Positively Aware HIV Treatment and Health September / October 2009 HHIV:IV: TTHEHE BBASICSASICS WWHATHAT YYOUOU JJackack SSHOULDHOULD MMackenrothackenroth KKNOWNOW RReveals…eveals… HHisis “Design“Design fforor LLiving”iving”
HHiViV andand YYourour IImmunemmune SystemSystem TThehe FFinancialinancial FFalloutallout ooff HHIVIV EExercise—Thexercise—The BBestest TTherapyherapy
TThehe JJournalournal ofof TTestest PPositiveositive AAwareware NNetworketwork USE OF TRUVADA: TRUVADA is a type of medicine called an HIV-1 (human immunodeficiency virus) nucleoside analog reverse transcriptase inhibitor and combines EMTRIVA® (emtricitabine) and VIREAD® (tenofovir disoproxil fumarate [DF]) in one pill. TRUVADA is always used with other anti-HIV-1 medicines to treat adults with HIV-1 infection. TRUVADA® does not cure HIV-1 infection or lower your chance of passing HIV-1 to others. TRUVADA should not be used with ATRIPLA® (efavirenz ® ® HIV doesn’t have 600 mg/emtricitabine 200 mg/tenofovir DF 300 mg), VIREAD , EMTRIVA , Combivir® (lamivudine/zidovudine), Epivir® or Epivir-HBV® (lamivudine), Epzicom® (abacavir sulfate/lamivudine), or Trizivir® (abacavir sulfate/ lamivudine/zidovudine) because these medicines contain the same or similar Desiree ® active ingredients. TRUVADA should not be used with HEPSERA (adefovir My HIV meds dipivoxil). include TRUVADA IMPORTANT SAFETY INFORMATION: Contact your healthcare provider right away if you experience any of the following side effects or conditions while taking TRUVADA: • Nausea, vomiting, unusual muscle pain, and/or weakness. These may be signs of a buildup of acid in the blood (lactic acidosis), which is a serious medical condition • Light colored stools, dark colored urine, and/or if your skin or the whites of your eyes turn yellow. These may be signs of serious liver problems (hepatotoxicity), with liver enlargement (hepatomegaly), and fat in the liver (steatosis) • If you have HIV-1 and hepatitis B virus (HBV) and stop taking TRUVADA, your liver disease may suddenly get worse. Your healthcare provider will monitor your condition for several months • If you have had kidney problems or take other medicines that can cause kidney problems, your healthcare provider should do regular blood tests to check your kidneys • Lab tests show changes in the bones of patients treated with VIREAD, a medicine in TRUVADA. If you have had bone problems in the past, talk to your healthcare provider before taking TRUVADA. Also, bone pain and softening of the bone (which may contribute to fractures) may occur as a consequence of kidney problems. Changes in body fat have been seen in some people taking TRUVADA and other anti-HIV-1 medicines. If you notice any symptoms of infection soon after you start HIV treatment, talk to your doctor right away. The most common side effects of the medicines in TRUVADA when taken with other anti-HIV-1 medicines are diarrhea, dizziness, nausea, headache, In combination with other antiretroviral agents for fatigue, abnormal dreams, sleeping problems, rash, depression, and vomiting. the treatment of HIV-1 infection in adults Additional side effects are kidney problems (including decline or failure of kidney function), inflammation of the pancreas, inflammation of the liver, allergic reaction, shortness of breath, pain, fatty liver, stomach pain, weakness, indigestion, and intestinal gas. High volume of urine and thirst, muscle pain and muscle weakness due to kidney problems have been reported. Skin discoloration (spots and freckles) may also happen with TRUVADA. Discuss all medicines you take with your healthcare provider and be aware: Your healthcare provider may need to follow you more closely or adjust your therapy if you are taking Videx® or Videx® EC (didanosine), Reyataz® (atazanavir sulfate), or Kaletra® (lopinavir/ritonavir) with TRUVADA. Please see Patient Information on next page, including “What is the most important information I should know about TRUVADA?”. You are encouraged to report negative side effects References: 1. Based on data from PHAST retail monthly data; September 2005-October 2008; Wolters Kluwer Health. of prescription drugs to the FDA. TRUVADA, EMTRIVA, and VIREAD are trademarks of Gilead Sciences, Inc. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088. ATRIPLA is a trademark of Bristol-Myers Squibb & Gilead Sciences, LLC. © 2009 Gilead Sciences, Inc. All other trademarks are the property of their respective owners. All rights reserved. PT0539 02/09 prescribed HIV med by doctors 1 to change the hopes and dreams I have now.
Individual results may vary.
With once a day TRUVADA for my HIV, I can plan for long-term success.
• Proven over the long term to reduce viral load to undetectable (<400 copies/mL) and increase CD4 cell count in 3 years of a clinical study
• Established long-term safety and tolerability
TRUVADA does not cure HIV-1 infection or prevent passing HIV-1 to others.
Ask your doctor about TRUVADA and go to www.TRUVADA.com. Think long term.* Starting now. * Through 3 years of a clinical study. Patient Information • Do not take TRUVADA (emtricitabine/tenofovir disoproxil fumarate) to treat your TRUVADA® (tru-VAH-dah) tablets HIV infection if you are also taking HEPSERA® (adefovir dipivoxil) to treat your Generic name: emtricitabine and tenofovir disoproxil fumarate HBV infection. (em tri SIT uh bean and te NOE’ fo veer What should I tell my healthcare provider before taking TRUVADA? dye soe PROX il FYOU mar ate) Tell your healthcare provider if you: Read the Patient Information that comes with TRUVADA before you start taking it and each • are pregnant or planning to become pregnant. We do not know if TRUVADA can time you get a refill. There may be new information. This information does not take the harm your unborn child. You and your healthcare provider will need to decide if place of talking to your healthcare provider about your medical condition or treatment. You TRUVADA is right for you. If you use TRUVADA while you are pregnant, talk to your should stay under a healthcare provider’s care when taking TRUVADA. Do not change or healthcare provider about how you can be on the TRUVADA Antiviral Pregnancy stop your medicine without first talking with your healthcare provider. Talk to your Registry. healthcare provider or pharmacist if you have any questions about TRUVADA. • are breast-feeding. You should not breast feed if you are HIV-positive because of What is the most important information I should know about TRUVADA? the chance of passing the HIV virus to your baby. Also, it is not known if TRUVADA • Some people who have taken medicine like TRUVADA (nucleoside analogs) have can pass into your breast milk and if it can harm your baby. If you are a woman who developed a serious condition called lactic acidosis (build up of an acid in the has or will have a baby, talk with your healthcare provider about the best way to feed blood). Lactic acidosis can be a medical emergency and may need to be treated in the your baby. hospital. Call your healthcare provider right away if you get the following signs or • have kidney problems or are undergoing kidney dialysis treatment. symptoms of lactic acidosis. • have bone problems. • You feel very weak or tired. • have liver problems including Hepatitis B Virus infection. • You have unusual (not normal) muscle pain. Tell your healthcare provider about all the medicines you take, including prescription • You have trouble breathing. and non-prescription medicines, vitamins, and herbal supplements. Especially tell your • You have stomach pain with nausea and vomiting. healthcare provider if you take: • You feel cold, especially in your arms and legs. • Videx, Videx EC (didanosine). Tenofovir DF (a component of TRUVADA) may increase • You feel dizzy or lightheaded. the amount of Videx in your blood. You may need to be followed more carefully if • You have a fast or irregular heartbeat. you are taking TRUVADA and Videx together. Also, the dose of didanosine may need • Some people who have taken medicines like TRUVADA have developed serious to be reduced. liver problems called hepatotoxicity, with liver enlargement (hepatomegaly) and fat • Reyataz (atazanavir sulfate) or Kaletra (lopinavir/ritonavir). These medicines may in the liver (steatosis). Call your healthcare provider right away if you get the increase the amount of tenofovir DF (a component of TRUVADA) in your blood, which following signs or symptoms of liver problems. could result in more side effects. You may need to be followed more carefully if you • Your skin or the white part of your eyes turns yellow (jaundice). are taking TRUVADA and Reyataz or Kaletra together. TRUVADA may decrease the • Your urine turns dark. amount of Reyataz in your blood. If you are taking TRUVADA and Reyataz together, you should also be taking Norvir (ritonavir). • Your bowel movements (stools) turn light in color. Keep a complete list of all the medicines that you take. Make a new list when medicines • You don’t feel like eating food for several days or longer. are added or stopped. Give copies of this list to all of your healthcare providers and • You feel sick to your stomach (nausea). pharmacist every time you visit your healthcare provider or fill a prescription. • You have lower stomach area (abdominal) pain. How should I take TRUVADA? • You may be more likely to get lactic acidosis or liver problems if you are female, • Take TRUVADA exactly as your healthcare provider prescribed it. Follow the directions very overweight (obese), or have been taking nucleoside analog medicines, like from your healthcare provider, exactly as written on the label. TRUVADA, for a long time. • The usual dose of TRUVADA is 1 tablet once a day. TRUVADA is always used • If you are also infected with the Hepatitis B Virus (HBV), you need close medical with other anti-HIV-1 medicines. If you have kidney problems, you may need to take follow-up for several months after stopping treatment with TRUVADA. Follow-up TRUVADA less often. includes medical exams and blood tests to check for HBV that could be getting worse. • TRUVADA may be taken with or without a meal. Food does not affect how TRUVADA Patients with Hepatitis B Virus infection, who take TRUVADA and then stop it, may works. Take TRUVADA at the same time each day. get “flare-ups” of their hepatitis. A “flare-up” is when the disease suddenly returns in a worse way than before. • If you forget to take TRUVADA, take it as soon as you remember that day. Do not take more than 1 dose of TRUVADA in a day. Do not take 2 doses at the same time. Call What is TRUVADA? your healthcare provider or pharmacist if you are not sure what to do. It is important TRUVADA is a type of medicine called an HIV-1 (human immunodeficiency virus) nucle- that you do not miss any doses of TRUVADA or your anti-HIV-1 medicines. oside analog reverse transcriptase inhibitor (NRTI). TRUVADA contains 2 medicines, ® ® • When your TRUVADA supply starts to run low, get more from your healthcare provider EMTRIVA (emtricitabine) and VIREAD (tenofovir disoproxil fumarate, or tenofovir DF) or pharmacy. This is very important because the amount of virus in your blood may combined in one pill. TRUVADA is always used with other anti-HIV-1 medicines to treat increase if the medicine is stopped for even a short time. The virus may develop resist- people with HIV-1 infection. TRUVADA is for adults age 18 and older. TRUVADA has not ance to TRUVADA and become harder to treat. been studied in children under age 18 or adults over age 65. + • Do not change your dose or stop taking TRUVADA without first talking with your HIV infection destroys CD4 T cells, which are important to the immune system. The healthcare provider. Stay under a healthcare provider’s care when taking TRUVADA. immune system helps fight infection. After a large number of T cells are destroyed, acquired immune deficiency syndrome (AIDS) develops. • If you take too much TRUVADA, call your local poison control center or emergency room right away. TRUVADA helps block HIV-1 reverse transcriptase, a chemical in your body (enzyme) that is needed for HIV-1 to multiply. TRUVADA lowers the amount of HIV-1 in the blood (viral What should I avoid while taking TRUVADA? load). TRUVADA may also help to increase the number of T cells (CD4+ cells). Lowering • Do not breast-feed. See “What should I tell my healthcare provider before taking the amount of HIV-1 in the blood lowers the chance of death or infections that happen TRUVADA?” when your immune system is weak (opportunistic infections). • Avoid doing things that can spread HIV infection since TRUVADA does not stop you TRUVADA does not cure HIV-1 infection or AIDS. The long-term effects of TRUVADA are from passing the HIV infection to others. not known at this time. People taking TRUVADA may still get opportunistic infections or • Do not share needles or other injection equipment. other conditions that happen with HIV-1 infection. Opportunistic infections are • Do not share personal items that can have blood or body fluids on them, like infections that develop because the immune system is weak. Some of these conditions toothbrushes or razor blades. are pneumonia, herpes virus infections, and Mycobacterium avium complex (MAC) infec- tion. It is very important that you see your healthcare provider regularly while taking • Do not have any kind of sex without protection. Always practice safer sex by using TRUVADA. a latex or polyurethane condom or other barrier to reduce the chance of sexual contact with semen, vaginal secretions, or blood. TRUVADA does not lower your chance of passing HIV-1 to other people through • ATRIPLA (efavirenz 600 mg/emtricitabine 200 mg/tenofovir disoproxil fumarate sexual contact, sharing needles, or being exposed to your blood. For your health 300 mg), Combivir (lamivudine/zidovudine), EMTRIVA (emtricitabine), Epivir or and the health of others, it is important to always practice safer sex by using a latex or Epivir-HBV (lamivudine), Epzicom (abacavir sulfate/lamivudine), Trizivir (abacavir polyurethane condom or other barrier to lower the chance of sexual contact with semen, sulfate/lamivudine/zidovudine), or VIREAD (tenofovir disoproxil fumarate). vaginal secretions, or blood. Never use or share dirty needles. TRUVADA should not be used with these medicines. Who should not take TRUVADA? • TRUVADA should not be used with HEPSERA. • Do not take TRUVADA if you are allergic to TRUVADA or any of its ingredients. The active ingredients of TRUVADA are emtricitabine and tenofovir DF. See the end of this What are the possible side effects of TRUVADA? leaflet for a complete list of ingredients. TRUVADA may cause the following serious side effects (see “What is the most • Do not take TRUVADA if you are already taking ATRIPLA® (efavirenz 600 mg/ important information I should know about TRUVADA?”): emtricitabine 200 mg/tenofovir disoproxil fumarate 300 mg), Combivir (lamivudine/ • Lactic acidosis (buildup of an acid in the blood). Lactic acidosis can be a medical zidovudine), EMTRIVA, Epivir or Epivir-HBV (lamivudine), Epzicom (abacavir sulfate/ emergency and may need to be treated in the hospital. Call your doctor right away if lamivudine), Trizivir (abacavir sulfate/lamivudine/zidovudine), or VIREAD because you get signs of lactic acidosis. (See “What is the most important information I these medicines contain the same or similar active ingredients. should know about TRUVADA?”) • Serious liver problems (hepatotoxicity), with liver enlargement (hepatomegaly) pain, and softening of the bone (which may contribute to fractures) as a consequence of and fat in the liver (steatosis). Call your healthcare provider right away if you get kidney problems have been reported. Skin discoloration (small spots or freckles) may also any signs of liver problems. (See “What is the most important information I should happen with TRUVADA (emtricitabine/tenofovir disoproxil fumarate). know about TRUVADA?”) These are not all the side effects of TRUVADA. If you have questions about side effects, • “Flare-ups” of Hepatitis B Virus infection, in which the disease suddenly returns ask your healthcare provider. Report any new or continuing symptoms to your healthcare in a worse way than before, can occur if you stop taking TRUVADA (emtricitabine/ provider right away. Your healthcare provider may be able to help you manage these side tenofovir disoproxil fumarate). Your healthcare provider will monitor your condition for effects. several months after stopping TRUVADA if you have both HIV-1 and HBV infection. How do I store TRUVADA? TRUVADA is not approved for the treatment of Hepatitis B Virus infection. If you have advanced liver disease and stop treatment with TRUVADA, the “flare-up” of hepatitis • Keep TRUVADA and all other medicines out of reach of children. B may cause your liver function to decline. • Store TRUVADA at room temperature 77 °F (25 °C). • Kidney problems. If you have had kidney problems in the past or take other medicines • Keep TRUVADA in its original container and keep the container tightly closed. that can cause kidney problems, your healthcare provider should do regular blood • Do not keep medicine that is out of date or that you no longer need. If you throw any tests to check your kidneys. medicines away make sure that children will not find them. • Changes in bone mineral density (thinning bones). Laboratory tests show changes General information about TRUVADA: in the bones of patients treated with VIREAD (tenofovir disoproxil fumarate), a com- ponent of TRUVADA. If you have had bone problems in the past, your healthcare Medicines are sometimes prescribed for conditions that are not mentioned in patient provider may need to do tests to check your bone mineral density or may prescribe information leaflets. Do not use TRUVADA for a condition for which it was not medicines to help your bone mineral density. Additionally, bone pain and softening of prescribed. Do not give TRUVADA to other people, even if they have the same symptoms the bone (which may contribute to fractures) may occur as a consequence of kidney you have. It may harm them. problems. This leaflet summarizes the most important information about TRUVADA. If you would Other side effects with TRUVADA when used with other anti-HIV-1 medicines include: like more information, talk with your healthcare provider. You can ask your healthcare provider or pharmacist for information about TRUVADA that is written for health • Changes in body fat have been seen in some patients taking TRUVADA and other professionals. For more information, you may also call 1-800-GILEAD-5 or access the anti-HIV-1 medicines. These changes may include increased amount of fat in the upper TRUVADA website at www.TRUVADA.com. back and neck (“buffalo hump”), breast, and around the main part of your body (trunk). Loss of fat from the legs, arms and face may also happen. The cause and long Do not use TRUVADA if seal over bottle opening is broken or missing. term health effect of these conditions are not known at this time. What are the ingredients of TRUVADA? • In some patients with advanced HIV infection (AIDS), signs and symptoms of inflam- Active Ingredients: emtricitabine and tenofovir disoproxil fumarate mation from previous infections may occur soon after anti-HIV treatment is started. It Inactive Ingredients: Croscarmellose sodium, lactose monohydrate, magnesium is believed that these symptoms are due to an improvement in the body’s immune stearate, microcrystalline cellulose, and pregelatinized starch (gluten free). The tablets response, enabling the body to fight infections that may have been present with are coated with Opadry II Blue Y-30-10701 containing FD&C Blue #2 aluminum lake, no obvious symptoms. If you notice any symptoms of infection, please inform your hydroxypropyl methylcellulose 2910, lactose monohydrate, titanium dioxide, and doctor immediately. triacetin. The most common side effects of EMTRIVA (emtricitabine) or VIREAD when used with Rx Only other anti-HIV-1 medicines are: diarrhea, dizziness, nausea, headache, fatigue, abnormal dreams, sleeping problems, rash, depression, and vomiting. Additional side effects are November 2008 lactic acidosis, kidney problems (including decline or failure of kidney function), inflam- TRUVADA, EMTRIVA, HEPSERA and VIREAD are registered trademarks of Gilead mation of the pancreas, inflammation of the liver, allergic reaction, shortness of breath, Sciences, Inc. ATRIPLA is a trademark of Bristol-Myers Squibb & Gilead Sciences, LLC. pain, fatty liver, stomach pain, weakness, indigestion, intestinal gas, and high volume of All other trademarks referenced herein are the property of their respective owners. urine and thirst caused by kidney problems. Muscle pain and muscle weakness, bone 21-752-GS-022 041108
Exercise? Yoga?
Do You Use Alternative Remedies To Help Treat Your HIV?
Positively Aware and the CAEAR Foundation want to understand if, and how, people with HIV are using complementary and alternative medicine (CAM) to replace, support, or enhance their HIV therapy and well-being.
Please participate in a short, online survey by visiting tpan.com 5537 North Broadway Chicago, IL 60640
phone: (773) 989–9400 fax: (773) 989–9494 e-mail: [email protected] www.tpan.com
Editor Jeff Berry Associate Editor Enid Vázquez Editorial Assistant Sue Saltmarsh Proofreaders Scott Grannan Gregory Tate Contributing Writers Daniel S. Berger, M.D., Keith R. Green Liz Highleyman, Sal Iacopelli, Laura Jones, Jim Pickett, Matt Sharp Medical Advisory Board Daniel S. Berger, M.D., Gary Bucher, M.D., Michael Cristafano, P.A., Swarup Mehta, Pharm.D. Art Direction Russell McGonagle Advertising Inquiries [email protected] Distribution Joe Fierke TPAN empowers people [email protected]
© 2009. Positively Aware (ISSN: 1523-2883) is published bi-monthly by living with HIV through Test Positive Aware Network (TPAN), 5537 N. Broadway, Chicago, IL 60640. Positively Aware is a registered trademark of TPAN. All rights reserved. peer-led programming, Circulation: 85,000. For reprint permission, contact Sue Saltmarsh. Six issues mailed bulkrate for $30 donation; mailed free to TPAN members or those unable to contribute. support services, information TPAN is an Illinois not-for-profit corporation, providing information and support to anyone concerned with HIV and AIDS issues. A person’s HIV status dissemination, and advocacy. should not be assumed based on his or her article or photograph in Positively Aware, membership in TPAN, or contributions to this journal. We encourage contribution of articles covering medical or personal aspects of HIV/AIDS. We reserve the right to edit or decline submitted articles. When We also provide services to published, the articles become the property of TPAN and its assigns. You may use your actual name or a pseudonym for publication, but please include your the broader community to name and phone number. Opinions expressed in Positively Aware are not necessarily those of staff or membership or TPAN, its supporters and sponsors, or distributing agencies. increase HIV knowledge and Information, resources, and advertising in Positively Aware do not constitute endorsement or recommendation of any medical treatment or product. sensitivity, and to reduce the TPAN recommends that all medical treatments or products be discussed thoroughly and frankly with a licensed and fully HIV-informed medical practi- tioner, preferably a personal physician. risk of infection. Although Positively Aware takes great care to ensure the accuracy of all the information that it presents, Positively Aware staff and volunteers, TPAN, or the institutions and personnel who provide us with information cannot be held responsible for any damages, direct or consequential, that arise from use of this material or due to errors contained herein.
