An excerpt from 100 Questions & Answers About HIV and AIDS, published by Jones and Bartlett Publishers, 2008.

To read or listen to an interview with Dr. Gallant, click here.

• How will I pay for medical care?
  From Part 4: Medical Care
• Why is adherence so important?
  From Part 6: Starting Treatment
• What about the theory that HIV doesn't cause AIDS?
  From Part 16: Questions for Those Who Still Have Questions
• Isn't it true that drug companies are withholding the cure to make money?
  From Part 16: Questions for Those Who Still Have Questions
• How do we know HIV wasn't created in a lab?
  From Part 16: Questions for Those Who Still Have Questions

From Part 4: Medical Care

How will I pay for medical care?

Because this book is written from a U.S. perspective, the answer is complex. We don't really have a "health care system" in this country; what you're entitled to depends on who you are, whether and where you work, and where you live. That being said, most people who need HIV care in the United States can get it. Having HIV infection entitles you to benefits that would not be available if you had some other disease. It's a far cry from universal health care, but we take what we can get!

HIV care is expensive. A year's worth of ART costs about $17,000 to $22,000 per year, not including medical visits or lab tests. Few people pay for this out of pocket. Those with private insurance are generally covered, though some insurance plans have limits on medication coverage that can be exceeded long before end of the year.

If you're uninsured, or if your insurance doesn't cover your medications, you may qualify for the AIDS Drug Assistance Program (ADAP) (a federally-funded program that provides antiretroviral medications to those who have no other way to pay for them) in your state. This is a program that provides HIV medications to people who fall below a specified income level. The coverage provided by ADAP programs varies from state to state. Some states' programs are quite generous, whereas others (I won't name names, but they know who they are!) are skimpier and may have waiting lists or shorter lists of covered medications. Medical visits and lab tests are often paid for by federal Ryan White Program (a government-funded program that provides money on a state or local level to provide care for uninsured people with HIV infection) funds that are received by some HIV providers or treatment centers. Finally, people with HIV infection may qualify for Medicaid (an insurance program funded by the federal and state governments that provides coverage for medical care to low-income, uninsured people) or Medicare (a federally funded program to provide medical insurance primarily to the elderly and disabled), depending on income, assets, and the degree of disability.

The complexities of insurance, benefits, and entitlements vary too much and change too quickly for me to be able to do justice to them in this book. My advice is to talk to an HIV-savvy case manager or social worker, and find out where you stand. You can find a case manager or social worker at HIV clinics and AIDS service organizations.

From Part 6: Starting Treatment

Why is adherence so important?

Adherence (the term used to refer to a patient's behavior with respect to following treatment recommendations, including taking medications, keeping medical appointments, etc.) (also called compliance) is the word your care provider uses to describe your ability to "stick to" treatment recommendations, especially taking medications. Adherence is important for any medical treatment, but it's especially important for HIV infection because of the risk of drug resistance. If you were non-adherent with blood pressure medications, you might damage your heart, kidneys, or vision, but at least the drugs would still work if you started taking them properly later. In contrast, HIV is a living organism whose sole purpose in life is to replicate (reproduce itself). ART stops that replication. Missed doses and interruptions in treatment allow drug levels to fall, sometimes low enough to allow the virus to replicate again. When it does, resistant mutants -- virus particles that can replicate in the presence of drugs -- will have an advantage. They can eventually replace the non-resistant (wildtype) virus as the dominant viral strain.

For a particularly vivid analogy that you won't soon forget, imagine a can full of your least favorite animals -- rats, cockroaches, spiders, or snakes, for example. If you keep the lid on the can, the critters can't get out. But if you open the lid, the strongest ones will escape, and when they do, they'll hook up with other strong ones and breed little super-creatures that you won't want to have around. ART is the lid on the can. Keep it tightly closed!

Studies show that your ability to adhere to therapy has little to do with your race, sex, education level, or socioeconomic status. Things that do affect adherence are mental illness (including depression), substance abuse, memory problems, and a chaotic lifestyle. If any of those issues apply to you, address them before starting therapy (see Part 13). I also find that my patients are more likely to adhere if they understand why they're on treatment, why adherence is important, and if they participated in the decision to start treatment. Finally, it helps if you're the type of person who is willing to make sacrifices today to have a better tomorrow and who believes that the actions you take now will have an affect on your future.

Fortunately, adherence is easier now because the available regimens can be taken just once or twice a day and include fewer pills. The newer drugs have longer half-lives (the amount of time it takes for the blood levels of a drug to decline by 50% after the last dose) than the older drugs did, which means they last a long time in the blood. That gives you more "wiggle room" in the timing of doses. But missing doses or interrupting treatment is still dangerous, especially with NNRTIs (efavirenz and nevirapine), because it only takes a single mutation to get high-level resistance. If you're worried about your ability to adhere to therapy, talk to your provider, nurse, or pharmacist before you start therapy. Many HIV clinics have programs that can help with adherence.

A few tips to help you adhere to your therapy:

1. Get a pill box from the pharmacy -- one that has labeled compartments for each day and dose. Put your pills in it each week, even if you're only taking one pill per day. You'll never have to wonder whether you took your pills or not -- if they're still in the box, you didn't take them yet.
2. Link your doses to something else you do every day -- eating a meal, brushing your teeth, or making coffee. If you have a cup of coffee every morning, put your pills beside the coffee pot so you see them when you reach for your morning cup.
3. Always check your medication supply and order your refills in advance -- don't run out on weekends or holidays. If you're using a mail-order pharmacy, you have to plan even further ahead.
4. Talk to your provider or pharmacist about what to do if you forget a dose.With most HIV drugs, it's OK to take them as soon as you remember, or even to double the next dose, but I wouldn't suggest doubling the dose of didanosine or efavirenz.

