You’ve just learned that you are living with HIV. Now what?
Life has suddenly changed. There’s so much you need to know, and so much to consider. But the good news is, living with HIV today means you can take control of your life by making informed decisions. Here’s how, whether you’re newly diagnosed or getting a refresher.
For the newly diagnosed
At the time of a new HIV diagnosis, your provider should assess how you’re coping, and tailor the visit based on how well you’re adjusting. If the diagnosis is unexpected, this may not be a good time to absorb and retain a lot of information. When you are ready to engage in a discussion about what a new HIV diagnosis means for you, the provider should assess your baseline knowledge of HIV management so the information discussed isn’t redundant.
It’s important to understand that for most people living with HIV it is now a manageable, chronic condition. It is best to get screened for HIV regularly. Routine testing increases your chance of being diagnosed earlier before illness can set in. The sooner you start HIV meds (anti-retroviral therapy, or ART), the better you will do. This is because the virus won’t have as much time to establish itself in the lymph tissue, a key part of the immune system.
When you come to your first HIV visit, it’s important that all of your questions are answered. I sometimes ask patients, “How do you think this will change your life? What are you afraid of? What do you think you won’t be able to do? What worries you?” I usually tell my patients that there is almost nothing you cannot do while living with HIV.
There are several aspects of managing HIV: medical, psychosocial, lifestyle, and financial.
TREATMENT AND PREVENTION
Medical aspects of managing HIV
HIV treatment is recommended for everyone at the time of diagnosis, regardless of how strong your immune system is. Previously, HIV treatment was only recommended for those who had a weakened immune system; more recently, the recommendation shifted to HIV treatment for everyone. Studies have shown that people who start treatment as soon as possible at the time of HIV diagnosis do better overall than those who wait.
The goal of ART is to get an undetectable HIV viral load. This means counting how much HIV is in the blood, and finding so little of it that the test cannot detect it. The other important lab value that we monitor is the CD4 cell count, or T-cell count. This is an indicator of the strength of one’s immune system. A higher CD4 count means a more robust immune system. With CD4 counts below 200 cells/mm3, or 200, an AIDS diagnosis is assigned (I personally do not like the word AIDS; I think it should be avoided because it carries so much stigma). Sometimes people incorrectly use the words HIV and AIDS interchangeably. Advanced HIV infection is a better way to express this, but the CDC still uses AIDS-defining criteria and diagnosis. Unfortunately, once one has been assigned an AIDS diagnosis it remains for life, regardless of whether your CD4 count goes back above 200.
There is currently a trend to move away from monitoring CD4 count and only monitoring HIV viral load once you have been undetectable for a year with a CD4 count greater than 250 and are taking medication consistently, as recommended by the International Antiviral Society USA (IAS-USA). However, this is not yet part of the U.S. Department of Health and Human Services (DHHS) guidelines. HIV viral load should be monitored at least every six months per current IAS-USA guidelines. It remains to be seen how requirements for programs such as the AIDS Drug Assistance Program (ADAP) may change, since ADAP needs labs every six months as part of its approval process.
If your CD4 count is below 200, your provider will recommend you take additional medication to protect you from other types of infections. This is called prophylaxis (prevention). If your CD4 count falls below 200, then you should begin prophylaxis for pneumocystis pneumonia (using an antibiotic called Bactrim). Counts below 50 warrant protection from MAC (Mycobacterium avium complex) with azithromycin.
Newer recommendations state that one can discontinue Bactrim for persons of lower CD4 counts (less than 150) who are undetectable; weekly azithromycin is no longer recommended for prophylaxis of MAC in patients whose CD4 count is less than 50 if one is undetectable, per IAS-USA guidelines.
The provider will also do baseline labs to check blood counts (hemoglobin, platelets, etc.) as well as a chemistry panel (kidney and liver functions), STIs (primarily chlamydia, gonorrhea, and syphilis; multi-site testing is recommended in urine, rectally, and throat if risk is assessed), a TB (tuberculosis) test, cholesterol, and a full hepatitis panel (hepatitis A, B, and C). Another test that is done is an HIV genotype. This test determines which medications will work and which ones you may have resistance to, meaning the meds won’t work because the virus is resistant to them. Since the class of integrase inhibitors is pretty new, we don’t typically do an integrase genotype at the initial lab testing.
There is a new push to start HIV meds the day of diagnosis, if it is feasible. This is called “rapid start,” or same-day ART. There are certain medications that work for a variety of HIV genotypes, and those would be used in rapid start. Once the genotype test comes back, the medication may need to be changed, but it typically does not. The rationale for rapid start is to minimize the HIV reservoir in the lymph tissue, as well as to prevent further HIV transmission by people who are not yet undetectable. Also, at the time of seroconversion, when someone acquires HIV, the viral load tends to be very high, making a person more readily able to transmit HIV virus to others.