6 Positively Aware PA • September / October 2009 • tpan.com • positivelyaware.com TTableable ooff CContentsontents
September / October 2009 Volume 20 Number 5
Departments Articles continued 8 Readers Forum 14 22 OIs and Co-infections and STIs—Oh, My! 11 Editor’s Note Staying healthy with HIV The Journey by Enid Vázquez 12 News Briefs 24 What’s for Breakfast (and Lunch and Dinner)? by Enid Vázquez HIV and what you eat, drink, and take 44 Ask the HIV Specialist by Sue Saltmarsh by Dennis Myers, MSN, FNP, 17 AAHIVS 27 Queaze, Sneeze, Yawn, and Runs A little laundry list of possible side eff ects 45 Wholistic Picture by Enid Vázquez What’s Next? by Sue Saltmarsh 28 Exercise: The Best Therapy for Managing Side Eff ects 46 Salient Ramblings by Michael Mooney and Nelson Vergel It’s the End of the World as We 24 Know it (and I Feel Fine) 31 Clinical Courtship or Medical Matrimony by Sal Iacopelli Finding the doctor who’s your ideal partner in care 47 PA Online by Ray Mobley 33 The Financial Fallout of HIV: Update from Articles the Trenches 28 by Per Larson 14 Design for Living 37 HIV Stigma and Disclosure Jack Mackenroth takes his Can social support help? message of hope on the road, battling stigma along the way by Zoltan Nabilek by Jeff Berry 39 A Glossary of HIV Terms 17 HIV and Your Immune Originally written and compiled by Enid Vázquez System 33 42 Resources How they work and why it’s Compiled by Enid Vázquez important by Joseph S. Cervia, M.D., FACP, FAAP, FIDSA, AAHIVS On the cover: Fashion Designer Jack Mackenroth; see page 14. Photography by Frank Louis, www.franklouis.com.
A model, photographer, or author’s HIV status should not be assumed based on Distribution of Positively Aware is supported their appearance in Positively Aware. in part through an unrestricted grant from You can view these (and other stories from previous issues) online at GlaxoSmithKline www.tpan.com and www.positivelyaware.com Photo © RussellPhoto McGonagle PA • September / October 2009 • tpan.com • positivelyaware.com Positively Aware 7 RReaderseaders ForumForum
Correction Dear Jeff, Dear PA, In the July/August issue, Joyce Turner I saw the printed letter from my patient, First things fi rst—great issue address- Keller was incorrectly listed as being on the Patricia, in the July/August issue of Posi- ing women and HIV, especially the article Board of National Minority AIDS Council tively Aware. It was truly moving to see her “Protect Yourselves, Ladies.” Th umbs up for (NMAC). She is, however, on the Board of words in print. She is a remarkable woman all your eff orts! I always learn something. AAA+ and a member of NMAC, NAPWA, who really seems to have made the mental In the Readers Forum, a young lady NAACP, and Women of the NAACP. strides necessary to overcome her addiction. wrote a personal story of her experienc- She is correct that getting arrested probably es, “Th anks to Dr. Z.” Patricia Douglass, Compliments saved her life. She and I have exchanged thanks for your honesty. Not many people I phoned earlier today to try and get many letters since she left Cook County Jail, will share everything you did. You said some back copies of your Transgender and and I am perpetually impressed by how you need help handling “coming out.” My HIV issue for an upcoming symposium intelligent, caring, and genuine she is. She advice is to do only what you’re comfort- we’re having here in Newark. I mistakenly will be coming home very soon and I know able with. I’m involved as a peer educator got Jeff Berry on the line. He was extremely she will eventually grow into a leader who in the PACE (Prisoners AIDS Counseling helpful and took all of my info down and we will help many others. and Education) Program here and I know it had a very nice little chat. What a nice guy! Th ank you so much for printing her can be a big deal in prison. Regarding your I later got a call from “Joe the Distributor” letter. We sometimes forget our incarcer- fears of getting out of prison, remember the who was just as friendly and took care of all ated people living with HIV are real people, hard work you’ve done, stay focused, fi nd of my requests. many of whom actually want to live bet- programs and support groups. Good luck! I just want to say you folks are fabu- ter lives and just need a nudge in the right lous, and to thank you for being in exis- direction. Sincerely, tence. Th ere really are people out here who William Lopez appreciate all of your hard work, and I just Warmest regards, Mid-State Correctional Facility felt like you should hear that every once in Chad Zawitz, M.D. New York e a while. So there! Th anks, and keep up the good work. Peace.
Sincerely, Gary Paul Wright Executive Director Positively Aware Welcomes New Columnist African American Offi ce of Gay Concerns Starting with this issue, Positively Aware, will contain “Salient Ramblings,” a column by Sal Iacopelli, longtime HIV-positive actor, author, and AIDS agencies veteran. Some may be familiar with his Positively Aware will treat all book Love, Sal, a collection of letters about his real-life experiences as communications (letters, faxes, e-mail, a self-professed “bitchy bottom” while living in San Francisco in the etc.) as letters to the editor unless 90s. Th ough he may be older and wiser, perhaps a bit less bitchy, his otherwise instructed. We reserve the wit and humor remain intact, as evidenced by his fi rst column relating right to edit for length, style, or clarity. his story of being diagnosed HIV-positive. “Salient Ramblings” joins Please advise if we can use your name “What’s Goin’On,” “Th e Wholistic Picture,” and “Get Sharp” in PA’s and city. repertoire of columns that off er opinion, humor, human interest, and Write to: Positively Aware, socially conscious commentary. 5537 North Broadway Chicago, IL 60640 Fax: (773) 989–9494 E-mail: [email protected]
8 Positively Aware PA • September / October 2009 • tpan.com • positivelyaware.com S:7 in
Presenting ISENTRESS. A different way to treat HIV when used as part of HIV combination therapy.
The first drug in a class of HIV medications called integrase inhibitors. Based upon studies of up to 48-weeks: ISENTRESS when taken in combination with other anti-HIV medications may reduce viral load to undetectable (less than 400 copies/mL, or less than 50 copies/mL)a and may increase CD4 (T) cell counts. ISENTRESS may not have these effects in all patients. (adepending upon the test used) Talk to your doctor about ISENTRESS. Visit isentress.com for more information. Need help paying for ISENTRESS? Call the patient SUPPORT™ program at 1-800-850-3430. INDICATIONS ISENTRESS is an anti-HIV medicine that helps control HIV People taking ISENTRESS may still develop infections, S:9.5 in infection. ISENTRESS is used along with other anti-HIV including opportunistic infections or other conditions that medicines in patients who are already taking or have taken occur with HIV infection. anti-HIV medicines that are not controlling their HIV infection, Tell your doctor about all of your medical conditions, such as patients with HIV resistant to more than one type of including if you have any allergies, are pregnant or plan anti-HIV medication. to become pregnant, or are breast-feeding or plan to The safety and effectiveness of ISENTRESS have not been breast-feed. ISENTRESS is not recommended for use established for the treatment of HIV infection in adult patients during pregnancy. Women with HIV should not breast-feed who have never taken HIV medications before or in patients because their babies could be infected with HIV through under 16 years of age. their breast milk. The use of other medications active against HIV in Tell your doctor about all the medicines you take, including combination with ISENTRESS may increase the likelihood prescription medicines such as rifampin (a medicine used of your overall response to treatment. Your doctor will work to treat some infections such as tuberculosis), non- with you to find the right combination of HIV medications. prescription medicines, vitamins, and herbal supplements. It is important that you remain under your doctor’s care. You are encouraged to report negative side effects of ISENTRESS will NOT cure HIV infection or reduce your prescription drugs to the FDA. Visit www.fda.gov/medwatch, chance of passing HIV to others through sexual contact, or call 1-800-FDA-1088. sharing needles, or being exposed to your blood. For additional information about ISENTRESS, please read ISENTRESS must be used with other anti-HIV medicines. the information on the following page. IMPORTANT RISK INFORMATION Immune reconstitution syndrome can happen in some patients with advanced HIV infection (AIDS) when anti- HIV treatment is started. Signs and symptoms of inflammation from opportunistic infections may occur as the medicines work to control the HIV infection and strengthen the immune system. Call your doctor right away if you notice any signs or symptoms of an infection after starting ISENTRESS. Contact your doctor promptly if you experience unexplained muscle pain, tenderness, or weakness while taking ISENTRESS. When ISENTRESS has been given with other anti-HIV drugs, the most common side effects included nausea, headache, ISENTRESS is a registered trademark of Merck & Co., Inc. tiredness, and weakness. Copyright © 2009 Merck & Co., Inc. All rights reserved. 20950006(8)(103)-ISN-CON S:7 in
Patient Information ISENTRESS® (eye sen tris) (raltegravir) Tablets
Read the patient information that comes with ISENTRESS1 before you start taking IMPORTANT: Take ISENTRESS exactly as your doctor prescribed and at the it and each time you get a refill. There may be new information. This leaflet is a right times of day because if you don’t: summary of the information for patients. Your doctor or pharmacist can give you s 4HE AMOUNT OF VIRUS ()6 IN YOUR BLOOD MAY INCREASE IF THE MEDICINE IS additional information. This leaflet does not take the place of talking with your stopped for even a short period of time. doctor about your medical condition or your treatment. s 4HE VIRUS MAY DEVELOP RESISTANCE TO )3%.42%33 AND BECOME HARDER TO TREAT What is ISENTRESS? s 9OUR MEDICINES MAY STOP WORKING TO FIGHT ()6 s ISENTRESS is an anti-HIV (antiretroviral) medicine that helps to control HIV s 4HE ACTIVITY OF )3%.42%33 MAY BE REDUCED DUE TO RESISTANCE infection. The term HIV stands for Human Immunodeficiency Virus. It is the If you fail to take ISENTRESS the way you should, here’s what to do: virus that causes AIDS (Acquired Immune Deficiency Syndrome). s )F YOU MISS A DOSE TAKE IT AS SOON AS YOU REMEMBER )F YOU DO NOT REMEMBER ISENTRESS is used along with other anti-HIV medicines in patients who UNTIL IT IS TIME FOR YOUR NEXT DOSE SKIP THE MISSED DOSE AND GO BACK TO YOUR are already taking or have taken anti-HIV medicines and the medicines are regular schedule. Do NOT take two tablets of ISENTRESS at the same time. not controlling their HIV infection. ISENTRESS will NOT cure HIV infection. )N OTHER WORDS DO ./4 TAKE A DOUBLE DOSE s 0EOPLE TAKING )3%.42%33 MAY STILL DEVELOP INFECTIONS INCLUDING OPPORTUNISTIC s )F YOU TAKE TOO MUCH )3%.42%33 CALL YOUR DOCTOR OR LOCAL 0OISON #ONTROL infections or other conditions that happen with HIV infection. Center. s 3TAY UNDER THE CARE OF YOUR DOCTOR DURING TREATMENT WITH )3%.42%33 Be sure to keep a supply of your anti-HIV medicines. s 4HE SAFETY AND EFFECTIVENESS OF )3%.42%33 IN CHILDREN LESS THAN YEARS OF s 7HEN YOUR )3%.42%33 SUPPLY STARTS TO RUN LOW GET MORE FROM YOUR DOCTOR OR age has not been studied. pharmacy. ISENTRESS must be used with other anti-HIV medicines. s $O NOT WAIT UNTIL YOUR MEDICINE RUNS OUT TO GET MORE How does ISENTRESS work? What are the possible side effects of ISENTRESS? s )3%.42%33 BLOCKS AN ENZYME WHICH THE VIRUS ()6 NEEDS IN ORDER TO MAKE When ISENTRESS has been given with other anti-HIV drugs, the most MORE VIRUS 4HE ENZYME THAT )3%.42%33 BLOCKS IS CALLED ()6 INTEGRASE common side effects included: s 7HEN USED WITH OTHER ANTI ()6 MEDICINES )3%.42%33 MAY DO TWO THINGS s NAUSEA 1. It may reduce the amount of HIV in your blood. This is called your “viral s HEADACHE load”. s TIREDNESS 2. It may also increase the number of white blood cells called CD4 (T) cells s WEAKNESS that help fight off other infections. s )3%.42%33 MAY NOT HAVE THESE EFFECTS IN ALL PATIENTS Other side effects INCLUDE RASH SEVERE SKIN REACTIONS DEPRESSION SUICIDAL thoughts and actions. Does ISENTRESS lower the chance of passing HIV to other people? No. ISENTRESS does not reduce the chance of passing HIV to others through sexual A condition called Immune Reconstitution Syndrome can happen in some CONTACT SHARING NEEDLES OR BEING EXPOSED TO YOUR BLOOD patients with advanced HIV infection (AIDS) when combination antiretroviral s #ONTINUE TO PRACTICE SAFER SEX treatment is started. Signs and symptoms of inflammation from opportunistic s 5SE LATEX OR POLYURETHANE CONDOMS OR OTHER BARRIER METHODS TO LOWER THE infections that a person has or had may occur as the medicines work to control chance of sexual contact with any body fluids. This includes semen from a the HIV infection and strengthen the immune system. Call your doctor right MAN VAGINAL SECRETIONS FROM A WOMAN OR BLOOD away if you notice any signs or symptoms of an infection after starting s .EVER RE USE OR SHARE NEEDLES ISENTRESS with other anti-HIV medicines. Ask your doctor if you have any questions about safer sex or how to prevent #ONTACT YOUR DOCTOR PROMPTLY IF YOU EXPERIENCE UNEXPLAINED MUSCLE PAIN passing HIV to other people. TENDERNESS OR WEAKNESS WHILE TAKING )3%.42%33 What should I tell my doctor before and during treatment with ISENTRESS? Tell your doctor if you have any side effect that bothers you or that does not go Tell your doctor about all of your medical conditions. Include any of the following away. THAT APPLIES TO YOU s 9OU HAVE ANY ALLERGIES 4HESE ARE NOT ALL THE SIDE EFFECTS OF )3%.42%33 &OR MORE INFORMATION ASK YOUR doctor or pharmacist. s 9OU ARE PREGNANT OR PLAN TO BECOME PREGNANT - ISENTRESS is not recommended for use during pregnancy. ISENTRESS How should I store ISENTRESS? has not been studied in pregnant women. If you take ISENTRESS while s 3TORE )3%.42%33 AT ROOM TEMPERATURE TO ª& YOU ARE PREGNANT TALK TO YOUR DOCTOR ABOUT HOW YOU CAN BE INCLUDED IN THE s Keep ISENTRESS and all medicines out of the reach of children. !NTIRETROVIRAL 0REGNANCY 2EGISTRY General information about the use of ISENTRESS s 9OU ARE BREAST FEEDING OR PLAN TO BREAST FEED - It is recommended that HIV-infected women should not breast-feed their Medicines are sometimes prescribed for conditions that are not mentioned in infants. This is because their babies could be infected with HIV through patient information leaflets. their breast milk. s $O NOT USE )3%.42%33 FOR A CONDITION FOR WHICH IT WAS NOT PRESCRIBED - Talk with your doctor about the best way to feed your baby. s $O NOT GIVE )3%.42%33 TO OTHER PEOPLE EVEN IF THEY HAVE THE SAME SYMPTOMS Tell your doctor about all the medicines you take. Include the following: you have. It may harm them. s PRESCRIPTION MEDICINES INCLUDING RIFAMPIN A MEDICINE USED TO TREAT SOME This leaflet gives you the most important information about ISENTRESS. infections such as tuberculosis) s )F YOU WOULD LIKE TO KNOW MORE TALK WITH YOUR DOCTOR s NON PRESCRIPTION MEDICINES s 9OU CAN ASK YOUR DOCTOR OR PHARMACIST FOR ADDITIONAL INFORMATION ABOUT s VITAMINS ISENTRESS that is written for health professionals. s HERBAL SUPPLEMENTS s &OR MORE INFORMATION GO TO WWW)3%.42%33COM OR CALL Know the medicines you take. What are the ingredients in ISENTRESS? s +EEP A LIST OF YOUR MEDICINES 3HOW THE LIST TO YOUR DOCTOR AND PHARMACIST Active ingredient: %ACH FILM COATED TABLET CONTAINS MG OF RALTEGRAVIR when you get a new medicine. Inactive ingredients: -ICROCRYSTALLINE CELLULOSE LACTOSE MONOHYDRATE CALCIUM How should I take ISENTRESS? PHOSPHATE DIBASIC ANHYDROUS HYPROMELLOSE POLOXAMER CONTAINS Take ISENTRESS exactly as your doctor has prescribed. The recommended BUTYLATED HYDROXYTOLUENE AS ANTIOXIDANT SODIUM STEARYL FUMARATE MAGNESIUM dose is as follows: STEARATE )N ADDITION THE FILM COATING CONTAINS THE FOLLOWING INACTIVE INGREDIENTS s 4AKE ONLY ONE MG TABLET AT A TIME POLYVINYL ALCOHOL TITANIUM DIOXIDE POLYETHYLENE GLYCOL TALC RED IRON OXIDE s 4AKE IT TWICE A DAY and black iron oxide. s 4AKE IT BY MOUTH -ANUFACTURED AND $ISTRIBUTED BY s 4AKE IT WITH OR WITHOUT FOOD Do not change your dose or stop taking ISENTRESS or your other anti-HIV -%2#+ #/ )NC medicines without first talking with your doctor. 7HITEHOUSE 3TATION .* 53! 2EVISED *ANUARY 1 2EGISTERED TRADEMARK OF -%2#+ #/ )NC #/092)'(4 ¥ -%2#+ #/ )NC All rights reserved 53 0ATENT .OS 53 )3. #/. EEditor’sditor’s NoteNote
The Journey
Dear HIV, n this issue of Positively Aware you’ll read about how the It’s been 20 years since we fi rst met in September of 1989. When I immune system functions, and how the medications work to we fi rst came together, I thought I was going to die! I was so afraid… interrupt the replication process at diff erent points in the virus afraid of what was going to happen to me, my partner, my family. But lifecycle. We’ve also included articles on nutrition, exercise, and the now, here we are, st ill together—for better or worse. fi nancial aspects of HIV, because we all know there is more to living You gave me the incentive to face some things in my past , things with HIV than just learning about the mechanics. that I otherwise might not have dealt with, and for that, I am truly HIV is also about personal stories. In our profi le of Jack Mack- grateful. You forced me to take a long, hard look at myself, my life- enroth on page 14, the Project Runway star talks about his journey st yle, and the choices I’ve made about the food and subst ances I with HIV, and his campaign to help educate others. During the put into my body. And that’s a good thing. I know, I’m not perfect . course of interviewing Jack, I was struck by many of the similarities You, of all viruses, should know that. But then, who is? I decided I in our stories. I too remember the day I tested positive, the doc- wasn’t going to beat myself up about it. Stress just makes you st ronger. tor’s demeanor, how the room looked, looking up at the sky aft er When I made a mist ake, I picked myself up, dust ed myself off , and I left his offi ce. Th inking how my life would never be the same. I moved on. also realized that there are probably thousands of stories just like Once I realized that you weren’t going anywhere, I knew we had ours, stories fi lled with anger, despair, fear, hopelessness…as well as to make this work. Don’t get me wrong, it hasn’t always been easy. stories of hope, encouragement, inspiration, and about fi nding the It’s been a rocky relationship right from the st art. I had a hell of a strength and the courage to overcome the challenges we all must time fi nding the right meds to get you under control. In fact , it took learn to face while coming to terms with our own mortality. me years of hard work, and a lot of trial and error. I was one of the And fi nally, speaking of mortality, alas, all good things must lucky ones who made it—many of my friends didn’t. I miss them. But come to an end. Our dear Jim Pickett, author of the popular Pick- I had a good doct or who helped me to make informed decisions about ett Fences column, has decided to take a break from writing his my treatment. I learned as much as I could about you, and how the column (gotcha!). But don’t worry, he’s not going anywhere. He’ll medications work, so that I could partner with my doct or and decide still be contributing to Positively Aware magazine, beginning with which treatment was best for me. the November/December issue, in which he’ll give us an update on Every now and then I got depressed, and a lot of times, I got microbicides and recent developments in prevention from the IAS sick from the medications. So I joined a local support group, and conference in Cape Town, South Africa this past July. found help from connect ing with others who were in the same boat. I Until then, don’t forget to laugh, never be afraid to cry, and learned from them that, hey, yeah, it sucks having HIV. But armed above all, try not to take yourself too seriously. Remember to think with the right information, I was able to persevere, make the neces- of the management of HIV as a means, and not an end. It’s the sary adjust ments, and get on with my life. journey, not the destination. You’re as st ubborn as I am, so we might as well get used to the fact we’re both here to st ay. Whether we like it or not, we’re in it for Take care of yourself, and each other. the long haul. Nothing last s forever, but for now, at least , I think we’ve found a way to make it work. So, here’s to another 20 years.
