A new national survey shows that adherence to medication regimens for people living with HIV/AIDS is higher than originally expected. Some misconceptions about what proper adherence means, however, still remained among the patients surveyed.

“This survey shows an improvement in adherence based on past estimates across all diseases [approximately 50 percent],” said Dr. Judith Feinberg, professor of medicine at the University of Cincinnati College of Medicine and principal investigator at the University of Cincinnati AIDS Clinical Trials Unit. “Overall, I think patients today are doing much better with adherence … however, we need to continue to strive to better understand the different factors influencing adherence behaviors.”

“Americans are notorious for not adhering to their medications. It’s a battle,” said Bill Grimes of the Comprehensive Health Center in San Diego. Comprehensive Health Center offers the country’s only medication adherence counseling program through a series of seminars, forums and direct connection with the patients and doctors. “It’s very important for people to understand HIV can be a manageable disease if it’s managed.”

The survey, one of the largest of its kind to date, was conducted by Richard Day Research and underwritten by Bristol-Myers Squibb Company. The 403 Internet-survey respondents had an average of eight years experience taking anti-HIV medications, and 85 percent reported they understood how to take their medications properly, with 69 percent reporting complete adherence to their regimens.

Of those surveyed, 60 percent said taking their medication every day, on time, was much easier or a little easier than they expected.

Most survey respondents (87 percent) reported feeling a strong commitment to taking their pills as prescribed by their physicians.

To help manage adherence issues, one-third of survey respondents said working with their health care provider to find a regimen with a dosing schedule that best matches their needs was the top reason for how they became more adherent to their medications.

Additionally, 74 percent said their health care provider is their primary source for information about how to take medications properly.

Despite this positive attitude, not all the results were good news for the HIV/AIDS community. More than half (55 percent) thought it is acceptable to take their doses early or late, and almost one in five reported missing two or more doses within the past seven days.

This misconception can have a negative impact on treatment success. Full adherence to anti-HIV medications is critical due to the increased likelihood of developing resistance to the drugs, and, according to the U.S. Department of Health and Human Services (DHHS) HIV/AIDS Bureau Guidelines, “A treatment’s success can begin to diminish when patients are less than 95-percent compliant.”

“It’s very important for clients to adhere to their medication regime,” said Cindy Richardson, also of Comprehensive Health Center. “We find if they are able to adhere to a treatment regimen, that within six months to a year, [their viral load] is undetectable. If they are on and off, it causes their body to create a resistance to their medications.”

“If you miss your meds, they may not be able to work any more; ever,” Grimes added. “It’s taken them 20 years to get 20 meds. You can go through them all in a year or two by being non-adherent.”

Over two-thirds (68 percent) cited side effects or feeling ill as a major reason why taking HIV medications can sometimes be difficult. The main side effects influencing adherence cited by patients were fatigue, diarrhea, nausea, problems with sleep, depression and body shape changes. The DHHS guidelines also say “when patients’ regimens can be continually adjusted to be more effective and workable, the chance of adherence success has been found to increase.”

According to the DHHS guidelines, health care providers can and should adjust regimens to suit a patient’s lifestyle and should address other issues such as side effects.

“The key is to have the health care provider and patient tailor a regimen to suit the patient’s life, not for patients to tailor their lives to suit the regimen,” Dr. Feinberg said.

Regimen adjustments and lifestyle tips were among the top strategies cited by survey respondents for effective adherence. Working with their health care providers, 40 percent of respondents improved their adherence by switching to regimens with lower pill burdens; 33 percent by finding a regimen with dosing requirements that matched their needs; and 30 percent by switching to regimens with more tolerable side effects.

“Adherence is both the challenge of a lifetime and a challenge for a lifetime, and health care providers and patients need to work together every step of the way,” said Dr. Feinberg. “The provider-patient bond is fundamental for successful treatment of a chronic illness, like AIDS, and therefore should be a top priority for everyone involved in the circle of care.”

For a complete copy of the survey results, call (305) 572-2151. For assistance locally, contact Comprehensive Health Center at (619) 235-0305.