New Survey of People Living with HIV Shows Desire for Greater Doctor-Patient Dialogue about Treatment and Disease Impact

Survey Results Reinforce Need for Improving Communication between Patients and Doctors, a Goal of I Design HIV Education Campaign

WHITEHOUSE STATION, N.J., Sept. 9, 2013 /PRNewswire/ -- Today, results from an online nationwide survey of more than 300 people living with HIV on antiretroviral therapy show that participants are very involved in engaging with their healthcare providers in the management of their HIV; nearly all (97 percent) said that they are proactive about managing their HIV condition, including drug treatment. However, the survey findings also show that about three in four participants would like to spend more time discussing topics with their doctor about HIV drug treatment (74 percent) and the impact of HIV on their lives (71 percent) during doctor office visits.

Results of the survey, which examined the breadth and depth of communications between people living with HIV and their doctors, including level of preparation by patients for visits, content of discussions during visits and commonly used information resources, were released during the 2013 United States Conference on AIDS (USCA), the largest annual HIV gathering in the nation. The survey was conducted complementary to Merck's national HIV education campaign, I Design ( to help empower people living with HIV to have open and meaningful discussions with their doctors.

"The results of this survey are very encouraging, however they underscore the need for more in-depth discussions between people living with HIV and their doctors - not only regarding their treatment regimens, but also how the disease is affecting their lives overall," said Dr. Michael Gottlieb, Associate Clinical Professor of Medicine, David Geffen School of Medicine, UCLA. "Communication between healthcare providers and patients is the cornerstone of developing and maintaining a successful HIV treatment plan."

Key findings from the survey show that respondents are active about managing their HIV, with most indicating that they are proactive about making doctor appointments (85 percent), talking to their doctor about things that concern them (84 percent) and talking to their doctor about HIV drug treatment options (77 percent). In addition, more than half (56 percent) research HIV and HIV-related topics, and many (42 percent) talk to others living with HIV to proactively manage their HIV condition.

Respondents selected that they would like to spend more time discussing how their current HIV drug treatment regimen is working (40 percent), other HIV treatment options (30 percent), health conditions they have other than HIV (30 percent), side effects of their current HIV medications (28 percent) and taking their current HIV treatment as directed (13 percent). Respondents also indicated that they would like to spend more time discussing the physical impact of HIV on their bodies (51 percent) and the impact of HIV on their sex lives (26 percent), day-to-day lives (25 percent), mental or emotional well-being (29 percent) and relationships with their loved ones or family (15 percent).

"As someone who has lived with HIV for close to 20 years, I know there are numerous topics to discuss during each visit to the doctor, and can understand why many people may find it difficult to cover all of them," said Duane Cramer, renowned photographer and I Design campaign spokesperson. "Preparing for discussions with my healthcare provider by prioritizing what I want to discuss about my medicines, my other health conditions and relevant aspects of my life have been important factors to my HIV treatment plan over the years. This is what I encourage people to do as part of the I Design campaign."

Additional Survey Findings

Preparation for Doctor's Appointments

  • 79 percent of respondents reported they did something to prepare for visits with their doctors over the past year; specifically:
    • 62 percent prepared a list of questions or topics to discuss, 32 percent conducted background research on topics other than HIV drug treatment options, 25 percent conducted background research on available HIV drug treatment options and 17 percent talked to others living with HIV
    • One in five (21 percent) respondents reported they did not do anything to prepare for visits with their doctors

Patient – Doctor Communication

  • Overall, respondents understand the information their doctor shares with them about the management of their HIV drug treatment:
    • 39 percent indicated that they understand all the information shared by their doctor about the management of their HIV drug treatment
    • 53 percent chose that they understand a great deal of this information
    • 8 percent selected that they understand some of the information
    • No respondents selected that they understand "very little" information
  • Of the topics listed in the survey related to drug treatment conversations, only 3 percent of respondents selected that they did not feel comfortable discussing any of them with their doctor; survey participants indicated that they are comfortable discussing with their doctor:
    • How their current HIV drug treatment regimen is working (88 percent)
    • Health conditions they have other than HIV (82 percent)
    • Side effects of their current HIV drug treatments (79 percent)
    • Taking their current HIV treatment as directed (77 percent)
    • Other HIV drug treatment options (72 percent)

Additional Sources of Information

  • 74 percent of respondents have referred to other resources in the past 12 months to help them better understand the management of their HIV condition, including HIV drug treatment:
    • 55 percent utilized online resources such as news, websites, blogs or forums; 27 percent used medication reminders/trackers or checklists; 26 percent employed the services of an AIDS Service Organization (ASO); 18 percent referred to support groups/services; and 20 percent used a resource other than those listed above
    • 26 percent didn't use any resources beyond what their doctor shares with them or tells them
  • Respondents who have utilized the services of an ASO (n = 211; 67 percent of total respondents) indicated that they accessed the following: HIV education (50 percent), counseling (47 percent), financial assistance (43 percent), testing (37 percent), food bank assistance (34 percent), legal services (27 percent), AIDS policy (19 percent), AIDS activism (18 percent), housing services (18 percent) and substance abuse treatment or counseling (9 percent)

About the Survey

The survey was conducted online by Kelton, an independent global insights firm, from July 2 – 29, 2013 among 316 people living with HIV who are on antiretroviral therapy. Respondents were 18 years of age and older, and had a median age of 49. About half (46 percent) of survey participants indicated having been diagnosed with HIV for more than 15 years. Respondents represented varying demographic areas (Northeast, Midwest, South and West) within the United States. Results of any sample are subject to sampling variation. Support for the research was provided by Merck, Whitehouse Station, NJ.

About I Design

I Design is a national HIV education campaign led by Merck, notable fashion designer Mondo Guerra and award-winning photographer Duane Cramer aimed at helping to empower people living with HIV to have open and meaningful discussions with their doctors about their treatment plan based on their medical and lifestyle needs.

To learn more about the campaign, visit where you can download a conversation checklist, which offers tips on how to engage in an open and honest dialogue with your doctor; design a digital textile illustrating your approach to managing HIV; and view videos and photos. To help you track and manage your health, there are the "My Health Matters" and "My Positive Agenda" mobile and desktop apps. These easy-to-use tools help you track the symptoms of your HIV, set up reminders to take your medications on time, and keep a record of when you have taken them, which can serve to prompt you on important discussion points when you are with your doctor. For additional tips and to follow Merck, Mondo, and Duane's collaboration on I Design, join them on Twitter @Merck, @LoveMondoTrasho and @DuaneCramer.

Merck's Commitment to HIV

For close to 30 years, Merck (NYSE: MRK) has been at the forefront of the response to the HIV epidemic, and has helped to make a difference through our proud legacy of commitment to innovation, collaborating with the community and expanding global access to medicines. In the United States, we are helping to address healthcare disparities through educational programs and resources that align with the National HIV Strategy. Merck is dedicated to applying our scientific expertise, resources and global reach to deliver healthcare solutions that support people living with HIV worldwide.

About Merck

Today's Merck is a global healthcare leader working to help the world be well. Merck is known as MSD outside the United States and Canada. Through our prescription medicines, vaccines, biologic therapies, and consumer care and animal health products, we work with customers and operate in more than 140 countries to deliver innovative health solutions. We also demonstrate our commitment to increasing access to healthcare through far-reaching policies, programs and partnerships. For more information, visit and connect with us on Twitter, Facebook and YouTube.