Not all yours, Jeff Berry, Editor JLB [email protected]
This issue is dedicated to the memory of all those who came before us, those who weren’t able to benefit from the development of treatments that are now more effective, easier to take, and have fewer side effects than some of the first medications that were approved. Photo © RussellPhoto McGonagle PA • September / October 2009 • tpan.com • positivelyaware.com Positively Aware 11 NNewsews BriefsBriefs
by Enid Vázquez
Isentress update Aptivus update In July, the U.S. Food and Drug Administration (FDA) expand- Th e FDA in June updated the Aptivus (tipranavir) drug label. ed the approval of Isentress (raltegravir) to include people using Aptivus is an HIV protease inhibitor medication. It must be taken HIV medications for the fi rst time. Like other HIV drugs approved with a low dose of the HIV drug Norvir (ritonavir). Th e lowest lev- over the past several years, Isentress was approved for use by people els of Aptivus (trough concentration) were 45% higher than normal who were previously on antiviral treatment and whose therapy was in people taking it along with the HIV drug Fuzeon (enfuvirtide). failing. Isentress is the only medication in its drug class, integrase Th is update comes from Phase 3 (advanced) studies. Dose adjust- inhibitors, currently on the market and is extremely popular for ments, however, are not recommended. Calcium channel blockers, its eff ectiveness as well as its low rate of side eff ects. As such, it was which are used for a variety of heart-related conditions (such as already being used for people taking HIV therapy for the fi rst time, angina and high blood pressure), should be used with caution when under off -label use. taking Aptivus/Norvir and patients should be monitored. In addi- New interaction information was also added to the new drug tion, blood levels of Aptivus were decreased 40% when taken with label. Isentress was found to have no signifi cant clinical interac- buprenorphine/naloxone (Suboxone), but dose adjustments are not tions with methadone. recommended. Th e eff ectiveness of Suboxone is not aff ected. In addition, two new side eff ects were added to the label, based on treatment experience aft er Isentress was approved: paranoia and Videx update anxiety. Neither the severity nor the percentage of people experi- In June, the FDA updated the drug label on the HIV medica- encing these eff ects, however, was provided. tion Videx (didanosine) pediatric powder and Videx EC capsules. Th e FDA removed the dose adjustments for adverse events such as Reducing Sustiva side effects pancreatitis and peripheral neuropathy, stating that dose reduc- Spanish researchers found that starting treatment with a tions for Videx other than for weight have not been established. lower dose of the HIV drug Sustiva (efavirenz) and increasing it to Also, two contraindications (drugs not to be taken together) full dose over a period of two weeks helps reduce the number and were added. Videx should not be taken with ribavirin, a drug severity of side eff ects with the drug. Sustiva is very eff ective and used to treat hepatitis C. Th e FDA reported that, “Fatal liver fail- widely prescribed, but is associated with a long list of central ner- ure, as well as peripheral neuropathy, pancreatitis, and symptom- vous system (CNS) or psychiatric side eff ects, including insomnia, atic hyperlactatemia/lactic acidosis have been reported in patients vivid dreams, and thoughts of suicide. Some people experience the receiving both didanosine and ribavirin. Previously, the combina- side eff ects for years, and people with a history of street drug use tion of didanosine and ribavirin was ‘not recommended’ due to may be at greater risk of these symptoms. Using a stepped-up dose serious adverse events including fatal hepatic failure.” in fi rst-time patients has been found to reduce side eff ects of other Videx should also not be taken with allopurinol (brand name medications, including other HIV antivirals. Th e small study was Zyloprim), a medication used to reduce uric acid, excess amounts published in the August 4 issue of Annals of Internal Medicine. of which can lead to gout or kidney stones. In good news, hyperu- Half of the 144 study participants received the stepped-up dose ricemia (excess uric acid) was removed from the list of possible side of 200 mg for six days, then 400 mg for seven days, then the full eff ects, because very few cases of gout were seen. dose of 600 mg (all once a day). Th e other half received the full daily Ganciclovir was not recommended with Videx, but the label dose. Aft er 24 weeks, viral load reductions were the same for both update states that if no suitable alternative to ganciclovir is avail- groups, while side eff ects were reported to be less in the stepped-up able, it may be used with caution and with monitoring for Videx dose group. In the future, this study might infl uence the Sustiva toxicity. When taken with ganciclovir, Videx blood levels increase. dose in people taking it for the fi rst time, but not that of individuals Videx pediatric powder should not be taken with methadone, already on the medication. but if taking the two medications is necessary, the Videx EC for- mulation should be used and there should be close monitoring for Prezista update didanosine eff ectiveness, including viral load. (Note: Adults may In June, the FDA changed the drug label of the HIV pro- use a pediatric formula for various reasons.) Methadone lowers the tease inhibitor Prezista (darunavir) to state that no dosing adjust- blood concentrations of Videx. ment is required when taking it with buprenorphine (Subutex) or Last, a dosing recommendation was added for another HIV buprenorphine/naloxone (Suboxone), but clinical monitoring is drug, Viracept (nelfi navir). Viracept should be taken one hour aft er recommended. Subutex and Suboxone are used for the treatment taking Videx EC. of opioid (such as heroin and morphine) addiction. Photo © RussellPhoto McGonagle 12 Positively Aware PA • September / October 2009 • tpan.com • positivelyaware.com Oral sex and HIV Williams will speak at the New York City event, along with Th e CDC (U.S. Centers for Disease Control and Prevention) Michelle Lopez, a long-time survivor of HIV (visit www.POZ.com in June updated its factsheet on oral sex and HIV. Th e following and www.thebody.com); Dr. Nereida Ferran of the Jacobi Medi- words were added: “numerous studies have demonstrated that oral cal Center; and fi tness expert and inspirational speaker Valerie sex can result in the transmission of HIV and other sexually trans- Wojciechowicz, who has lived with HIV for more than 20 years. mitted diseases (STDs).” For a copy, write to CDC, 1600 Clift on Road, Atlanta, GA 30333, call 1-800-342-AIDS (342-2437), or visit PrEP—will young men take it? And will it be www.cdc.gov. practical? Former Positively Aware associate editor Keith R. Green is now Puerto Rico and HIV heading up a research study called Project PrEPare, developed at Th e June 6 issue of the CDC’s Morbidity and Mortality Weekly Stroger Hospital here in Chicago, which focuses on HIV prevention Report provided a look at HIV on the island of Puerto Rico. Accord- among young men of color. ing to an editorial note accompanying the report, “[Th e] estimates Th e study is part of ongoing eff orts to see if using medication of HIV incidence in Puerto Rico in 2006 reveal important diff er- before sexual encounters can prevent HIV infection. At this point, ences between HIV epidemiology in Puerto Rico and the 50 U.S. however, Project PrEPare isn’t looking at effi cacy, but rather to see states and the District of Columbia. Th e overall HIV incidence rate if the strategy is acceptable to young men who have sex with men in Puerto Rico in 2006 (45.0 per 100,000 population) was twice (YMSM), gay or not, and whether it’s practical. the estimated U.S. rate (22.8) and 1.5 times the estimated rate for A risk reduction program called “Many Men, Many Voices” is Hispanics in the United States (29.4). … Injection drug use contin- part of the study, as well as other strategies to help the young men ues to be the most common mode of HIV transmission in Puerto protect themselves from HIV infection. Compensation will also be Rico, whereas most new HIV infections in the 50 U.S. states and the provided. District of Columbia are attributed to male-to-male sexual contact.” Th e medication being given is Truvada, which has been used See contact information above to obtain a copy. in other studies looking at HIV prevention, mostly because of its effi cacy and low side eff ect profi le. Women’s conference in New York City To fi nd out more or to become a member of the study, call 312- Pharmaceutical company Boehringer-Ingelheim (BI), maker 864-8003 or e-mail [email protected]. Th e study is also tak- of the HIV drugs Viramune (nevirapine) and Aptivus (tipranavir), ing place in Chicago at the CORE Center (call 312-572-4500) and in partnership with Iris House and other community organizations, Howard Brown Health Center (call 773-388-1600). Project PrEPare is holding a free one-day women’s event on HIV in New York City is being conducted through the Adolescent Trials Network for HIV/ on Friday, September 25. “Women Living Positively: It’s My Life, AIDS Intervention (ATN for short). National Women’s Summit” is scheduled from 9 a.m. to 2 p.m. at the Gay Men’s Health Crisis (GMHC) Women’s Institute, 119 West From Positively Aware e-update 24th Street. Breakfast and lunch will be provided. Women interest- ed in attending the summit should call toll-free at 1-877-933-4310, extension 99517, as soon as possible to reserve a seat. Simply leave a New black community initiative—“Greater Than fi rst name, there will be no call-backs for confi rmation. AIDS” BI videotaped one of its previous women’s summits, held in On June 25, the Kaiser Family Foundation, in conjunction Florida. Due to issues of confi dentiality, question-and-answer ses- with the Black AIDS Media Partnership (BAMP), announced the sions and breakout groups were not taped. Th e video can be seen at creation of “Greater Th an AIDS,” a nationwide campaign that seeks www.vodium.com/goto/womenlivingpositive.asp to address HIV/AIDS in the black community. Th e new campaign Th e outstanding speakers shown on the video include Dr. Ana is being produced in collaboration with the CDC’s “Act Against Puga, Director of the Comprehensive Family AIDS Program of the AIDS” initiative. BAMP, a coalition of leading black media compa- Children’s Diagnostic and Treatment Center in Fort Lauderdale; nies, is developing and distributing the various messages that will the Rev. Makeba D’Abreu, Director of the Domestic HIV Programs reach the black community through public service announcements, for Th e Balm in Gilead in Richmond, Virginia, and Andrea Wil- integrated media content, and community outreach. Community liams, who talks about her inadvertent claim to fame when her organizations are invited to join the initiative; visit www.kff .org. brother helped bring about the HBO movie Life Support based on Also visit www.greaterthan.org.—Sue Saltmarsh e her story, starring Queen Latifah. PA • September / October 2009 • tpan.com • positivelyaware.com Positively Aware 13 Design for Jack Mackenroth takes his message of hope on the road, battling stigma along the way
t wasn’t too long ago that many of us were cheering for Jack Mackenroth sat there for a moment, and then got up and left I Mackenroth on the hit reality television series Project Runway. the offi ce. He says he remembers looking up at the sky and think- Today, Mackenroth is reaching an entirely new audience with ing, “Oh, shit.” At the time, he says, he was more worried about his the recently launched campaign, “Living Positive by Design.” Th e family, and how they were going to be able to deal with it, than he campaign, supported by Merck and Co., takes him around the was about himself. “I think people are fairly resilient in coping with country to local AIDS service organizations, as well national and their own mortality,” remarks Mackenroth. local events and fundraisers, to help fi ght stigma and to engage oth- ers in the ongoing conversation about how to live better with HIV. Doctor, doctor But long before Project Runway, or even the campaign itself, Mackenroth met with one of the few HIV specialists at the Mackenroth had to come to terms with his diagnosis and deal with time, and started a regimen of some of the medications that were stigma in his own life, at a time when there weren’t a lot of eff ective then available, which were less eff ective and harder to take, but or tolerable medications available, and HIV was still considered a luckily he tolerated them very well. And perhaps unwittingly, he death sentence. began to lay the foundation for the very campaign that he’s a part “What happened to me is what I see happening to a lot of peo- of today. ple,” says Mackenroth. “I don’t think it’s changed much, other than “I just kept going back every three months and getting my there are many more options than there were in 1990.” He says blood work done,” says Mackenroth. His T-cells stayed intact, and that, in retrospect, he can trace back the point at which he serocon- his viral load, higher at fi rst, slowly got down to undetectable, and verted to when he was still attending the University of California, he was eventually able to move on with his life. But the relationship Berkeley. with his provider proved instrumental in his treatment success, and “I had a whole bunch of ulcers in my throat, and I had no idea the importance of fi nding and working with the right doctor is one what they were—I couldn’t swallow water and I couldn’t eat for of the many messages he carries with him as he speaks to groups three days, and it was excruciatingly painful.” He ended up going to around the country. a gastrointestinal specialist and says, at the time, he still had no sus- “I think the design part—in ‘Living Positive by Design’—comes picions that he might be HIV-positive. When the doctor told him, in not just because I’m a fashion designer, but it’s really about very matter-of-factly, that it was quite unusual for someone his age designing your own health care program, in a sense, and being who was otherwise in good health to have those symptoms—and your own health care advocate—partnering with your doctor in an recommended he undergo an HIV test—Mackenroth was a bit active partnership.” taken aback. Two weeks later, he went back to see the same doctor who then Facing stigma blurted out, “Your test came back positive.” Just as for so many people with HIV who see a clear delinea- “I remember the room,” says Mackenroth, “I remember every- tion in their lives between the time before they became aware of thing about it. It was so surreal and weird, and he said, ‘I’ll leave their HIV status and the point at which they tested positive, for you alone so you can think about it.’ And I thought, ‘What the hell Mackenroth there is a “pre-Project Runway” and a “post-Project does that mean?’” Runway”—at least when it comes to dealing with stigma. Photography © Frank Louis, www.franklouis.com 14 Positively Aware PA • September / October 2009 • tpan.com • positivelyaware.com r Living
by Jeff Berry
“Before, when I would talk about it and I would say to someone that I was HIV-pos- itive, there was always a look of surprise,” explains Mackenroth. “Like, ‘Really? You don’t look like you’re HIV-positive.’ Peo- ple expect there’s a certain way you’re supposed to look or act when you’re HIV-positive, and I’d say, ‘No, HIV looks like me. HIV doesn’t look like anything— it looks like everybody.’” For Mackenroth, his preference when it comes to dating has been to get the whole HIV discus- sion out of the way right from the beginning. “Th e experience of going on a couple of dates—without telling, and then disclosing—and having that person never call again, or being mysteriously busy all the time, or having some excuse for why they don’t want to see you anymore—I just disclose before I even go on the fi rst date.” But he says he also understands that if you’re HIV-negative, putting yourself at potential risk with an HIV-positive person can be a tricky situation, at least for some. “I can’t make those decisions for someone who’s HIV-negative. It’s a tough situ- ation, although I think that the more we combat the stigma, PA • September / October 2009 • tpan.com • positivelyaware.com Positively Aware 15 the more we keep educating, and the more we talk about and nor- Positive thinking malize it, I think it will help people to open their minds to pos- When asked how he maintains his positive outlook, Macken- sibility.” roth thinks that he just naturally is that person, and that it’s a testa- He says that the work he does with the campaign has changed ment to his mom. And while he says it didn’t take him long to come his life in so many ways, but the most amazing thing that’s hap- to terms with being HIV-positive, he talks to a lot of people who are pened is that he feels like he’s part of the HIV community, and just fi nding out they’re HIV-positive, and are depressed. that he’s making a diff er- “When you get into ence in a real, tangible your head too much, that way. Mackenroth receives can be dangerous,” says a number of e-mails every Mackenroth, “especially week from people who are when you have a tendency newly diagnosed, or from to get depressed about people who just want to things.” That’s why, he say thank you, and says says, working on some- that it’s extremely gratify- thing like “Living Positive ing. But he also hears from by Design” has been so those who, especially in great for him. “Pushing dating scenarios, say they people in the right direc- feel tainted, unworthy, or tion to get the informa- unlovable. tion and the health care “It’s really interest- that they need—that’s ing how it’s developed helped me keep a positive this negative connotation, outlook.” when it’s just a disease— One question he gets it should not be a moral asked a lot is whether he judgment.” has any advice for some- Mackenroth feels that one who is newly diag- because HIV stigma is still nosed, or who just found fairly prevalent, there are out that they are positive very few people who are and are having a diffi cult public fi gures (he doesn’t time dealing with their really consider himself a new status. celebrity) who are will- “I always say—have ing to speak openly about that ‘freak-out’ time if being HIV-positive. “A lot you need to, but know that of people reach out to me there are a lot of options and I guess I’ve become a out there, and a lot of role model in that sense, support and information. which is great. Maybe it’s Find a website, like living- my calling, who knows? positivebydesign.com, or I thought I was making Th e Body—just make sure dresses, but maybe this is your sources are clinical. it!” But know that there are a lot of other people out Looking ahead there who are like yourself, Avid fans of Project and that there is a reason Runway will be happy to hear that, at press time, Mackenroth was to have a positive outlook, because there are treatments available. awaiting the verdict on a pilot he recently shot along with fellow Just partner with a doctor and become part of the movement. As Runway alum Kevin Christiana (who he fondly refers to as “the soon as you’re comfortable enough with it to talk about it, hope- lone straight man” who was on Runway). He also just participated fully you can become part of fi ghting the stigma along with the as a swimmer in the Out Games in Copenhagen, and is currently rest of us. designing a bear that looks like Christiana Aguilera, for charity. All “And get your blood work done,” he’s quick to add, “and keep this in addition to the campaign appearances already planned for it undetectable!” e the fall, including a stop at the United States Conference on AIDS in San Francisco this October. Visit www.livingpositivebydesign.com, and www.jackmacken- “So yeah, I’m keeping busy,” laughs Mackenroth, “and it’s all roth.com. good.” Photography © Frank Louis, www.franklouis.com 16 Positively Aware PA • September / October 2009 • tpan.com • positivelyaware.com HIV and Your Immune System How they work and why it’s important
by Joseph S. Cervia, M.D., FACP, FAAP, FIDSA, AAHIVS Why learn about HIV and the the course of the past three decades, it is In order to fully appreciate the impact immune system? important to emphasize that HIV is aft er of HIV upon CD4+ lymphocytes and the Permitting us to survive and thrive in all, simply a virus. Viruses are relatively means by which antiviral medicines can a sea of potentially infectious microbes, our basic, sub-microscopic germs that are com- decrease the negative results of this pro- immune systems are always at work. Labor- posed of genetic material bearing the code cess, it is important to understand precisely ing, for the most part, in relative silence for their replication in the form of deoxy- how the virus attacks and replicates within and obscurity, these systems of defense ribonucleic acid (DNA) or ribonucleic acid infected cells. may become compromised when Human (RNA), along with a number of critical viral Immunodefi ciency Virus (HIV) threatens proteins, generally surrounded by a protec- The HIV lifecycle key CD4+ (T-helper) lymphocytes, integral tive envelope. Because viruses do not have HIV carries out its work of repro- to proper immune function. all of the necessary tools to manufacture duction in a series of steps that, together, Learning a bit about HIV and its life- their own essential proteins, they must comprise the retroviral life cycle. Th ese cycle within infected CD4+ cells can help infect and act as parasites on the cells of a steps include: viral fusion with the cell us to understand how medications used to more complex living organism in order to membrane, reverse transcription, integra- treat infection with this virus work, and reproduce. tion, transcription, translation, and viral how regular quantitative monitoring of the HIV is an RNA virus that specifi cally assembly. virus (i.e., viral load) and immune system targets human cells bearing a molecule Each step off ers opportunities for inter- (i.e., CD4+ lymphocyte count) contribute to known as CD4+ on their surfaces. Unfor- ruption of viral replication by means of mol- successful therapy. tunately, this targeted molecule, CD4+, is ecules that specifi cally block the process at Understanding these facts may also found on cells such as T-helper lympho- that particular stage. Medications used to help to explain why taking antiviral medi- cytes that are critical in orchestrating har- treat HIV, known as antiretroviral therapy cations regularly as directed is so critical to monious immunologic function. (ART), target specifi c stages in this lifecycle. controlling HIV infection and its damaging Because they must transcribe their When ART medications are used in com- eff ects on immunity. genetic code composed of RNA back into bination, they are generally more eff ective DNA copies within infected cells in order to at blocking the HIV lifecycle, sometimes at Retrovirology 101 eff ectively parasitize the host cells’ machin- several distinct steps, while minimizing the Despite the many social, political, and ery for creating protein (synthesis), viruses risk of dose-related side eff ects of any one economic dimensions that the pandemic such as HIV are known as retroviruses. medicine used alone. of HIV infection may have assumed over PA • September / October 2009 • tpan.com • positivelyaware.com Positively Aware 17 formed prior to therapy with a CCR5 recep- Integration tor antagonist in order to assess the likeli- Once a newly formed viral DNA tran- hood that treatment with such medication script has been produced, it must be inte- will be eff ective in a given patient. grated into the DNA of the human host cell nucleus in order to utilize that cell’s ordi- Reverse Transcription nary process for protein synthesis. Th is step Upon viral fusion, HIV RNA and is catalyzed by the viral enzyme known as critical viral proteins, such as the enzyme integrase. ART medications such as ralte- reverse transcriptase, enter the host cell. gravir are integrase inhibitors, and thereby Reverse transcriptase is responsible for cat- interrupt the HIV lifecycle at this stage. alyzing or facilitating the transcription of the viral RNA genetic code into DNA cop- Transcription ies. Th is is critical for viral reproduction Having successfully integrated its DNA since the host cell’s process for protein syn- transcript into the host nuclear DNA, HIV thesis, which the virus must use for its own next has its genetic code (now called pro- replication, begins with DNA (not RNA) in viral DNA) transcribed along with that of the cell nucleus. the host cell. Th e product of this transcrip- Many ART medications work at block- tion event is a new strand of RNA, known ing this step in the viral lifecycle. Among as messenger RNA (mRNA) because it is them are the nucleoside or nucleotide responsible for carrying the genetically analogue reverse transcriptase inhibitors encoded message, a blueprint for the forma- (NRTIs or “nukes”), such as zidovudine, tion of proteins, out of the cell nucleus and Antiviral didanosine, lamivudine, stavudine, aba- into the cytoplasm (the substance between cavir, emtricitabine, and tenofovir, which the cell membrane and its nucleus), where are structurally similar to nucleosides or the remainder of the process of protein syn- medications nucleotides that would ordinarily be incor- thesis occurs. porated into DNA copies by viral reverse transcriptase. Th e presence of these NRTIs Translation target specific instead thwarts the process of reverse tran- Once out in the host cell cytoplasm, scription that is so vital to HIV reproduction. the newly formed mRNA transcripts meet stages in the Other medications that are structurally dif- up with cytoplasmic structures known as ferent from nucleosides or nucleotides but ribosomes. Also composed of RNA, these also work by blocking reverse transcription ribosomes serve as sites where the mRNA- lifecycle. are called non-nucleoside analogue reverse coded message is translated, permitting the transcriptase inhibitors (NNRTIs or “non- appropriate alignment of specifi c amino nukes”). Examples of NNRTIs are efavirenz, acids, which are the fundamental building Fusion nevirapine, and etravirine. blocks of new viral proteins. HIV recognizes and binds to CD4+ Since reverse transcription is such a surface receptors by means of a glycopro- retrovirus-specifi c and critical step in the Viral Assembly tein molecule on its own surface known HIV lifecycle, medications that target this Th e new chains of amino acids thus as gp120. As HIV gp120 binds to CD4+, stage are oft en the backbone of ART combi- formed must fi nally be cut into appropri- other proteins on the surface of the host nation regimens. Some frequently utilized ately sized and structured protein pieces. cell known as CCR5 or CXCR4 may also combinations of NRTIs and NNRTIs have Th is tailoring step, critical for the produc- become activated in completing viral fusion. been co-formulated into combination pills tion of all of the enzymes and other pro- ART medications that interfere with this that may facilitate adherence to therapy by teins needed for the structure and repeated stage in the HIV lifecycle are called fusion limiting the number of pills that an HIV- replication of HIV, is facilitated by the viral inhibitors. An example of one such medica- positive patient takes each day. Examples enzyme called protease. tion is enfuvirtide. include co-formulations of zidovudine Many powerful ART meds contain a Another ART drug, which antagonizes with lamivudine; abacavir with lamivu- class of molecules that block this enzyme. the binding of HIV with CCR5 molecules, dine; zidovudine, abacavir, and lamivudine; Th ese drugs are known as protease inhibi- is known as maraviroc. Since not all HIV tenofovir with emtricitabine; and tenofovir, tors (PIs) and include: atazanavir, daru- viruses utilize CCR5 to the same degree in emtricitabine, and efavirenz. navir, fosamprenavir, indinavir, lopinavir, viral fusion, a special viral blood test called nelfi navir, saquinavir, and tipranavir. a tropism or Trofi le assay is generally per- 18 Positively Aware PA • September / October 2009 • tpan.com • positivelyaware.com HIV glycoprotein
HIV envelope The HIV Life Cycle:
1. Binding and Fusion: HIV begins its life cycle when it binds to a CD4 receptor* and one of two 1 CD4 receptor co-receptors** on the surface of a CD4+ T- lym- phocyte.*** Th e virus then fuses with the host CCR5 receptor cell. Aft er fusion, the virus releases RNA, its -OR- genetic material, into the host cell. CXCR4 receptor 2. Reverse Transcription: An HIV enzyme called reverse transcriptase converts the single- strand- ed HIV RNA to double-stranded HIV DNA. HIV RNA 3. Integration: Th e newly formed HIV DNA enters Human DNA the host cell’s nucleus, where an HIV enzyme HIV DNA called integrase “hides” the HIV DNA within the host cell’s own DNA. Th e integrated HIV DNA is HIV DNA 2 called provirus. Th e provirus may remain inac- Host DNA tive for several years, producing few or no new copies of HIV. 4. Transcription: When the host cell receives a signal to become active, the provirus uses a host 3 enzyme called RNA polymerase to create copies of the HIV genomic material, as well as shorter strands of RNA called messenger RNA (mRNA). Th e mRNA is used as a blueprint to make long 4 chains of HIV proteins. 5. Assembly: An HIV enzyme called protease cuts the long chains of HIV proteins into smaller individual proteins. As the smaller HIV proteins 5 come together with copies of HIV’s RNA genetic material, a new virus particle is assembled. HIV mRNA 6. Budding: Th e newly assembled virus pushes out (“buds”) from the host cell. During budding, the HIV protein chain new virus steals part of the cell’s outer envelope. Th is envelope, which acts as a covering, is stud- 6 HIV proteins ded with protein/sugar combinations called HIV glycoproteins. Th ese HIV glycoproteins are nec- essary for the virus to bind CD4 and co- recep- tors. Th e new copies of HIV can now move on to infect other cells.
