An open letter to people living with HIV/AIDS
Of the many challenges faced by people living with HIV, one of the most difficult is keeping up with important information about the medical management of our illness. New information about the treatment and science of HIV disease becomes available on a daily basis. Staying current with it is overwhelming. At The Center for AIDS, a non-profit organization staffed mostly by HIV-infected individuals, it’s our job to keep on top of new developments. In fact, that’s all we do. We don’t provide social services, counseling or financial assistance. Instead, we pour over dozens of medical journals, Internet sites and other sources looking for the latest information that will keep you—and us—healthy and alive. Of course, we recognize that not everyone has the time or resources to follow HIV treatment news in detail, and truthfully, some of the information that comes our way is not useful. In early 2000, our staff began work on this pamphlet. We started by asking ourselves, “If we knew only 25 things about the treatment of HIV infection, what would be the most important things for us to know?” The list that follows, put together from The Center’s experience, knowledge and resources, is our answer. The list includes the 3 interventions known to save the lives of people with HIV: antiretroviral therapy when the CD4 T cell count is low, prevention of opportunistic infections and care from an experienced physician. The other items on the list include information that is likely to increase survival time, prevent disability or improve quality of life. Our list is not exhaustive, but it covers vital information. In a couple of places, our list departs from the recommendations of medical experts. But in these cases, it’s important to note that the recommendations of experts are based on opinion, not fact. For example, medical experts generally recommend that you take anti-HIV drugs even when your CD4 T cell count is as high as 500 cells. In other words, in their opinion, it’s best if you treat early. But there is no proof—none—that people with high CD4 T cell counts live longer or have fewer illnesses if they take anti-HIV therapy. On the other hand, there’s a lot of proof that people with CD4 T cell counts below 250 will die without treatment. We’ve tried hard to make the information in this pamphlet short and easy to understand. If after reading it, you have questions, or if you’re interested in learning about things we haven’t covered here, please let us know. We’re happy to share any information we have about HIV treatment. You can call The Center for AIDS at 281-HIV-INFO or you can visit our website at www.centerforaids.org. We also have a walk-in treatment information center at 1407 Hawthorne in Houston. Stop by and see us. Knowledge is power. And armed with that power, you can make choices that will keep you healthy, happy and alive.
Paul Simmons Director of Treatment Information & Advocacy The Center for AIDS: Hope & Remembrance Project Houston
in Focus
If you are HIV-infected... here are the top 25 things you need to know.
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Do not eat raw meat, raw fish or raw eggs. These foods may carry dangerous germs that can cause serious illnesses.
Take a multivitamin and a high-potency supplement of B complex vitamins everyday. There is some evidence that vitamins help HIV-infected people stay well.
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If you’ve never had hepatitis B, ask your doctor about getting vaccinated against it. If you have hepatitis C, ask your doctor about getting vaccinated against A & B.
Examine your mouth on a regular basis. The first signs that your HIV infection is getting worse often appear in the mouth.
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Even when you’re feeling well, see your doctor at least once every three months. Regular visits allow your doctor to track changes in your viral load and T cell count.
It’s important to avoid activation of the immune system. Therefore, whenever possible, treat any non-HIV illnesses you experience. These illnesses activate
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the immune system.
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If you’re an HIV-infected woman, have a pap smear once a year. Pap smears can detect cervical cancer.
If you’re feeling fatigued a lot of the time, ask your doctor about anemia. Untreated anemia is associated with reduced survival.
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If you’re experiencing unexpected, unwanted weight loss, consult your doctor and consider treatment for wasting. can kill you. Left untreated, wasting
If your T cell count is greater than 2OO cells/mm3, get a Pneumovax every 5 years. Pneumovax is a vaccine against bacterial pneumonia.
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Even if you’re HIV-infected, your baby doesn’t have to be. Transmission of HIV from mother to child is almost always preventable.
Seek prompt medical attention for pancreatitis, lactic acidosis, Stevens Johnson syndrome and abacavir hypersensitivity. Anti-HIV drugs can cause these conditions. Left untreated, these conditions can be fatal.
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T cell count measures the health of the immune system, and it tells you more about your health than viral load. Also, the T cell percentage is a more stable indicator of immune health than the T cell absolute count.
Viral load usually, but not always, indicates the speed at which HIV disease will progress. Generally, the higher your viral load, the greater your risk of getting sick. If your viral load is less than
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5,OOO copies/mL, your chances of getting sick are very small.
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Learn to recognize the signs of HIV-related cancers. The sooner cancer is recognized and treated, the better.
