through progressive liver damage.'' C-SECTIONS MAY PREVENT LIVER INFECTION IN INFANTS: In contrast to the belief that nothing can be done to prevent mothers from passing on the hepatitis C virus (HCV) to their babies, UK researchers have found that delivering at-risk babies by cesarean section may protect the infants from the virus. Among 441 HCV-infected mothers and their children, no child delivered by elective C-section contracted the virus, compared with more than 7% of those delivered vaginally or by emergency C-section. This confirms that the highest risk of mother-to-child transmission is during delivery, the researchers explain. Moreover, it suggests that a planned C-section might protect newborns. About 5% of babies born to infected mothers become infected themselves, and doctors currently have no way of preventing transmission. However, if further research proves C-sections can prevent transmission, that would bolster the case for screening pregnant women for HCV. Testing is not widely performed because there has been no known way of preventing transmission anyway, she explained. Gibb's team found an overall transmission rate of nearly 7%, including 8% of babies born vaginally and 6% of those born via emergency C-section. Unlike women who elected to have C-sections, those who had an emergency procedure experienced rupture of the membranes, thus explaining their higher transmission rate. Return to top UP COMING EVENTS CALENDAR TELEPHONE SUPPORT GROUP TUESDAY, NOVEMBER 21st at 8:30 PM Call 800-473-7796 - Give Peg's name as chairperson. WORLD AIDS DAY- DECEMBER 1st. For more details: www.worldaidsday.org AMFAR 13th National HIV/AIDS Update Conference on March 20-23, 2001. San Francisco Go to: www.amfar.org National Hepatitis Congress Walk on Washington March 23, 24, & 25, 2001