Terms Used in This Fact Sheet:
Many times these medications are to recognize that this process *CD4 receptor: A protein present on the outside of combined with another PI called ritonavir, is repeated over ten billion infection- fi ghting white blood cells. CD4 recep- which increases the bioavailability of the times daily in the body of any tors allow HIV to bind to and enter cells. other co-administered PIs in the body by HIV-positive person who is not **Co-receptor: In addition to binding a CD4 recep- inhibiting a key enzyme system in the liver receiving ART. tor, HIV must also bind either a CCR5 or CXCR4 responsible for metabolizing or breaking co-receptor protein to get into a cell. down these PI molecules. Lopinavir is co- Significance of viral ***T-lymphocyte: A type of white blood cell that formulated with ritonavir in a single pill for load detects and fi ghts foreign invaders of the body. this purpose. By means of a very sensitive If viral assembly is completed suc- test called a polymerase chain For more information: Contact your doct or or cessfully, new HIV particles may then bud reaction (PCR), it is possible to an AIDSinfo Health Information Specialist at 1-800- from the surface of the host cell, fl oating off measure how many copies of 448-0440 or http://aidsinfo.nih.gov. into the bloodstream to infect other cells HIV RNA may be found in the and continue this lifecycle. It is important blood of an infected individual. Illustration courtesy of AIDSinfo PA • September / October 2009 • tpan.com • positivelyaware.com Positively Aware 19 viral replication has been controlled to the resistance mutations have emerged, and to extent that the amount of virus present in what extent existing mutations may create the blood is below the lower limit of detec- resistance to available ART agents. tion of the viral load test. Such testing may also help treating Th us, it is important to perform viral clinicians to determine whether a change Medical load testing at baseline (i.e., prior to start- in ART may be helpful in suppressing the ing any new ART) and generally at 4- to HIV lifecycle, and to what extent it might 12-week intervals thereafter, depending be possible to expect favorable viral load knowledge upon response to treatment. For example, suppression with each of the available ART an HIV-positive individual who is feeling medications and combinations. Th is may well, tolerating and adhering to medica- greatly facilitate selection of a new ART about HIV, tions well, and has had consistently unde- regimen if that is necessary in order to tectable viral loads and healthy CD4+ cell establish or reestablish viral load suppres- counts may only require such viral load sion and so reduce the risk of HIV-related ART, and testing every three to six months; whereas, injury to CD4+ cells, which are so pivotal someone who is symptomatic, having diffi - to the proper functioning of the immune the immune culty with tolerating or adhering to ART, or system. has had prior high or increasing viral loads or low CD4+ counts may require more fre- CD4+ lymphocyte count as a system quent monitoring. reflection of immune function When possible, achieving an unde- A target of HIV, the CD4+ lymphocyte tectable HIV viral load on ART may take plays a central role in the immune system, continues weeks to months. Once attained, however, which has been likened to that of the con- it requires (at least at this time), a lifetime ductor of an orchestra. Performing appro- of regular adherence to prescribed ART priately and in adequate numbers, the CD4+ to grow to maintain. Maintaining an undetectable cell directs the immune system’s harmoni- viral load indicates that the HIV lifecycle ous functioning, defending the body from is being suppressed to the extent possible harmful invading microbes or malignant as do new within a given person. Th is minimizes the neoplastic (abnormal or tumorous) cells risk that the virus will develop mutations without injury to healthy tissues. However, treatment (i.e., mistakes in genetic coding) that are a decline in CD4+ number can permit a associated with resistance to ART. cacophony of serious opportunistic infec- tions (OIs) such as Pneumocystis pneu- options. Viral Resistance Testing monia (PCP); cytomegalovirus (CMV); Replicating up to billions of times daily toxoplasmosis; malignancies (for example, within an infected person, particularly in lymphoma or Kaposi sarcoma); or autoim- Th e result of such a test is oft en referred the absence of completely suppressive ART mune disorders, wherein the immune sys- to as a viral load, and is most frequently (such as when treatment adherence has tem injures normal cells, as in idiopathic expressed as the number of copies of HIV been lax), mistakes or mutations in the HIV thrombocytopenic purpura (ITP). RNA detected in a milliliter (ml) of plasma genetic code may occur frequently. Disturbingly, HIV may attach itself to (the liquid component of blood). Th ough a Such mutations, when conferring resis- CD4+ molecules, gaining entry to, parasit- number of diff erent tests are in use to mea- tance to a particular ART drug or class of izing, and destroying these critical immune sure viral load with diff erent lower limits of drugs, may provide the mutant virus with a cells in large numbers for long periods of viral detection, all are generally very reli- selective survival advantage in the acceler- time while the infected individual may able. ated evolutionary scheme of the microbial remain free of symptoms. Th is is because When the number of copies of HIV environment within an infected individual. the body continues to produce large num- RNA is lower than the lower limit of detec- Mutant HIV may then become predomi- bers of CD4+ cells in an eff ort to replace tion of the assay being used, the viral load nant, rendering treatment with that par- those lost. is said to be undetectable. ticular ART drug, or in some cases, class of Ultimately however, this eff ort proves An important goal of treatment for ART drugs, ineff ective for that person. inadequate, and the CD4+ cell number most patients receiving ART is to attain Th us, when viral loads are noted to be declines to the point (frequently below 200 and maintain an undetectable viral load. consistently elevated, it is appropriate to cells per cubic millimeter, mm3, of blood) Th is does not mean that HIV is eradicated perform blood tests called HIV genotype or where immune defi ciency allows the oppor- from the treated person, but rather that phenotype in order to determine whether tunistic processes to take over. 20 Positively Aware PA • September / October 2009 • tpan.com • positivelyaware.com At this point, an HIV-positive individ- to initiate ART or OI prophylaxis, when ual may be described as having Acquired symptoms develop, or when CD4+ decline Immunodefi ciency Syndrome (AIDS). accelerates. Th erefore, an important goal of therapy for HIV infection is to attain and maintain HIV, your immune system, and you healthy CD4+ lymphocyte (T-cell) num- Currently available ART regimens bers. Th ese may be measured with a special cannot eradicate HIV infection even when blood test known as the CD4+ lymphocyte used as directed, since integrated provirus Health care count, which is performed upon diagnosis can remain for prolonged periods within of HIV infection to assess the potential human cells. Lapses in ART can result in benefi t of immediate versus deferred ART continuation of the HIV lifecycle with providers and/or prophylactic medication to prevent renewed viral replication. Th is can lead certain OIs. Th is test will be repeated at to increases in measured viral load and intervals thereaft er to reassess the need for subsequent reductions in CD4+ lympho- and patients beginning ART in untreated individuals, cyte counts, with increased risk of disease and to monitor treatment response in those progression to AIDS and of more serious can form receiving ART. opportunistic illnesses. Currently, ART is generally recom- Consequently, long-term, careful mended for people living with HIV when adherence to prescribed ART is critical for powerful they have symptoms related to their infec- maintaining control of viral replication, tion, or if asymptomatic, when they have and thus permitting the immune system to CD4+ counts at or below 350 cells/mm3. reconstitute and sustain CD4+ cell number therapeutic Medical knowledge about HIV, ART, and and function to the extent possible for a the immune system continues to grow as given individual. do new treatment options; and so, guide- Learning about HIV and its lifecycle alliances, lines for precisely when to begin ART also within host CD4+ cells provides us with continue to evolve. an enhanced appreciation for the dynam- ics of ART treatment and for why adher- keeping HIV Preventing OIs ence to such therapy can be so vital to the Guidelines for the prevention of OIs integrity of immune defenses. Sharing such infection at in HIV-positive patients also provide spe- an appreciation, health care providers and cifi c recommendations for when to begin patients can form powerful therapeutic alli- prophylactic, or preventative, medications. ances, keeping HIV infection at bay. bay. For those individuals who have not expe- It is important that infected individuals rienced symptoms of a particular OI, the identify, and actively engage with, knowl- threshold for beginning such prophylaxis edgeable and interested caregivers who are board-certifi ed internist , pediatrician, adult is based upon CD4+ cell count (as when open to questions and frank discussions and pediatric infect ious diseases, and HIV trimethoprim/sulfamethoxazole [Bactrim] about HIV and related issues, including medicine sp ecialist , Dr. Cervia has dedi- for PCP prevention is recommended at 200 experiences with side eff ects of medications. cated much of his career to the care of indi- cells/mm3). Although current ART cannot cure HIV viduals and families battling HIV and other Conversely, individuals treated with infection, it can be an integral and empow- infect ious diseases, and to clinical research ART who experience a rise in CD4+ counts ering element of care aimed at enjoying a related to prevention, therapeutics, com- following control of HIV replication that is longer and healthier life. e plicating illnesses, and quality of life issues. sustained over several months may receive He has authored over 100 articles, chapters, a recommendation to discontinue certain Joseph S. Cervia, M.D., M.B.A., FACP, and abst ract s, lect ured widely, and serves prophylactic medications for OIs. FAAP, FIDSA, AAHIVS is currently Clini- as a consultant to numerous local, national, Therefore, CD4+ lymphocyte num- cal Professor of Medicine and Pediatrics at and international organizations on HIV and bers may be measured every three to six the Albert Einst ein College of Medicine in infect ious disease-related issues. months in asymptomatic HIV-infected New York, Volunteer Attending Physician persons with relatively high counts who are at the Center for AIDS Research and Treat- either not taking ART or are stable on ART, ment of the North Shore/Long Island Jewish while these tests may be performed more Health Network, and Medical Direct or and frequently when deciding upon the need Senior Vice President for Pall Corporation. A PA • September / October 2009 • tpan.com • positivelyaware.com Positively Aware 21 OIs and Co-infections and STIs
ow that powerful HIV medications can slow down the (mycobacterium avium complex). It can be seen with any of the OIs, N progression of HIV-related disease and even AIDS, more however. Each OI listed in the guidelines has a section on the infl u- common illnesses (such as heart disease and cancer) have ence of IRIS that is known so far. become a greater concern for people living with the virus. OHOpportunistic, infections M Still, some of the same old AIDS-related bugaboos continue to be a problem. A little knowledge about these other illnesses can Pneumocyst is jirovecii pneumonia (PCP) is probably the most help prevent them, and thus assist in maintaining a healthy life common or well-known OI. It used to be known as pneumocyst is with HIV. First, some background information. carinii pneumonia until the fungus jirovecii was found to be the actual cause, and the initials PCP were kept because they were so What’s that? well known. In the beginning of the epidemic, and for a long time aft er- Th e major symptom of PCP (as with all pneumonias) is dif- wards, opportunist ic infect ions (OIs) were a major (if not the major) fi culty breathing. Anyone having a hard time breathing should go cause of death in people with AIDS. Opportunistic infections are immediately to the emergency room. Unfortunately, it is still com- those that can get stronger and cause illness as the immune system mon for people to fi nd out they are HIV-positive at the time they gets weaker (as can happen with untreated HIV). are diagnosed with PCP (and other OIs, as well). Getting tested for OIs are a type of co-infect ion. For someone with a chronic HIV earlier, and treated for it, helps avoid PCP and other illnesses. (long-term) condition like HIV, having another infectious illness Hepatitis A (HAV), hepatitis B (HBV), and hepatitis C (HCV) on top of it is called a “co-infection.” For example, “He is co-infect- are viral diseases that cause infl ammation of the liver. Prevention, ed with HIV and hepatitis C.” or early diagnosis, is important because treatment can be very dif- In HIV, other sexually transmitted infect ions (STIs) are also fi cult, as well as expensive. Hep A can be picked up through unsani- co-infections. STIs continue to be a major concern in HIV. tary food preparation (as in using the restroom and not washing hands before handling food). Hep B can be acquired through blood U.S. guidelines contact (as sometimes occurs with anal sex, for example). Hep C Th e U.S. National Institutes of Health (NIH) publishes OI can also be transmitted through blood-to-blood contact, as well guidelines for people with HIV. (Electronic copies only are avail- as during sex. Hepatitis C is very common among injection drug able; visit www.aidsinfo.nih.gov. users. Symptoms of a recent viral hepatitis infection include nausea While vaccinations, prevention drugs (called “prophylaxis”), and vomiting, but hep C may not cause symptoms. and better strategies for dealing with OIs helped save lives in the Creamy white spots on the tongue are a sign of thrush (a yeast early 1990s, it was really the very eff ective HIV medications of the infection also known as “candidiasis,” since it’s from the Candida mid-90s that helped squash these infections. For this reason, the albicans fungus). Th e infection can travel down the throat to the guidelines emphasize the use of HIV drugs for the prevention, as esophagus (the tube that helps take food to the stomach), causing well as treatment, of OIs. pain or burning sensations and making eating diffi cult. Difl ucan (fl uconazole) is the treatment of choice, but other drugs might be IRIS necessary, depending on the individual’s infection. Ironically, there’s an undesirable condition that’s sometimes Tuberculosis (TB) is more common in poorer countries, but is seen as a result of starting HIV therapy. It’s called “IRIS,” which not that uncommon in the U.S. in people with HIV. TB, which is stands for “immune reconstitution infl ammatory syndrome.” Th is usually an infection of the lungs (although the pathogen can aff ect syndrome is not yet well understood. It has generally been seen in other parts of the body), causes coughing. TB diagnosis in a person people who have advanced immune damage (low T-cell count or with AIDS can be diffi cult. Time spent in places like correctional high viral load) at the time they begin taking HIV medicine, or facilities, homeless shelters, and nursing homes might increase the sometimes when they go back on it. risk of infection. TB medications must be taken for six months, Th e “immune reconstitution” is a good thing. It means that the sometimes longer. immune system is recovering, or getting stronger. Th e “infl amma- CMV—cytomegalovirus—usually aff ects the eyes. It can lead tory” part is not so good. Infl ammation occurs when the body is to partial or full blindness. CMV is very common in the U.S., but fi ghting disease or injury. People who experience IRIS can become because it is an “opportunistic” infection, it does not cause ill- very sick as their body battles an OI. ness in most people who have it. Treatment consists of pills or IV At this point, according to the OI guidelines, it seems that (intravenous) medications, but the immune recovery seen with HIV IRIS can occur four to eight weeks aft er starting therapy, and is therapy can bring CMV under control. most commonly seen with tuberculosis (TB) or disseminated MAC 22 Positively Aware PA • September / October 2009 • tpan.com • positivelyaware.com Staying healthy with HIV by keeping on top of bugs and such by Enid Vázquez
Sex, sex, sex Syphilis remains a tremendous problem in gay communities A little knowledge throughout the country. Th at’s why free testing and treatment is about OIs can help MY!widely available. Check with the health department for a refer- ral. An inexpensive penicillin shot treats syphilis. Sometimes, however, treatment is more complicated. Th e fi rst sign of syphilis prevent them, is a sore (called a “chancre”), or several of them. Th ey are usually fi rm, round, small, and painless, and appear at the site of infection and thus assist (mouth, vulva, penis, etc.). Contact with a chancre is what causes infection. Left untreated, the infection can then cause rash, espe- in maintaining a cially on the palms of the hands and the bottoms of the feet. Th e rash, which usually does not cause itching, looks like rough red healthy life with HIV. or brownish-red spots. Sometimes, the rash can be very light and hard to notice. Th ere may also be fever, swollen lymph glands, sore be required. In women with HIV, a cone biopsy of the cervix (a throat, patchy hair loss, headaches, weight loss, muscle aches, and cone-shaped removal of abnormal cells) is common. fatigue. Left untreated, syphilis can spread to the internal organs (heart, brain, liver, etc.). Again, free testing, and even free treat- Summary ment, can be found. Left untreated, any of the above conditions can cause illness. People have been surprised to be diagnosed with gonorrhea Th e following is a list of tips for staying healthy. in the throat, which they picked up during oral sex. Gonorrhea is • People with HIV should get tested for a variety of co-infec- easily treated with inexpensive pills. Symptoms include a painful or tions, including hepatitis A, B, and C. burning sensation when urinating, and a discharge from the penis • Get vaccinated to avoid infections. People with HIV should or vagina. Th e discharge may be white, yellow, or green. Gonorrhea get an annual fl u shot (FluMist nasal spray is not recom- may cause pain or swelling of the testicles. In women, it may be mended). Th ey should get vaccinated against pneumococ- confused with more common vaginal infections. Symptoms may be cal pneumonia, meningococcal meningitis, hepatitis A and very mild or take a long time to appear. Antibiotics treat gonorrhea, B (there’s a combination vaccine available), and measles, but special ones may be necessary in some cases. Th at’s because mumps, and rubella (MMR), if they were born aft er 1957 antibiotic-resistant gonorrhea has been around for a while. Th erapy and did not get the shot in childhood. Th e MMR shot is not is usually combined with treatment for another STI, chlamydia. recommended for people with less than 200 T-cells. Th ey Like gonorrhea, symptoms of chlamydia are frequently unseen, should also get a combination vaccine against tetanus (rela- but are similar to the symptoms for gonorrhea. Some women may tively common among injection drug users) and diphtheria experience bleeding aft er sex or between periods and lower abdom- (oft en found in homeless people), but not more than once inal pain. every 10 years. People under age 65 should get the triple Herpes has been found to increase the risk of HIV infection. TDAP shot—tetanus, diphtheria, and pertussis (whooping Flare-ups may be more common and more severe in people with cough), followed by TD booster shots. HIV. One herpes drug, Valtrex (valacyclovir), is not recommended • People with less than 200 CD4+ T-cells should take a medi- for people with suppressed immune systems. cation to prevent PCP (Bactrim, TMP-SMX, Septra, Sul- HPV—human papillomavirus—causes genital warts. It can fatrim, or co-trimoxazole). Th is medication is inexpensive, later cause abnormal cells (called “dysplasia”), and then may prog- and there are other medications available for people with ress to cancer. Th ese problems are more common and more severe sulfa allergies. in HIV-positive people. Regular Pap smears are recommended. In • Seeing a medical provider on a regular basis—even if not the future, anal Pap smears may become readily available. At this taking HIV treatment—can help catch an infection earlier point, health care providers are rarely trained to do them. For now, rather than later, before it causes more damage or becomes a digital (fi nger) examination is recommended to feel for tumors. more diffi cult to treat. Symptoms, even minor ones, should Anal cancer is more common in both men and women with HIV. If be brought up with the provider. abnormal cells are found during a Pap smear, a teeny, tiny micro- • Remember, strong HIV therapy (called “HAART”—pro- scope can be used to examine the cervix, anus, or rectum. Th e cells nounced like “heart”—for highly active antiretroviral ther- can then be removed, but if the infection has spread, cancer che- apy) is currently the best bet for preventing OIs and the motherapy (either in pills or intravenously) and/or radiation may damage and death they can cause. e PA • September / October 2009 • tpan.com • positivelyaware.com Positively Aware 23 What’s for Breakfast (and Lunch and Dinner)? HIV and what you eat, drink, and take by Sue Saltmarsh
All your life you’ve heard it—“Eat your vegetables or there will Calories be no dessert!” If there is any good news about being HIV-positive, one bit “Most Americans don’t eat enough fruits and vegetables.” may be that you now have a legitimate need to take in more calories, “Want to lose weight? Cut out the carbs!” especially during times of fi ghting opportunistic infections. Th e I don’t know about you, but I’d love it if there were some rea- Tuft s School of Medicine recommends that HIV-positive people son not to eat vegetables (say, like, the E. coli thing with spinach?), need 17-20 calories per pound of body weight; if you’re fi ghting an whole grains (mealy bugs in the bran?), and please, please someone opportunistic infection, 20 calories per pound for sure; if you’re stop the insanity of mothers trying to convince their kids that rai- losing weight, 25 calories per pound. sins or apples are “just as good” as candy! While it’s true that, from a strictly caloric standpoint, your Th e fact is that most can agree that in order to maintain opti- body can’t tell the diff erence between the calories in a piece of mum health, whether you’re HIV-positive or not, it’s best to exercise candy and the ones in a bowl of fresh fruit salad, remember that our option to fulfi ll the human dietary destiny of being omnivores, the ones from the fruit come with other things that will help keep or able to eat everything. Of course, there are those among us for you healthier than the sugar in the candy. whom a vegetarian, raw, or macrobiotic diet would work perfectly, just as there are those who are meant to be meat-eaters. Whatever More protein, better fat is right for you, there are some basics that anyone living with HIV In general, HIV-positive people need higher amounts of pro- should factor into their food choices. tein in order to maintain good muscle mass and provide building 24 Positively Aware PA • September / October 2009 • tpan.com • positivelyaware.com blocks for the immune system. Of course, meats, fi sh, poultry, and eggs are high in protein, but vegetarians can also fi nd it in nuts and seeds, tofu, legumes (beans and peas, oft en dried), dairy products, With all the information and soy milk. A good rule of thumb is to eat one gram of protein for every two pounds of body weight—so if you weigh 160, 80 grams that’s available from (around 3 ounces) of protein per day would be appropriate. Fats and oils provide the most concentrated sources of energy sources like your mother in the food spectrum, but there are some that carry some risk, in terms of cardiac complications. Th e most evil kind of fat is trans fat. to your doctor to the No, this is not fat that is going through the sex-change process. One way to look at it is that these substances tend to be man-made or Internet, you may find modifi ed (partially hydrogenated vegetable oil, for instance), rather than fats found in nature. Th e fat in that chicken skin everyone tells yourself becoming you to peel off is a saturated fat—saturated fats should be limited to small amounts. Monounsaturated fats contain essential fatty acids that we all need and are the healthiest kind of fat. Olive, canola, obsessed with always fl axseed oils, avocados, and nuts contain these fats. eating, drinking, or Color and diversity Just as in humanity, there is an array of diff erent colors and taking the “right thing.” types of vegetables and fruits. Th ese gift s of nature are full of vitamins, minerals, and fi ber, all important for maintaining your tose, types of sugar. Bottom line is that nothing can really replace health. Th ey also have antioxidant and anti-infl ammatory proper- water. Don’t like it? Put a slice of lemon or lime in it to give it some ties. General dietary guidelines say you should have 5-6 servings fl avor and it will also help you with your alkaline balance. of fruits and vegetables every day. To get the full range of nutrients they provide, eat a variety of colors. Be aware, however, especially if The add-ons diabetes is an issue, that these gems can contain fructose, a kind of Vitamins and mineral supplements, enzymes, and, my person- sugar, as in pineapple and beets, and carbohydrates from starch, as al favorite, herbs can all be important parts of your plan for stayin’ in potatoes and corn. For the most part, though, the benefi ts of the alive—it has been reported that up to 73% of people with HIV have nutrients and fi ber far outweigh any risk of sugar or carb overload, used some form of such alternative or complementary therapies. so don’t use that as an excuse not to eat them! However, it is absolutely essential to discuss any planned additions with your doctor or nutritionist. Don’t just read something in a Complexity over simplicity magazine or online and start taking it without telling your doc— Th e thing about carbohydrates is that we literally can’t live you could do more harm than good! without them. Th ey provide the calories and energy necessary for When you consider taking a botanical medicine, you will everything from the beating of our hearts to carrying the laundry probably hear a lot about how they can interfere with your phar- up the stairs to hugging our loved ones. Just as with fats, there are maceutical meds. Most of the time, this is more about the infamous some that are healthier than others and of course, the worst ones P450 metabolic pathway than it is about the chemical constituents taste the best! clashing. Simple carbs are those found in sugary drinks, baked goods, Th e majority of pharmaceuticals, herbs, and recreational drugs candy, ice cream—all that stuff you want to eat, but know you are metabolized, or processed, through the liver on this particular shouldn’t. Not that complex carbs are always less than joyful. Noth- pathway. When these substances are taken together, the metabolic ing beats a creamy bowl of oatmeal on a winter morning or really “traffi c jam” that ensues can result in lowering or raising the blood good toasted multigrain bread with your eggs. Pasta and brown levels of the medicines, thereby reducing their effi cacy or increasing rice are also good with the right accompaniments. So think about their side eff ects or toxicities. it in terms of conversation—wouldn’t you rather have a stimulating Th ough there has been a double-blind study done (see sidebar) conversation with an average, intelligent, complex person than a with ginkgo, ginseng, and some common pharmaceuticals that gorgeous, dumb, simple one? Okay, sigh, well, maybe that analogy indicates that those herbs, while traveling the P450 highway at the doesn’t work for everyone, but you get the point! same time as the pharmaceuticals, had no negative eff ect on the blood levels or effi cacy of the drugs, even I, as an herbalist, endorse Oasis the “better safe than sorry” approach. Th ere is plenty of literature Water is something else we can’t live without. A person available, including our annual HIV Drug Guide, which will warn deprived of water will die faster than one deprived of food. Several you about what herbs not to take with which ARV meds. of the antiretroviral medications (such as Viread, Crixivan, and Sadly, many Western medical providers don’t know much Reyataz) require increased water intake in order to prevent kidney about the potential therapeutic or contraindicative properties of complications. And, sorry, but Diet Coke doesn’t count! Anything herbs and other botanical medicines. Th erefore, it’s up to you to you drink that contains caff eine (coff ee, most tea, soda) is not going do your homework! Before you talk to your care provider, do some to hydrate your body like water. Fruit juices and milk are liquids research on the Internet or in your public library. If possible, con- that contain good nutrients, but they also contain fructose and lac- sult a certifi ed herbalist. In any case, go into the discussion with as PA • September / October 2009 • tpan.com • positivelyaware.com Positively Aware 25 much information as you can gather about the botanicals you’re considering. While some physicians may be fi rmly against your choice to try alternative or complementary therapies, many will It’s generally welcome the opportunity to learn about some of the things their patients are interested in adding to their health care regimen.