Never take a regimen of only 1 anti-HIV drug. There may be times when a regimen of 2 anti-HIV drugs is acceptable, but most of the time it takes 3 drugs to
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suppress HIV.
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An anti-HIV regimen has two parts: the “background” and the “anchor.”
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For background, use one of the following combinations. Your doctor will help you choose based on your treatment history and your feelings about side effects, pill count and food restrictions: • • • • d4T AZT d4T AZT (Zerit) + ddI (Videx) (Retrovir) + ddI (Videx) (Zerit) + 3TC (Epivir) (Retrovir) + 3TC (Epivir)
Use one of the following as an anchor. Your doctor will help you choose based on your treatment history and your feelings about side effects, pill count and food restrictions. • • • • • efavirenz (Sustiva) nelfinavir (Viracept) nevirapine (Viramune) ritonavir (Norvir) + saquinavir (Fortovase) ritonavir (Norvir) + indinavir (Crixivan)
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If your viral load is greater than 1OO,OOO copies/mL, avoid nelfinavir (Viracept) or abacavir (Ziagen) as the anchor drug in your regimen. These drugs are not strong enough to
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anchor your regimen.
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If you’re on a regimen of anti-HIV drugs, take every dose of every drug everyday. Take the drugs on time. If you’re unwilling or unable to do this, stop taking the drugs altogether. You can restart later when you’re ready. Taking some of your medication some of the time does more harm than good.
Do not take any medication, whether over-the-counter or by prescription, without first making sure there is no interaction with your anti-HIV drugs. Some interactions
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can be fatal.
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If you experience “floaters,” call your doctor immediately. Floaters, drifting dark spots in your vision, are a sign of CMV disease. Left untreated, CMV can cause blindness.
If your T cell count is less than 25O cells/mm3, or if you have symptoms such as night sweats and fever, consider taking anti-HIV therapy. If your T cell count is low, anti-HIV therapy
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may save your life.
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If your T cell count is less than 2OO cells/mm3, take medication to prevent PCP. PCP is a pneumonia that can kill you.
If your T cell count is less than 5O cells/mm3, take medication to prevent MAC. MAC, also known as MAI, is a bacterial infection that can kill you.
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Choose a doctor with experience in the treatment of HIV/AIDS. The more experience, the better. This is the most important decision you make.
Number 23:
Hepatitis is inflammation of the liver, whatever the cause. Symptoms include poor appetite, nausea, vomiting and fever. The urine may become dark and the skin and eyes may become yellow.
Number 14:
Pancreatitis is inflammation of the pancreas, whatever the cause. Symptoms include severe pain the upper midabdomen and fever. Lactic acidosis is a buildup of lactic acid in the blood, whatever the cause. Symptoms include nausea, vomiting and rapid breathing. Stevens Johnson syndrome is a severe rash affecting the mucous membranes, including the lining of the mouth or the vagina. Abacavir hypersensitivity is a drug reaction characterized by skin rash, fever, nausea and fatigue.
Number 13:
CD4 percentage refers to the percentage of lymphocytes that are positive for the CD4 marker. It may appear on a lab report as “% CD4 Pos Lymph.” A change in the CD4 percentage of 3 or more points is significant.
Number 11:
Skin lesions caused by Kaposi’s sarcoma appear as violet patches and are often found on the soles of the feet, roof of the mouth or tip of the nose. Symptoms of non-Hodgkin’s lymphoma include enlarged nodes, loss of appetite, trouble breathing, weight loss, dark patches on the skin, fever and night sweats.
Number 5:
CMV stands for cytomegalovirus.
Number 3:
PCP stands for Pneumocystis carinii pneumonia.
Number 2:
MAC stands for Mycobacterium avium complex, which is also known as MAI, or Mycobacterium intracellulare.
Focus
“I have learned more about love, selflessness and human understanding in this great adventure in the world of AIDS than I ever did in the cut-throat, competitive world in which I spent my life.”
— Anthony Perkins US screen actor (1932-1992)
Mission and Beliefs
We believe the well being of HIV-infected individuals begins with their affirmative participation in the process of treatment, and that often they do not have access, resources or abilities to participate on their own. As such, The Center for AIDS dedicates itself to providing the latest treatment and research information to persons with HIV/AIDS, their caregivers and healthcare providers. The Center acts as a catalyst for the creation and the establishment of innovative HIV/AIDS research in Houston and advocates for the entire affected population, ensuring that Houston's regional needs are factored into the national dialogue about HIV/AIDS.