The Daily Routine of Fighting AIDS

Posted by Dave on February 8, 2010 | 6 Comments

There is no cure for AIDS. Once you are diagnosed, the diagnosis stays with you for the rest of your life. For Charles, this means he must take a complicated cocktail of pills every day. He sent me this photo of a month’s supply:

For his antiretroviral therapy he takes four drugs:

• Lexiva twice a day
• Norvir once a day
• Truvada once a day
• Isentress twice a day

These attack the virus itself in different ways; the combination is more effective than taking a single drug at once. Together, they help to decrease his viral load and increase his T-cell count, which prevents nasty opportunistic infections. However, the drugs themselves cause side effects, which in turn require more drugs. For Charles the primary side effects are upset stomach and acid reflux; he controls this with Omeprazole.

But HIV disease and AIDS also have other symptoms, so Charles takes more drugs to control the symptoms. He takes Diclofenac sodium twice a day to control inflammation, and Buproprion HCL twice a day for depression. Here’s the array of pills Charles swallows every day:

The regimen is so complicated that Charles spends a good 20 minutes sorting and bundling his prescriptions when they arrive each month, just to make sure he doesn’t miss anything. Indeed, the cost of non-adherence is great. If Charles misses even a single day, he puts himself at a greater risk for the viral load increasing, or the virus mutating to a form that is resistant to the medication.

With stakes so high, you might wonder whether anyone ever misses a dose. Charles’s case manager told him that overall adherence to the antiretroviral drug regimen is only around 80 percent—and despite the knowledge that the drugs are what keeps the disease at bay, Charles still struggles with maintaining adherence. For him the most difficult thing isn’t remembering to take the pills, it’s the fact that the pills are a “daily reminder.” He says staring at that pile of pills each day just “brings home that you’re sick, and what you’re sick with.”

When he was first diagnosed with AIDS, he was battling both the AIDS and pneumonia, and the drugs he was prescribed then had more side effects. Now he says that even though his drug regimen is easier, there’s a built-in association in his mind with those earlier problems, and mentally it can be difficult to choke down the pills every day.

On good days, the drugs are doing their job and Charles can live a relatively normal life. He tries to get plenty of exercise: High muscle mass is one of the few statistically significant predictors of success in fighting AIDS, so staying in shape is critical. If he’s feeling really good, he goes for a run, but that takes a physical toll on his body, so more often he walks. But even walking can be a problem because he might get exhausted and be too far away from home. So a friend suggested he carry a very heavy backpack filled with water in bottles. If he starts getting tired, he dumps out some of the water and can make his way back.

Charles says some people he knows take this research to its logical conclusion and become “total gym rats,” even taking steroids to increase muscle mass. He suspects that part of the reason Magic Johnson has been such a success story is that he’s always been disciplined about staying in shape: “His whole way of life is about being a totally disciplined person.” But that’s not possible for everyone—if it was, then there’d be nothing special about Magic Johnson, right?

It’s one of the paradoxes of HIV/AIDS. If you do a good job fighting it, you end up looking like someone who’s not very sick. Even Charles, who hasn’t been healthy enough to work a 40-hour week for years, still gets strange looks from bus drivers when he flashes his “disabled” bus pass. Magic doesn’t make a very good poster-boy for the disease because he seems perfectly healthy, even super-healthy.

On his bad days, the bus drivers don’t see Charles because he’s not out. When he gets sick, he’s worked out a deal with his doctor: He doesn’t have to go to the hospital if he promises to stay home in bed, only getting up to go to the bathroom. It can take him weeks to recover from a cold. Even scratches and bruises take two weeks to heal.

Charles has beaten the odds, but he’s also been beaten down by the disease. He can’t work, but his claim for Social Security Disability was rejected because he doesn’t seem sick enough. He’s at the mercy of the state and Medicaid for his health care. Last Wednesday, he learned that he’s going to lose his doctor of seven years and pharmacy specializing in HIV/AIDS due to cutbacks in Medicaid.

And still, every day, he’s got to remember to take those pills.

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