recommended that HIV- More science Much more scientifi c knowledge is available for vitamins, min- positive people take a erals, enzymes, and other supplements. It’s generally recommended that HIV-positive people take a multi-vitamin, especially if you multi-vitamin. know that you’re not getting all the nutrients you need in the food you eat. Vitamin C is also frequently recommended for its excellent antioxidant properties. Ginkgo and ginseng Th eBody.com has an excellent chart that lists the major vita- mins, dosages, functions, possible toxic eff ects, and food sources. In 2007, Dr. Gregory Reed, of the University of Kansas See “Resources” below for the link. Medical Center, conducted a study that found that the recom- Other supplements, including amino acids (like N-acetyl mended daily doses of ginseng and ginkgo biloba supplements, cysteine [NAC] and L-glutamine), organisms (like acidophilus), or the combination of both supplements, are unlikely to alter the and substances the body makes (such as CoQ10 and alpha lipoic pharmacokinetics—the mechanisms by which drugs are metab- acid) can have positive eff ects on such things as neuropathy, diar- olized, distributed, absorbed, and eliminated by the body—of rhea, digestive problems, and heart health. Th eBody.com also has a the majority of prescription or over-the counter drugs. list of these supplements at the same link. Th e research team recruited 72 healthy non-smoking adults (31 men and 41 women, ages 20 to 59) who were not taking any Resist OCD prescription drugs or dietary supplements. Th e participants With all the information that’s available from sources like were given a “cocktail” of fi ve drugs, which, taken together, pro- your mother to your doctor to the Internet, you may fi nd your- vide measurements of the pathways that determine the phar- self becoming obsessed with always eating, drinking, or taking macokinetics of over 90% of prescription drugs. Th e scientists the “right thing.” Th ere are a lot of things that HIV takes out of measured the presence of these drugs or their metabolites in your control, so being able to “be in charge” through your food and each subject’s blood and urine in order to establish a baseline supplement choices can be reassuring and empowering. for how each individual metabolized and absorbed the diff erent But food is also one of the ways we humans have to show our prescription drugs in the absence of herbal supplements. love, to celebrate, to ritualize, to comfort and reward ourselves, and Th e 72 individuals were then assigned to one of four groups. simply to experience joy. Recognize that allowing yourself to do all For four weeks, the fi rst group received a ginseng supplement those things occasionally, even with food that’s “naughty,” or not of and a placebo for ginkgo; the second received ginkgo and a pla- the highest nutritional value, can be therapeutic too. cebo for ginseng; the third received both ginseng and ginkgo As the saying goes, moderation in all things. e supplements; and the fourth received placebos for both supple- ments. Th e prescription drug cocktail was again administered Resources and blood and urine samples were taken in order to determine the metabolism and absorption of these drugs in the presence of Th e National Institutes of Health (NIH) are currently enrolling either or both of the herbal supplements. a study of healthy, HIV-negative individuals to assess whether there Th e study found no signifi cant diff erences between those is an interaction between the protease inhibitor Kaletra (lopinavir/ who received one, both, or none of the ginseng and ginkgo bilo- ritonavir) and the herbs echinacea, ginkgo, and ginseng. To fi nd out ba supplements in how their bodies metabolized or absorbed any more, visit www.clinicaltrials.gov and use the study identifi cation of the fi ve prescription drugs. Th ese results suggest that neither number, NCT00103012, to search for it. ginseng nor ginkgo at recommended doses will aff ect the phar- An HIV-specifi c chart listing vitamins and supplements is macokinetics of the majority of prescription or over-the counter available at: drugs, though it should be noted that the pharmaceuticals that http://www.thebody.com/content/art46400.html were taken in the study were not antiretrovirals (ARVs) and no For listings of professional herbalists, visit: such study has been done on ARVs specifi cally. http://www.americanherbalistguild.com Th is study was supported by the National Center for Com- http://www.herbalist.allnutri.com plementary and Alternative Medicine of the National Institutes of Health. e
26 Positively Aware PA • September / October 2009 • tpan.com • positivelyaware.com s explained in the article “HIV and Non-nucleoside analogs A Your Immune System” (see page Th ere are four non-nucleoside analog 17), there are fi ve diff erent drug drugs: Sustiva (widely used), Rescriptor classes on the market to treat the virus. (rarely used), Viramune, and Intelence, the Although there are possible side eff ects newest in this class. with each of the HIV medications, some of Rash is associated with this class. them are associated with the drug classes That doesn’t sound bad, unless it themselves. becomes severe and disabling. In An important thing to remember about addition, Sustiva and Viramune are drug side eff ects is … they may not occur! associated with serious side eff ects of Th e majority of side eff ects are a possibility, their own. See the Drug Guide not a guarantee. Also remember that side for specifi cs. eff ects vary from person to person—what happens to one individual may not happen Protease inhibitors to another. The protease inhibitors On the other hand, some drug side (PIs) are the drug class that eff ects are common, while others are rare. turned the epidemic around Patients should mention any and all symp- (although Sustiva matches or toms to their medical provider. beats many of them for effi cacy). Th is article will provide an overview. Th e PIs are Aptivus, Crixivan, Invirase, Queaze, See the Positively Aware Annual HIV Kaletra, Lexiva, Norvir, Prezista, Reyataz, Drug Guide (March/April 2009) for more and Viracept. Sneeze, Yawn, extensive lists of each drug’s potential side For a while, the PIs were thought to eff ects. cause the body changes oft en seen with and Runs It’s a good idea to review the drug HIV therapy. Later, it was found that other label itself, the comprehensive informa- HIV drugs were also associated with these tion that comes with a medication (oft en changes. Today, with newer HIV medica- A little laundry list of as a folded-up piece of paper). It can also tions, facial and body changes can usually possible side effects be found online under the drug’s name, be avoided. of the different for example, www.atripla.com. Th e label, Th e potential drug class side eff ects of which is written with technical language, PIs are increases in cholesterol and triglyc- HIV drug classes every word approved by the U.S. Food and erides (except possibly unboosted Reyataz— by Enid Vázquez Drug Administration (FDA), is usually without Norvir); onset of new cases or wors- re-written in simpler terms and available ening of diabetes; immune reconstitution under “patient information.” infl ammatory syndrome (IRIS, see page 40); Isentress are diarrhea, nausea, headache, Note: With the many improvements in and bleeding in hemophiliacs. In terms of fever, fatigue, and lipodystrophy. HIV therapy over the years, not all drugs changes in body fat, lipodystrophy remains within a class are associated with the side on the list of potential class side eff ects. Combination drug: Atripla eff ects of that group of medications. Atripla, possibly the most widely pre- Entry inhibitors scribed HIV medication on the market, is Nucleoside analogs Th ere are two diff erent types of entry made up of three drugs from two diff erent The nucleosides were the first HIV inhibitors on the market. Although not as classes. Atripla consists of Sustiva, Viread, drug class available in the pharmacy. Th ey widely prescribed, they can still be eff ec- and Emtriva. Its one pill, once-daily formu- include Combivir (Epivir and Retrovir), tive, especially for treatment-experienced la has been a huge boost to HIV treatment, Emtriva, Epivir, Epzicom (Epivir and Zia- individuals. and it is hoped that other antiviral medica- gen), Retrovir (zidovudine, or AZT), Triz- Fuzeon is a fusion inhibitor and the tion classes will be combined into one drug ivir (Epivir, Retrovir, and Ziagen), Truvada only injectable HIV drug. Fuzeon is associ- in the future. Nausea, diarrhea, and rash (Emtriva and Viread), Videx and Videx EC, ated with injection site reactions and pneu- are associated with Atripla, but also check Viread (actually a nucleotide analog, but monia. the drug guide for each individual drug. oft en lumped in with the nucleosides), Zerit, Selzentry is an oral CCR5 antagonist. and Ziagen. Th e most common side eff ects of Selzentry Other drugs Some of the nucleoside analog drugs include cough, fever, cold, rash, liver toxic- Remember that people with HIV may (mostly the older ones) are associated with ity, and diarrhea. take other medications, especially if they pancreatitis (infl ammation of the pancre- have advanced disease. Th ose drugs come as); enlarged, fatty liver; and lactic acido- Integrase inhibitor with their own potential side eff ects. Be sure sis. Th ese are serious conditions. Th ey are Th ere’s only one on the market, Isen- to discuss all your medications with your not seen with Viread, Epivir, and Emtriva, tress, a powerful drug known for its low risk doctor or other medical provider to make which are known to be very tolerable medi- of side eff ects. Th e ones that may occur with sure they’re compatible and to educate cations. yourself about possible side eff ects. e PA • September / October 2009 • tpan.com • positivelyaware.com Positively Aware 27 Exercise: The Best Therapy for Managing Side Effects
How to stay active and energetic by Michael Mooney and Nelson Vergel
here are many benefi ts of exercise drolone (Oxandrin, an oral anabolic) in Testosterone and resistance exercise T in HIV disease. Besides the evident eugonadal men with wasting.5 promote gains in body weight, muscle mass, improved self-image, energy level, Muscle hypertrophy (enlargement), muscle strength, and lean body mass in and mental outlook, several research stud- induced by resistance training, may HIV-positive men experiencing weight loss ies performed with HIV-positive people decrease triglyceride levels in the blood of and low testosterone levels.11 have found the following clinical benefi ts hypertriglyceridemic (those with high trig- Exercise training resulted in a substan- in body composition and metabolism. lycerides), HIV-positive men being treated tial improvement in aerobic function while Exercise produces improved muscle with antiviral therapy.6 immune indices were essentially unchanged. function, increased body dimensions and Acute exercise does not have a deleteri- Quality of life markers improved signifi - mass, and strength when used alone.1, 2 ous eff ect on HIV replication in adults with cantly with exercise.12 It may reduce trunk (belly) fat mass in high viral loads.7 patients with HIV lipodystrophy.3 Moderate physical activity may slow Getting started It increases muscle mass and decreases HIV disease progression.8 Before you start an exercise program, LDL (bad cholesterol) when combined with Exercise is associated with signifi cant there are some things to consider. First, testosterone in eugonadal men (men with improvement in mood and overall distress, get your blood pressure, heart rate, weight, normal testosterone) with wasting.4 as well as a signifi cant increase in body cell body dimensions, fasting cholesterol, trig- It increases build-up of lean tissue and and lean body mass.9 lycerides, and blood sugar measured. Your strength gain when combined with oxan- Exercise can increase bone density in doctor should be able to advise you if you men and women.10 are capable of exercising without health 28 Positively Aware PA • September / October 2009 • tpan.com • positivelyaware.com problems. Check these variables monthly www.myfi t.ca/exercisedatabase/search. if you can. asp?muscle=Home&equipment=yes. If you feel tired and weak, start walk- For examples of other exercises you It’s easier to stay ing every day to your best ability. Walking can do at home, visit http://webofl ife.nasa. can help increase energy levels to enable you gov/exerciseandaging/chapter4_strength. to start a more intensive exercise program html. motivated when later on when you’re feeling better. Using For great resistance exercises at the a cheap pedometer to measure your daily gym, visit: http://www.myfi t.ca/exerciseda- you train with steps is useful. Try to reach 10,000 steps tabase/weight_lift ing_exercises.asp. a day since that has been associated with good cardiovascular health and fat loss. Important things to remember someone else Th ere are two types of exercise: resis- • Learn how to do each exercise cor- tance (or weight) training and cardiovascu- rectly and concentrate on using lar (or aerobic) exercise. Resistance training strict form to get the most out of who has a vital uses weights to induce muscle growth. Car- exercise and prevent injuries. diovascular exercise improves the way your • Make sure your muscles are warm interest in your body uses oxygen and increases metabo- before targeting them with more lism so that you can burn fat and lower bad challenging weights. Warm them cholesterol and blood sugar. up with a light, high-repetition mutual success. Do low-impact aerobic exercise three exercise set. to four times a week. Exercising for 20–40 • Don’t use your body to add momen- minutes by walking fast, bike riding, going tum; cheating this way takes work up the stairs, using a stationary bike, ellip- away from the targeted muscles. Safety first tical trainer, or treadmill will increase Use a deliberate speed to increase Always remember—safety first! If your aerobic capacity, help to burn fat, and the eff ectiveness of the movement. something you do in an exercise hurts, stop! decrease cholesterol, triglycerides, and • Use a full range of motion on all Ask for help to fi gure out what you’re doing blood sugar. Jogging should only be an exercises. Feel the muscle stretch at wrong. Maybe it’s improper form. If you option if you have very strong joints and no the bottom and go for a momentary hurt yourself, you will hinder your progress problems with neuropathy. Do not do aero- peak contraction at the top. Don’t because you won’t want to work out! Learn bic exercise if you are losing weight invol- go too fast! proper form! Do not exercise if you feel you untarily or if you are tired or recovering • Warm up before you work out and are coming down with a cold. from illness. Some people worry that car- stretch aft erwards to prevent injury. diovascular (aerobic) exercise can increase Briefly stretch the major muscle Commit yourself fat wasting (lipoatrophy), but this fear is groups before your training. Th is If you can aff ord it, join a gym. If you unfounded, in our opinion. helps fl exibility and muscle recovery. spend the money, you’ll be more likely to For stretching routines, go to http:// stay with it, and consistency is the key to Recommendations webofl ife.nasa.gov/exerciseandag- success in any exercise program. Also, try Train with weights and machines ing/chapter4_stretching.html. to fi nd someone who is enthusiastic to train three times a week for one hour. Starting • Feel the muscles working by keep- with, or get a personal trainer (if you can with machines is the safest way until you ing your head in what you’re doing. aff ord one). It’s easier to stay motivated get familiar with the exercises. As you feel Focus on your muscles contracting when you train with someone else who has more confi dent and strong, bring in free and relaxing. Concentrate on your a vital interest in your mutual success. It’s weight exercise (hopefully with the help body exercising, not on thoughts or also safer to have someone to spot you when of a workout buddy). As you get stronger, people around you. you lift heavy weight. increase your weights in every exercise. • If the weight’s too light (more than Exercise one body part per week, and do 12 repetitions), try using a heavier Avoid overtraining three exercises per body part. One light one with more resistance or do the Working out for more than an hour warm-up set and two heavier sets of eight movement more slowly and really can cause overtraining that can destroy to ten repetitions (to momentary muscu- feel the contraction. You should your muscles, decreasing your strength. lar failure, meaning until you can not do be barely able to fi nish the tenth Overtraining is probably the factor most another rep) are enough for each exercise. rep if your weight is the right one. ignored by exercise enthusiasts. In order If you do not have access to a gym, do push Of course, as you get stronger with to build muscle, the body has to receive a ups on the fl oor and squats holding books time, increase your weights. stimulus, a reason, to grow bigger, or hyper- or large bottles full of water at home. As • Keep rest periods to no more than trophy. It’s really very simple: the body only long as you are “resisting” your own body about 20-30 seconds, or shorter, does what it needs to do, what it is required weight, you are doing resistance exercise. depending on how tired you are to do. It isn’t going to suddenly expand its You can also get an exercise ball and fol- from your last set. Th is will also help muscle mass because it anticipates needing low this great home-based workout: http:// to give your heart a mini-workout. more muscles. But if it is challenged to move weights around, it will respond by growing. PA • September / October 2009 • tpan.com • positivelyaware.com Positively Aware 29 Th erefore, any exercise beyond that which tablespoon of glutamine, two tablespoons of is the exact amount of stimulus neces sary fl axseed oil, one or two scoops of whey pro- to induce optimal muscle growth is called tein, fruit, and milk (if you are not lactose overtraining. intolerant, otherwise almond or rice milk, though not soy, since it has been shown to A workout log is recommended increase estrogen in both men and women), Th e best reason to keep track of your provides a good balanced meal after a workouts is so you can see graphically what workout. e you are accomplishing, and analyze your pattern to see if you’re overtraining. You Resources will also be able to see whether you’re gain- ing strength at a reasonable rate. You will Two of the best websites for video clips fi nd when you log your workouts, that if you of exercises and an explanation of anatomy are overtraining, you won’t be gaining in are: http://www.exrx.net/Lists/Directory. The best strength or muscle size. So document your html and http://www.myfi t.ca. workouts by keeping track of the weight you Also, several exercise routines are pro- lift and the amount of reps you lift for each vided on our website, http://medibolics. reason to keep exercise, and then when you go in to train com/exercise.html. again the next week, you’ll know what you You can also fi nd most exercise rou- are trying to improve upon. If you fi nd out tines explained in videos on youtube.com track of your that you’re weaker than you were the time and menshealth.com. before, and everything else like nutrition, Be sure to read Michael’s and Nelson’s workouts is etc. is in line, you may be training too oft en. book, Built To Survive. For more valuable For downloading workout logs, visit http:// information, go to powerusa.org. www.exrx.net/WeightTraining/Workout- so you can see Logs.html. Nelson Vergel, a native of Venezuela, is a 26-year HIV survivor and advocate for Food and hydration wellness in HIV disease. He is the founding graphically Drink at least eight glasses of water a direct or of the Program for Wellness Rest o- day to keep hydrated. Dehydration can rob ration (PoWeR), the Body Positive Wellness what you are you of energy for your workouts. Drink Clinic in Houst on, a founding member of the plenty of water while working out and avoid AIDS Treatment Act ivist s Coalition (atac- sugary drinks, since they will cause fatigue usa.org), founder/moderator of the largest accomplishing. aft er an initial burst of energy. Some people online HIV health support group (pozhealth like to drink green tea or creatine in juice at yahoogroups.com), an international before a workout to help increase energy sp eaker, an expert on nutrition and comple- levels through a workout. mentary therapies at Th eBody.com, and the A light carbohydrate meal (fruits, car- co-author of the book Built To Survive. Most Another way to look at it is, if you take any bohydrate drinks, etc.) before a workout and recently, Nelson was select ed to be a mem- bodybuilder and put him in bed for weeks a protein-rich one aft erwards is advisable. ber of the U.S. Department of Health and at a time, he’ll begin to rapidly lose muscle Keep yourself well hydrated with plenty Human Services HIV Guidelines Panel. For mass because the body will sense that it of water throughout the workout. And get more information about Nelson and his pro- doesn’t need the extra muscle any more. So, plenty of rest aft erwards. grams, please visit www.powerusa.org. one needs to deliver the stimulus to begin Do not work out aft er eating a regu- muscular hypertrophy (growth) and that’s lar meal. Wait at least two hours. If you Michael Mooney is a long-time medical what lift ing weights does. However, overdo- need a snack, have some fruit and a slice of researcher who co-authored “Built To Sur- ing exercise stresses out the body and initi- toast with peanut butter one hour or more vive.” He was a columnist for Muscle Media ates the process of actually breaking down before working out. Do not consume pro- for two years, has been interviewed in Sports muscle mass as the body begins to burn tein shakes before working out (leave them Illust rated, quoted on ABC’s Good Morning its own muscles to use for fuel. Th is is why for aft er the workout). Digestion will slow America and is Direct or of Education at so many people don’t grow at a satisfying down your workouts and bring your ener- SuperNutrition, a best -selling vitamin line. rate. Even worse, oft en times these people gy down. Within 30-60 minutes aft er the Michael’s unique approaches to building bod- will think they aren’t training hard enough, workout, feed your muscles with a balanced ies will be documented in an exercise video and increase their exercise routines, think- meal containing protein, good fats (olive oil, soon. Learn more about Michael’s research ing they just need more stimuli! And this fl axseed oil), and complex carbohydrates, by visiting his website www.michaelmooney. is where the biggest error is made—more like fruits and whole grains. net. is not necessarily better! It seems para- Supplements like glutamine, creatine, doxical that you could work out less and and whey protein may be a good thing to References available online at www. grow more, but this is very oft en the case. consider. A shake containing one heaping positivelyaware.com. 30 Positively Aware PA • September / October 2009 • tpan.com • positivelyaware.com Clinical Courtship or Medical Matrimony
Finding the doct or who’s your ideal partner in care by Ray Mobley