Depending on immune status, a series of vaccines that you may not have had will be recommended. An annual flu shot is always recommended during flu season (people who are immuno-compromised should not get live vaccines, such as measles, mumps, rubella, or chicken pox vaccines). And no, flu shots do not give you the flu! It is not a live virus; you may feel a little off, but that is just your body mounting an immune response, which may make you feel a little sick, but the shot did not give you the flu! You should get two pneumonia shots (Prevnar 13 and Pneumovax 23), a series of two meningitis shots (Menactra), and the Tdap shot (tetanus, diphtheria, and pertussis or whooping cough). Also, people who do not have immunity to hepatitis A or B should be vaccinated against either or both (there is no vaccine against hepatitis C).
Antiretroviral therapy (ART)
The newest class of antiretrovirals are integrase inhibitors. They are generally well tolerated, and allow you to get to an undetectable HIV viral load in approximately 6–8 weeks. Older regimens might take longer.
The DHHS guidelines for HIV treatment now recommend that people taking therapy for the first time should use an integrase-based regimen with two nucleoside reverse transcriptase inhibitors (NRTIs), in the form of a single-tablet regimen (STR) whenever possible. There are other alternative regimens that are also recommended in certain situations such as if there are medication adherence issues or insurance formulary restrictions.
Another change in HIV therapy over the last five years has been the introduction of TAF (tenofovir alafenamide) to replace TDF (tenofovir disoproxil fumarate). TAF is as effective as TDF, but with a lower dose of 25 mg vs. 300 mg. TAF gets into the target cells more precisely, so less medicine is needed to block HIV. By exposing non-target tissues to lower doses of medication, you lower the chance of a toxicity or side effects. Research has shown that long-term TDF use may be associated with worsening kidney function and decreased bone mineral density in some patients, so it is generally advisable to switch to TAF when possible.
In the last few months, a few of my patients have had questions about lawsuits related to TDF; one patient asked me about what he referred to as “the Stribild recall” (Stribild has not been recalled). In general, people should be switched to TAF when possible. However, it is important for you to know your provider will monitor your kidney function regularly. TAF has only been available for a few years. TDF doesn’t typically cause worsening kidney function in most patients. If it does happen, it can happen early or not show up until many years later. Patients are usually switched to TAF if insurance coverage allows, or if there is a clinical indication.
Previously, it was thought that regimens must contain three active HIV drugs, but now studies have shown that two active drugs can be sufficient in some situations. Currently, there are two single-tablet regimens (STRs) that contain only two drugs: Juluca (regimen switch for patients who are undetectable) and Dovato (for treatment-naïve patients as well as switches). The thought is that less medicine is better since it’s less medicine that has to be processed by the liver and kidneys.
Recently, there is a new concern that integrase inhibitors may be associated with weight gain. More studies are being done to test this observation. It is advisable to monitor weight, and potentially make adjustments to diet and exercise to offset this possible weight gain whenever possible.
U=U (Undetectable Equals Untransmittable)
The newest message that you should know is U=U, or Undetectable Equals Untransmittable. Multiple studies have been done in both heterosexual and same sex couples in which there has never been a known linked transmission of HIV from a positive partner who has been undetectable for at least six months on ART to a negative partner. We can now say with confidence that when a person is undetectable, there is no risk of transmitting HIV to a negative partner. This only holds true for sexual transmission at this point in time. We want to be mindful to not further stigmatize persons for whom getting an undetectable viral load may not be attainable, or for whom there may be many structural or other personal barriers to getting to undetectable, like lack of housing, and access to care, food insecurity, substance use, or mental health issues.
U=U is a game changer. For people living with HIV, it has the potential to positively affect their self-image, reduce stigma, make disclosure and relationships easier, and encourage more people to get tested for HIV. It is also part of the bigger picture of stopping new HIV infections. In Illinois, we have a new plan called Getting to Zero Illinois in which the goal is to have no new HIV infections by the year 2030.
The question then becomes, does a partner of an undetectable person need to be on PrEP? It depends on the situation, trust, communication, honesty and retention in care, number of partners, etc. If the person living with HIV takes ART as prescribed, gets labs monitored regularly, remains in care, and is undetectable, then no, their partner does not necessarily need to be on PrEP for HIV prevention, unless their partner has other sexual partners that cause them to be vulnerable to HIV. Unfortunately, HIV negative men are frequently still choosing stigma over science. It is likely going to take many years for people to unlearn what has been programmed into our brains over the last several decades regarding being very careful about not transmitting HIV. The shift to believing U=U may be a long, slow process for society. It is also important to remember that having an undetectable HIV viral load has no bearing on catching or transmitting all other sexually transmitted infections. Safer sex practices are always recommended.
