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Seven Considerations When Starting HIV Medications

By David Fawcett, Ph.D., L.C.S.W.

October 23, 2015

Preparing For a Life-Saving Challenge

Starting HIV Treatment

To keep the immune system as robust as possible, it is now recommended that HIV medication be initiated immediately after testing positive. Many of my clients, adjusting to the shock of being HIV positive, find the rush to medicate daunting. While HIV meds are easier to take than ever before (most newly diagnosed people take just one pill a day), starting treatment is a major and, for some, difficult step.

Starting HIV medications is both a big step and a lifelong commitment. Here are seven things to consider as you begin your journey toward a healthy life with HIV.

Get Started
1. Accept a New Way of Life

1. Accept a New Way of Life

Most people have many strong emotions such as anger, fear and sadness after testing positive. Each of these feelings is entirely normal, yet all of them can easily be projected onto one little pill. HIV medications, even if taken only once a day, are a constant reminder of your serostatus, and they leave little room for denial or avoidance. The road to acceptance of living with HIV can be long and difficult. Resisting this process can mean delaying the start of a regimen, or taking medications inconsistently or not at all. It is essential to work with your support system (friends, family and health care providers) to identify and express any negative feelings you are experiencing about being HIV positive so that you are ready to commit to this new daily routine.

2. Prepare for Physical Side Effects

2. Prepare for Physical Side Effects

Tremendous strides have been made toward improving the effectiveness of HIV medications with as few side effects as possible. Nevertheless, some people do experience physical complications as a result of taking meds. These are mostly gastrointestinal and often subside after a few weeks. However, some medications can create additional symptoms or cause vivid dreams or disturbing thoughts. Most people report having no persistent difficulty tolerating their medications and, if problems do occur, there are many alternative medications available.

3. Address Mental Health and Substance Abuse Issues

3. Address Mental Health and Substance Abuse Issues

Consistent adherence to medication is essential because the HIV virus can quickly mutate if unsuppressed, resulting in drug resistance. In my experience, mental health problems and substance abuse are among the most significant barriers to adherence. Methamphetamine, a drug that is once again popular among gay men (a high-risk community), often results in drug runs that last several days during which no one is concerned about his medications. The same is true for other recreational drugs. People under the influence, despite their best efforts, will frequently miss doses. Therefore, anyone starting meds should be mindful of substance abuse issues. The same is true for mental health concerns. During the manic phase of a bipolar episode, for example, people rarely take their medications (or even feel the need for them). Likewise, someone experiencing depression may not care enough to worry about his or her meds. Anyone starting medications should work with health care providers to ensure that any mood disorders or substance abuse issues are as stable as possible.

4. Understand Access and Cost

4. Understand Access and Cost

It is important to review the options for obtaining one's HIV meds. Insurance often covers the cost of medications, although copayments can be high. Pharmaceutical companies have patient assistance programs that may defray the cost of such copays. State and local health departments have various programs to help those with limited incomes have access to HIV medications. However, this often involves many bureaucratic hurdles that can be frustrating and sometimes overwhelming. It is helpful for anyone who is newly diagnosed to work with case manager assistance when maneuvering the administrative details to ensure access to care.

5. Fight Shame and Stigma

5. Fight Shame and Stigma

While we have made tremendous progress fighting HIV-related stigma, it continues to impact anyone living with the virus. I have had clients who skipped their evening dose of medications because they were at a business conference and constantly around colleagues. Another refused to take his medications on weekends when he had custody of his children for fear they would ask about his pill bottles. Yet another refused meds all together because she lived with her mother and hadn't disclosed her status. In each case, stigma from external sources and internal shame about HIV impacted medication adherence. It is important for people starting meds to prepare themselves to experience stigma and work with their support system and health care providers to eradicate any shame they feel that affects their own sense of worthiness.

6. Become Proactive

6. Become Proactive

Steve, a client of mine, arrived for his therapy session one day and announced that he had begun taking HIV meds two weeks earlier without any problems. When asked what medications he was taking, Steve responded that he had no idea -- he just took what the doctor told him to take. Successfully living with HIV requires becoming proactive regarding one's own health care. Relationships with providers should be collaborative and the medical decision-making process should be interactive. It is important to have an understanding of all medications you are taking, their potential side effects and any drug-drug interactions (including with recreational drugs). Don't be passive about decisions that affect your health.

7. Maintain a Healthy Support System

7. Maintain a Healthy Support System

Medications alone are inadequate to live a healthy life with HIV. It is essential that a support system be developed that complements medical interventions. Being connected to others at various levels of intimacy, including one's spouse or partner, family, friends and community, is vital to help you maneuver through the various emotions, frustrations and victories that are experienced by someone living with HIV. Work to maintain that social connectedness and eradicate any shame or stigma that separates you from others. Share your experience and volunteer your time. Both you and your community will benefit.

The Next Step

The Next Step

It may help to keep in mind that taking HIV medications won't just save your own life; it will save others' lives as well. While antiretroviral medications are obviously essential to halt an individual's progression to AIDS, keeping one's viral load undetectable will also slow the epidemic. Because many people are inconsistent with their medications, or are totally unaware of their status, the viral load within some communities remains high. This significantly increases the chance of someone else becoming infected.

Many experts believe that the next few years represent a time-limited window during which we can get the virus under control. Several strategies have been implemented to achieve this, many focused on suppressing the virus of every individual living with HIV. That, of course, requires HIV medications to be taken consistently.

A New Day, A Remarkable Opportunity

A New Day, A Remarkable Opportunity

Starting HIV medications can be frightening, but it need not be overwhelming. It is a significant moment in our lives, and most of us clearly remember the day we took our first HIV medications. It is also a chance to be grateful for the opportunity these remarkable drugs give us for a long, healthy and happy life.




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