hen searching for a new doctor, remember that the pro- W cess is not much diff erent than searching for a mate. Consider how your relationship with your partner, hus- band or wife was established. Th ere were the nerves about meeting someone new, the fun of the courtship, the familiarity, those little things he/she does that make you crazy, the 3-year itch (get a pre- scription if it’s that 3-year itch!), not getting what you feel you need, and sometimes even “you don’t bring me fl owers anymore.” Th e same steps can be followed in fi nding your ideal medical provider, but how can you avoid ending up a statistic in that 50% “divorce rate”? Let’s say you’ve gotten a referral to a doc and you’re about to make an appointment for your “fi rst date.” A blind date with lots of unknowns, right? Will he/she have a likeable person- ality? (‘cause my previous blind dates have been like George Bush). Is the offi ce easy to get to? (‘cause I’m not getting on a train and two buses). Could I aff ord to continue dating this person? (will they take my insurance or government plan?). Are the hours convenient? (because I have the kids all day). So, like with any blind date, you’re nervous. Very ner- vous. Trust me, if it’s a good match, those nerves will eventually subside. Above all, be on time! Th ere’s nothing ruder than keeping a date waiting when he could have had another date with someone prettier. You fi nally meet your date and you have some very serious interview questions. You’re actually hir- ing this person to help you take care of yourself! “What are your qualifi cations?” “How much experience do you have?” (Maybe not a question you’d want to ask a real date!) PA • September / October 2009 • tpan.com • positivelyaware.com Positively Aware 31 “How many HIV-positive patients does your practice see? • Get informed! Th e more educated you are about HIV, the “Do you regularly attend medical conferences?” more important questions you can ask. Use the Internet, Listen closely to this doctor. Notice if he/she is actually lis- support groups, and HIV educational classes. Doctors tening to you or talking over you. Do your opinions seem to mat- appreciate educated patients! ter? Do you feel that you’ll be in on the decisions? Do you feel too • Communication can sometimes be challenging with health rushed? Is he/she respectful? Are you being respectful? Is he/she care providers. Establish trust; be open and honest. Don’t optimistic or all gloom-n-doom? Do you sense a judgmental atti- tell your doctor what you think he wants to hear, but what tude? Do you prefer “cutting edge” or more conservative? Do you you need him to hear. feel comfortable about confi dentiality issues? Rate this doctor’s bedside manner on your own scale of expec- Your goal is to build a mutually trusting relationship and tations. establish the best health care plan for you. Some of the things I oft en hear, just like in a relationship, are: Above all, remember that your doctor is only human. Th ey “he never touches me” or “she’s cold and won’t look me in the eyes.” treat, and care for, people with diff erent and complex diseases, thus Maybe you’d prefer more frequent exams or a bit more compassion. making their jobs very challenging and oft en stressful. “He talks in a language I can’t understand.” Perhaps, to him, so do Here’s to your life-long journey with your new partner…to have you! and to hold, in sickness and in health…you know the rest. e Ladies! Is your male doctor va-jay-jay-friendly and knowledge- able? No need to whip her out, just ask how many female patients he Th e author chose to use a psuedonym. sees. Ask his opinion on how treatment or side eff ects for females can diff er from males. Men! Same question: are you and your female doctor comfort- able when talking about your (insert pet name here)? And believe me, it will be talked about! It can be very diffi cult on the fi rst visit, but, by the end, you should have some feeling as to whether this doctor could be a match for you. Is this someone that you can be totally transparent with? You’ll need to feel comfortable enough to discuss everything with this person, including recreational drug use, sexual activities and relationships. Keep in mind, the fi rst doc might not be the right one for you. It’s not uncommon for patients to switch providers down the road. Let’s say you’ve found the perfect match and you’re ready to commit. Remember, time with your provider is precious and lim- ited. Don’t waste it. Here are some tips on how to make the most of each appointment. • Get to know the offi ce staff . Th is will benefi t you in the future. Above all, be nice and it’s more likely that they’ll be accommodating when you need something. • Never miss an appointment without calling to reschedule or cancel, well in advance, if possible. Not only is it common courtesy, but someone else might have really needed the appointment. • Be prepared with questions. Keep a notebook to jot down things you want to know about. Th at way, you won’t forget what you wanted to ask. • You have a right to your medical records and lab results. Ask for a copy if you want to track them. • If possible, make morning appointments. Th at way, you’re more likely to be seen on time. Th e clinic won’t have already had late patients causing their schedule to be backed-up. 32 Positively Aware PA • September / October 2009 • tpan.com • positivelyaware.com Managing your money while living longer by Per Larson n the 20th Century, HIV was seen as a one-way street to all the in 1976, I saw then what we are all experiencing now: the only way I“d-words”: disease, disability, and death. Th is emboldened viati- HMOs know how to cut costs is to cut service and pass on costs to cal settlement companies to buy life insurance policies from the patients. people with HIV at prices near 90% of their face value. Low T-cells As insurers fi nd themselves with their backs to the wall in the alone assured social security disability approval. People bought current meltdown, they’ve become even more motivated to recoup credit card, life, and disability insurance. Investment was shunned their high costs on the backs of consumers, not providers. Deduct- or used like a last-chance, all-or-nothing game. Th e will became ibles have increased and co-payments have skyrocketed, especially the legal document of the day in order to safeguard interests aft er for the brand-name drugs HIV requires. death. In the 90s, Medicaid and Medicare paid better—and we’re In the new millennium, however, HIV has become a two-way all paying the price for that now. Since most people with HIV are street. Disability can now be a refuge from downsizing companies, the working sick, the ben efi ts tail must wag the employment dog: a chance to re-skill and redirect one’s life. Viatical settlement has secure bene fi ts may be more important than high salary or satis- been shoved aside by accelerated payouts of life benefi ts. Disability fying jobs. Employers are going bankrupt. Singles are being target- is still granted, but now, oft en on the basis of medication side eff ects ed in employer reorganizations and downsizings. Th e AIDS Drug or the increasing number of HIV-related conditions that can occur. Assistance Program (ADAP) is under the gun. HIV medical prac- Bankruptcy laws have been tightened. Investment and retirement tices are closing down. Out-of-pocket costs for treatment are rising. are new concerns. And the legal doc ument of the day is the living Any policy with a dollar maximum—even $1 million policies (and trust and powers of attorney in order to safeguard interests during far less on medical policies converted from COBRA coverage)—is life. being hit hard. Monitoring this environment carefully is key. All these shift s have left people with HIV with many no-lon- Retiree benefi ts are also under attack. Pension funds are ger-relevant and possibly dan gerous ideas about personal fi nances imploding, while 401K funds turned out to be the sickest joke yet formed during the horrors of the 80s and 90s. It’s increasingly invented by employers. Th e Social Security Administration has obvious that the widely published advice in money magazines is no Cost of Living Allowance (COLA) now. Medicare Part B pre- misleading and can be downright dangerous when HIV is in the miums are doubled and, once on Medicare, you cannot purchase picture. I wrote the book, Gay Money, because traditional fi nancial individual medical insurance. Th is can force middle-class people advice is geared to people who are heterosexual, married with 2.5 to impov erish themselves to qualify for Medicaid, adding fi nancial children, suburban, and employed. We need to pick our way among insult to medical injury. the land mines and oppor tunities generated by all this. For people with HIV in a few states (New York, New Jersey, Massachusetts), there are still oft en three key protections: individ- Dwindling Medical Insurance ual insurance is priced the same for everyone (communi ty rating); Th e HMO-ization of America is now complete. To my credit, continuity of coverage enables people not eligible for Medicare to though I was trained at the Wharton School as an HMO director go from one health plan to another; and people can oft en keep indi- PA • September / October 2009 • tpan.com • positivelyaware.com Positively Aware 33 attorneys to take them on, many people with HIV are caving in, thus experiencing a drastic drop in income. Lastly, HIV-positive people who still hold individual policies from the 80s should be aware that these were oft en tacitly designed to be underwritten (screened) at the time of a claim instead of the time they were sold. Th ese are claim disasters waiting to happen. In this era of bad Since the early 90s, the best (and only) way to get disability coverage is through employment. Th e good news is that insurers financial advice, the worst have introduced “portable” coverage in some states and industries. advice ever given to Portable disability coverage—just as portable medical coverage— means the end of “job lock”—having to hold onto a job because anyone with HIV may be to qualifying for coverage in a new job can take up to one year (during which you’re not covered). Portable coverage means the new group give away assets and go would give credit for previous experience—making job moves seamless benefi t-wise. Check your local HIV legal group. onto Medicaid. Group disability insurance can be converted to individual cov- erage without medical underwriting if you’re terminated. It deducts vidual medical insurance to pay for pharmaceuticals, even when (“coordinates”) what Social Security would pay, so it only makes going onto Medicare because of disability. For people with HIV in sense if you make $40,000/year or more. It’s expensive, but it’s bet- states that have risk pool insurance (about half the country), there ter than nothing. may be plans that even take people who are already on Medicare. Th e regulations are complex; the prices vary considerably; but it’s The implications of HIV becoming a chronic illness well worth it when it works. Th e dramatic shift of HIV from terminal to chronic has not Preserving private medical insurance benefi ts is key to pre- resulted in either a witch hunt of people already on claim or insur- serving fi nancial security. But only a few states have ADAP provi- mountable barriers for people making a claim. My track record of sions that even pay insurance premiums for those with incomes up only one denial in 800+ LTD and SSDI applications continues. to $44,500/year and assets under $25,000. In New York, the AIDS People on disability theoretically have far more time than Housing and Information Project (AHIP) has a lower income limit working stiff s to upgrade skills, especially since programs like the of under about $15,000 a year, but it has no asset limit. Get on these New York State Vocational and Educational Services for Individu- programs now to be “grandfathered” (i.e., remain included) later als with Disabilities (VESID) Program are more than ready to pay when the real crunch comes! Moving to a good insurance state for even multiple training programs. Th is takes enormous self- becomes an option. motivation, however, which can be compromised by HIV’s fatigue Before you move, though, be aware that in the past 10 years, and unpredictabili ty. due to HMO-ization, medical insurance has become geographically Today’s work world is increasingly technological, and technol- bound. Insurers would like nothing better than to cancel coverage ogy is evolving ever more rapidly. A dis ability time-out may work for moving out of a geographic area. to recoup health, rebuild skills, and redirect life. But, in work- As we found out in the pre-protease inhibitor era, when major obsessed America, long-term disability can become equated with illness strikes, medical insurance becomes the greatest asset; becoming obsolete in the work force. worth far more than a condominium, investment portfolio, or Retirement is the gaping hole now facing people with HIV. 401(k) retirement fund. Medical insurance is not a place to skimp. Long Term Disability income stops at age 65. Even social security Especially if you have low income and/or assets, the best medical payments may be lower for people with HIV, due to underfunding. coverage is needed to withstand the onslaught of non-reimbursed New savings plans, unlike the old Roth IRAs, can be funded with expenses and payment delays. unearned dis ability income, but, while these savings may grow tax- free, they’re a far cry from pensions and tax-deferred income plans Threatened disability benefits where employers match their funds. Disability benefi ts are threatened not because people are more Th e senior years trigger the necessity to plan for long-term care, able to work, but because insurers had expected people with HIV but HIV-positive people cannot get long-term care insurance. Even to die and are now squeezed fi nancially. Insurers already had very if they could, the premiums are very high and the coverage unregu- bad investment performance. Imagine how devastated they’ve been lated. But having HIV increases the likelihood that the illnesses of by the economic meltdown. later years may occur earlier and harder. Some insurers of individuals bought carriers insuring groups because groups are regulated by the Employee Retirement Income Unraveling safety net Security Act (ERISA). ERISA prohibits triple damages and collec- In this era of bad fi nancial advice, the worst advice ever given tion for attorney fees. As a result some people with HIV, whose dis- to anyone with HIV may be to give away assets and go onto Medic- ability benefi t is with a group, have been experiencing the sudden aid. A bad economy and the legacy of many conservative adminis- cancellation of benefi ts, off ers of piddling buyouts, and the scour- trations have combined to cut Medicaid funding, tighten eli gibility, ing of their doctor’s records for any mention that the patient feels and restrict federally mandated benefi ts. Th e social safety net is or looks good. Faced with having to sue, and lack of motivation for full of holes.
34 Positively Aware PA • September / October 2009 • tpan.com • positivelyaware.com Th at said, there are many new ways to pay for Medicaid ben- • So many medications are required that causality and treat- efi ts under the Ticket To Work program—even while going back to ment are greatly compromised. work aft er having been on Social Security due to disability. Th e pre- • Medications are so powerful today they can honestly be miums are either low or waived. Warning: local SSA offi ces may be described as 24/7 chemotherapy. ill-informed about this and programs which pay Medicare Part B & D premiums. It once took me a year and a half to get a New York Especially with good long-term prospects, the idea of a disabil- City SSA offi ce to get me the information I needed to help a client. ity time-out may be a good short or medium-term solution. Th is is Th e previous administration had even cut back that hitherto especially true where side eff ects or symptoms may have resulted sacred cow, Veterans Administration (VA) ben efi ts. When I last in poor performance in a company that’s about to downsize, be wrote on these issues in 2003, the feds suspended fur ther enroll- merged, or go bankrupt. Disability benefi ts are a good life raft to ment of non-service-connected veterans with income over the lev- reach a new safe work haven. els used by the Department of Housing and Urban Development as the upper limits for housing assistance eligibility. Th ey felt this Cash from life insurance was jus tifi ed because VA health enrollment had nearly tripled prior Th e sale of life insurance has been replaced by the accelera- to that, as veterans grew older and learned of the VA’s prescription tion of life insurance. Simply put, HIV sales dominated the viatical drug coverage. market during its many scandals. Many investors got burned and However, if you have a low income and served in the military, most of those investors now won’t deal with a company that sells you may be eligible; if so, you should apply immediately. Th is is policies from people with HIV. Th e entire industry fl ed HIV to buy especially true if you anticipate that your income may rise in the policies from seniors. future. Many government programs have a tradition of grandfa- Clients of mine have had me check their life expectancy esti- thering in people who had enrolled but whose circumstances mates with the fi rm that does 90% of this work. Universally, if the improve later. person is getting care, their life expectancy is close to normal. HIV- Since 2003, the combination of the funneling of federal funds positive people must focus on the need to plan for many years of into Pentagon budgets, the aging of our population, the shift of Baby living with the disease fi nancially as well as medically, socially, and Boomers from funding public benefi ts to starting to receive them, psychologically. and, now, the economic meltdown, has had the net eff ect of shred- Fortunately, many group life policies now carry a Living Ben- ding society’s safety net. Lesson: don’t count on public authorities efi ts or Accelerated Death Benefi ts (ADB) clause. Th is permits a to save you. person with advanced HIV, who is in danger of dying, to apply for Another change from 2003: other illness groups are learning a payout of the death benefi t. Insurers seem motivated to do this, how the HIV community managed to gain federal and state priori- since life insurance sales are down and an ADB is a sales plus—and ties in fund ing and programs. Th ey are now competing fi ercely for granting ADBs demonstrates to clients that there is an alternative the decreased funding available. Also, the bad economy has drasti- to viatical settlement. Th is can be a great fi nancial advantage for a cally reduced philanthropic giving, whether from foundations, cor- person with HIV whose condition is unstable, for all that’s required porations, or individuals, and many nonprofi ts are literally folding on many applications is a doctor’s signature. Many insurers check up shop. only that and don’t do their own independent medical reviews. Under those circumstances, it’s worth a try. The new criteria for disability Social Security revised its HIV criteria for disability benefi ts New benefits from relationships in July 2008. Th e expanded criteria now includes medication side Entering a committed relationship now pays: marriage, civil eff ects and long-term HIV-related conditions such as hepatitis C union, or domestic partnership. In the 90s, some HIV radicals and its treatment; medication-related stroke and heart conditions; were advocating that gay men marry lesbians. Now the options adult onset diabetes; lipodystrophy; peripheral neuropathy; AIDS have multiplied—but anyone considering this must realize that dementia and cognitive disorders; and HIV-related depres sion. fi nancial complications and legal ties become very important in a Most people do not know that SSA has a rule prohibiting the review relationship where benefi ts is one of the pillars of support. Partners of any SSDI benefi t where HIV is even part of the reason for dis- seeking solace from loss and long-term loneliness need to recognize ability (SSA-POMS:DI 28003.005). that these patchwork measures must be used carefully with pro- Th e very medications which saved so many from death can fessional guidance from both benefi ts/in surance/fi nancial special- have deeply disabling side eff ects: GI problems such as diarrhea, ists and partnership agreement attorneys. Th is is especially true in nausea, and cramps; profound fatigue; and sleep interruption and real estate unions. Search NOLO.com for its many self-help legal irregularity. Many things multiply the impact of these disabling guides, which have specialized for nearly 20 years on unmarried problems. relationships. With long-term neurological impacts, HIV is ever more a dis- • Th ese manifestations are unpredictable in their onset, dura- ease of competency. It’s important to maintain clear lines of con trol tion, and severity. when it comes to the complex network of sources for fi nancial sup- • Th ey occur in combination. port. It’s also important to arrange powers of attorney to provide for • Th eir appearance and pattern are complex, making adapta- situations where help is needed to write checks, deal with authori- tions diffi cult if not impossible. ties, or ensure that premi ums are paid. • HIV itself has similar manifestations and patterns, making Th ose concerned about maintaining quality of life should con- diagnosis diffi cult. sider not only powers of attorney, but also a living trust. A trust PA • September / October 2009 • tpan.com • positivelyaware.com Positively Aware 35 weigh factors such as drug resistance, treatment trends, and unpre- dictability of symptom outbreaks. It also outlines how to get fund- ing for re-skilling, how to determine new career directions, and how to trade off and balance work wants with medical needs. It spells out how to use networking, rewrite resumes, and research industry opportunities. Lastly, it deals with resume gaps, invasive interview questions, legal protections, and practical tactics for get- ting a job interview and off er and for set tling safely into a new job. Financial advice must adapt. As long as a decade ago, I was cautioning that many fi nancial People with HIV may need planning tools were inappropriate for people dealing with serious illness. For starters, 90% of fi nancial planners may have a confl ict of to protect capital, not interest if they get their income by putting people into commission- generating investments or push their brokerage’s own funds. People gamble on stocks. with HIV may need to protect capital, not gamble on stocks. Th ey may have better luck (and far lower costs) with non-profi t mutual provides instructions and control if families contest competency. fund families like Vanguard and TIAA-CREF rather than brokers. It may help protect against family will contests. It guarantees that HIV in the 90s dictated a focus on how to get people on dis- someone competent of your own choosing is always in control, and ability successfully, get cash by selling life insurance, solve cash may minimize the delays and fees of probate. Beware the cheap and debt problems, and postpone tax claims. In the 90s, I had to will! It may camoufl age a lawyer looking to handle a fee-lucrative change the way fi nancial advice was delivered. I minimized meet- estate. ings because they were expensive and draining. I found that people prefer to handle questions by phone. I realized that employment New entrepreneurship benefi ts oft en turned out to be more important than assets such as What better way to get group disability insurance and other investments and real estate. long-term, catch-up retirement benefi ts than having one’s own In the new millennium, all these changes continue to be rel- business? I’ve written extensively on the attractiveness of entrepre- evant. But now we need to focus on career—our money machine— neurship for gay people and others who may face severe discrimina- in order to stop the drain of infl ation. We have to apply for grants tion in their later years in employed positions. Longer-term pros- to get new skills for possible new jobs. We have to fi ght dirty insurer pects make it possible to start one’s own business and then make practices to keep claims secure. We have to train doctors to under- it successful. Not everyone is suited for such self-discipline and stand the impact of their statements on disability determinations. sacrifi ce, and the failure rate of small businesses is high. Motivation We need to tap lawyers specialized in relationship agreements, and focused desire are key to success, and these are also a natural apart ment law, and trusts. by-product of fi ghting serious illness. A niche business well-suited I’ve had to retool as a fi nancial advisor and advocate for HIV- to one’s experience, skills, and passion ranks right up there among positive people over the last 10 years because they now have new life’s securities and pleasures. concerns and challenges. Make sure your advisors and helpers have changed with the times as well. Returning to work Re-educate yourself fi nancially. Beware general ized pop money Sometimes, the biggest problem is leaving the hard-won secu- magazine advice. Start with a unique inventory of where you are rity of disability and public benefi ts for the uncertainty surround- now, both your advantages and your problems. Insist that whoever ing work today. Most disability policies will put people back on you rely on for advice apply guidelines geared to your unique situ- claim within six months of going back to work, but new workplace ation. It’s well worth the trouble. e coverage may not take eff ect until 12 months on the job. People who’ve run the HIV gauntlet may not be satisfi ed with Per Larson (Wharton Graduate, MBA 1972, post graduate 1976) just a job. When you’ve looked death in the eye, you may want the has helped more than 800 people successfully apply for and keep LTD meaning or enjoyment of a career. You may need a job with fl exibil- and SSDI benefi ts since 1993. He’s given workshops at Friends In ity and security that can tolerate the ups and downs of this disease. Deed, written a book on fi nancial issues—Gay Money—plus many Yet, getting a job in today’s post-dot-com world is tough, even with articles on coping with the fi nancial impact s of HIV. His articles perfect health. Consider the following: have appeared in Positively Aware, POZ, and Body Positive. He has Unemployment is up, companies are cutting back; downsizing, appeared on 60 Minutes and is quoted in Forbes, Kiplinger, Worth, which was merely fashionable, is now essential. and the New York Times. E-mail Per at [email protected]. Youth are seen as cheap to hire and easily managed, and adapt- able, with recent skills. To read more about Per’s book and read his early articles on HIV Long-term survivorship may be accompanied by deterioration fi nance, go to www.GayMoney.com. of skills and assets. Returning to work is too complicated a subject to cover here. You can also access articles by Per for Th e Body in the archive of However, my previous series of articles for Body Positive on return- back issues at www.thebody.com. ing to work shows how to assess what benefi t protections are abso- lutely needed and where risks can be taken. Th e series helps readers 36 Positively Aware PA • September / October 2009 • tpan.com • positivelyaware.com HIV Stigma and Disclosure Can social support help?