Medication adherence (taking your meds daily and consistently) and retention in care (staying current with your medical appointments, getting your labs checked, and your meds refilled) are the hallmarks of HIV management. It is important to take your meds every day as prescribed. This includes taking your meds with food if prescribed that way. Never miss a dose or take more or less than exactly as your medication is prescribed. If you are going to run out of your meds, it is better to take them every day and run out, than to take them sporadically to “space them out.” If you forget to take your medication, take it as soon as you remember, except if it is closer to your scheduled time the next day. If that is the case, just take your medication at your regularly scheduled time the next day.
Dolutegravir and pregnancy
There is currently a safety warning for women of childbearing age to avoid taking dolutegravir-containing medications (Tivicay, Triumeq, Dovato) if they are planning to conceive. In a study in Botswana, an increase in babies born with neural tube defects was observed in moms who were on dolutegravir at the time of conception. Anyone of childbearing potential should talk to their provider about switching to another regimen if they plan to conceive. Those already taking dolutegravir who find out they are pregnant past their first trimester should stay on their current regimen to maintain an undetectable status if undetectable. More data are expected soon to determine if there is a true risk for neural tube defects in women taking dolutegravir (see the IAS 2019 report, page 31). A similar concern occurred around efavirenz (the main drug in Atripla) which turned out to be unfounded. It is a good idea for providers to report all pregnancy data to the pregnancy registry apregistry.com).
People living with HIV can safely have children. If the mother is undetectable, HIV should pose no risk to the baby. Men wishing to father children should also be undetectable so as to not transmit HIV to a partner who wishes to become pregnant. Women who are positive should not breastfeed their children.
What’s new in the pipeline?
The first long-acting injectable (monthly or bi-monthly shots) in lieu of taking HIV medication every day is nearly to market and FDA approval is pending. Some patients in clinical trials preferred getting a monthly injection instead of taking pills. The potential drawbacks are post-injection pain for a few days, and having to go to the clinic every one or two months instead of every 3–6 months. It is a good idea to start thinking about whether you would prefer to get an injection instead of taking pills before the injectables become approved, so you can discuss your decision with your provider when they come to market.
Monitoring response to treatment
Although it is only still an IAS-USA recommendation, there is a trend towards monitoring HIV viral load every 6–12 months and no longer monitoring CD4 count once it is above 250. Since maintaining an undetectable viral load is the goal of HIV treatment, there is less utility in tracking CD4 counts, and there is little if anything that one can do to increase CD4 count aside from maintaining an undetectable viral load and doing the things that will be discussed later on to promote good health (see sections below).
PrEP is recommended for partners of persons who may not be undetectable, of unknown HIV status, or for persons who like having the peace of mind of not having to worry about potentially acquiring HIV. Currently, people taking PrEP must be seen by a provider every three months, get STI testing and an HIV test to make sure they have not acquired HIV (because TDF/FTC is not sufficient treatment for HIV), and to check kidney function. If a PrEP patient has chronic hepatitis B virus (HBV) it is important to remember not to stop Truvada without notifying their provider, because there is a risk for hepatitis B flare-up when stopping Truvada.
Data were presented at this year’s CROI (Conference on Retrovirals and Opportunistic Infections) testing the effectiveness of the newer version of Truvada—Descovy—to be used for PrEP. It seems to be working just as well as Truvada, but has not yet been approved for PrEP.
Also there is a newer use of PrEP, 2-1-1 (also called event driven or on-demand PrEP), in which a person takes two pills 2–24 hours before a potential exposure to HIV, then one pill 24 hours after and a second pill 48 hours after sex. This has proven to be protective against HIV and is designed for people who are sexually active on occasion and may not require daily PrEP; but it is still an off-label use, and has to be used very thoughtfully and carefully to be effective.
It is a good idea to see a behavioral health provider if you are experiencing depression or anxiety. The role of trauma in managing HIV has come to the forefront, as more emphasis on trauma-informed care is being implemented in HIV care. Even today, the stigma of living with HIV is alive and well. Disclosure of HIV status is a tricky thing, and it is advisable to work with a professional if one is struggling with how and when to disclose one’s HIV status.
In some states, there are laws that require you to share your HIV status with your sex and injection drug-use partners. Currently in Illinois, you do not have to disclose your HIV status if you use a condom for penetrative sex. However, you are required by law to disclose your HIV status if you are not planning to use a condom for penetrative sex. Although we know that U=U does not put a partner at risk for acquiring HIV if you are undetectable, the law has not caught up with the science yet. Advocating for newer, more just HIV criminal transmission laws is a new frontier in HIV advocacy.
I always counsel patients to think long and hard about to whom one discloses. Keep in mind that you should really trust that the person would be able to process the info (to the extent that one can predict this), to understand what it means, and to keep your information private. Does this person really need to know your status? What are the benefits to them knowing—will it give you more peace of mind? Although it does do a lot to destigmatize HIV, I have heard a lot of upsetting stories of patients whose family did not handle it well, or of jilted partners who disclose status in highly inappropriate ways. Also, disclosing one’s HIV status could result in intimate partner violence, so be mindful of a safety plan if this might be a concern. Remember that employers, landlords, and many others have no need to ask about your private health information, including your HIV status.
