This article specifically addresses HIV medications but the information, rationale and tips can be transferable to any need for long term medication use.
Back in the “bad old days” of the Age of AIDS, guys had to swallow handfuls of pills at least three (3) times a day. Now, most who are prescribed medication to treat HIV infection, are on a one (1) to three (3) pill max, daily regime. Even those who have been infected for long periods of time have been switched onto these easier to manage doses. This is very good news, especially as we promote campaigns such as Undetectable = Untransmittable (#UequalsU), Can’t pass it on (#cantpassiton), HIV has Changed (#hivhaschanged) and even PrEP for those that are HIV negative, but at risk (meaning all gay males). This science is dependent on those who are HIV positive having and maintaining an undetectable viral load.
It is a fact that those who are living with HIV disease can, and mostly will, live long, healthy and productive lives, just as those who are HIV negative, but most organizations don’t explain the challenges some have in getting to undetectable. We at GMJ went to a few of our very trusted sources to bring you the basics about taking any medication for an extended period and how you can swallow like a pro. They also walked us through why some guys have problems becoming undetectable. These gentlemen are all HIV positive, gay males, long term survivors and have over 60 years worth of combined medication experience between them. They are also professionals who specialize in gay male health and wellness. So, they know their shit.
HIV plus magazine reported on The Centers for Disease Control and Prevention’s new surveillance report, estimating that out of the 1.1 million HIV-positive living in America in 2014, 85 percent knew their status, 62 percent had access to care (with 48 percent currently in regular care), and 49 percent were undetectable.
UNAIDS also released a report called Ending AIDS, which showed that in 2016, 70 percent of people living with HIV in the world knew their status, 77 percent were on treatment, and 82 percent of those on treatment were virally suppressed. These results show we’re much closer to attaining the United Nations’s 90-90-90 goal, but there is still much need for improvement in certain areas, such as the southern states, which make up nearly 32 percent of new HIV diagnoses in the country.
AIDS Map reported that Iceland, Singapore, Sweden, the United Kingdom, Cambodia and Botswana have already reached the 90-90-90 goals, which “calls for 90 percent of people to know their status, 90 percent of poz to be on treatment, and 90 percent of poz people to reach undetectable”. Other lower to middle-income countries are nearly there as well.
What this all means is that in the United States, just shy of 50% of HIV positive people, who know that they are infected, have gotten their golden ticket of being undetectable. This makes the USA far behind other developed nations. We start tracking these numbers when someone has reached this goal for at least six (6) months. Usually, outside of some major life stye changes, most are able to keep this status, without issue. But, as we see from the above reports and statistics, just as many that have suppressed the virus to the point of being undetectable, have not. This is a very far cry from the European, Asian and African countries that have gotten at least 90% of those infected to this level. The question is, why?
“Barriers to maintaining undetectable viral loads for our community members who are already vulnerable are due to a range of health, social and economic inequities. The social determinants of health that impact risks of acquiring HIV, especially injection drug use, include factors such as: poverty, inadequate housing, and lack of education, job training or employment. As well, the impacts of Colonization, unresolved grief from residential schools, and intergenerational trauma, are all reasons why some clients are not able to maintain an undetectable viral load. We come across individuals who don’t have a home and are couch surfing. It is certainly challenging for our team to maintain continuum of care for client who are under our case load. Many of our clients are unemployed; living on a fixed income creates other issues – many can’t afford quality, nutritious food in an ongoing way. This is a barrier to health – everything is interconnected. Including Universal Healthcare coverage.”
Let’s try to break some of this down and provide some statistics and research to make it all easy to understand.
- Access to care
The countries that have success in the area of HIV treatment are also the ones with the largest amount of their citizens covered by some form of government backed health insurance or HIV medication assistance program. If he cannot afford the expensive medications used to treat HIV, there is no reason to expect that he will ever become undetectable. Some states in America have created and fully funded programs that increase HIV healthcare and medication coverage like The AIDS drug assistance program (ADAP) and expanded Medicaid. But many barriers around access to care continue. These could include anything and everything from proximity to doctors and hospitals that understand and are knowledgable about HIV care and treatment, to homophobia, racism and HIV stigma concerns. Making sure guys are able to find, keep and see proper physicians is key to achieving our global goals to end AIDS and HIV in this generation.
Numerous studies prove that stable housing is a large part of medication adherence. It makes sense when you think about it. How can he consistently take medication, if he is moving from room to room, shelter to shelter or even from sidewalks, subway cars and parks daily? His major concern at this point is survival and shelter. Medication is low on the list. As Jaron Benjamin, vice president for community mobilization and national advocacy at Housing Works wrote for the New York Times. “The most effective way to keep people with HIV in care, and in reach of viral suppression, is stable housing, with supportive services for those in need. It can reduce HIV mortality by as much as 80 percent and decrease the rate of new infections.”
- Drug and alcohol abuse
Addiction and drug abuse are well researched as methods of contracting HIV and increasing risk of infection, but we still have a long way to go when discussing their effects on treatment management. At GMJ we understand that there is a difference between substance use and abuse. We also take a harm reduction approach to this issue because we understand human nature, but the abuse of mind altering substances limits one’s ability to remember to take medications or even have the desire to. This includes drugs like crystal meth, where guys can be in a daze for three (3) or more days. Party and Play is the name of the game for many in our community, and the downside is limiting their ability to become and maintain a level of undetectable. As aidsinfo.com reported back in 2012, “although illicit drug users are underrepresented in HIV therapy clinical trials, available data indicate that efficacy of ART in illicit drug users—when they are not actively using drugs—is similar to that seen in other populations. Furthermore, therapeutic failure in this population generally correlates with the degree that drug use disrupts daily activities rather than with drug use per se.”