by Zoltan Nabilek
ne might wonder how much our ment, limitation of opportunity, and nega- level of willingness to disclose their HIV- O friends and family infl uence our tive change in social identity. positive status. lives. Being HIV-positive, we rely Perceived stigma may lead to vari- Th e primary purpose of this study was on our social network for advice, emotion- ous outcomes, including negative changes to explore and gain an understanding of al support, and information. In order to in self-concept and emotional reactions factors that facilitate HIV disclosure to sex receive this support, we have to disclose our toward those who may invoke the stig- partners, as well as the barriers that prevent HIV-positive status. Disclosing one’s status ma.1 HIV-positive individuals are likely to disclosure, from the perspectives of HIV- almost always has some risk attached to it. inform their signifi cant others once they positive gay men. We might be rejected by the friend or family perceive that the rewards of the disclosure Th e study sample was drawn from a member, or might suspect discomfort from outweigh the associated costs.2 social service agency in Chicago that pro- them when they fi nd out about our status. Disclosing an HIV-positive status vides a variety of programs to HIV-positive Th e advantages of disclosing one’s positive can result in the gain of emotional, physi- people. Participants were between the ages status are well known, and one of them is cal, and social resources. Th e emotional of 18 and 63, all indentifi ed as gay, more that there is a “practice eff ect.” Aft er care- benefi ts include social support, relief that than 90% of the participants identifi ed fully considering when and to whom to dis- comes from sharing a burdensome secret, themselves as white, and more than 60% close, we might receive a positive response and the built-in reward of educating others reported having been diagnosed with HIV from our social network. This positive about HIV.3 Reasons for nondisclosure are more than four years ago. Despite the long experience could encourage us to disclose identifi ed as fear of rejection, fear of stigma, duration since diagnosis, more than 60% of our status to others as well. privacy, self-blame, and missed sexual situ- the individuals were not aware of their CD4 On the other hand, negative experi- ations.4 Th ese reasons are justifi ed by the count, and 80% of them reported receiving ences like rejection, and sometimes even discloser’s desire to reduce negative conse- HAART treatment. Th ere was no signifi cant physical abuse, contribute to one’s percep- quences. relationship between the lengths of diagno- tion about the social environment’s views In my recent research study, I assessed sis; presence of HIV-related symptoms or on HIV. Th e main thing aff ecting a per- how HIV stigma and social support infl u- medication-related side eff ects; race or age son’s perception of HIV stigma is the HIV- ence the readiness of HIV-positive indi- demographics; or health status indicated positive person’s awareness of HIV-related viduals to disclose their status to their by a CD4 count and perceived HIV stigma; actual or potential social disenfranchise- sex partners. Th e study provided possible social support; or confi dence to disclose scenarios in which individuals rated their one’s HIV-positive status to sex partners. PA • September / October 2009 • tpan.com • positivelyaware.com Positively Aware 37 Th e individuals in the sample were need to disclose their HIV status. Th e goal found to have a wide range of perceptions of communication about protective sexual of HIV-related stigma. Perceived social behavior is not necessarily self-protective in support was not associated with readiness the case of HIV-positive individuals; rather, to disclose HIV-positive status to sex part- such communication may be selfl ess in ners. As previous studies have indicated, nature, stemming from a desire to protect there are other predictors for HIV disclo- others. sure to sex partners, such as type of sexual Disclosing one’s HIV-positive status relationship and adult romantic attachment may contribute to improved psychological style. Moreover, because this study did not well-being if those disclosed to respond in inquire about the context of the partici- a helpful manner. It is likely that a group pants’ social support networks, it is possible of HIV-positive individuals could also that many members of these networks may provide a wide range of valuable resources, be individuals who are HIV-positive them- both physical and emotional. For example, selves. Th is might be the case in this par- HIV-positive gay men can provide infor- ticular study, because all of the participants mation about treatment options, fi nancial were recruited from an organization which “I’ve told assistance, sick care, emotional support and off ers opportunities for HIV-positive peo- all but reassurance that one is loved and valued ple to meet each other and engage in formal within the gay community despite his HIV- and informal interactions. Th is would be family, who positive status. HIV-positive gay friends can consistent with what has been reported by also provide empathy, familiarity and trust older HIV-positive individuals, with their have issues.” to someone with the same HIV status. Dis- friendship networks oft en including a large closure to individuals whose HIV-positive number of HIV-positive older adults. status is known or assumed does not, how- Th e fi ndings showed that individuals HIV-positive status might indicate that the ever, always help individuals develop the in the study who indicated a greater level of positive partner has had negative experi- skills necessary to disclose HIV-positive social support experienced a reduced level ences with disclosure, and is not willing status to individuals with an unknown or of HIV stigma. It appears that social sup- to risk the consequences that a disclosure HIV-negative status. port is critical for individuals to lower their could potentially cause. Social support, Additionally, personal remarks on six perception of negative attitudes regarding which likely originates from other HIV- questionnaires included comments about HIV status. It was therefore determined positive gay men, provides encouragement HIV-positive status disclosure, such as, “I that a higher level of social support was for individuals to initiate safer-sex practices think love must protect him; I’d love to be associated with lower levels of perceived with sex partners, but doesn’t increase the strong;” “I’ve told all but family, who have HIV stigma, and that social support possi- tendency to disclose HIV-positive status. issues;” and about HIV, “I’d like to kill the bly played a signifi cant role in how stigma It appears that this community endorses fucker, but until then, I’ve learned to get on, was perceived. a sense of moral obligation to protect sex getting on.” Th e study did not fi nd a relationship partners and thus initiate protected sexual Disclosure is intimately related to how between social support and readiness to activity. Th is hypothesis deserves attention communities stigmatize or accept HIV and disclose one’s HIV-positive status to sex in future research. how individuals perceive themselves, their partners. Moreover, disclosing one’s HIV- Another interpretation suggests that identities, and their roles within the com- positive status to sex partners is important HIV-positive individuals seek out partners munity. Th e need to express thoughts and from the standpoint of informing the sex who are also HIV-positive. Th is might be feelings about this experience was evident partner about risk; however, disclosure the case, especially if one considers that by the personal comments on the question- alone is not enough to induce safer sex most of the individuals in this study had naires. It appears that studies which assess practices. It is possible that individuals been diagnosed with HIV longer than four HIV-positive individuals’ experiences in a who are confi dent enough to engage in years ago. During this time, they might non-judgmental manner are welcomed and safer sex practices are doing this as a way have been involved in a social group com- appreciated within the HIV-positive gay to avoid disclosure. Even though they will prised mainly of HIV-positive members community. e not admit their HIV-positive status, they whose status is well known to others, which feel initiation of safer sex practices fulfi lls makes disclosure unnecessary and com- Zoltan Nabilek is a doct oral candidate their moral obligations. Th e study found mencement of safer-sex practices extremely at the Illinois School of Professional Psy- a relationship between social support and important. It’s also possible that belonging chology and has worked in the HIV fi eld self-effi cacy to initiate safer sex practices. to such a social support group provides for four years. Originally from Hungary, he Although there is not direct evidence from opportunities for better general commu- organized social support groups and wrote this study, this tendency can be interpreted nication skills, which might be associated the monthly feature “Th inking Positive” in a to mean that individuals perceive safer-sex with better communication about safer sex Hungarian gay magazine for two years. practices as a secure approach to address practices. Also, individuals in this sample their HIV-positive status. To initiate safer may have learned to incorporate safer sex References available online at www. sex practices rather than disclosing one’s behaviors into their activities without the positivelyaware.com. 38 Positively Aware PA • September / October 2009 • tpan.com • positivelyaware.com Glossary of HIV Terms
Note: A paperback medical dict ionary can be found What those medical words mean for around $7. Visit www.aidsinfo.gov for a more complete glossary. Originally written and compiled by Enid Vázquez
A - C being given. Participants do, however, know what they may pos- sibly be receiving. Blinding helps eliminate bias. active: refers to the eff ectiveness of drug therapy. For example, blip: refers to a temporary increase in viral load (usually within 50 “His medications remain active [eff ective] against his HIV.” to 400) that then goes back down A-CACTG: see “AIDS Clinical Trials Group” boosted protease inhibitor: a protease inhibitor whose blood ACT UP: AIDS Coalition to Unleash Power, an activist group levels are increased with a small booster dose of the HIV drug formed in 1987. Norvir (ritonavir), the only medication currently used for this acute HIV infection: recent infection (within the previous six purpose months) CA-MRSA: see “MRSA” acute retroviral syndrome: symptoms that may be experienced CCR5 co-receptor: one of two co-receptors on the surface of during acute HIV infection, such as fever (including night T-cells that HIV uses to enter the cell sweats), diarrhea, nausea and vomiting, and headache. CCR5 inhibitor, CCR5 antagonist: a drug that blocks HIV’s use adherence: taking medications as they should be taken (with or of the CCR5 co-receptor without food, on time, etc.). CD4+ T-cell: a T-cell with a CD4 receptor on it. HIV’s favorite adverse event: a negative drug side eff ect. A serious AE is one source for infection and spreading through the body. Oft en that is rated Grade 3–4, with 3 being “severe” and 4 being “life- referred to simply as “T-cells.” threatening.” clinical progression: an HIV-related event, generally refers to dis- AIDS: Acquired Immune Defi ciency Syndrome. Advanced disease ease or death of HIV infection. clinical: refers to actual eff ects on a patient’s health. For example, AIDS Clinical Trials Group: the largest and most prestigious net- “Th e clinical eff ects are still unknown.” Also refers to care that work of HIV-related studies in the U.S. “ACTG” for short. Th ere people receive in a clinic, such as lab tests. is a pediatric ACTG as well as one for adults. cocktail: refers to a drug combination antibody: a protein that the immune system forms to fi ght germs cognitive: refers to the working of the mind and other unwanted elements entering the body. Hence, the co-factor: substances, microorganisms, or characteristics of indi- immune system forms HIV antibodies when the virus enters viduals that might infl uence the progression of a disease or the the body. likelihood of becoming ill antiretroviral: an HIV drug (“anti-retroviral” means a drug that contraindication: refers to things that should not go together, such treats a retrovirus, like HIV). “ARV” for short. as medications that can not be taken at the same time. arm: in research studies, one of the groups being studied. For control: in research study, something is tested against a “control.” example, “Participants in one arm were given once-daily doses For example, a placebo-controlled study compares an experi- of the drug.” mental treatment to a placebo. assay: a test co-morbidity: another illness besides HIV ASO: short for “AIDS service organization” compassionate use: the availability of an experimental drug or backbone: refers to the drugs someone is taking along with the treatment for people who are seriously ill medication considered to be the “star” of their treatment com- CROI: Conference on Retroviruses and Opportunistic Infections, bination. For example, “He takes a backbone of two NRTIs with the largest HIV medical conference in the country Sustiva.” cytomegalovirus: a herpes virus considered an opportunistic Bactrim: an antibiotic pill used to prevent a pneumonia (PCP) infection. “CMV” for short. In AIDS, most commonly known seen in people with AIDS for infecting the eyes, potentially leading to blindness, but can bioavailability: rate and extent to which a substance is absorbed invade other organs. and circulated in the body blind, double-blind: when study participants don’t know what they’re receiving. “Double-blind” means that neither the researcher nor the participant know what the participant is PA • September / October 2009 • tpan.com • positivelyaware.com Positively Aware 39 D - G M
Data Safety Monitoring Board: an independent group of medi- MRSA: drug-resistant staph, stands for “methicillin-resistant cal providers and community representatives that oversees a Staphylococcus aureus.” “CA-MRSA” stands for “community- D-Gresearch study. “DSMB” for short. Macquired MRSA.” Pronounced “mersa.” discordant couple: when one person has HIV and the other MSM: stands for “men who have sex with men,” a category that doesn’t. Also called “sero-discordant.” includes males whether they consider themselves to be gay or discordant response: when T-cells rise but viral load does not not. Some MSM identify themselves as straight. drop, or vice-versa (viral load drops but T-cells do not rise), mutation: in HIV, refers to the virus changing itself in order to get while on therapy around the eff ects of medications. double-blind: see “blind” drug interaction: an eff ect that one drug has on another; an inter- N - O action could be positive or negative dysplasia: abnormal development in skin, bone, and other tissues. neuropathy: any abnormal, degenerative, or infl ammatory state If left untreated, may lead to cancer. of the peripheral nervous system; symptoms include numbness, etiology: the cause of a disease N-Otingling, or pain in the extremities (hands and feet). expanded access program (EAP): drug made available before fi nal non-inferiority study: an FDA-required standard; tries to show FDA approval to persons in great need of it that the experimental treatment is not less eff ective than stan- false positive: when an HIV test mistakenly notes that someone is dard-of-care positive for the virus. nurse practitioner: a nurse who can prescribe medicine FDA: short for U.S. Food and Drug Administration, which off-label: refers to the use of a medication for which it is not approves all medicines and medical devices on the market in approved, but for which there is evidence of eff ectiveness. this country open-label: a drug study in which researchers and participants genotype resistance test: looks at the genetic make-up of a per- know what drugs or treatments, including experimental, are son’s HIV to help determine what medications would work. See being given also “phenotype resistance test.” opportunistic infection: caused by a microbe that can normally exist peacefully in a person’s body, but which can cause illness H - L when the immune system is weak, OI for short optimized background therapy: usually used in clinical studies; hepatotoxicity: toxicity in the liver refers to studies where a person’s current therapy is improved highly active antiretroviral therapy: powerful HIV drug combi- with available medications (“optimized”). A person may or may H-Lnation. “HAART” for short (pronounced “heart”). not receive the experimental drug being tested in the study (on HIV: human immunodefi ciency virus. top of their OBT). holistic: looking at physical, spiritual, emotional, and mental aspects of an individual (the “whole” person) P host: the person with a disease. For example, “A variety of host factors can infl uence the progression of HIV.” p24 antigen: a protein fragment of HIV HVTN: HIV Vaccine Trials Network P450 pathway: the pathway through which many drugs, herbs, immune reconstitution inflammatory syndrome (IRIS): illness Pand supplements are metabolized in the liver; oft en the reason occurring when the immune system becomes stronger with certain herbs/supplements can’t be taken with drugs therapy and begins to activate underlying pathogens in order Pap smear: a test that collects cells from the cervix or anus to check to fi ght them for cancer or pre-cancerous changes. Named for Papanicolaou, immunologic: refers to the immune system, such as “immunolog- the doctor who invented the test. ic response,” “immunologic progression,” etc. In HIV therapy, pathogen: a microorganism that can cause disease. Pathogens “immunologic response” refers to CD4+ T-cells, while “virologic include viruses, bacteria, fungi, and parasites. response” refers to viral load. pathogenesis: origin and development of disease. in vitro: in the test tube pelvic inflammatory disease (PID): infl ammation of the pelvic in vivo: in the body area, which may lead to infertility, ectopic pregnancy, or scar- late breaker: refers to medical reports accepted late at a confer- ring of the fallopian tubes. PID is usually caused by untreated ence sexually transmitted infections, such as chlamydia or gonor- lipoatrophy: loss of fat. HIV medications have been associated rhea. with loss of fat in the arms, legs, and face (facial wasting). peripheral neuropathy: a disorder of the nerves, usually involving lipodystrophy: a potential side eff ect of HIV therapy that may the hands, feet, arms, and legs. A potential side eff ect of some include increased blood levels of cholesterol and triglycerides; HIV medications. loss of fat in the arms, legs, and face (see “lipoatrophy”); and Phase 1, 2, 3, and 4: the four stages of a clinical study. “Pre-clin- increased fat in the stomach and upper back (buff alo hump) ical” generally refers to test tube measurements or testing in animals. phenotype resistance test: a test tube measurement that puts an HIV blood sample against each of the HIV drugs to see which 40 Positively Aware PA • September / October 2009 • tpan.com • positivelyaware.com ones are eff ective against that particular individual’s virus. See also “genotype resistance test.” placebo: a dummy pill used in studies. Placebos are used to see if the experimental treatment makes a diff erence. See “control.” post-exposure prophylaxis: HIV medications taken aft er expo- sure to the virus in an attempt to avoid infection. “PEP” for short. pre-exposure prophylaxis: HIV medications taken before expo- Living Positively with Heart sure to the virus in an attempt to avoid infection. “PrEP” for short. Not yet a medical standard. PrEP is still being studied Living Positively with Heart is a research study for effi cacy. exploring how people with HIV prefer to learn prophylaxis: something used as prevention. For example, con- about HIV and heart health. Information from doms are a prophylaxis against disease. this study will be used to create better information protocol: In medicine, refers to the plan for a study or course of about heart-healthy, positive living for people treatment. infected with HIV. providers: health care workers, may refer to other services, such as If you are HIV-positive and over the age of 18, those of social workers we invite you to share 15 minutes of your time PWA: short for “people (or person) with AIDS” to participate in this study by completing a PWH/A: short for “people (or person) with HIV/AIDS’ brief survey.