My patients who do best are the ones who are a little obsessive-compulsive about taking their medications. When I ask "How many doses have you missed since I saw you last," they look at me as though I'd asked them about the last time they'd clubbed a group of baby seals.

Michael's comments:
I talk sternly to myself about the importance of taking my medicine as prescribed. My goal is to never miss a dose. I NEVER consult my mood when it's time to take my medicine. There is no good enough reason to miss a dose, and besides, the virus isn't reasonable. The tools I use are a pillbox and good, healthy, empowering fear. The fear reminds me why I need to take meds, and the pillbox tells me whether or not I've taken them. Taking every dose, as prescribed, gives me peace of mind -- I'm doing what I need to do to help myself. And it only takes a minute or two a day. I now take my meds once a day (down from three times a day), and I also take medicine for high cholesterol, osteoporosis, and herpes. I've been taking meds for over 10 years now, so I figure I've taken around 10,000 doses. While I never forget that I need to take medication, remembering each dose as a discreet event is impossible. The pillbox is a fail-safe tool.

From Part 16: Questions for Those Who Still Have Questions

What about the theory that HIV doesn't cause AIDS?

In the early years of the AIDS epidemic, shortly after the discovery of HIV, a few scientists argued that AIDS was not caused by HIV infection. They proposed a number of alternative explanations, suggesting that AIDS was caused by drug abuse and zidovudine (in the developed world) and malnutrition (in the developing world). These scientists argued that Koch's postulates (the four criteria needed to prove that a microbe or organism is the cause of a disease [for an explanation of this term, click here]) had not been fulfilled and warned that antiretroviral therapy, rather than saving lives, was prematurely ending them.

If their hypothesis was far-fetched in the late-80s, it's complete lunacy today. Koch's postulates have been fulfilled many times over. We now have a solid and ever growing understanding of how HIV infects human cells, damages the immune system, and causes AIDS. The life-saving effects of antiretroviral therapy have now been well-established by countless clinical trials, large observational studies, and data from large populations. It was no accident that the death rate from AIDS declined by 50% in the year after HAART was introduced!

The so-called "scientists" who cling to their discredited hypotheses have forgotten one of the fundamental principles of science: You have to be able to admit that you're wrong. Their dwindling followers (most have either died prematurely or have come to their senses and started therapy) now treat "HIV denialism" more as a cult than as a scientific hypothesis. These wackos would be amusing if it weren't for their modest influence.They affected the policies of at least one government that was looking for a way to avoid paying for antiretroviral therapy and they have influenced gullible people not to get treated for a fatal disease. They have a lot to atone for!

Isn't it true that drug companies are withholding the cure to make money?

This is a popular point of view among conspiracy theorists and those with contempt for drug companies, but a little rational thought should put this myth to rest.

1. It's no surprise that we haven't yet eradicated HIV infection. The difficulty of finding a cure is discussed in Question 42.
2. People who develop therapies at drug companies are scientists. They're motivated by the things that motivate scientists everywhere else: publication in prestigious journals, the respect of their colleagues, Nobel Prizes, interviews on "Oprah," getting funding to do more research, and the knowledge that their work has made a difference to humankind. No scientist who discovers the cure for AIDS is going to keep quiet about it, even if ordered to do so by an evil, profit-hungry CEO!
3. Drug companies are competitive. If they're onto something big, they know their competitors can't be far behind. Being the second company to come up with The Cure won't be good enough. If a company had a cure, you'd have heard about it!
4. A cure for AIDS would be highly profitable. Sure, there's big profit in lifetime therapy, too, but it's shared among multiple competing drug companies and doesn't last forever. Drugs go off patent and get replaced by generics; they fall out of favor as they're replaced by newer and better agents. A cure is likely to be expensive and would result in an instant monopoly for the company that discovered it.
5. Most conspiracy theories are wrong.

How do we know HIV wasn't created in a lab?

This popular conspiracy theory gives far too much credit to the science of bygone generations. HIV first infected humans in the first half of the twentieth century (see Question 3). We have proof of human infection dating back to the '50s. The idea that such a complex virus could be created by scientists today is farfetched enough, but to think that it could have been invented over 65 years ago is preposterous.

Few of those who believe in this theory think it was just an innocent scientific experiment gone wrong. Instead, they believe it was part of a well-orchestrated plot to rid the country ... or the world ... of its "undesirable" elements: gay men, injection drug users, or minorities ... take your pick. But in the first half of the last century, we were too busy worrying about poverty (the '30s), the war ('40s), and communists (the '50s) to waste time trying to figure out how to wipe out gay men and drug users, who were barely on the radar screens of anyone except other gay men and drug users.

The fact that the HIV epidemic didn't originate in the developed world (where, as we know, all the evil scientists live) doesn't fit well with this theory either. Since the epidemic began in Africa, you'd have to propose that someone was trying to wipe out all Africans, a strategy that would not have been appreciated by the colonial powers who relied on them for labor and income.

Finally, it's inconceivable that the inventor of such a virus could also have planned an epidemic that would target specific groups of people. Its spread among gay men, drug users, and minorities was accidental, and in the end, it didn't stay confined to those groups anyway. Throughout history, there have been infamous examples of abuse of the human race by science and medicine, but the deliberate creation of the HIV epidemic is not one of them.

*Koch's postulates: The four criteria needed to prove that a microbe or organism is the cause of a disease. The postulates are: 1. the organism must be found in all animals suffering from the disease but should not be found in healthy animals; 2. The organism must be isolated from a diseased animal and grown in pure culture; 3. The cultured organism should cause disease when introduced into a healthy animal; and 4. The organism must be reisolated from the experimentally infected animal.