- Shame and stigma
Yes, our two favourite friends make yet another appearance. Even after being tested and diagnosed, shame and stigma can keep many guys from even making the first baby steps towards proper treatment. But, let’s be real here for a moment. Finding out that you have contracted HIV, even in this day and age, is still a mind fuck. Your whole world get’s turned around with the completion of a sentence. Some are strong enough to take this information in stride, with or without counseling, but others need time to sort shit out. They need days, months, and even years to come to terms with their diagnosis. This is not a point of judgement, but if you are one of these guys, please curb your sexual activity as to not infect anyone else. And please get the assistance you need.
As large as an individual and community obstacle stigma is, new research discusses how shame can be just as harmful, if not more so for individuals. They list five ways in which shame might negatively impact upon attempts to combat and treat HIV, which emerge from the stigma HIV carries and STI-stigma in general.
Shame can prevent an individual from disclosing all the relevant facts about their sexual history to the clinician.
Shame can serve as a barrier to engaging with or being retained in care.
Shame can prevent individuals presenting at clinics for STI and HIV testing.
Shame can prevent an individual from disclosing their HIV (or STI) status to new sexual partners.
Shame makes people want to hide and withdraw from the world and others, it therefore makes the task of living with HIV a far more negative experience than it should, or needs to, be
- Medication resistance
For people infected with HIV, drug resistance can render drugs less effective or even completely ineffective, thus significantly reducing treatment options. Mutations are very common but not all are negative and harmful to treatment. Some are actually beneficial and help to keep HIV cellular replication in check. Urban legend says that almost all HIV positive guys become resistant to medications or that most who are infected, are with a drug resistant strain. All of this is bullshit. HIV drug-resistance mutations can occur both before and during HIV treatment but it is rare to cause huge changes in medical care. And we still have a host of classes of medications to use as back-ups if this occurs. No one is waking around with untreatable HIV because of total and complete medication resistance.That would be a full HIV ART CLASS FAILURE (yes, we know what that sounds like) and he would die of AIDS, just like those before medication treatment in the early 1990s. But, if you need more information about drug resistance and mutations, here’s how it happens.
- Taking a medication daily is hard
There are some guys that really hate to swallow. No matter how much, or little, is in their mouths, they will complain about the taste, the texture, the smell or even the thought of having to take a big gulp and swallow it all. Their gag reflexes activate, making a horrible wretching sound, before finally it all slides down his throat in one big dramatic display. But, even afterwards, they will still bitch and moan about the after taste and how horrible and humiliating the experience was. This goes the same for medications.
One pill for the occasional headache is not that bad. But, there are certain physical and psychological manifestations that develop when you know that you must take a pill(s), everyday, at the same time, for the rest of your life. But, this can even be an issue for shorter term medical treatments like for STDs or even the flu virus. Eradication or suppression of any disease or illness is dependent upon you, the patient, taking the medication as directed. Not when you feel like it. Not when you remember. Not when it’s convenient. Not just until you feel better, but as directed and prescribed by your medical provider.
Issues that some complain about, with certain medications, are physical side effects; the major ones being around the stomach. Symptoms include nausea, upset stomach, diarrhea and vomiting. These are usually mild and temporary, lasting no more than a week or two. Best of all, they can be treated with over the counter medications (the pink stuff). If symptoms persist or get worse, we strongly recommend seeing your provider. But, these issues can usually be solved long-term by taking the medication as directed, with or without food, and limiting dairy. HIV medications should never be taken with grapefruit juice as it lessens the effectiveness of the drugs.
Tips on taking medications:
- Get into a rhythm and take them at the same time everyday.
- Most medications taste horrible. Swallowing is much easier with juice, milk or even soft drinks (if necessary).
- Try not to think about why you are taking them. Remembering that you have HIV every time you take meds will only depress you or cause internalized stigma or even shame/blame.
- Get some privacy. If you don’t live alone, there is no need for the entire home to witness your routine.
- Be slick about it. If it is one pill or three, cup them in your hand, take a sip of something, pop them in your mouth quickly, and then swallow. No one even has to know.
- If necessary, get a daily pill box reminder. You know, like the one your grandfather has. This will make sure you don’t skip doses.
- For the truly challenged, set your mobile phone to remind you with an alarm.
- Worse comes to worse, get a friend or family member to help you remember. This is your life and health we are talking about, so this is not the time to get embarrassed if you need help.
- Never take medications with alcohol. Many times the mixture can create horrible side effects, and one might increase the effectiveness of the other.
- Finally, if none of the above work or you are having problems being consistent, try making a game out of it, and giving yourself rewards for small achievements like one (1) full week without missing a dose, and larger goals like T-cell count improvements, until you finally reach and sustain undetectable.
Let’s be clear about a few things. An HIV diagnosis is nothing to take lightly and neither is the need for you, the patient, to take your medications as directed. This is an illness that we can control and keep from passing on to others, but this can only be done if each and everyone of us is properly tested for HIV and if positive, take the treatment as directed. Because Treatment is Prevention!
NOTE: Issues with medication adherence have been a concern within our community when it comes to taking PrEP. We have a few pieces in the library and newsroom about this topic with a few questions you should ask yourself before deciding to take this HIV preventing medication. The pills, by themselves, do work, but not if they are left in the bottle. They must be in your body, before anyone else is. If you have issues or concerns with taking medications or have a substance abuse habit, think hard before starting PrEP and make sure to raise these topics with your doctor before starting a PrEP regime.