R - S After completing the survey, you will receive a $10 Target gift card as our thanks. If you wish, you can also choose not to receive the gift randomized: in a research study, the process of placing people into card and complete the survey anonymously. diff erent categories in a way that avoids skewing the results. R-Srapid HIV testing: an HIV test that gives results in 20 minutes. To learn more and find out how to join the rebound: generally used to refer to a rising viral load, especially to study, go to http://survey1.ceoutcomes.com the level it was when therapy was started regimen: treatment combination resistance: the ability of microbes, including HIV, to change their ©2009, American Heart Association 07/09DS3023 structure so that drugs can no longer aff ect them retrovirus: a virus that works “backwards,” diff erently from most treatment-experienced: a person who has experience with anti- viruses. Most viruses use their DNA to change a person’s RNA. retroviral therapy A retrovirus uses its RNA to insert itself into a person’s DNA. treatment failure: generally refers to a detectable viral load, or a salvage therapy: advanced therapy; the second or third, etc. round; rising one, while on treatment for people with advanced disease treatment-naïve: someone who has never taken HIV medicine. second generation: refers to a new drug that works diff erently trial: another word for a research study from the older medications in its drug class. Usually refers to an tropism: the type of co-receptor that HIV can use to enter a cell. improved resistance pattern (harder for HIV to develop resis- A person’s HIV can be “CCR5-tropic,” “CXCR4-tropic,” “dual tance to). tropic” (the virus uses both co-receptors), or “mixed tropic” (the seropositive: in HIV, means a person tests positive for the virus virus is partially CCR5-tropic and partially X4-tropic). sero-discordant: generally refers to a couple where one person is undetectable: a viral load below the limit of a test’s detection, HIV-positive and the other is not generally 50. Virus is still in the person’s blood, but not at a level serum: the clear, thin, and sticky fl uid that separates from blood that can be picked up by the test. when it clots. Serum, not whole blood, is the actual fl uid used for ultrasensitive assay: in viral loads, a test that measures as low as measuring T-cells and viral load. 50 copies/mL viral load sexually transmitted infection: exactly what it says. “STI” for vertical transmission: HIV infection passed on from a mother to short. infant during or around the time of pregnancy, or during breast- suppressed: “suppressed virus” is one of the goals of HIV therapy, feeding simply, keeping the viral load down as low as possible, ideally at viral load: the quantity of virus measured in blood (serum), other undetectable levels fl uid, or tissue susceptibility: when HIV has not developed drug resistance to a virologic: refers to blood. In HIV, “virologic” usually refers to viral medication and that medication can still eff ectively fi ght it load. wild-type virus: virus that has not developed resistance. Oft en the T - Z type of virus with which a person is infected, although people can be infected with resistant virus. e T-cell: An immune system cell that is made in, and released from, the thymus (hence the letter “T”). Also called T-helper cells. See Sources include AIDSInfo at the National Inst itutes of Health T-Zalso “CD4+ T-cell.” and the Project Inform HIV Drug Book.
PA • September / October 2009 • tpan.com • positivelyaware.com Positively Aware 41 Resources Where to fi nd more information on HIV/AIDS Compiled by Enid Vázquez
Washington, D.C. CA 90024-3721, call 1-310-943-5858, or 20005, or call 1-202- visit hivplusmag.com. Below is a short list of hotlines, websites, and publications 393-4930. BETA. From the San Francisco AIDS with excellent and easy-to-underst and information. Included is California Prison Foundation. Very long articles. Write a sect ion on one-page fact sheets for quick information. Focus. Advocacy 995 Market Street, Suite 200, San Fran- for medical care. cisco, CA 94103, call 1-415-487-3000, or Newsletter includes visit sfaf.org. articles by inmates. Blocking the Mutant Invasion. Cartoon Hotlines Write 1904 Frank- brochure explaining HIV drug resis- lin St., Suite 507, Oakland, CA 94612, or tance. Visit freehivinfo.com. CDC (U.S. Centers for Disease Control call 1-510-836-7222. POZ. Magazine. See also personals, blogs, and Prevention), 1-800-342-AIDS Osborne Association AIDS in Prison and factsheets online. Write Smart + (2437) or 1-800-344-SIDA (7432). 24 Project. Assists inmates in the state of Strong, 500 Fifth Avenue, Suite 320, hours. STI (sexually transmitted infec- New York and their families. Job and New York, NY 10110-0303, call 1-800- tion) information provided. Referrals life skills training, court advocacy, fam- 9-READ POZ (973-2376), or visit poz. to state hotlines, which direct people ily services, and discharge planning com. to local services. Write to 1600 Clift on (including on-site at Sing Sing, Fishkill, Road, Atlanta, GA 30333 or visit cdc. Downstate, and Greenhaven). Inmates Activism gov. can call the hotline collect Tuesdays, Project Inform, National HIV/AIDS Wednesdays, and Th ursdays from 3–8 ATAC (AIDS Treatment Activists Coali- Treatment Hotline, 1-800-822-7422 p.m., 1-718-378-7022. Call the Family tion). Projects include the Fair Pricing for U.S., and 1-415-558-9051 for inter- Resource Center toll-free at 1-800-344- Coalition and the Drug Development national calls. Visit projectinform.org. 3314. Write 809 Westchester Avenue, Committee. Write ATAC, At the Net- Women Alive. 1-800-554-4876. Bilingual Bronx, NY 10455 or 175 Remsen Street, work, 611 Broadway # 613, New York, (Spanish/English). Write 1566 Burnside 8th Floor, Brooklyn, NY 11201. Visit NY 10012, call 1-617-267-0998, or visit Ave., Los Angeles, CA 90019, call 1-323- atac-usa.org. 965-1564, or visit women-alive.org. Comprehensive websites CHAMP. Community HIV/AIDS Mobi- lization Project. Trainings, including Guidelines Aidsmap.com. From Great Britain. Daily webinars, and eff orts such as the HIV news update. Factsheets illustrated with Prevention Justice Alliance and Project AIDSInfo. HIV treatment guidelines cartoon drawings. Unshackle. Call 1-212-937-7955, or visit from the U.S. Department of Health AIDSmeds.com. Lots of news and lab champnetwork.org. and Human Services (DHHS). Write trackers. Click on words you don’t know AIDSInfo, P.O. Box 6303, Rockville, MD to get the defi nition. African Americans 20849-6303, call 1-800-HIV-0440 (448- i-base.info. HIV-specifi c. From Great Brit- 0440), or visit aidsinfo.nih.gov. ain. Lots of medical updates. Black AIDS Institute. News and person- KFF.org. From the Kaiser Family Founda- al stories. Outreach projects. African Factsheets tion. Sign up for the Daily HIV/AIDS American HIV University for week-long Report (news). training. Write 1833 W. 8th St., Suite 200, New Mexico AIDS InfoNet, aidsinfonet. TheBody.com. HIV-specifi c. Tons of news, Los Angeles, CA 90057, call 1-213-353- org. Factsheets in several languages. personal stories, and medical informa- 3610, or visit blackaids.org. See also, on this list: AIDSmeds, CDC, Th e tion, including health trackers and med- Greaterthan.org. Part of the U.S. Act Body, and POZ. ical providers answering questions. Against AIDS initiative.
Prisons Publications Government
ACLU National Prison Project. Advo- Positively Aware. Magazine from Test AIDS.com. Facts and policies. cacy and litigation. Prisoners Assis- Positive Aware Network. See box on tance Directory (available online only). next page. Exercise and nutrition Newsletter ($2 for prisoners). Free STD AIDSPlus. Magazine. Write 10960 booklet. Write 915 15th St., NW, 7th FL, Wilshire Blvd., Suite 1050, Los Angeles, PoWeRUSA.org. Also treatment advocacy.
42 Positively Aware PA • September / October 2009 • tpan.com • positivelyaware.com s Women BABES Network. A program of the Positively Aware and Test Positive Aware Network YWCA in Seattle. Lots of personal sto- ries on website. Monthly newsletter in Positively Aware is the bi-monthly national HIV magazine of Test Positive Aware Spanish/English. Support groups, peer Network (TPAN), the oldest peer-driven HIV service organization in Chicago. Positively counseling, education, events, advoca- Aware covers treatment and medical news, political, legal, and fi nancial information, cy, and anti-stigma campaign. Write to personal profi les and interviews, and socially conscious commentary on issues of inter- 1118 Fift h Ave., Seattle, WA 98101, call est to those living with or aff ected by HIV/AIDS. For a subscription form see below, or 1-206-720-5556 or 1-888-292-1912, or [email protected] visit babesnetwork.org. TPAN provides HIV knowledge training (TEAM, Treatment Education Adherence Sister Connect Warmline. A program Management), case management, walk-in syringe exchange, recovery programs, a vari- of the New Jersey Women and AIDS ety of support groups, prevention outreach and interventions, and monthly forums and Network. Provides information and updates for providers and for patients with HIV. support on women’s health, including TPAN is open Monday through Th ursday from 9:00 a.m. to 9:00 p.m. and Friday family planning and reproductive ser- 9:00 a.m. to 6:00 p.m. Access Community Health Network has a branch clinic at TPAN; vices, and HIV testing sites across the call 773-271-1439. Write to 5537 N. Broadway, Chicago, IL 60640, call 773-989-9400. We country. Call 1-800-747-1108 or visit can be reached through a variety of Internet sites: njwan.org. SMART University. Sisterhood Mobi- www.positivelyaware.com lized for AIDS/HIV Research and (current issue, archives, community forum and blogs) Treatment. Treatment and prevention education. Addresses self-confi dence www.tpan.com and self-esteem. SMART also holds (services, events, TPAN news) classes in art, nutrition, and computer training, and runs a prevention out- www.facebook.com/positivelyaware reach program. Write 306-308 West 38th St., 6th Floor, New York, NY www.facebook.com/testpositiveawarenetwork 10018, call 1-212-564-3282, or visit smartuniversity.org. www.twitter.com/tpanetwork The Well Project. Developed by and for women living with HIV. Visit thewell- project.org.
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PA • September / October 2009 • tpan.com • positivelyaware.com Positively Aware 43 Ask the Submit your questions for Ask the HIV Specialist to [email protected]
This issue’s specialists: Dennis Myers MSN, FNP, AAHIVS
DEAR HIV SPECIALIST, If your T-cells continue to drop over time, your adherence is back I am a 49-year-old female and have been positive since 1995. I am to 100%, and you remain undetectable, you may be experiencing currently on meds. My T-cell count is currently 700. It was 1,100 a “immunological failure.” A genotype test can’t be used to check for year ago, but I am still undetectable. Should I consider a different HAART failure until your viral load is greater than 1,000 copies. med regimen? My doctor says there is no concern unless my virus Any regimen may begin to lose its potency over time. A complete becomes detectable. HAART review is in order for you. Your counts are still excellent. At what CD4 count level your regimen should be changed is a Signed, Worried purely clinical decision at this time. I would repeat your counts every three months to follow this trending. Monitor your physical DEAR WORRIED, signs and symptoms. Correlate these with your counts. Given your There is always room for healthy, knowledgeable concern. concern, if your T-cell count drops to 500, suggest to your provider HAART (highly active antiviral therapy) failure is multi-factorial. a HAART change may be needed. If either of you are unsure as to T-cell counts fluctuate. Adherence is always the first thing to check what to switch to, consult with an HIV specialist. Take heart and if you suspect a problem. Are you 100% faithful to your regimen? keep taking your HAART. Congratulations on being undetectable Do you take your HAART at the same time every day? Drug blood and surviving this long. levels will drop if med routines are inconsistent over time. A viral load breakthrough or a drop in your T-cells can result. I watch DEAR HIV SPECIALIST, count “trends” and correlate them with how my client is “feeling.” I am a 24-year survivor and am 64 years old. During the 80s or early 90s I read an article in some gay publication that explained that if one’s mouth was healthy (no bleeding gums, no ulcers) one could Is your provider an AAHIVM-credentialed HIV swallow cum and not be concerned about contracting HIV because Specialist™? the natural stomach acid destroyed the virus. Am I delusional? If you are living with HIV, you have a lot of choices to make when seeking care and treatment. One of your most Signed, Swallow or Spit important choices is your health care practitioner—so why not choose someone who is knowledgeable about HIV and DEAR SOS, experienced in its treatment? Swallowing sperm is not the real issue. Any type of oral sex can be potentially hazardous. Your body’s first line of defense is intact skin The American Academy of HIV Medicine (AAHIVM)’s and mucous membranes. I view the mouth as “the mirror of the HIV HIV Specialist™ credentialing program is the first and soul.” Signs of illness and a depressed immune system can show up only clinical credentialing program offered domestically first in the oral spaces. Your gums, mouth, and esophagus are fragile, and internationally to physicians (MDs and DOs), nurse subjected to daily hazards such as toothpicks, toothbrushes, pencils, practioners, and physician assistants specializing in HIV fingers, foods, and chemicals. You may not always be aware of breaks care. HIV care providers become designated HIV Specialists™ in the oral membranes. There is a slight potential of contracting after meeting experience and education requirements, and successfully completing a rigorous exam on HIV-specialized HIV by exposing your oral mucous membranes to HIV-infected care. Look for the letters “AAHIVS” after their name. sperm. The level of HIV virions is greater in sperm and vaginal secretions than in blood. But I would be more worried about syphilis, Locate an HIV Specialist™ gonorrhea, herpes, warts, and just plain bacterial infections from Your search for an HIV Specialist™ is easy with AAHIVM’s lack of basic oral hygiene. The effects of these would appear sooner. online Find-A-Provider directory at www.aahivm.org. Just Inspect your partner’s lips and genitalia before engaging. “Turn the click on the “Find-A-Provider” window on the homepage, key lights on” if you must. The use of dental dams and condoms should in your location and click on the search button for a list of be the rule not the exception. Congratulations on your surviving this HIV Specialists™ near you. long. Take heart and keep taking your HAART. e Due to space limitations, not all submitted questions can be Dennis Myers, MSN, FNP, AAHIVS answered in this column, but every effort is made to ensure Clinic Director you receive the information you have requested. For more Matthew 25 AIDS Services, Inc. information about AAHIVM, call 202-659-0699 or visit www.aahivm.org. Henderson, Kentucky
44 Positively Aware PA • September / October 2009 • tpan.com • positivelyaware.com WWholisticholistic PPictureicture
What’s Next?
Beyond the test
by Sue Saltmarsh
kay, so aft er days, weeks, or months of worrying that you yourself this kind of consideration and care can make a huge dif- O might have been infected with HIV, you’ve taken your ference. 3-month test and are sitting in a room with a counselor Also, diet and sleep are very important. Get a good eight hours who looks at you with basset-hound eyes and tells you the bad news. of sleep every night or take naps during the day. Fatigue is one of Besides going into deer-caught-in-the-headlights shock, what do the most common side eff ects of almost every medication, as well you do next? as HIV itself. If you understand that your energy levels are going to First, cry, yell, curl up into a ball—whatever you do, be in your be diff erent than they were before, you’ll be less likely to push your- Truth with it. Denial won’t do you any good and you might as well self beyond your new limits or to have unrealistic expectations that begin this journey accepting, even embracing, the intensity of the turn into frustrations. See the article on page 24 for some dietary emotions you’re feeling. guidelines. Next, decide whether you’re going to tell your family, friends, sexual partner(s), boss, etc. Of course, it’s up to you to decide who to share this information with, but one thing to think about is that the only way stigma and discrimination can survive is by being per- petuated by the shame and secrecy of those it targets. It may seem inconceivably hard, but if you don’t act ashamed, it will be harder The good news, if you for others to make you feel that way. If you decide to go this alone, start searching for an ASO (AIDS can believe there is service organization) that provides education, support groups, and any, is that you’re now case management services. Th e good news, if you can believe there is any, is that you’re now part of a very insular community—if your part of a very insular family rejects you, your boyfriend abandons you, and your friends start avoiding you, there is literally an entire world out here of HIV- community. positive people who are willing to become your helpers, your teach- ers, your friends, your lovers, and your family. Most will know what you’re going through because they’ve been there themselves. Don’t Fortunately for you, there has been great progress made in deny yourself this invaluable resource. terms of the meds HIV-positive people take. It used to be up to 21 Th en there’s the issue of money. If you aren’t independently pills per day, taken within rigid timelines, with or without food. wealthy, don’t have insurance, and don’t want to ask your family for Now there’s Atripla, a one-pill-daily combination, a commonly help, Medicaid might be your only viable option. Th e prospect of prescribed medicine for fi rst-time treatment and it’s usually well sitting in some offi ce all day signing up for it may be daunting, but tolerated. not as daunting as the cost of medications, doctor visits, lab work, In any case, when you and your doctor decide it’s time to start etc. You can also check into signing up for your state ADAP (AIDS taking meds, know that you’ll have to commit to taking pills for the Drug Assistance Program)—each state has their own rules, so more rest of your life. Th ere is no cure for HIV/AIDS. Just as there are bureaucracy will have to be endured! people all around you who control their diabetes, their cancer, and Th en you must fi nd a doctor, if you don’t have one you trust their heart disease with the right medications, you can be someone already. It’s best to fi nd a doctor who’s an HIV specialist or at least who keeps their HIV under control. experienced in treating HIV-positive patients. Th e most important So what are you afraid of? Change? HIV-positive or not, you thing to realize is that you and your primary care doctor are the cannot live your life fully without it. And one of the most wonder- foundation of the team that will keep you alive and well, so you ful things I’ve learned from having my life full of people living with have to be able to ask questions, discuss treatment options, report HIV/AIDS is not to waste time on the bullshit stuff , but to focus on any changes you notice—if you can’t do that, fi nd another doctor! what really matters. Just because you did turn out to be positive, Th ere are some practical, everyday things you should do too— your life isn’t over, it’s just diff erent! And many of the diff erences eliminating stress is one of the best ways to keep your T-cells up and can be growthful and benefi cial for you if you let them. So when the your viral load down, so do whatever you have to in order to make last tear has been shed and you’ve uncurled and gotten out of bed, that happen. Go to the gym, take yoga classes, read good books, look this new life in the eye and, with the courage and curiosity of pray, take bubble baths, whatever is right for you, to create a safe, all great explorers, demand to know “What’s next?” dedicated time and place that you know you can rely on. Giving Breathe deep and live long. e Photo © RussellPhoto McGonagle PA • September / October 2009 • tpan.com • positivelyaware.com Positively Aware 45 SSalientalient RRamblingsamblings PA Online It’s the End of the World as We Know it
(and I feel fi ne)
by Sal Iacopelli
hate surprises. Surprises, being caught Th e day of my results, I sat nervously • Develop / nurture a support system I off -guard, being unprepared. Okay, I with two friends, fully confi dent that if I • Educate yourself on treatment have a few control issues, but really, it’s was indeed positive, I could handle it. My options all about self-preservation. doctor informed me he didn’t have the • Treat your healthcare practitioner I was in my 20s in the 80s. Not the results in hand, but got verifi cation on the as an equal opportune time to be hyper-sexually active. phone that my test came back. Negative. • Eat well Bookstores, bathhouses, bars, backstreets. Woo-HOO! I was elated beyond belief and • Keep recreational substances to a My wardrobe consisted of shades of black, felt my life stretch infi nitely before me. I did minimum with clunky black shoes. Ah… days gone many things to celebrate, including buying • Rest and get enough sleep by. In the 80s, typically what happened was two pairs of clunky black shoes. • Exercise you got ill, went to a doctor, was diagnosed Two days later, my doctor phoned to • If on meds, be compliant, be com- with AIDS, and were gone within two years. tell me he had received my test results in pliant, be compliant My thought was, well, if I do test positive, hand… he had been mistaken. Th e results • I know this is maddening but… try what would I do diff erently? Nothing. So, I were inconclusive and I had to retake the to keep stress to a minimum waited and acted as if I were positive and test. My elation vanished. Th ree days later, • Keep your heart open and love oth- took care of myself as best as I could. July 5, 1993, I was again in his offi ce with ers as well as yourself This Issue’s Poll I put off taking THE TEST for the lon- my supportive test buddies. I looked into gest time due to the fact that, “back then”, the deep pools of his dark brown eyes and I am so not suggesting anyone should there were few options for people who test- heard him report, “the results are posi- be a perfect little HIV robo-tron. Hell, I ed positive. Th ank you very much, Ronald tive.” I had been emotionally prepared to most certainly am not the ultimate HIV- Reagan, who consistently and methodi- hear that result from the fi rst test, but aft er positive role model. I am a dedicated smok- cally ignored AIDS until it was impossible the reprieve of thinking I was negative, I er, at least a pack a day, thank you, with to ignore. Yet, he is now hailed as one of was stunned. But not stunned enough to an occasional cigar. I eat well, but live for our greatest leaders? Th e bitter bile of rage not contemplate the soft ness of his lips or carbs, red meat, and dairy products. I have rises to my throat every time I travel I-88, to forgo buying two more pairs of clunky a Sicilian family who has an inclination for coined the “Ronald Reagan Expressway.” black shoes. drama, capital D. I drive recklessly, still love Th e only “leader” (and I do use that term At that time, there was no viral load the occasional “backstreet congress,” and loosely) worse than Reagan was “Dubya,” test, but luckily, my T-cells were in good drink coff ee by the gallon. the destructive sum’bitch bloodsucker. Ah, shape. Aft er a bit, I pulled myself out of But I also strive to keep those pleasant but I digress... the pit of despair and faced the hand I was pastimes in check and connect with friends, In the early 90s, I took a job at the now dealt. I hold that I was able to do so due to get as much sleep as I need, work at keep- defunct AIDS Alternative Health Project the fact that I had set up a strong network ing my involvement with family drama to a (AAHP), an organization that off ered com- and had the wisdom of many at my back. minimum, and loving my dog Sofi beyond plementary health care to people with HIV. HIV hasn’t been the smoothest ride on the reason. And yes, occasionally adding to my Aft er two years, I learned so much about planet (think the Superman rollercoaster at large collection of clunky black shoes. alternative treatments, as well as Western Six Flags), including a very low point in ‘95 Has my life changed from my dance care, and met so many dedicated to the fi ght when I progressed to AIDS, however, I am with HIV/AIDS? Most defi nitely. Do I wish that I summoned the courage to test. one stubborn (yes, and controlling) bastard. I didn’t have to deal with this day aft er day I prepared judiciously. I had a medi- Now, to my utter surprise, I am pushing 50. aft er day? Indeed so. However, this is what cal practitioner in place, a very sharp guy Positive for 16 years, AIDS diagnosed for 14 I must face and I do so as best I can. I urge who, as an added bonus, was smolderingly of them. you to so the same. hot, with dark black hair, a thick moustache How does one survive aft er testing Dedicate yourself to living, know that and a slight, incredibly sexy, Eastern Indian HIV-positive? I suppose I can be considered others have done so before you. accent. I had a strong support system, as a “long term survivor.” Odd, considering I Most importantly, know you are not well as an arsenal of alternative health care thought I would never see 40, but the best alone. e and knowledge at my disposal. If the results I can do is share what I suspect supports came back positive, I was equipped and had longevity. a game plan. Photo courtesyPhoto of Sal Iacopelli 46 Positively Aware PA • September / October 2009 • tpan.com • positivelyaware.com PPAA OOnlinenline
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At BioScrip, we understand the challenges that you face with complex medical and chronic health conditions, like HIV/AIDS and Hep C. We are committed to providing you with the medications and support you need so you can focus on what matters most - your life.
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