Oral health, eye exams
Previously, people living with HIV might see two separate care providers—a primary care provider and a specialist for HIV management. Today, some patients still see a specialist, but more commonly, HIV practices manage both the HIV and the primary care issues. Insurance providers can dictate this, and HIV has gotten easier to manage, so it just depends on what insurance plans require.
It is important to see a dentist at least yearly, ideally every six months. Ask your provider about resources for people who are uninsured or underinsured. Good oral health is an important part of overall health. Also, for people with low CD4 counts, it is important to get a dilated eye exam to check for potential complications due to a compromised immune system.
Diet, exercise, nutrition
People living with HIV, like everyone, should strive to eat a well balanced diet with enough protein, fruits and vegetables, and carbohydrates; avoid processed foods with added sugars, saturated fats, and sodium (salt). Persons living with diabetes should avoid high carbohydrate meals and eat more protein and high fiber meals, and get yearly foot and eye exams.
The current recommendation for exercise is at least 150 minutes a week. This could mean one hour three times a week plus another half hour, or 30 minutes of exercise five days a week. Remember, little things count too, like taking the stairs instead of the escalator, or getting off the bus or the train a stop or two early and walking a little more. Regular exercise helps elevate mood in addition to helping with weight management. Check with your provider to see if you might qualify for a prescription for exercise; in Chicago, for example, you may be able to get a free or reduced gym membership to a municipal or park district facility if you have a qualifying condition. Check for your local services.
Sleep, reduce stress
There has been more emphasis recently on the importance of sleep and good sleep hygiene. Sleep deprivation causes weight gain, and depression, and worsens cardiac function, in addition to worsening your mood! There has been more focus also on diagnosing sleep apnea. Obstructive Sleep Apnea (OSA), in which a person’s airway may close temporarily during sleep, results in reduced oxygen to the brain. The heart must work harder to pump blood to increase oxygen flow to the brain, which may worsen cardiac function.
Sleep hygiene is the promotion of good sleeping habits to increase quality of sleep. Examples of good sleep hygiene are: shutting off electronics (computers, phones, TVs) an hour before bedtime, avoiding napping during the day, going to bed at approximately the same time every day, reducing noise, having a comfortable temperature in the room, and reducing alcohol intake. Studies have shown that aromatherapy like lavender oil can promote sleep and staying asleep. Most prescription medications to assist with sleep are only intended to be used for short periods of time.
Quitting smoking is the number one thing you can do to improve your health. I always tell my patients: “You work so hard and are so consistent taking your meds, but in theory, continuing to smoke is almost undoing all of your hard work because it’s so bad for you.” Another provider tells their patients: “It’s not the HIV that’s gonna kill you, it’s the cigarettes!”
There are many ways to try to quit: some people respond well to varenicline (Chantix), others use Nicotine Replacement Therapy (NRT) to help wean themselves off of tobacco. Studies have shown that a combination of some pharmacological agents and behavioral counseling produces the best results. There are smoking cessation counseling groups, and smoking cessation modules that can help people quit. Ask your provider if there are smoking cessation clinics available to you. Research has shown that discussing smoking cessation at every visit, regardless of where one might be in the process of wanting to quit smoking, keeps quitting on a person’s radar and leads to a greater likelihood of quitting. Don’t be annoyed with your provider if they bring it up at every visit! If you can’t quit, you should at least try to cut back, a concept known as harm reduction.
If you do not have medical insurance, seek medical care at a clinic that has Ryan White funding to cover your medical visits. If you are uninsured or underinsured, and need help paying for your medication, you will need to apply for a program called ADAP (AIDS Drug Assistance Program). This program requires you to provide proof of income, proof of residency, proof of HIV diagnosis, and copies of your lab work. If you have private insurance that requires co-pays for your medications, seek information from your pharmacist about programs sponsored by pharmaceutical companies to help cover your out-of-pocket costs. You can find a Ryan White-funded medical care provider at findhivcare.hrsa.gov.
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John Parisot, MSN, RN, PhD, is a Nurse Educator at the Michael Reese Research and Education Foundation's Care Program at Mercy Hospital in Chicago. He is a member of the faculty for the Midwest AIDS Training and Educational Center (MATEC) in Chicago and a member of the Chicago chapter of the Association of Nurses in AIDS Care (ANAC), where he is also a board member at large. For the last two years, he has been working on raising awareness of U=U, as a motivation for maintaining viral suppression and subsequent HIV prevention behaviors. He lives with his husband and cat in Chicago’s Andersonville neighborhood.